I was quite young when I lost my spleen after suffering internal trauma in an accident. No one in my family had any idea about what the function of the spleen is and how losing it can mean limitations imposed for a lifetime. The internal injury took a long time to be diagnosed (almost all day long) and when that was done, there was no option but to remove it completely.
I have found that my immunity to common infections like coughs and cold reduced significantly, as well as to stomach infections, but I guess it varies from person to person. I underwent a long treatment to restore my immune system (or so I thought) and was under the impression that all was well.
However, one day while searching the Internet, I discovered that there was a fact sheet published by the Kent Splenectomy Trust containing information about post-splenectomy precautions and was shocked to discover many facts that no doctor had ever told me. Victor Matcham of the Trust sent me a fact sheet by post all the way from the UK. For years I lived under the impression that I had near-normal immunity but that was not the case. I had not taken many essential vaccines that are critical for an asplenic person.
Upon finding this out, I was prompt in getting all the vaccinations that I needed, and made the other precautions part of my life. I do not enjoy taking these precautions, such as watching for symptoms of dangerous infections, avoiding animals, and other things, but they are necessary for life.
So for those of you who have suffered the loss of a spleen, or know someone who has, please be aware that you are not alone and that help is available if you seek it. The spleen is not like the appendix, without any important function. It is an essential part of the immune system, and if you want to know more, you can find the fact sheet on this page of the blog. If you have more questions, please do not hesitate to contact me, either through this blog, or by email. Again, I am not a doctor, but just an ordinary person looking to help and inform others of available resources.
Life After Splenectomy 
Posted by Simon on May 27, 2011 at 5:57 pm
This is scary stuff if one is newly without spleen. I lost my spleen some 35 years ago as a result of a motorcycle accident. The observation I would make is this… In the first 5-10 years I seemed to get many colds and flu etc. Since then my resistance to cold an flu appears to have returned to similar to any other person. I take the penicillin only when and if I have a cold or other febrile illness. Otherwise I have lead a normal life and would not know I had no spleen. Simon
Posted by SummerSun on May 27, 2011 at 6:15 pm
Thank you for writing in Simon.Yes I have noticed something similar. I lost my spleen nearly 8 years ago, and would give anything to get it back. I found that I got frequent coughs and sore throats but it has reduced since moving to a place with minimum air pollution. But still I am always on the alert for any symptoms of illness that can progress to serious stages. I appear as a hypochondriac to others but one has to be careful of one's health since it's a lifelong risk.Did you get all your necessary vaccinations?
Posted by Delani on June 17, 2011 at 2:06 am
I just had my spleen taken out on Mother's Day (My first one at that). I was in a dirt bike accident and had the open surgery. I have had several surgeries in my life, so the surgery itself was not bad, although a c-section was easier by far. I have not been able to find out much info online about life after a splenectomy, so I am hoping to gain some insight from you blog. Where can I get this fact sheet you have mentioned? What sort of changed did you notice about yourself after the surgery? I feel as though my blood pressure is lower, as well as my blood sugar. My mood seems to be "blah"-like. I just don't feel like myself. I know it will take up to 6 months to heal fully, so I guess it's normal to still feel pain inside when I lay on my left side at night. I just don't really know what to expect. Can you help me please? I keep asking my doctor about life after, but I get a "nearly-normal quality of life" answer. I did get 3 vaccines before I left the hospital, though (Pneumonia, Meningitis, Hep)
Posted by SummerSun on June 17, 2011 at 3:58 am
Dear Delani, I completely understand your situation. I too had the same feelings post op, that is low blood pressure and blood sugar, and a lot of weakness. I tend to get dehydrated quite easily since then, and so I take Oral Rehydration Solution as well as juices and other liquids that increase the amount of fluid in the body when I exercise or when the weather gets hot. As for the low mood, it takes time to go away. In my case, I took a lot of iron rich foods. I would soak raisins, dates, apricots and almonds at night, and eat them the next morning. Your case may be different, but I developed mild anemia post op, and had to watch my diet carefully. Only this year was my iron low enough to take iron supplements under a doctor's guidance. It was also because my diet had become poor. I will email you the fact sheet if you could please drop me a mail at lifeaftersplenectomy 'at' hotmail 'dot' com. It contains information on lifelong precautions as well as vaccines that are essential. Are you taking regular antibiotics? They are very important in the first 2 years post op. I was not given them because my doctors were ignorant. You should consult your doctor about this. Take care of your health, avoid places where you may pick up germs like hospitals, crowded places, animals etc. Your body needs a lot of time to adjust to the lack of spleen, and needs to be carefully handled.
Posted by Michelle Abel on November 20, 2015 at 12:10 pm
thank you I lost my spleen 5 months ago and things have been quite a challenge. Doctors in my area don’t seem to know what to do with me or how serious this can be. Even a simple pimple on my chin gets infected and take weeks and weeks to heal .
I’m a dog groomer and this has been a challenge as well, I’ve lost clients because I have demanded that dogs be tested for intestinal parasites that can be passed zoo logically. I can’t seem to find info on other precautions
Posted by SummerSun on November 25, 2015 at 8:36 pm
Hi Michelle, if you can find a doctor who understands your situation that would be the best thing. You can ask them about a daily antibiotic that is recommended for the first 2 years post splenectomy. I’m not certain of why you have pimples that are not healing in time. I usually apply an antibiotic solution to any acne that shows up, and it seems to speed up the healing process.
The main danger from dogs that I know of is the bacteria they can pass on by biting you, or if their saliva comes into contact with an open wound. I’m not certain about the intestinal parasites. You might be able to avoid that by using hygiene precautions. Take care!
Posted by Delani on June 17, 2011 at 6:18 pm
I am not regularly taking antibiotics. My doctor didn't think I needed them. I know I probably should take them, but I have had Yeast Syndrome since I was 16 from too many antibiotics. Now my system is up the creek and I have to watch my diet from that. I have to get diflucan every time I take antibiotics b/c my body can't handle them. It's from the obvious yeast issues, to skin rashes, heartburn and acid reflux, vertigo, and about 50 more symptoms when I take them.I also have Lyme's Disease. I got that tick bite when I was 17. I had it treated within days of the bite/bullseye and have not had any flare ups, but I am scared that now I could with out a spleen. I am hoping that my body has built up enough antibodies for it, since it has been 11 years ago now.Are you aware of any forums for splenectomy patients? I have given up on searching online for information. I was hoping, like with your blog, others could be our best insight. Although it would not be medical advice, but maybe an outlet for support, similar experiences, and concerns.Thank you for your prompt response. I will send you that email with my email address!
Posted by Anonymous on July 13, 2011 at 2:31 am
Hi, i had my spleen removed 30 years ago following a car accident, it was fully removed and weighed 88gm. I have suffered for longer than a normal person with coughs and colds, i was constantly ill in my childhood. I have had many scans in the last 30 years and only recently did an ultra sound reveal i have a spleen?? Maybe an additional spleen was present or tissue left behind…nothing in the hospital notes. The soneographer was not very pleasant insisting i never had a splenectomy!!! Do i still need flu vaccinations??
Posted by Jen H on June 3, 2012 at 6:43 pm
If it is not completely removed, a secondary spleen can form…
Posted by ms ben on October 1, 2016 at 7:24 am
Hi can u confirm if u really have 2nd spleen?
Posted by SummerSun on July 13, 2011 at 5:47 am
This sounds like an extremely unusual case. The spleen is not known to have regenerative capacity as far as I think. Do you still have the surgery report from 30 years ago? You could show that as proof to the sonographer. Sometimes doctors leave behind a part of the spleen if it can be saved but even those patients are advised to take all necessary precautions since immune function is lowered. An additional spleen would probably have been noted in your surgery report since it is highly unusual.It would be best if you consult with a qualified doctor about this as soon as you can. Since flu vaccinations are recommended for general public as well, there may be no harm if you continue to take them.
Posted by Kathy on August 28, 2011 at 4:00 pm
I am getting ready to have my spleen removed. During surgery for an ovarian ectopic pregnancy, it was discovered my spleen was abnormally large. Now, I am trying to find out information of what will happen after my spleen is removed. My doctor has informed me I will need to get a pneumonia vaccine and flu vaccine. He also let me know I will have to be careful about food prep and to be careful with eating certain foods at picnics such as macaroni salad, potato salad, and anything else that can grow bacteria while it sits out. I figured if I received information in advance, then I could deal with it better later on. Thank you for posting your blog.
Posted by SummerSun on August 28, 2011 at 4:23 pm
Hi Kathy,I am sorry to hear that you will need your spleen removed. It's good that your doctor is informing you about the consequences of removing it, unlike some doctors out there who make false claims that it will make no difference whether the spleen is in the body or removed.Is there no way that the spleen can be made to reduce in size? Perhaps you can find out some information about that or get a second opinion. Because it is a vital organ and when you want to get pregnant later on you will have to be very careful, and may have to take regular antibiotics. I am not part of the medical profession, but after experiencing the loss of the spleen, and all the troubles that come with it, my only advice would be to explore all possible options before you proceed with the removal.Of course, if it is a danger to your life that it could rupture since it is abnormally large, then doctors would definitely want to remove it. Proceed with caution is what I would advise. If you email me, then I can send you the fact sheet with all the details and precautions for asplenic people, and people who will undergo a splenectomy soon.
Posted by Anonymous on July 16, 2012 at 1:49 pm
Hi,I had my spleen removed a little over a year ago. It ruptured spontaniously due to a benign tumour and had to have an emergency op after losing 2.5 litres of blood. I have a large scar but a small price to pay i think.I cant say i have fallen ill much since but i do notice that i'm always tired, look pale and have low energy levels. Does anyone else feel like this? i was taking iron tablets that were prescribed after the op but not since. Should i be taking Iron tablets?any advice would be appreciated x
Posted by SummerSun on July 21, 2012 at 6:40 pm
Hi Anon,My blog has been moved to wordpress.com and the address is given in the last post on this blog.I have not done any research on this but I noticed in myself that my iron levels went down after surgery. I would take B12 and multivitamins to help with it, as well as eating iron rich dried fruits like dates, raisins, etc.A year was not too long ago and I think the body is still getting used to not having a spleen. Have you spoken to your doctor about this? He/she would be the best person to advise you.Take care!
Posted by corinne on August 16, 2012 at 7:25 am
I lost my spleen at age 17 and am now 52. I was told It would disturb my pregnacys but I am prould to say I gave birth normally to % children the first at age 20 premature at 28 weeks. What I will tell you is that I never have colds flu or influenza I am free of that and I wasnt before I got my tonsils removed at 30. I have many allergies though that I am told due to my spleenectomy and that is to most antiobotics and all inflammatories. I am also allergic to most red dyes in all forms. I have to have a Epipen at all times that keeps me from going into antiflayctic shock.Unfortunately I have arthritis,syatic back pain all over my body and tylenol is my only answer because most steroids cause a reaction too.I get the shot for bacterial and vireal infection every 5 years and if I develope a fever for any reason Off to the hospital immediately. Fortunately I have a doctor that has known me for a very long time and was able to see the medical and physical changes with me. I have almost died twice because of the inflammatories and not knowing. So my advice to all without a spleen any symptom that is not normal have it checked out right away because the spleen is important when immunity is a issue. If you ingest something and you feel not right it is probably because of your abscense to the spleen. Take high doses of vitamin c and keep benedryl by your side at all times.I am not alone I have a friend who also cant take antiobitics except a few like me and the allergies are aweful. The vaccinations are so important and many people who dont have spleens dont know that. So get the shot if you havent had one and find a doctor that cares.
Hi Corinne,It’s tough to be without a spleen and not be able to take antibiotics. Antibiotics have a bad reputation for being overused by people who don’t need them, but for asplenic patients (among others) they are life savers. I assume you are talking about the Pneumovax vaccine that you get every 5 years. It’s good to know that you are aware of the need for it. I hope that you also get your annual flu shot. The flu if not treated in an asplenic patient can lead to pneumonia which is very dangerous, thus making the flu shot vital.
Posted by Anonymous on September 4, 2012 at 6:23 pm
I had my spleen removed with the distal portion of my pancreas because I had a benign tumor in my pancreas. My doctor gave me no choice and told me I could do without it.
Strange that he said you could do without it, as if it were the appendix! I hope that you were advised on all the precautions that are necessary while living without a spleen. How are you coping without it?
Posted by Ally Morrow on October 13, 2019 at 2:25 pm
Hello,
I have just had my spleen removed on the 9/10/19 due to a tumour in the pancreases.
I’m so scared of getting an infection and dying.
I have fact V blood clotting also. I’m so overwhelmed at the moment.
Thanks Ally
Posted by SummerSun on March 23, 2020 at 12:19 am
Hi Ally,
I hope you have had all the recommended vaccinations. With the right precautions you can live a fairly normal life. Please download the fact sheet from this blog to see what you need to do going forward. Take care.
Posted by Anonymous on September 10, 2012 at 2:52 pm
I too, had a distal pancreatectomy and spenectomy due to a pancreatic tumor (in Aug 2011). Since then, I have felt constantly exhausted, have had several infections and commonly come down with colds, 'bugs' and 'viruses'. I have also developed restless leg syndrome (Jan 2012) although blood tests show that my iron and B12 levels are normal.
Have you taken all essential vaccinations as well as daily antibiotics? Daily antibiotics are recommended for the first 2 years post-splenectomy to avoid life threatening infections. Restless leg syndrome is not tied to any major health issues as far as I know, so it’s probably not something you need to worry about.
Posted by amy on February 1, 2017 at 8:55 am
Hi, I also had a splenectomy following a benign distal pancreatic tumour removal. I lost my spleen due to the fact that the surgeon wasnt able to resect the pancreatic vessels away safely due to my lack of fat and anatomical layout. That was just over a year ago now. At the time I was a fit newly wed so the drop in energy I have experienced since surgery was the biggest adjustment. I am greatful I was able to take the necessary vaccines before surgery and to date have avoided any infections, despite working in a hospital. My gp and surgeon both advised me against taking daily antibiotics but i do have a supply that I have with me incase the need arrises,
It is interesting to read that some people have suffered lowered blood pressures and sugar levels as I actually fainted recently. It is hard to know if this was attributed to from my previous surgeries or if in fact it is pregnancy related as I was 14weeks pregnant at the time and is a symptom not uncommon in pregnancy apparently(!)
I suppose the biggest life changer for me is becomming more hyper vigilant when it comes to being around potential germ sources, Good handwashing and an awareness of things and people that come into close proximity, esp of my face I feel have helped reduce alot of risk. I am also actively trying to improve my gut health through diet and probiotics and am taking minerals and vitamins, as naturally as possible and supplementing when necessary too.
To be honest I am a little hesitant with travel plans in the near future anyway, preferring to stick to cleaner destinations with well established and accessible healthcare. One day I hope I can brave the 24hr airconed flight ride to Europe and enjoy our postponed honeymoon but for now I’ll focus on my pregnancy and try to stay as healthy as I possibly can for my winter baby.
Posted by Shubhashish on February 27, 2017 at 8:57 pm
Please send me your email id . I have some confusion as my wife gone through splenectomy. I need your help.
My email: bhaktamelt@gmail.com
Posted by Anonymous on February 28, 2017 at 4:14 am
I had my spleen out Nov 17, 2016 and yes, my scar hurts at times. If I stretch or move a certain way, or sometimes for no reason at all. If I touch the scar, it hurts as well. I had an open splenectomy. and parts of my scar are still hard.
Posted by Jennifer on October 31, 2017 at 2:43 am
I had an open splenectomy as well, in May 2016. I have about a 14 inch scar (shaped like a flux capacitor from Back to the Future) and the whole thing is keloid and hard. Totally blindsided by the terrible scar I was left with. I’m thinking of trying some kind of tattoo to surround it and make it perhaps a little less scar-like and more art-like, but I’m not sure if I should try a tattoo since I’m prone to getting keloids. I never had that issue before with scars, but then again, this was my first ever surgery.
Posted by SummerSun on January 13, 2018 at 5:32 am
I’m so sorry to hear that you’ve been left with such a huge reminder of what happened to you. I think a dermatologist would be the best person to help you out with improving the appearance of it. And I agree that tattoos could carry a risk of further scarring. I hope you find some kind of resolution to this.
Posted by SummerSun on June 7, 2017 at 7:36 pm
Hi shubhashish, my email is lifeaftersplenectomy ‘at’ hotmail ‘dot’ com
Posted by Chelei on October 14, 2012 at 8:11 pm
I had my spleen removed at age 17 after a bad automobile accident. My Doctor then & now have always made sure that I have a Pneumovax shot every five years. They said there was a certain type of Pneumonia that if I ever contracted it there would be no medicine that would be able to help me. So every 5 years I get the Pneumonia shot, and every year (or 2) I get a flu shot. I have been hospitalized twice for pneumonia when I let a cold get the best of me and it went into my chest. I know ahead of time to not ever think I can "wear it out" and my Doctor will prescribe me a Z-pack when I have my first symptoms and that seems to do the trick.I too have had examinations, MRI's & CT scans as well as an ultrasound, and I've been told that the pieces that may have been left in my abdomen may have grown back (spleen does regenerate). I'm not a doctor but the way that I understood it was that I have spleeny pieces in my abdomen, but no spleen.Other than what I've mentioned above I have been amazingly healthy for the 41 years since the Splenectomy. I've had 3 normal pregnancies and eat anything and everything I want. The older I get the more particular my body gets about what it wants me to have, but I don't think it has anything to do with the spleen. I have always been told that you could live without it, so I believed it, and here I am!
Posted by SummerSun on December 6, 2012 at 4:22 am
Hi Chelei,I didn't see your comment until today because I focus on my WordPress blog. It's good to know that you are living life without too many hesitations even without a spleen. I aim to do the same in my life as well. Great to hear that you take your vaccinations at the correct time intervals. Research has proven that asplenic patients who are aware of the need for vaccinations as well as other precautions are more likely to not have dangerous infections, or to overcome them.Take care!
Posted by Sean Slindee on January 10, 2013 at 5:48 am
I do need to mention to the folks reading this site that losing your spleen can seem somewhat uneventful and no big deal. I lost my from a car accident over 20 years ago. I never had any issues at all until 3 years ago. I went into work at 8am and felt perfectly fine. At 9am I went to a meeting and before 10 am I felt like a real fever was coming on and I was shaking like an addict in rehab. I went home and picked up theraflu on the way. My wife checked my temp and it was 103. I went to bed. The fever never let up. I got up at 3 am and went downstairs to get some water. I drank the water and told myself I couldn't make it back up the stairs. So I sat in my recliner and that is where my wife found me at 10 am. I was unresponsive and was in full septic shock with nearly no measurable blood pressure. I will not go into a lot more details but the ER doctor saved my life and two weeks later I left the hospital. I nearly lost my hands and feet to amputation due to the severe hypotension. I'm not sure how I picked up this infection in my blood, and but I can tell you that it nearly took me out completely in less than 24 hours. A little research after all this showed me that infections like mine will move through my body 600 times faster than someone with a spleen. The main point I wanted to make to everyone out there is that PLEASE pay attention to any sickness you may have and especially if it comes with a fever! Never let your guard down like I did.
Posted by SummerSun on January 12, 2013 at 5:27 am
Hi Sean, it's great that you recovered successfully. You were lucky but not all asplenic patients have the same luck. That's why on my blog I repeatedly emphasize the importance of not ignoring an illness. Many people, I suspect, hate to be judged as hypochondriacs and avoid getting medical help. Do you take any regular preventive vaccines?If you are interested in reading more of my posts, my blog has been moved to WordPress. The URL is in the last post on this blog.
Posted by Anonymous on January 14, 2013 at 10:10 am
I lost my spleen when I was 11 years old – due to trauma…bike accident handle bar flip (very common actually). I underwent emergency surgery and had major complications from inverted scar tissue for the few years that would follow my splenectomy. I am 34 now. I will say that I have skin allergies all the time. I had bronchitis a bunch of times for the next 15 years but now I haven't been sick (not even a lasting cold) for 3 years. It's kind of amazing actually. I don't really do anything differently – I try to eat healthy and I rarely eat red meat. I am concerned about having a child in the future though, not necessarily because of the loss of my spleen but because of the scar tissue that formed after the emergency surgery. It wrapped around my small intestine and 3 ft had to be removed of my s.i. – crazy huh? I am concerned that this could cause problems during any pregnancy and birth.
Posted by SummerSun on February 1, 2013 at 2:13 am
Hi Anon,I have experienced the pain of scar tissue as well, but after examination by two excellent doctors, I was told it was nothing to worry about, and surgery was not necessary. It's quite possible that a pregnancy can cause more problems for you. If you have a tendency to form scar tissue after surgery, then a natural childbirth would probably be best. It would be the right thing to consult a doctor before planning to have a child, because you don't want to run into unexpected problems midterm.
Posted by Anonymous on February 8, 2013 at 10:04 pm
HiJust wanted to clarify: about 10% of people have "accessory" spleens in addition to the main spleen. Some of these people may have more than one accessory spleen. These accessory spleens are much smaller than the main beast and are sometimes left behind after a spleen removal. This explains why some people retain a spleen after removal of their spleen!
Posted by AAnderson on March 15, 2013 at 3:04 am
Hi, I had my spleen removed 1 year ago. It was very random. I was having stomach pain, side pain when lying down, weight loss, and nausea. After a sonogram was done, I found out I had a splenic artery rupture which caused a softball sized cyst to form inside of my spleen. I've never been in a car accident or had any type of injury that I can think of. I had a complete splenectomy and was cut from my breastbone to below my belly button. My question is…does anyone else still have pain on their left side? Will this go away?
Hi AAnderson,Yes it’s possible to still have pain on the left side where the spleen is removed. I don’t know what the statistics are but I do experience pain more than 9 years after the surgery. Mine is from scar tissue from an incision that did not completely heal. The incision was made to insert a pipe to remove pooling blood. However, I’ve been told that it would not be a simple operation to get rid of the pain so I live with it, and since it is only occasional it’s not a big deal anymore. Your cause of pain could be different from mine and I strongly suggest you get it checked out by a good doctor.
Posted by Michele G on September 24, 2013 at 4:01 pm
Hi! I had almost exactly the same symptoms as you. I had my spleen removed January 2010. I was told that my spleen was the size of a small football and they almost couldn’t get it out, even with the use of a rib spreading machine.. 5 months after the surgery, I was experiencing pain in the same spot again. My doctor said stretching was the key. I started doing a 10 minute yoga workout every morning and I do not have the pain anymore.
Posted by Katelyn on March 16, 2013 at 7:27 pm
I had my spleen removed because of a car accident my rib broke and punctured then ruptured my spleen. i also have a large scar from my Breast bone to in between my hip bones straight down. I lost 4 units of blood before making it to the hospital and they had to pump 15 in while doing surgery. this happened just this last November. I've noticed I've been getting allot more sick more frequently. They gave me shots in the hospital but I don't remember what i don't remember the hospital or the accident. but my question is i know it'll take six months to heal completely but is it safe to get pregnant again just after six months? Considering how big and long my scar is? Thank you in advance for the help your blog is awesome they didn't tell me much of anything at least not much i remember.
Hi Katelyn,I would definitely find out what shots they gave you in hospital and keep track of when (or if) you need to take booster shots. It’s possible that immunity will take time to build up again. The first 2 years post-splenectomy are when you are at the greatest risk for serious infections. Generally a daily antibiotic like penicillin is prescribed in those years.I’m not familiar with pregnancy dangers after scars from major surgeries but your doctor should be able to guide you with that. I would think that until you are in good general health (no weakness, frequent illnesses, etc) it’s best to wait until you get pregnant again.
Posted by AAnderson on March 17, 2013 at 7:57 pm
My surgeon said it was fine after 6 weeks! However, I was way too nervous and waited. I had my splenectomy March 2012 and I'm currently 11 weeks pregnant with my third child. My OB is not concerned and I haven't had any incision pain. I would think as your tummy gets bigger you may have some pain from scar tissue but nothing unbearable. I hope this helped!
Posted by Trish on March 29, 2016 at 2:09 am
I had my splenectomy the same month and year as you. I’m wondering how your pregnancy went. I still feel tenderness 4 yrs later, so I’m nervous about getting pregnant and causing some damage in that area when my belly grows.
Posted by SummerSun on April 6, 2016 at 11:14 pm
Hi Trish, the comment you are replying to is a few years old, but hopefully you get a reply. I have some pain too where a drain was placed on the side of my abdomen (even after many years), and my plan is to consult a surgeon before trying to get pregnant.
Posted by Marilyn Davis on July 16, 2017 at 5:57 pm
Yes I had my spleen removed Jan.this year and have gained weight , although I am eating healthy foods,I feel terrible about it.
Posted by Anonymous on March 24, 2013 at 1:15 am
My daughter had her spleen removed 22 years ago due to a severe car accident. She eats healthy, exercises regularly, but struggles to keep her weight under control. She usually carries 30 lbs. of extra weight. I feel sorry for her, because she tries so hard and gets depressed with her weight. Anyone else experience these symptoms?
I’m 9 years out but I have no problems keeping weight down. I couldn’t say if there was a relation between getting a splenectomy and weight gain. Good luck and good health to your daughter!
Posted by 78a4d972-96d5-11e2-9537-000bcdca4d7a on March 27, 2013 at 11:57 am
i lost my spleen a little over two years ago, due to a neglected MRSR infection that went ignored by my doc. by the time it was discovered in the ER after a months worth of fevers.. my spleen was destroyed and had to be removed. i havent had the troubles with my immune system as it seems others have (got the flu over xmas this past year and it only lasted 3 days and only 1 cold since the surgery) but weight gain seemed to go hand in hand with it. when i went into the ER i weighed 118 pounds, when i left the hospital a week later, i was at 145. was told it was the normal bloating from surgery and would go away within a week or two. it didnt. within 6 months i was up to 200 pounds. ive had my thyroid checked, regularly say every 3-4 months they run blood work on me, and its always been normal, along with every other test thats been done, all normal. the docs are dismissing it that im over 40.. and apparently everyone over 40 is overweight o.O and i MUST be eating more than i say (so im old AND a liar) no matter what i do with diet or exercise, i keep gaining (last check i was 228) i havent any idea what to do anymore and none of the doctors ive been seeing are being helpful
Posted by SummerSun on April 8, 2013 at 1:32 am
Hi there, I have gotten an email from another reader as well about weight gain post-splenectomy. I haven't experienced it myself so I can't really advise you about it. I would suggest that you go to a specialist for a solution to this problem (an endocrinologist perhaps). If your thyroid levels are normal, there must be something else going on which your doctors aren't able to figure out. There's no reason to just accept weight gain and let it be, because it can be dangerous in the long term. Don't give up, remember doctors 'practice' medicine, so you must do your best to find the right doctor. Good luck and good health to you!
Posted by Anonymous on April 14, 2013 at 11:21 am
Hello SummerSun. My husband had his spleen removed maybe 11 years ago. He is now 29 years old. Additionally he is treated for Crohn's disease for many years. Last November 2012 he took a vaccinations against cold and 1 week ago he was admitted to the hospital with very bad virus. I believe if he would not take that vaccine, he would maybe not get it and if so, maybe not in such a strong intensity as he got it last week. What do you think about that? Thanks a lot for response. Laura
Posted by SummerSun on April 21, 2013 at 12:46 am
Hi Laura,I'm not sure what you mean by a vaccine for cold? Do you mean the influenza (flu) vaccine? As per the information on the vaccine information sheet, the flu vaccine cannot cause the flu because it contains a dead virus not a live one. Even the nasal spray vaccine only causes a bout of sniffles at the most. It was most likely a coincidence that he fell ill soon after getting the vaccine. The vaccine is essential for asplenic patients because influenza can lead to serious infections like pneumonia which can overwhelm the immune system. It's best to ask your doctor before deciding to discontinue a regular vaccine. Hope this helps!
Posted by gwill07@yahoo.com on June 24, 2013 at 1:48 pm
I lost my spleen approx 6 years ago due to a repeat complex cyst that caused internal bleeding as well as my spleen actually grabbing on to all of my abdominal organs like an exploded gum bubble in my torso. It was a total freak thing and the surgeon wrote about me in the New England Journal of Medicine as they had never heard of such a sequence of events with a spleen before. I had to have an open splenectomy with my stomach, pancreas, intestines and other organs clipped. I had to have a drain for 4 weeks after the surgery. I now have constant diarrhea and nausea with frequent vomiting in the morning and evening. I have had a battery of testing done which came back inconclusive. I was left with the answer "well, this will be your long term effect of the splenectomy." I am miserable every morning and night and feel very ill most of the time. I have had all of my vaccinations they recomend for this procedure. I am 34 yrs old and feel like I am about 75. I am curious as to whether I am the only one with these lasting effects and if I will have to suffer like this for the rest of my life. I am very unhappy and not sure if anyone has any insight or similarities in their experiences?
Posted by gwilly07@yahoo.com on June 24, 2013 at 5:40 pm
I will also add that I get common skin problems now as well that never happened to me before the splenectomy. That is much more tolerable than all this abdominal upset though.
Posted by Anonymous on June 26, 2013 at 2:03 pm
I had my spleen removed back in September of 1991 after a really bad cycling accident. My condition was so bad that I had to have a blood transfusion. This was just after the scary days of the tainted blood scandal. I had been really sick most of my childhood due to nutritional problems. It was a real kick in the nuts to get hurt and return to poor health after entering my teens in good health. For the first couple of years I had absolutely no energy. I lacked any ambition. I felt as if I was catching every cough, cold and virus that came along.
When I started college I became even less active and started putting on some weight. In my early 20s I was out enjoying some beer and chicken wings with friends and began getting terrible pains in my lower abs. The next morning I went into the hospital and had my appendix removed. They were very cautious with me when they learned that I don’t have a spleen. When I recovered from the appendectomy I completely stopped drinking. Which was probably the best decision that I have ever made. (Not socially though)
About two years ago I came down with a really nasty virus. I spent several days in bed with a fever and sweats before going to an emergency clinic. I had all sorts of false positives for a variety of conditions including hepatitis and high iron. A few days later I picked up another virus and had to go back to the emergency clinic. When I recovered I was re-tested and given a clean bill of health. But I knew that living without a spleen wasn’t just business as usual. Combined with my previous poor health as a child I really need to improve my diet as I approach 40. And I am considering getting a Medic Alert bracelet so that in the event of another accident people are aware of my condition.
I don’t know how many times I have been hiking through a wooded area or in a ravine without telling family and friends where I was going. I feel like such an idiot now.
Posted by SummerSun on July 23, 2013 at 2:59 am
Hi there,
It certainly is not easy to live without a spleen, and difficulties are compounded by the fact that it’s a relatively rare condition so most healthy people don’t understand what it’s like. It sounds like you are aware of the precautions that need to be taken, and that’s the good part. Exercise has been proven to help with immunity so that’s something you can focus on too. Medic Alert sounds like a good investment as well.
Posted by Sean Webb on October 15, 2018 at 8:32 am
I thought that I might search out this post and see if anything new had been posted. Last year I ended up in the hospital for three days with pneumonia. Spent another couple of weeks being treated as an outpatient and then several weeks recovering before I returned to full strength and function. It was pretty scary.
Posted by SummerSun on August 12, 2019 at 11:46 pm
That sounds pretty scary. I hope you are doing well now!
Posted by SummerSun on July 3, 2013 at 5:27 am
Hi GWilly,It sounds like you are going through a very tough time, and 6 years is far too long to experience all these health problems. I would think that the constant diarrhea and vomiting is depriving your body of essential nutrients, thus making you weaker. I personally developed a very sensitive stomach post-splenectomy. Foods that I had once eaten without any problems at all made me feel nauseous and gave me an upset stomach. Foods that were cooked in solid vegetable fat (common in my culture) were no longer acceptable to my digestive system. I also became extremely vulnerable to any kind of contamination in food, and as a result had to give up eating at most restaurants. However, nothing as extreme as in your case has happened to me. In my case as well, doctors had nothing much to offer me, besides antibiotics. The problems phased out over time but I am cautious to only eat hygienically prepared food. I would also credit a regular vitamin supplement of B complex with the improvement in my stomach health. I don't know if you have ever tried it, and I'm reluctant to give anecdotal evidence as advice, but perhaps that's something you could try.Also, your nausea may be a result of an inner ear problem. Has that ever been checked out? Not all nausea is a result of digestive problems.
Posted by Anonymous on July 4, 2013 at 12:01 pm
Hi I had my spleen removed october last yr after a massive bleed from a gastric varice. The concept was to reduce pressure into the liver .After recovering from the surgery and massive blood loss etc I have noticed my skin is really prone to spots and i'm tired all the time. My hair gets greasy super quick too.( I should add i'm nearly 40) Anyone else having adult acne after spleen being removed?
Hey there,I personally did not notice it in myself, but what you’re experiencing could be a result of the stress of surgery. If you are still feeling tired one year after the surgery, you should probably get a blood test done to find the answer. Proper nutrition is extremely important post-surgery, and I encourage you to take care of that aspect.
Posted by Anonymous on January 27, 2017 at 2:42 pm
I had my spleen removed two years ago from a car accident. One symptom I have noticed in an increase in acne. I am in my early 40’s and had not had issues for years. only connection I can make is the Splenectomy. I also notice it takes longer for the acne to clear,
Posted by gwilly07@yahoo.com on July 5, 2013 at 3:14 pm
Thanks Summer Sun! Great idea with the vitamin B. I did have a deficiency in that a couple years ago – perhaps that's back again. I will try taking a daily supplement (can't hurt!). I did have my ears checked out and I have to see a GI on the 16th so hopefully he can offer some other advice and/or help me through this. I am so glad to have found this website. I was feeling rather alone in this journey and it's nice to see others have similar issues. (Not nice that others are suffering, just that we are not so alone.)
You’re very welcome. Considering the symptoms that you’ve described, a supplement in the form of a pill may not be properly absorbed, so a vitamin injection is what some people get instead. That’s just something I’ve heard about and it’s the doctor’s decision ultimately.I think there are far more asplenics in the world than we realize – it’s probably that people with the condition don’t talk about it much. Good luck at the GI!
Posted by jen123317 on July 6, 2013 at 12:14 am
Hello I am about to take my spleen out the doctor recomended me to do so due to my auto inmunne hemolic anemia (my enlarged spleen its destroying my red blood cells ) so I am always anemic the doc said my life would improve after taking it out no more anemia to be honest I am scared because I know ur prone to infection so here I am researching the lives of people with out spleen
Posted by SummerSun on July 15, 2013 at 4:16 am
Hi Jen,It's true that being asplenic reduces immunity to certain diseases, but hopefully your doctor knows what he/she is doing. Being chronically anemic is a serious condition as well, and you certainly can't continue living like that. If all options are exhausted and your spleen must be removed, make sure you get the essential vaccines BEFORE the surgery. Take care!
Posted by Thenewpac2001 on July 21, 2013 at 3:50 am
I have a cyst the size of a watermelon growing on my what they say looks like the spleen. July 31st I will be having a splenectomy. The more I Google, the more I worry. I'm most worried about forgetting to ask a question, or forgetting to get a vaccine. I worry that I wont recognize a symptom afterwards and not going to the hospital when I'm suppose too. I am so energetic, will that change???
Posted by SummerSun on July 22, 2013 at 12:55 am
Hi there, I'm sorry to hear that you will be having a splenectomy. If it's due to be removed on the 31st, you should have got the necessary vaccines already. Have you been given any yet? If you like, I can send you a fact sheet containing information on precautions to be taken before and after a splenectomy. A splenectomy is a major surgery, and one should not expect to be very energetic in the following months, but you will be able to bounce back as long as you are taken care of by your doctors. Proper nutrition is very essential as well. Please let me know if you would like more information. Take care!
Posted by Thenewpac2001 on July 22, 2013 at 2:01 am
Well I have a PreOp the 24th, so if your telling me I need the Vaccines, you think they will give them at the PreOp?? I will take information you can give me. My email is thenewpac@gmail.com. I feel like I dont know about anything, going into this. It happened so fast. I had the first appointment July 17th with surgeon and he wanted to do surgery on the 31st. I don't want to go into this unprepared!!!
Posted by SummerSun on July 25, 2013 at 3:25 am
I'll email you the fact sheet now and you can discuss it with your doctor. Hopefully everything will go fine for you.
Posted by Thenewpac2001 on July 26, 2013 at 2:11 am
Can the vaccinations be given after splenectomy??? We are.less.than a week away and when I called.and asked, i.was imformed I.could.get.them.after
Posted by SummerSun on July 26, 2013 at 3:06 am
The pneumococcal vaccine should ideally be given two weeks before the operation because the body may not produce an adequate immune response in the absence of the spleen. This is what I've read in the medical literature. I suggest that you meet your doctor in person and discuss your concerns. Many times as patients, we may feel intimidated to cross question the medical people, but I think it's important to be a partner in your treatment, not just a receiver.
Posted by Anonymous on July 27, 2013 at 11:01 am
Okay I dont want to sound rude or anything I lost my spleen 10 years ago in a go-kart wreck. I've got sick once in those 10 years and it was for a day. Your making this sound like one of the most tragic and life changing things that could happen. I was supposed to take penicillin till I was 18 quit taking it when I was 15. Before I had it removed I got walking pneumonia 2 or 3 times.I even door cigarettes and drink often. Pretty much what I'm saying isIjust live your life like you would if you didn't lose it just when you start to get sick keep an eye one it. Life's too short anyway why waste it being scared of getting a little common cold.
The common cold is not a danger; it’s other bacteria that can prove dangerous. If you wish to ignore the advice of published medical research, that’s your choice to make.
Posted by Anonymous on July 28, 2013 at 1:36 am
Can you please email me the fact sheet you are talking about, my email is kchapina4 ‘at’ gmail.com I had an splenectomy done 3 weeks ago and my stomach still bloated is that normal? I'm so glad I came across your page and reading those messages make me feel better, my doctor never talked to me about taking antibiotics after surgery he also never talked to me about the danger of having it out.
Posted by Terri on March 29, 2017 at 7:02 pm
I would like a copy of the fact sheet info. I am about to have my Spleen out for an auto immune problem. My email is Teresa1417@aol.com. Thanks!
Posted by SummerSun on July 17, 2017 at 4:28 am
Hi Terri, I’ve emailed the fact sheet to you.
Posted by SummerSun on July 28, 2013 at 5:24 am
Hi there, I will send out the fact sheet to you. I'm not certain why you would have a bloated stomach, but you should definitely get it checked out if it's a concern.
Posted by Rich on August 1, 2013 at 9:10 pm
I have been without a spleen for 16 years with absolutely no ill effects at all. I rarely ever get a cold or any ailment. I feel fortunate to be able to say this.
Posted by SummerSun on August 12, 2013 at 1:07 am
You certainly are fortunate. However, I would caution against letting your guard down because susceptibility to infections increases with age.
Posted by Anonymous on August 2, 2013 at 8:12 pm
i lost my spleen when i was 6 years old due to falling off a wall , i am now 65 years old and i have never taken anything
Posted by SummerSun on August 12, 2013 at 1:05 am
Great to hear that things went well for you. 🙂
Posted by nicole on August 9, 2013 at 5:04 pm
hello all i just got my spleen removed a week ago do too ITP and i have a cold already smh listening to you all i hope in due time my immune system will be back to normal. i havent been back to work and i work in a school im so nervous about that with all the germy kids and all. and to the person who said there stomach is bloated its most likly gas my stomach was still is a lil but a nurse at the hospital told me they blow your stomach up while doing surgery putting a lot of gas in your stomach try drinking hot water to relieve it
Posted by SummerSun on August 12, 2013 at 1:05 am
Hi Nicole, I wouldn’t worry too much about a cold, it’s dangerous viruses like the flu that you need to take precautions against. You would definitely need to be careful around children. I’m not sure how you would manage it because I don’t know your working conditions, but do try and take precautions. I would be more concerned about animal and tick bites though, which can turn deadly if not taken care of.
Posted by Becky on August 10, 2013 at 6:00 pm
Hi there!! Just found this blog and thank you for the valuable information. I have been without a speen for thirty years and have taken an antibiotic capsule daily during that time. No illnesses to report! I was talking with a friend who recently had his spleen removed and he said the one thing he will miss is eating sushi. Dr told him no more sushi for life. I have never seen that information. Could you be so kind to send me the Fact Sheet? Thank you…… Becky
Posted by SummerSun on August 12, 2013 at 1:01 am
I’ve emailed you the fact sheet. Do write back if you have more questions.
Posted by Walter Butler on July 18, 2018 at 1:38 am
I have been advised by my doctor to have my spleen removed because of my ITP problem. I have been treated with Steroids and they seem to be effective for only a short time. I would like to have your fact sheet emailed to me also. I would really appreciate it. My email address is wbutlerjr@neo.rr.com
Posted by SummerSun on February 11, 2019 at 4:52 am
Hi Walter, I’ve emailed the fact sheet to you.
Posted by Deanna on August 22, 2013 at 4:16 am
Hi all,
As a teenager I had moderate intermittent stabbing pains in my left upper quadrant into my upper back and was told that I had an accessory spleen (turns out it’s common in 10-20% of the population) but that it was no big deal and would just hurt a little bit when I got ill. A surgeon wrote it off and I carried on my way for about 10 years or more. In October of 2012 I began having moderate to sever stabbing pains in my left upper quadrant of my abdomen. I saw a doctor who told me that I just had costrocondritis
Posted by Deanna on August 22, 2013 at 4:38 am
Please pardon my previous post’s incompleteness.
Because of a change in the type of pain I had always had on and off and the increase in frequency, I went to a doctor for an evaluation of this new pain. So the doctor told me that I had costrocondritis and sent me away with motrin. From there my pain didn’t change and at the end of December I wound up in an emergency room after a significant increase in the pain. They did lab work but missed an iv attempt. The doctor came back to tell me that I was dehydrated (but since they missed a prior iv attempt didn’t rehydrate me) and wanted to just send me home. I had to tell her that the pain wasn’t getting any better and she finally agreed to do a CT scan to rule out a kidney stone. The CT revealed a possible small bowel obstruction but because there wasn’t any contrast used for the scan, it didnt confirm the obstruction. She sent me home with pain meds (not a good idea for an SBO), no fluids to hydrate and told me to see a GI specialist acknowledging that it’d probably be a month or so until I could see one.
In the meantime, I found a new primary care doctor who did tests for h pylori, put me on flagyl and got me an appointment with GI the next day. H pylori was negative. GI thought it was reflux. He put me on Protonix and sent me home telling me if it didn’t work to call him and he’d order an endoscopy and put me on antispasmodics. The protonix didn’t work. The endoscopy was completely normal with no signs of reflux and the antispasmodics didn’t work. A PIPIDA Scan was done to check the function of my gallbladder and that came back at 80% function so no problem there. In the meantime I got so weak and exhausted that every time I got off the couch, I got pale, lightheaded and extremely tired.
At 100am the night after my Pipida Scan, I woke up with extreme nausea so I sat on the edge of the bed for a minute and then ventured to the kitchen for zofran where I proceeded to get very lightheaded and disoriented. I woke my boyfriend up who took one look at me and saw no color at all in my face or lips. I felt cold to the bone, as someone near death might feel with life sucked out of them. My boyfriend (we’re both career paramedics so we avoid hospitals unless necessary) rushed me to the hospital where after 30-45 minutes of laying down on our floor or in the car, they found me to have a blood pressure of 70/30 which was sustained. An IV was started and fluids were given and my pressure came back up. A CT scan was done again this time with contrast and it showed inflamed mesenteric lymph nodes. I also had an elevated white blood cell count. I was sent home on phenergan and a different Antispasmodic.
I contacted the GI specialist who stated over the phone that he didn’t see anything on my CT and to continue taking my antispasmodics. He wrote off my low blood pressure. I then found another GI Specialist who recommended a colonoscopy. One was done and they found a few benign nodules but otherwise I was healthy. They didn’t think my problem was my GI Tract.
I then went back to my primary who suggested a visit to a surgeon for laproscopic surgery to see if they could find any endometrial tissue or other abnormalities that would cause my discomfort.
I saw a general surgeon in April who did a laproscopic surgery and found that my spleen was extremely large and had tumors on it unlike he’d ever seen. He wanted to remove it right then but because he wasn’t sure of the tumors, he did a biopsy and closed me up. I had to wait a week for the results to come back, the whole time fearful that at 30
Posted by Deanna on August 22, 2013 at 4:51 am
Sorry… Again! Typing on smartphones isn’t all its cracked up to be! 😦
Fearful that at 30years old I may have cancer. When the biopsy results came back, I was found to have Splenic Lymphangiomas. Apparently they are benign and so rare that only 600 cases have been reported in the world.
It was now time to see a hematologist oncologist to rule out any blood disorders that could’ve caused it. I saw the hematologist oncologist who pretty much told me he didn’t think my spleen was my problem. He did blood work and attempted to schedule me for a PET scan to rule out cancer anywhere in my body that would cause my symptoms. The insurance company refused the PET scan and the doctor only wanted to repeat a CT scan in another 6 months. Already out of work for 5 months and tired of living this way, I made the decision to not pursue this illness any longer and to just have my spleen removed. If the symptoms stayed after the spleen was out then I’d try to look for other avenues later on.
I had been accepted into school to get my RN in the fall but that was out of the question post splenectomy and so was my career as a paramedic. Luckily my employer kept my job and allowed me to return as a dispatcher full time.
My spleen came out on June 13th of this year. It was an open and laproscopic surgery. I have an 8 inch incision from it. While removing my spleen which was 200gm ( 0.5lb), they found an accessory spleen which apparently decided not to show up on any scans along with the fact that my spleen was so large and pushing on my lungs!
After 2 months of recovery, I am feeling GREAT and realized that I had lived with that awful feeling for most of my 30 years. I no longer have the pressure and pain in my abdomen, no more shortness of breath, nausea, fatigue, weakness, etc. I feel amazing and energized and have begun living a healthier lifestyle.
Has anyone else out there been diagnosed with or heard of Splenic Lymphangiomas?
Posted by SummerSun on September 19, 2013 at 2:53 am
Hi Deanna,
Sorry for the late reply. I am not very well versed with all the things that could lead to the spleen being removed. But it’s great that you have recovered well, and are leading a happier life. Hopefully, someone with the same condition will read this and reply to your comment. Good luck with everything!
Posted by Deanna on September 19, 2013 at 2:57 am
Thank you! I’d still like to find out more about the condition but unfortunately seeing it is very rare, I wouldn’t know where to go for information. I hope I can someday connect with someone who has been through the same! 🙂
Posted by Kelsey on September 10, 2013 at 11:44 am
I just had my spleen removed a little less than two weeks ago due to severe trauma in an auto accident. Before I left the hospital, they gave me 3 vaccines and a bunch of paperwork on the splenectomy procedure but not a lot else. Horses and horseback riding have always been a huge part of my life and SK of course I can’t ride for a few weeks but I am worried about being around the dirty environment that is the barn. Any advice or wisdom you have to share about living without a spleen will be greatly appreciated. Thank you so much for having this blog up!
Posted by Kelsey on September 10, 2013 at 11:59 am
Oh, some other info: I am 25yo, female, have always been very physically active..I am allergic to all penicillins and have never had any surgery or really serious illness before this..I’m not sure if any of this helps but there it is he he.
Posted by SummerSun on September 19, 2013 at 2:51 am
Hi Kelsey,
You would have to judge for yourself whether it is safe to go back to a risky sport like horseback riding. I am not certain whether you would be in danger from a barn. The guidelines post splenectomy refer specifically to dog and cat bites. If you like, I can email you a copy of the fact sheet, and you can discuss it with your doctor.
Posted by Kelsey on September 25, 2013 at 2:50 pm
Yes, I would definitely like the fact sheet- my email is kelc@live.com. Thank you for your reply. 🙂 Also, I am wondering if anyone else has had experience with frequent UTI and/or yeast infections post-splenectomy? Thanks again -Kelsey
Posted by SummerSun on October 3, 2013 at 2:25 am
I have emailed the fact sheet to you. Do write back if you have more questions.
Posted by Yolanda on December 19, 2013 at 12:14 am
I am
Posted by Jodi on October 10, 2013 at 8:39 pm
I have an abnormally enlarged spleen, that keeps growing and growing. I fear that my only option soon will be the doctors removing it. I would love to receive the fact sheet. My email is pandab86 “at” hotmail . com
Posted by SummerSun on October 28, 2013 at 9:40 pm
Hi there, I’ve emailed the fact sheet to you. Please write back if you have more questions.
Sometimes there may be no option but to remove an enlarged spleen, and patient safety has to trump the disadvantages of living without the spleen.
Posted by last on December 16, 2013 at 10:49 pm
@Jodi – why don’t you ask your doctor about a partial splenectomy, i.e., do not remove the spleen 100% but keep part of it still there?
Posted by Govind on December 18, 2013 at 12:34 pm
Thnx for all d above info , I had my splenectomy around 2 years back, my age is 19, juz wanna ask what all exercises are allowed to do, which will not harm a person not having spleen
Posted by SummerSun on January 15, 2014 at 2:14 am
Hi Govind,
If your splenectomy was 2 years ago, you are most likely well healed by now. Some people may suffer from scar tissue at the site of the operation which can cause pain during exercises that stress that area. I would recommend that you seek a doctor’s advice before beginning any exercise program. A check on your hemoglobin levels may also be a good idea to find out if you have the endurance for physical exercise.
Posted by Yolanda on December 19, 2013 at 12:12 am
I’m recovering now from spleen removal. My upper stomach is tight and I barely eat. Should I expect to lose weight?
Posted by SummerSun on January 15, 2014 at 2:16 am
Hi Yolanda,
It is possible that you will lose weight if you don’t eat well after a major surgery like a splenectomy. Please seek a doctor’s advice on lessening the tightness that you feel in your stomach. Proper nutrition is vital to regaining health post-surgery and you may consider vitamin supplements as well.
Posted by Jan on January 2, 2014 at 3:55 am
Thanks so much for the information supplied on your blog. Long story short, 23 yrs ago at age 46, I was hemorrhaging due to severe ITP. After 3 weeks of hospitalization and numerous treatments my spleen was removed. After an additional 3 weeks of hospitalization, and 3 years excessive steroids, chemotherapy, I recovered with a weight gain from 110 to 240. Later resulting in stomach sue grey for weight loss (duodenal switch). Maintaining normal weight of 100 lbs. with inability to gain weight. I continued my career as a classroom teacher and other educational careers, which I am still doing at age 66. Fortunate in aspects of illness from others but have continued for years to have blood disorders or illnesses related to insufficient nutrients due to lack of absorbing nutrients. Of course, the majority of my conditions are diagnosed as a result of my stomach surgery, which include but not limited to: iron deficient anemia resulting in years of iron infusion, B12 deficiency resulting in bi-weekly injections, and etc. For 3 years I’ve had numerous tests from various specialist due to an almost daily pain the the left side under my rib age (site of spleen scar), that also projects around to my left side of my back. Treatments have included medication for supposed IBS, back injections, and various other conditions later ruled out by testing (numerous testing from colonoscopy, upper and lower GI’s, x-rays, CAT scans on back. GP says could be scar tissue from spleenectomy or prior c-sections but due to history of scaring doesn’t suggest surgery to remove it – if that’s the problem. Previous surgeries include: c-sections, thyroidectomy, stomach surgery, gallbladder removal, appendectomy and spleenectomy. Orthopedic surgeon could deaden rib cage via nerve blockage injections-Still considering this possibility but radiating pain continues with severity worsenening. In your “blog” some have referred to scar tissue pain but only briefly – could your or your contributors elaborate – honestly at loss and not certain what or where to go — pain tolerance (diagnosed with an extremely high tolerance of pain-lacking pain meds for comfort) has never been a problem but as I age I find I’m just tired of hurting and limiting my quality of life. any suggestions ?
Posted by SummerSun on January 15, 2014 at 2:23 am
Hi Jan,
You’re welcome! You have certainly been through a lot since your surgery. I couldn’t guess what is causing your pain, except for scar tissue or perhaps an adhesion. It does sound like the pain is serious and maybe a surgeon will consider keyhole surgery to find out what is wrong, and that would lessen the possibility of more scar tissue developing. Good luck, and I hope that the doctors will find a solution for you soon!
Posted by Hari V on April 5, 2014 at 7:32 am
Hiii… I am going have my spleen removed… 😦 I want to know abt the food restrictions after Spleenectomy.
Posted by SummerSun on April 23, 2014 at 1:10 am
Hi Hari,
I am not very aware of food restrictions but Kevin has given a good list of foods that you need to avoid. I personally have found the following foods gave me an upset stomach: cottage cheese, fermented dough and unhygienic prepared food.
Posted by Kevin on April 9, 2014 at 11:36 pm
Hi. No unpasteurised drinks,real ale, mouldy cheeses etc, left out food, over ripe fruit, left out black olives ,. Dates,dried fruit.some nuts, raw eggs,raw fish etc, dried meat of fish. raw veg grown in manure , precooked pies and sandwiches etc. Oxtail soup,home made quiche , humous. don’t eat precooked food after 48hrs when left in fridge which must be kept no warmer than 6 degrees. Be alert .Take background penicillin for life, 12hrs apart.
Posted by Celia on April 18, 2014 at 11:20 pm
I have lost a total of 10 kg since my splenectomy! I only weigh 50kg! I am 1.70m tall and very small frame. I look splendid in a bikini or shorts, but my face looks gaunt and I will very soon have to replenish my entire wardrobe! I also developed an under active Thyroid due to the ITP and have regular blood tests to see if the dosage is not too strong! I am of the nature to eat very healthy and the only recommendations I have had so far was to increase my carbs drastically, but my body is not comfortable with that? I also tend to get “ill” around the crucial 3 week mark of excersizing and then I have to slow down as I become sick! I am a very young 44 yr old with a 9 yr old son and 7 yr old daughter! Throughout my life I have been fit and eat 6 meals a day of the right food groups. I am now told that if I ant to gain weight this must change to include carbs! We do have carbs as I have growing kiddies, but I have never been able to rely stomach those as I also suffer from ins and an ulcer? I am taking protein supplement, even though I am not hungry twice a day,in-between meals, but no weight gain? Pls advise!
Posted by SummerSun on April 23, 2014 at 1:22 am
Hi Celia,
It sounds like a difficult problem you have. I would suggest consulting a specialist to find out what is really going on. I personally found that a B complex pill helped a lot with improving my health. It’s possible that there are some absorption issues in your stomach.
Posted by ej on May 9, 2014 at 6:31 pm
Hi. My good friend’s daughter, 11, recently had to have her spleen removed after a car accident. The daughter is taking antibiotics, is up to date on all her shots and they know to seek medical advice if she gets a fever or feels very unwell. I am looking for some positive stories from others who have lost their spleen because this girl is feeling very upset and anxious about her future. I will share the positive stories I have seen here. Does anyone have any good advice regarding supplements/diet etc.?
Posted by Kelsey on June 14, 2014 at 1:59 pm
Hey, I lost my spleen after a car accident as well- last August (2013). I am 26 yo and otherwise healthy. I honestly haven’t had to change much about my life with the exception of getting my flu shot yearly, a daily vitamin with extra vitamin c and any other shots the Dr reccomends which I think are every 3 to 5 years. I work at a horse farm and have a very active life- so she shouldn’t worry she’ll be OK! 🙂
Posted by Ron on June 15, 2014 at 3:18 am
Hi Kelsey. My splenectomy associated with pancreatic cancer surgery was 2 months ago (see previous post). I am back driving and feeling good. Yes we are a little more susceptible to infections particularly with certain types of bacteria such as streptococcus pnuemoniae (responsible for 60 – 90% of severe infections in splenectomy patients). But you will have been vaccinated for this and other diseases. And there is some evidence that if you continue to take low dose antibiotics for as long as your doctor recommends, your risk of picking up infections is lowered. The important thing is to listen to your body and ACT on it. So if you get a sore throat, or bitten by an animal, or just feel unwell, then seek immediate medical attention. Don’t forget to let the medical people know that you don’t have a spleen. You might like to wear a medic alert bracelet (or something similar) If you maintain your vaccinations, take your doctors advice regarding medication and listen to your body you should live an enjoyable life. Most splenectomy people do. I know two people who contracted severe infections and they both had functioning spleens. One sadly died. The other ended up with heart valve replacements and a pacemaker. So overwhelming infections are not restricted to splenectomy patients. We do have to “tweak” our lives a little. My job is a veterinary surgeon. Naturally I get my fair share of dog and cat bites. Ordinarily if I was bitten badly I would take a course of oral antibiotics and that would fix the infection. Now however I will be off to hospital for a course of intravenous (into the blood stream) antibiotics. But these are really small adjustments. The other thing to beware of is that splenectomy patients are more likely to be affected by certain types of malaria and other insect carried bacteria such as Borrelia (carried by ticks) that causes Lyme disease. Lyme disease is seen mostly in the US but also in other countries like Australia where I live. So you might like to avoid travelling to areas where Malaria and Lyme disease are prevalent. There are other insect carried bugs we need to be careful of. The other thing to note is that over the months to years other organs take over the many roles of the spleen (with the exception of the bacteria fighting function). So I am looking forward to a long and happy life with my young family. Hope this helps. Take Care.
Posted by ronaldbaker on May 21, 2014 at 2:38 pm
Hi. Just had my spleen removed in association with a distal pancreatectomy. Fortunately my pancreas cancer was benign but it was invading the main blood vessels to the spleen. Hence spleen removal. I have had all the necessary vaccinations prior to splenectomy and now take low dose Amoxycillin (some debate about if this is needed). Right now I am feeling pretty good except for some left side abdominal pain which I think is starting to resolve. I understand that I am at increased risk of severe bacterial infection – but most studies seem to suggest that this risk is around 2.6 times that of the general population. My vaccinations will reduce this risk. And I need to remain vigilant for signs of illness and then seek appropriate medical care. I am 57 years old and remain optimistic that I will lead a full and productive life. Sadly I know of two people that died of overwhelming sepsis and they both had spleens. So I figure that by maintaining a positive attitude, eating well and enjoying my young family will sustain me to a ripe old age. Cheers.
Posted by tori on June 5, 2014 at 11:37 pm
Hi I’m only 18 and have had an enlarged spleen ever since I was little. This past year I’ve been going to the Dr’s trying to figure out why it’s enlarged and they said it’s just my spleen is deformed and the only option is removal. So I’ve been given the choice to keep it or not. I’m leaning towards taking it out cause almost everyday the pain is unbearable and it just keeps growing and it could rupture easily. If any one has any tips that would be great:) thank you
Posted by SummerSun on July 12, 2014 at 12:33 am
Hi Tori, it sounds like your doctors would be the best judge of whether or not to keep the spleen. You can ask them if partial removal is an option, that way you will retain at least some immunity generated by the spleen. A rupture would definitely be life threatening. It is possible to lead a normal life without a spleen, but with certain precautions in place. I hope things go well for you. Take care!
Posted by Ron Baker on July 12, 2014 at 2:29 am
Hi Tori, Summer Sun is right. Your doctors will be the best judge regarding retention of your spleen. And right again that it is very possible you will lead a very normal possibly better life after splenectomy given your pain. I am now 3 months post op from pancreatic tumour removal plus splenectomy. My youngest child (4.5 years) has just gone down with a very bad fever and cough. I am not worried and have not increased any antibiotic therapy. A lot of these coughs and colds are caused by viruses and while the spleen does play some role in immunity against viruses other major immune centres in your body generally go to work on the viruses. As SummerSun said certain precautions are worthwhile. Make sure you are vaccinated for the well known encapsulated bacteria. You will be slightly more vulnerable to infection with these organisms without your spleen. The spleen plays a vital role in removing encapsulated bugs. These bugs have if you like a tough outer covering and the spleen is very good at removing those bugs from your body. Your doctor will advise you on this and the vaccinations you need at least 2 to 3 weeks prior to surgery. After splenectomy pay a little more attention to your state of health. For instance if you develop a fever or a cough get it attended to sooner rather than later. And like Kelsey said you can still interact with animals. I am a veterinarian and interact with animals every day. The change for me is that if I get bitten then I need to go straight to hospital for some intravenous antibiotics. I am back at work full time now and fortunately I have not been bitten. But it will happen. Generally 2-3 times a year. But life at the moment is good. And I am sure your’s will be too. Remember that people with spleens also get sick – very sick. As I said in an earlier post I only know of two people that suffered overwhelming infections – and they both had spleens. Good Luck Tori.
Posted by Sharon Kitson (@bunnygirlsk1) on June 13, 2014 at 4:13 pm
Hi my enlarged spleen is now for the first time giving me pain. Thinking if it continues like this they’ll whip it out. No reason to explain it being big. But blood counts can be off. Last one was all normal except lymphocytes 1.3 so a bit low. I get recurrent cellulitis type skin flares which typically get fever and blotchy rash for 3 days. Wondered if these infections cause my ever growing spleen. Got myself convinced it’ll become time to remove my spleen. I have 3 children. Youngest is 2 years old. So scared. If I have my spleen taken out can I still have pets. I adore animals. I have two cats. I wonder if they done a partial splenectomy. Are they quite successful ops and do you still have to have all the precautionary vaccines. Can partial splenectomy be done laparoscopically? Maybe jumping the gun but am preparing myself. I don’t see how things will get better right now. Just losing hope. I’m usually pretty healthy on the whole. Never had respiratory illnesses or even colds that often. Just these weird skin infection episodes. I’m not on any long term antibiotic for it (I personally think I should). I know a bone marrow in the near future which scared about and my CAT scan on 26th June. I want to be the carefree girl I was a couple of years ago. I know lifestyle changes are a part of it and I’m ready for them. I want to see my children grow up. I may have read more bad stories than good. Need good reassuring experience stories. This O.P.S.I scares the s*** out of me. Much appreciation for any wise words.
Posted by Kelsey on June 14, 2014 at 1:44 pm
Hello, I lost my spleen last August (2013) after a car accident. I am 26 yo and have always been healthy so was worried about how this would effect me physically- especially because for 20 years I have worked with and around horses- riding and competing. I work as a trail guide at a horse farm and the doctor said there wouldn’t be a problem and honestly I haven’t had one (with the exception of getting a few colds due to working with the public and their germs). I also have a small dog and pet rat at home and haven’t had problems with them either. So, I wouldn’t worry about having your pets- as long as you take care of yourself n take your vitamins ( I just use a daily gummy w extra vitamin c) your life shouldn’t really change- at least mine really hasn’t. Hope this helps- feel free to email me if you Eve want to talk or have questions: kelc@live.com . Good luck! 🙂
Posted by SummerSun on July 13, 2014 at 2:20 am
Hi Sharon, you are certainly having a hard time and hopefully it will all be solved soon. Maybe a low dose antibiotic will help to solve your skin rash issues? It’s worth discussing with your doctor about it. You can continue to have pets after the surgery, but be careful of scratches and bites. Cats and dogs harbor a bacteria in their mouths called C.Canimorsi which can be deadly to those without spleens. It might be worthwhile switching to more worry free pets.
Your worries about OPSI are very real, and should be discussed in full before any surgery. A course of the correct vaccinations is important before you have the procedure. If they can preserve part of your spleen that would be good, because then you should retain partial immunity.
I’ve so far been living for many years without a spleen, and while the initial couple of years were hard, things have been much better since then. I am always on the lookout for fevers though, and take infections seriously. Do write back if you have more questions. Take care!
Posted by Sharon Kitson (@bunnygirlsk1) on June 13, 2014 at 4:14 pm
I’ve had this enlarged spleen for over 2 years. The last measurement was 15.7 cm in January, December 2013 it was 16.2cm. Sorry I thought I’d add that on.
Posted by Barbara Wolf on July 18, 2014 at 11:09 am
Hi I’m new to this but I have a splenic aterial aneurism and am scheduled for a stent (embolization) on 9/11/14. But they think they may have to take the spleen aswell.I’m really nervous about all the problems. Associated with a splenectomy. Can you please send me a facts sheet?
Posted by SummerSun on July 21, 2014 at 6:48 pm
Hi Barbara,
It’s tough to go into a surgery not knowing what to expect. Hopefully they will be able to leave your spleen intact, though if it’s a life threatening problem it’s the doctors’ decision that counts in the end. Being asplenic does present challenges, but you can definitely live a normal life if you manage your health carefully, and no complications from the surgery occur. I will send you the fact sheet soon, take care!
Posted by Gary Olson on September 27, 2014 at 10:48 pm
I would encourage your bloggers to go on line and read about the newly devised artificial spleen being developed through medical nanotechnology.This news I discovered on line is a huge ray of hope for the asplenic patient.This device works outside the human body and removes pathogens.Simply type in “Artificial Spleen” on any website for further information.Thank God for medical science,help is on the way.the device may be available after medical trials in about two years according to the articles.So far the device has been very effective in animal studies.Gary Olson.
Posted by SummerSun on October 16, 2014 at 2:36 am
That is interesting news. Medical science is always making great strides. Although I would worry about a device that works outside the body because it increases the potential for infection through exposure. Maybe they will develop a way to minimize that risk.
Posted by jason on October 12, 2014 at 12:01 pm
Hi, l has a motorcycle accident in feb14 which damaged my spleen and kidney,. I was taken to hospital and not operated on. Initially in intensive care they kept me on ward under observation for 3 weeks. Daily blood tests and strong pain killers for the pain. The Doctor said I could go home on day 22 if my scan was all clear. This was strange as I could hardly walk the corridor without getting very sore and tired.
I had my scan and then they rushed me to theatre that day. My spleen had blown up to a small football and was about to burst. Five hours later I woke up back in intensive care. To start with I was very sore but over the next two weeks my recovery kicked in.
Finally I was allowed home to ween myself from the strong drugs I had become addicted to in hospital. That done I returned to work. All be it a bit to early.
Before my spleen was removed I would cycle and gym at least 4-5 times a week. Now all I want to do is sleep. My mood is low and I still do not feel my energy levels are back to normal. I have not yet started exercise but my Dr has now told me that I may begin on a light approach.
I was very lucky to keep my kidney and feel very happy to still be here but can you suggest anything for my low energy and mood. Is this a normal adjustment to life after a spleen loss? I take my tablets twice a day and apart from a strange pain after my flu jab I have Thank God been ok.
Many Thanks
Jason
Posted by SummerSun on October 16, 2014 at 2:33 am
Hi Jason,
You were very lucky that only your spleen was removed and no other organ. What you describe post-surgery is what I experienced as well, and so have other people who comment on this blog. Your case may be different, but I can tell you what I and and my family did to help me with the weakness. A good diet is extremely important. Also, make sure it is rich in iron. Dried fruits like black raisins, apricots and dates should be eaten daily. I also took a daily B-complex vitamin which in my observation improved my health as well. Since this has been a problem for many months, I would encourage you to get your blood checked for iron and any other deficiencies. Getting in shape is also a great idea but start very slow, and stop if things get worse. It’s possible that the pills you are taking are causing fatigue, so you may need to work harder to bring your energy levels back up.
Posted by reg on October 26, 2014 at 1:36 pm
Hi everyone, I had a splenectomy 19 years ago, I suffered from ITP. I was diagnosed when I was 14 years old. It was terrible, I was going through puberty and I was a very fit, sporty person. That all went down hill after I was diagnosed, I put on 25kg from the steroids and that didn’t even work. Anyway I have been truely blessed as I haven’t had any problems with ITP since the splenectomy. I have had 2 children, first one was born 13 weeks early, however that was due to a bi-cornuate uterus. I regularly get all my vaccines. The only thing I am always battling with is the weight…I find it so hard to lose the Kg…I wonder if there is any correlation between weight loss and not having a spleen? I also suffer from acne, not really bad, however I am 33 and you would think that it would be gone….I have been diagnosed with a fatty liver and have to really lose the weight…I have to lose about 45kg….I don’t have alot of energy and feel lazy to exercise, however i think that is the Fatty Liver…need to push on and get out and exercise and eat properly…I don’t take any vitamin supplements. I live in Australia and not sure if I can have Vitamin B injections, however does anyone have any suggestions on what vitamins and minerals to take? And also has anyone else had problems in losing weight?
Posted by SummerSun on December 7, 2014 at 2:01 am
Hi there,
Sorry about the late reply. There have been a couple of people who commented on this blog who also had problems with weight gain following splenectomy. I have not had the same issue, and I can’t really say what causes it. I have found favorable results with taking a daily B complex vitamin (though it is less regular now). I also recommend iron rich foods which is what helped me soon after my surgery. Do write back if you have more questions. Take care!
Posted by Ron on December 7, 2014 at 4:16 am
Hello there – sorry to hear about the weight gain. Many things contribute to weight gain and the body chemistry can be complex. But basically it is like this. To lose weight more calories (energy) need to leave the body than goes in. Some with weight problems believe that increased exercise is the answer. Not so. You really have to work very hard to lose calories. There is now significant research about this. That is not to say one should not exercise. There are very significant health benefits to those who do exercise. But with regard to weight loss, the real trick is eat less (and sometimes much less) of a balanced diet. When you think about this if one were to eat nothing at all then one would eventually waste away to nothing. My suggestion is to consult a dietician with regard to a balanced diet – and then weigh oneself weekly. If weight is the same or going up then food intake needs to be reduced. This can be really difficult. Because if we eat to much then slowly over time our stomach expands. What this means is that it takes more food to turn on the little biological switches that tell us we have eaten enough. This is how gastric banding works. It artificially reduces the size of the stomach so the “I am full” switches turn on earlier. But if you can deal with slight hunger pains, eventually over time the stomach shrinks and the “I am full” switches will turn on early. A dietician will be able to help you discover very low energy foods that will “fill you up” and turn on the “I am full” switches appropriately. Hope this helps. Cheers.
Posted by Debodu on May 2, 2015 at 6:01 pm
I would really appreciate some insight and guidance. A friend who had he’s spleen removed 5 years algo, suffers from severe water retention, but manual lymphatic drainage has not been able to budge the liquid, and it’s probably due to the absent spleen.
Are there any tips on manual lymphatic drainage in cases like this?
And is there a particular test that can ce carried out to determine what damage to surrounding lymph nodes and the way the lymph moves in that area?.
Thank you 🙂
Posted by SummerSun on May 11, 2015 at 7:59 pm
Hi there,
Unfortunately I have no knowledge of the problem that you described here. It’s sad to hear that your friend is still having problems 5 years on. Maybe someone with more knowledge about this will comment here, but you’ll have to seek out the help of specialists for this problem.
Posted by Janice on May 14, 2015 at 3:19 am
I am scheduled for a splenectomy at the end of this month due to a hamartoma, please send me fact sheet
Posted by Janice on May 14, 2015 at 3:23 am
….
Posted by umamaheswararao on September 3, 2015 at 10:36 am
Hi there,
Last July 17th we have got car accident in my family and my daughter had injury . first aid we have taken in hospital Dr told me she had spine and said take MRI xray . i went and take MRI Dr Said take to ultrasound because spleen is damaged and she had don splenectomy now she his in home kindly advice me what precaution have to take .
Posted by SummerSun on September 4, 2015 at 2:40 am
The first thing to be done is to get the pneumonia vaccine, whichever one is available in your city or country. After that, it is recommended to take a daily antibiotic for two years post op, but only with a doctor’s recommendation because antibiotic resistance is on the rise. Other precautions include avoiding malaria mosquitoes, dog and cat bites, tick bites, and getting immediate treatment for any infection especially with an accompanying fever. The pneumonia vaccine must be repeated every 5 years if there is no allergic reaction to the first one. Also, the annual flu vaccine is important as well being up to date with other important vaccines. Live vaccines (like MMR) are not recommended for asplenic patients as far as I’ve been told.
I can email you the full fact sheet containing precautions after splenectomy if you send me an email at lifeaftersplenectomy@hotmail.com.
I hope your daughter makes a full recovery! Take care.
Posted by umamaheswararao on September 4, 2015 at 1:26 pm
Hi Sir .Thanks for your valuable reply . After splenectomy 15 days after Dr, has given human Influenza vaccines & pneumonia vaccines. But no antibiotic medicine has given . My Daughter Age is 18 years . my daughter Still on Bed rest Till date me be because of spine but daughter moving legs on bad only . We have to go on Sept 7th for check up .Dr said to come After six week . Kindly advice me which antibiotic (name of medicine ) have to take .
Thanks .
Posted by Anonymous on September 9, 2015 at 5:46 am
HELLO ANY REPLY ? I HAVE SEND MY PERSONAL EMAIL ALSO
KINDLY SEND ME FEEDBACK
Posted by SummerSun on September 10, 2015 at 6:07 pm
I have sent you the fact sheet by email, please check for it.
Posted by kitkat on September 26, 2015 at 9:05 pm
Thank you so much for sharing your story!
About 2 months ago I started having intense pain in my upper left abdomen, back, and left shoulder. The doctors discovered that I had a cyst the size of a softball on my spleen, which was causing me pain. They drained the cyst and left the drain in, and I have been going weekly for treatment. However, it’s been 2 months, and the fluid is still being produced and won’t stop draining. My doctor has given up on treatment and wants me to go to the surgeon for further consultation about surgery. I am really scared about getting my spleen removed. From what I have read, it will alter my life style significantly. Would you be able to email me the fact sheet? My email is ‘aquafina90’ at ‘gmail.com’
Posted by Ron baker on September 27, 2015 at 12:10 pm
Hello kitkat. I can understand your anxiety. The spleen is a very important organ. But you can lead a normal life without it. I had my spleen removed in April last year as part of major surgery to remove a pancreatic cancer. My recovery has been excellent. Life continues as normal for me with just a few precautions. I take daily antibiotics as recommended by my surgeon. And I am fanatical about hand washing. My young family, 5 yrs, 13 yrs and 14 years old bring home all the bugs. Touch wood I have not succumbed to even the viral diseases this year. I have made the decision not to travel to parts of the world where malaria and Lyme diseases are endemic. But holidays at home with family more than make up for that small inconvenience. I know of three other people that also lead normal lives without a spleen. We all make sure our vaccinations are current. Hope this helps. Cheers. Ron.
Posted by Jean on October 3, 2015 at 6:41 am
When I was 5 (in 1962), I was hit by a car as a pedestrian. As per the court records that I read many years later, I was conscious and was taken to the hospital and then sent home. Later that evening I passed out and was taken back to the hospital. I’m told that the exploratory surgery to discover the internal bleeding lasted 8 hours and they ended up removing my spleen. (I have a 6″ x 1/2″ scar on my stomach that they told me at that time would stretch out and become a pencil mark that I could erase if I became a teacher)
I grew up in a family with 5 kids and we always had a lot of dogs and cats. We were pretty wild and there were a lot of bumps and bruises. We didn’t have any insurance so the only time we went to get vaccinations or any medical treatment was when it was required for school.
The only illnesses that I had, that my brothers and sisters didn’t, were when my white blood count would jump up. This always seemed to happen in the summer when I wasn’t in school. The symptoms that I had were being forgetful and tired. My parents were told that I needed to be sure to eat properly, get exercise and most importantly get enough sleep. These were the things that would help my body regulate itself.
We were a “wonder bread” family and ate a lot of processed foods, but that didn’t seem to keep me down. I was just as active and illness free, if not more so, than anyone else. And again without any vaccines.
I did have one experience that was kind of extreme. At one point I had 2 jobs and was working 10-12 hours per day, 7 days a weeks. After about 4 months, I went to go home one evening (I lived 1 mile from my office) and I got lost going home. I pulled up to a red light and couldn’t figure out where I was. I pulled into a gas station at the corner and eventually someone came out to ask if I needed help. I told the guy that I was lost and handed him my wallet. I lived 6 blocks from that gas station. He called the number on my emergency card and my Mom came to pick me up. I had no idea who she was, but she took me home with her. The next day she took me to her doctor and my white count was 41,000 and at that point I knew who my Mom was. Who knows what it was the night before. The doctor ended up telling me that I had leukemia. I didn’t go back for the follow up visit. Seems that it was true about the importance of sleep.
As I’ve grown up I’ve discovered that nutrition is also important. I probably have taken it to the extreme, but I make almost all my own food from scratch. Processed foods have so much extra sodium and sugar and who knows what else. How do we know how all of that effects us? I’ve felt better since I’ve made this change.
Other Notes:
When a person with a spleen gets a CBC, their white blood count will be between 5,000 – 10,000 if they have no infections.
When a person without a spleen gets a CBC, their white count will be between 12,000 – 15,000 if they have no infections.
There have been many times that I’ve had to “humor” a doctor and take antibiotics to prove that I’m not sick before a minor surgery.
I can pretty much tell you what my white count is based on how I feel, but there was one time recently when I was fooled. I don’t dislike doctors, but I want to know for myself what’s going on so I signed up with an online blood test website. You choose the blood test that you want and they send you an order to go to your local lab. The results are sent to you. I’ve been doing this for years and it gives me a way to keep track of what’s going on vs. how I feel. At that time I was feeling sluggish and tired and I went for a blood test. I was surprised that my white count was at 12,000 as I was expecting it to be high. What turned out to be high was my Iron count. After some research I found that one of the functions of the spleen was to pull the reusable iron from the red blood cells so that it could be used again. Well, no spleen means that iron goes back into circulation. This high iron count meant that I was becoming dehydrated. I increased my fluids and got right back on track.
Listening to your body is so important. I’ve been learning as I live and 53 years after having my spleen removed, I feel wonderful.
Posted by SummerSun on October 21, 2015 at 8:08 pm
Thanks for writing in Jean. Very interesting to know about the blood cell count, I have not heard about that. Mine have not displayed any such variation so I guess it depends from person to person. Take care.
Posted by Julie Heffernan Carter on October 21, 2015 at 5:00 pm
Hi: My 34-year-old niece had her spleen removed yesterday. Have you posted the fact sheet anywhere? Thanks!
Posted by SummerSun on October 21, 2015 at 8:10 pm
Hi Julie, I have not posted it publicly on this website but I can email it to you if you like.
Posted by lisa on October 27, 2015 at 4:29 pm
Hi, my spleen was removed about 2 months ago and i still have this pain and hardened area inside the naval area. Is that normal? it’s not severe pain or anything. I feel it when i sneeze, cough, stretch, or bend a certain way. It just feels sore. Is it scar tissues? Is it something i should worry about? Also, will you be able to send me a fact sheet to lbuth87@gmail.com.
Posted by SummerSun on October 28, 2015 at 12:32 am
I’ve sent you the face sheet by email.
I couldn’t say for certain about what the hardened area that you’re feeling is made of, but it could be scar tissue, especially if it’s underneath the incision site. You should definitely get it checked out by a doctor if it bothers you. I still have a hardened area where a tube was inserted into my abdomen, and it hurts from time to time, even after many years. I was told it might be left over scar tissue and not to worry about it.
Always get any post surgery concerns checked by a doctor because you never know what it could be. Take care!
Posted by lisa on October 28, 2015 at 4:12 pm
thanks. made an appt. and will be seen asap.
Posted by Anonymous on October 30, 2015 at 6:03 pm
Hello All, useful information you put here, I have my spleen removed due to a bike accident. Just want to know if i can eat sushi. Can you email me the fact sheet? Thank you a lot
Posted by SummerSun on November 3, 2015 at 9:31 pm
Hi there, I can definitely email you the fact sheet if you reply to this comment and leave your email address in the right field. Sushi can sometimes carry dangerous bacteria that asplenic people might find hard to overcome. I was advised through a reader of this blog to avoid sushi, so I usually only eat what’s been fully cooked. Take care!
Posted by Sarah on November 3, 2015 at 12:53 am
Hello,
I just recently moved to California and on July 22nd, I was rear-ended by a drunk driver who was driving at least 85 MPH. It was 7:30 in the morning on a Wednesday and he was over double the legal limit.
The highway patrol officer kept me standing by the side of the road for the better part of 2 hours before telling me that he would give me a ride home.
When I requested an ambulance, he argued with me saying that my legs were going numb probably due to shock. If I had not pressed the issue and insisted on an ambulance a second time, I would have died.
The paramedic and the ER doctor both said I looked fine, but x-rays and CT scans were conducted, just in case.
The CT scan showed massive internal bleeding from my spleen being ruptured. Next thing I knew my room was full of trauma doctors. My pancreas was also bruised and I ended losing about half of my blood in the process.
I am 27 and I was always very healthy before this. I would get sick maybe twice a year and, if I took care of it properly, only for a couple of days.
Now I am being told that I am facing a lifetime of health issues and that I should just get used to the idea.
The main problem I am having here is lack of information. I know there have to be things that I can do to better my chances of leading as normal a life as possible. However, this information is not very forthcoming. My concerns are brushed off and I am told to just continue on as I did before.
I know there is more I can do, but no one is telling me anything and my doctor seems completely unconcerned. I only started seeing her after the crash, so we do not have much of a history with each other. I am thinking that I need to look for a new doctor that is more receptive to my input and concerns.
I have four nephews and a niece and they are all under 9 years old. I have been told that I have to restrict contact with my family because kids get sick so often. They were the sole reason I moved to California in the first place.
I also have a dog and my roommate has two. I have been advised to get rid of my girl, due to the risk from animal bites and ticks. However, she is my Emotional Support Animal and helps keep my pre-existing anxiety disorder in check. After the crash, this turned into a full-fledged panic disorder. I literally cannot sleep without that dog.
It seems like most advise is nowhere to be found, and the advise I do get breaks my heart.
Until I found this blog, the only forums I found were so old that they had closed long ago or no one was responding anymore.
Just finding this blog and seeing recent posts means more than I can say. Seeing that there are other people out there right now in the same situation I am in makes it seem less daunting.
If anyone here knows of a doctor in the Southern California area that they would recommend, I would greatly appreciate it!
I am also looking for any and all information I can gather as to what my future may look like. I have yet to get sick since the surgery so I have no idea how I’ll react. They did give my the necessary vaccinations, but I was not put on a regimen of antibiotics and no one mentioned a change in diet.
Many Thanks,
-Sarah
Posted by SummerSun on November 3, 2015 at 9:55 pm
Hi Sarah,
Your experience following the surgery is not uncommon. Doctors seem to regard the lack of a spleen casually, but you will find a few who know how important it is to take precautions after losing one. By coincidence, I had a similar experience where my spleen damage was not discovered until hours later because externally nothing seemed injured. And I also had mixed advice from doctors, as well as being told that nothing could be done when I repeatedly fell ill.
Following a splenectomy, it is advisable to stay on a daily antibiotic for 2 years, when your risk of getting dangerously ill is at its highest. Now with antibiotic resistant bacteria everywhere, this advice needs to be balanced with other risks. An infectious diseases specialist might be able to give you better advice. I haven’t ever been to one, but I’ve heard that they have more knowledge about immuno-compromised conditions.
I wouldn’t say that you are “facing a lifetime of health issues” because you can definitely live a normal life without a spleen, but with certain precautions in place. The many commenters on this blog are testament to that, going about their daily lives.
So getting to your concerns, yes it’s true that children get sick often and carry germs, but I would be more concerned about whether these children have had their vaccinations on time. Avoiding them when they are sick is the best precaution, but restricting general contact with them seems over the top to me. Of course, if they get sick from something like pneumonia (hopefully never), definitely keep your distance.
About your dog, which you clearly cannot live without, it’s best to be more careful than other pet owners. Dogs carry the C. canimorsi bacteria in their saliva, so letting any dog lick an open wound is absolutely to be avoided. Since your dog is your support animal, I doubt you are at risk of being bitten, but I wonder about your roommate’s dogs. If you can change that situation it would be easier to control your exposure to germs. Dogs do pick up ticks from the outdoors, but animal tick repellents (permethrin) are available, and you can use those on your dog. Again, you can’t make your roommate do that for his/her dogs. Also, from what I’ve read, most California ticks do not carry the disease that’s dangerous for asplenic people (babeiosis) but other tick diseases could be dangerous for you.
The importance of a good diet cannot be stressed enough, especially getting enough iron after losing your spleen. A daily B complex vitamin gave me a lot of energy as well. Fresh fruit and vegetables are important. Avoid any restaurant where hygiene could be a problem.
Your future is bright, just like the rest of us. All these precautions might seem hard at first, but with time they become a part of your lifestyle and are easier to follow. Take care!
Posted by Mrs.R Roy on December 19, 2015 at 6:12 am
my spleen was big, my Dr.suggested me ,that you are surggary your enlarged spleen….. I want to know, that, in future I’m gatting Pregnant without A Spleen?
Posted by SummerSun on January 27, 2016 at 1:28 am
Yes you can have children even without a spleen. There may be a risk of preterm delivery, as described in a study in Israel, and precautions need to be taken for infection control in case of any surgery during delivery.
Posted by Spencer on January 2, 2016 at 6:00 am
I have an enlarged spleen it is around 1800 ml and I have been told that a normal human spleen is around 200 ml if I remember correctly. Because of this my doctors say I should have a splenectomy or a partial splenectomy and I was wondering if there were any advantages to keeping some of it or if there were any disadvantages to keeping some of it. If you are curious this is because I have spherocytosis.
Posted by SummerSun on January 27, 2016 at 1:16 am
There are certain advantages to keeping a partial spleen because the person retains some degree of immunity. You might still have to take many of the precautions of an asplenic patient depending on how much spleen function remains. As a lay person, I wonder if keeping part of the spleen means the remainder may get enlarged again.
Posted by Vicky on February 7, 2016 at 12:47 pm
I ruptured my spleen 5 months ago by the time docs knew I had 3ltrs of internal bleeding which they couldn’t understand why I was still alive. I have found it a struggle I’m always not well though I’m on daily antibiotics, have no energy and feel as if I have went from a intelligent full of energy kind of person to slow, clumsy and the only word I can describe it as is thick. I can’t write properly so soul destroying, I don’t no if this is all to do with my spleenectomy or during surgery and loss of blood and oxygen to my brain. Has anyone else felt like this?
Posted by SummerSun on February 17, 2016 at 7:41 pm
Hi Vicky,
It sounds like you are going through a very difficult time. If it’s any consolation, I had a similar experience after my surgery and found I could not think clearly, and things which were simple to understand became difficult. I had problems with motivation and a severe lack of energy. My doctor concluded that I was suffering from an iron deficiency, as well as depression. I began a diet rich in iron, but unfortunately the depression was not treated correctly, and continued to be a problem for a long time. My energy levels did get better though.
I would suggest that you get your hemoglobin checked. Also, a daily B complex vitamin helped me a lot, which is something you could try as well. Certain antibiotics can reduce the level of B vitamins in your blood, and make you feel tired too.
Posted by Vicky on March 16, 2016 at 8:25 pm
Thank you for your reply, I am finding its getting easier as time goes by and have taken your advice about vitamin b and diet. My blood count was checked and is ok though I have developed an under active thyroid which was fine before loosing my spleen. Thanks again it always helps to no your not alone in your experiences x
Posted by Jennie on July 9, 2016 at 3:10 am
D3 is great for depression!
Posted by Nicky on March 16, 2016 at 7:48 am
What do you mean avoid animals?
Can you email me the fact sheet? Mine was a month ago due y o a car accident
Posted by Anonymous on March 16, 2016 at 8:17 pm
I haven’t avoided animals though was advised to. In case of bite or scratch it can cause infection and can be very high risk, there is no way I could part with my family pet cat, though I am a lot more wary of him. I hope you are doing ok, it does get easier in my experience. x
Posted by Tammy on April 2, 2016 at 1:08 am
I got in a near fatal accident in 2012, at the age of 44 and ruptured my spleen and fractured ribs on left side. I am 47 years old now. I’ve had several people telling me that I’m supposed to be taking some kind of anti-biotic. Is this necessary? Thank you.
Posted by SummerSun on April 6, 2016 at 11:11 pm
Hi Tammy,
Your doctor would be the best judge of taking a daily antibiotic. The immune deficiency that results from the loss of spleen remains life long, and so a daily antibiotic is an option. However, with the emergence of antibiotic resistant bacteria, it can be a difficult decision to make. Please consult with your doctor or seek out an infectious diseases specialist if you wish. In any case, you should have a supply of antibiotics to take in case of an emergency, before you can get to medical help.
Posted by Vicki wells on April 17, 2016 at 10:52 am
How do I contact you about help to feel better without my spleen . Ive been struggling for many years and would take any help or advice that is available. Thank you
Posted by SummerSun on April 26, 2016 at 5:09 am
Hi Vicki, what specifically are you seeking help with? I have also emailed you if you want to talk by email.
________________________________
Posted by Amy on May 1, 2016 at 3:55 pm
Reading all of the comments here has been the best information I have found so far. I had my spleen removed a week ago do to a trauma. I am scared of the lifestyle changes I may face. I was very active and healthy before this and my hope is that I stay that way. The fear and depression are starting to hit so I would appreciate any information I could get. I have already emailed you to get the fact sheet everyone has referred to. If you could please send it to me I would appreciate it so much. I have been struggling mentally and emotionally with this trauma. I’m hoping the information you have will help ease some of those fears. Thank you so much
Posted by SummerSun on May 25, 2016 at 12:43 am
Hi Amy, I emailed you the fact sheet some time ago. I hope you’re feeling better than when you wrote in. The first few months post op are the hardest because you are coming to terms with a huge trauma. Please don’t hesitate to seek professional help if you feel that you are developing PTSD or depression. Take care!
Posted by Louis Martin on March 6, 2018 at 4:02 am
I lost me spleen about 16 months ago due to a botched colonoscopy. Like you, I live in a state of anxiety, fear and depression constantly concerned about getting an infection that will kill me. My life has changed dramatically. The things I took for granted-gardening and getting as thorn in my finger, raking leaves (ticks), paying with dogs, camping,sushi, a cold, a fever, going on an airplane, chills, going to the dentist, an ENT, a urologist, the movies, mall (anywhere there are crowds and indoors, touching an elevator button, a shopping cart, a cut, etc.etc. Living without a spleen is difficult.
Posted by Jennie on March 6, 2018 at 4:08 am
I had mine removed after it enlarged and had cyst wrapped around it in 2011. I take vitamins, take antibiotics only as needed and have done fine!!
Take care of yourself and just be vigilant about others and sickness.
Posted by Jennie on March 6, 2018 at 4:11 am
In 2013.
Posted by SummerSun on April 12, 2018 at 9:25 pm
Hi Louis, living without a spleen is understandably an anxiety causing situation. However, I encourage you to not put your life on hold because of fear. With certain precautions in place, such as vaccinations, you can go out there and live your life. Yes, we need to be cautious around things or people that can sicken us, and the first 2 years after splenectomy are the most critical, but try not to obsess over what may happen in the future. It would be helpful to get objective medical advice from a doctor who takes your concerns seriously.
Posted by Chris Rivera on May 23, 2016 at 10:33 pm
I had my spleen removed in 1994. I was in an ATC accident. I went home in very intense pain and dizziness. After blacking out a few times, I ended up in extreme pain and had to be rushed to the hospital. I had this weird pain in my shoulders that was very sharp. I came to find out recently that it’s called “Kehr’s SIgn.” I was bleeding internally. Had a CAT Scan, surgery, bla bla bla. I was in the hospital for 8 days. The surgeon told me I would be easily getting sick for the rest of my life. He also told me when I get sick I would need to take antibiotics, at times. However, every single doctor I’ve ever seen since then has disagreed. I have literally gone to the hospital or emergency room with the flu. I would feel like I was dying.
After reading some of the comments here about their doctors saying it might only before first few years, that kind of makes sends. I would say my sickest years were the first 10 years and I would attribute that to not only my lack of a spleen but also not eating and caring for myself very well.
Now, I still get sick and it does seem to linger. I just eat better and try to do everything I can to build my immune system.
Posted by SummerSun on June 15, 2016 at 1:54 am
Thanks for sharing your story. You were very lucky to be operated on in time. It’s great that you’re taking care of yourself, and making the right choices!
Posted by Jayne on May 28, 2016 at 3:01 am
Hello,
My name is Jayne and I am 47yrs old and I just had an Open Splenectomy on May 19,2016. It’s been a rough year dealing with anemia, having a hysterectomy, having 2 herniated discs, and dealing with vertigo. My spleen was 12in.x10cm and weighed 6.6lbs. The pathology report stated my spleen was enlarged due to having a cavernous hemangioma. Prior to surgery I had three blood transfusions and felt so tired,out of breath just from walking, and feeling like crap. Once I had the hysterectomy my energy level got better and my blood numbers were good…but then I started to get lightheaded and dizzy….I’m still struggling with the vertigo and I use a walker to get around. It’s been eight days since my surgery and I am emotionally feeling great and came across your blog and I just wanted to share my experience with not having a spleen. I just saw my Hematologist and he stated my red blood cell count was at a 13 but my white cell count was at 16,000. It is considered high but that is expected cause I just had surgery…He stated that people without a spleen will always have a high white blood cell count…he also stated that my spleen was very,very large…I told him I was aware of this when I spoke to the surgeon after my surgery. The surgeon was surprised it was so large….my spleen had many cysts in it and the largest cyst measured 8cm.
I stayed in the hospital for 3 days and then was sent home…I still get tired from time to time but the Dr. say it’s normal…I am experiencing insomnia but I’ve been struggling with this for awhile. I’m on the road to recovery and would like a copy of the fact sheet.
Posted by SummerSun on June 15, 2016 at 1:41 am
I’ve emailed you the fact sheet – please check your email.
Posted by Joel on June 1, 2016 at 10:56 am
Hello-
Just had my splenectomy after a motorcycle accident on April 19. Never really knew how important it was until it was gone. After the emergency surgery I was given all the vaccines and set up for regular vaccinations in the future. So far I haven’t had any complications or issues, just a pain in the left side under the rib cage. It’s been 7 weeks so I just attribute that to the healing process that will eventually resolve itself. Can you send me the fact sheet so I may be more informed please? Thank you for the blog as well. It’s very informative and I’ve learned a bunch just from reading other people’s life experiences.
Posted by SummerSun on June 15, 2016 at 1:40 am
Hi Joel,
I too have experienced the pain under the left rib which comes and goes. It hasn’t ever fully gone away for me but hopefully yours will resolve with time. If it gets too bad though, definitely go see a doctor. Please check your email for the fact sheet.
Posted by Sara Ross on June 1, 2016 at 6:26 pm
HI,
I had a splenectomy last September and I’ve never felt better. I have Lymphoma that only involved my splene and bone marrow. After a trial of chemo that did not work, the doctors decided that my splene, that was now so enlarged and weighed over 10lbs. was not doing me any good and had to come out. Every year I have to be inoculated against your major diseases and I always have an Rx for an antibiotic on hand just in case I get a fever. I was told that not taking the antibiotic can be very dangerous and even life threatening. I also take iron. I have noticed that I have gained weight. Not much, just about 10 lbs. Right after the splenectomy I lost weight but within a few months gained it all back plus 10lbs. Do you know what’s up with that?
I have more energy now than I ever had and appreciate everyday. I would love a copy of your list if you could send it to me.
Sara
Posted by SummerSun on June 15, 2016 at 1:39 am
Please check your email for the fact sheet that I sent you.
Posted by Leonard Delgado on June 9, 2016 at 5:22 pm
My grandson, 17 had his spleen removed after a sporting accident. Its been 4 months, Dr has cleared him to resume sports, but, i am feeling anxious about it. He loves football, tackle football. Does anyone know if any pro athletes are playing with their spleen removed? thank you, Any input would be helpful. I have read a lot about vaccinations (which he has had) and taking care around people with flu etc., but nothing on resuming athletic activities.
Posted by SummerSun on June 15, 2016 at 1:37 am
Hi Leonard,
I can understand your worry about your grandson considering he had a major surgery and now wants to return to sports. I pursued karate some years after my surgery, but only as a means to keep fit, and not to spar. Your grandson might be better off in a sport with less contact which reduces the risk of future internal injuries. However at a young age, no one liked to be limited in this way, so he may not like the suggestion. I hope he can find something that he enjoys and which won’t worry you as much!
Posted by E on August 9, 2016 at 4:29 pm
Many pro athletes function perfectly without a spleen, it is very common amongst cyclists in the main, they are always crashing.
Posted by Allyson on June 14, 2016 at 10:32 am
Hi.I had a splenectomy over 2years ago,after a rare splenec artery aneurism ruptured.
I go to the gym 3days a week and on average walk 50 miles a week.
I take penicillin every day and all my shots are up to date.The doc stressed the need to take penicillin for the rest of my life.I travelled to New Zealand just 6months after my op and last year went to New Zealand Singapore and China.
I have not had any illnesses or colds even when family around me are sick.Must be the antibiotics.I have a light cold at the moment but touch wood it will be ok.
I ate anything and everything when in China and was fine.
I dont eat raw fish i.e. Sushi etc.
I enjoy a glass of wine most days,and eat rare steak.
I spent 6 months after my op worrying about things so much,but at my age life is too short for this and get on with things.Yes i get tired but thats because im active.
Life goes on and feel lucky i dont suffer with worse things.
Posted by SummerSun on June 15, 2016 at 1:38 am
Thanks for sharing your story, Allyson! We all have to eventually stop worrying too much or it becomes impossible to live a happy life post surgery.
Posted by Jennie on July 9, 2016 at 3:05 am
Hi… I had a splenectomy 3 years ago. I too have pain on left side at times. I would live to know what it is!
My spleen grew to the size of a 8 x 11″ piece of paper and had a cyst wrapped around it.
I researched, saw doctors and found out I have Lupus. No cancer, no trauma.
Posted by Jennie on July 9, 2016 at 3:09 am
Also, my immune system seems to be stronger. I take 5000 units of D3 with K2 daily, Probiotic and cinnamon. I do get cellulitis easily if I have a herpes outbreak on hands, or legs. So, Dr has to give me antibiotics asap. One of the biggest differences I’ve noticed is how I am super sensitive to meds.
Posted by E on August 9, 2016 at 4:32 pm
I had a spleenectomy 2 1/2 years ago after a bike crash, had open surgery, I’m suffering with a couple of niggles wonder if anyone else had experienced them and had some advice, my lower back and abs get achey after minimal excercise and get a pain in my left abdomen quite frequently, any ideas?
Posted by Breann Housel on August 14, 2016 at 4:57 pm
I’m 18 and a few months ago when I was 17 I cut my spleen in half and had severe internal bleeding. It’s been 9 months and my body still hasn’t healed correctly, it’s very hard. My doctor did not brief me on anything as far as the purpose of a spleen or what life could be without it. I could really use any tips to help me adjust. I’ve had the proper vaccines. My surgery was done laporascopically, but I was wondering if you have any problems with scar tissue because I get sharp pains where the healed incision is. Anything could help.
Posted by Jennie on August 14, 2016 at 5:08 pm
I had sharp pains post op as well. White Count was very high. But, has improved since removal in 2013.
Be sure your Dr is aware of all symptoms. I sought out an internal medicine Dr that will treat me quickly when I get sick. Antibiotics are not something I take daily but need fast if I am sick.
I take Vitamin D3 with K2 which aids in immune system.
Posted by Jennie M Kennedy on September 4, 2016 at 4:54 am
Correction. I had my splenectomy in 2011. 😀
Posted by T on August 25, 2016 at 11:27 pm
I am 5 weeks post distal pancreatectomy and splenectomy, thankful that path was benign for both masses that were found on pancreas and spleen. I would like to have your fact sheet emailed to me. I agree, it seems that “all will be ok and live your life” attitude is common among even the worlds best surgeons. Thankful to gain info from this blog post.
Thanks again,
T
Hrtrn1972@hotmail.com
Posted by Diane on September 19, 2016 at 6:28 pm
I’m seeing a surgeon tomorrow about a splenectomy. I have autoimmune hemolytic anemia, and this may put me into remission. At this point I can choose not to have it removed and try to find the lowest amount of steroids to take while maintaining my red blood cell count. Because of antibodies in my blood, my spleen is destroying my red blood cells. I really have a huge decision to make and would like your fact sheet and opinion. Oh and if you’ve never been on Prednisone for over a year, the side effects are horrible. I guess I’m looking for the lesser of 2 evils. Thank-you Diane
Posted by Jennie M Kennedy on September 19, 2016 at 11:40 pm
Hard decision. I know not having a spleen isn’t as bad as I imagined. Listen to your surgeon, do your research and pray! If your spleen is the problem, then….it may be good to get it out
Posted by Diane on September 20, 2016 at 1:56 am
Thanks, I’ll let you know what we decide.
Posted by samantha lira on September 23, 2016 at 8:39 pm
Hi I am 27 I barley got my spleen took end out and they took out my draining I feel alone and scared I have weak immunity system don’t know what to do feel weak all time is this normal my spleen was enlarge had to take it out
Posted by Jennie on September 24, 2016 at 12:19 am
So, barely, meaning it was just taken out?
If it just happened recently, then yes, you will be weak (my experience. .not a dr). It took me a few months to feel normal again. But everyone is different. Ask your Dr questions, and educate yourself. It will be ok! People live long lives without a spleen. It’s important to take vitamins. My Dr doesn’t keep me on antibiotics but some do. Rest and take care of yourself.
Posted by Micki cohen on October 26, 2016 at 5:00 pm
My 7 year old grandaughter lost her spleen and half of her pancreas in an auto accident when she was 4 1/2. Has been on antibiotics since then and is now hungry all the time and has gained too much weight also has ptsd and sees a therapist regularly…could the antibiotics be causing her to be hungry or the loss of her spleen and part of her pancreas?
Posted by SummerSun on February 19, 2017 at 11:10 pm
Antibiotics can upset the balance of your stomach by changing bacteria levels and also affecting the functioning of the liver. I would suggest getting her liver function checked as well as pancreas function.
Posted by Kimberly Ferry on November 3, 2016 at 1:31 pm
I’m awaiting an emergent splenectomy, due to it’s recent enlargement and the problems it’s been causing. I am absolutely terrified to have this removed after reading all of the research however I am also only 5 weeks post abdominal surgery which was an elective procedure and had my surgeon not done her job I would have never known that my spleen was the problem this whole time I thought I was suffering from a post-operative infection just because I was passing kidney stones had an enlarged spleen and the pain from the 2 urged other testing to find out that I needed to have my spleen removed and that I had passed the worst of the worst kidney stones that I could have for now. I’m also terrified of how they go in, potential scarring and since I already have a weakened immune system that getting much worse. I just spent nearly $20,000 to have my abdomen look normal again and now the images I’m seeing are very scary. What should I do?
Posted by SummerSun on February 19, 2017 at 11:12 pm
They can probably do a laparoscopic surgery if the spleen is not too enlarged. The danger of living with an enlarged spleen that may potentially rupture is greater than the risk of living without it. I wish you the best of health. Diet, appropriate exercise and a healthy outlook on life can help you get back on track after your surgery. Don’t forget to ask your doctors for the right vaccines!
Posted by S bhakta on December 7, 2016 at 4:08 pm
My wife met with an accident and gone through spleantomy. She doesn’t have spleen. I want to know that what lifestyle she needed and precautions.
Posted by SummerSun on February 19, 2017 at 11:15 pm
I will email you the fact sheet which contains details on precautions to be taken post splenectomy. I wish your wife the best of health.
Posted by Chaitanya on June 8, 2017 at 9:36 am
Send me fact sheet
Posted by SummerSun on July 17, 2017 at 4:38 am
I have emailed it to you
Posted by Mandy harney on December 11, 2016 at 4:00 am
Hi my name is mandy i have to go have my spleen removed janurary 18th and im freaking out bad will i be fine
Posted by Jennie M Kennedy on December 11, 2016 at 7:10 am
Hi….
I had mine removed five years ago. Was concerned too. I can empathize. Went just fine and I haven’t had any issues.
Posted by Lisa Clark on January 4, 2017 at 1:08 pm
My sister had her spleen taken out 6 months ago, and since the surgery has suffered constant nausea and poor appetite? Is there any known reason for this, or connection to the surgery?
Posted by Anonymous on January 7, 2017 at 3:48 am
That’s how mine was too, it’s like it takes a while for your pancreas to adjust .
Posted by Daniele on January 16, 2017 at 2:08 pm
Hello
I was recently spleenectomized
But surgeons Said me , ive a second spleen little like a bean
Do u know if this second spleen Will take tre functions of the first one?
And how are u now?
Tnx
And sorry my bad english
Posted by SummerSun on February 19, 2017 at 11:14 pm
If your second spleen is that small, it will be of little to no use in supporting your immune system. Please get all recommended vaccinations to make sure you are protected. I am doing all right, just have to take precautions not to get sick.
Posted by ROBBIEDT on January 17, 2017 at 2:46 am
hello I am a 63 year old woman with GI motility issues. I went to a specialist 18 hours away from where I live, Unfortunately, during a colonoscopy, he must have hit my spleen. I woke up knowing something was wrong but was told it was gas. By pm that evening, I was in such pain, I went to the emergency room. I kept passing out. It took them to 3 am to finally find it was my spleen and I ended up having open emergency surgery on Nov 17, 2016 to remove my spleen as it has ruptured and I was hemorrhaging. Sadly, they gave a transfusion of the wrong type blood!!! I am lucky to be alive but am having a difficult time adjusting. I was also diagnosed with colitis by the Gi doc colitis and can’t take antibiotics every day and am allergic to penicillin. I have lost 15 pounds since the surgery and well, to be honest, feel horrible . I have a number of questions…
1, I still have pain around my belly button and underneath it I can feel a hard lump. I do not know if this is normal after two months or if I should expect that it will go down or if after two months, if it has not gone down, it is permanent scar tissue and I will have to live with it.
I was given 4 vaccines but they messed that up as well. I never got the Prevnar, despite having the Pneumovax vaccine a few years ago, They gave me another shot of Pneumovax. It was a horrible experience.
2. I have since read my hospital notes .and noticed it said to high does of Vit C . They never told me that. Can someone tell me what amount I should take daily? .
As I said, I am having a difficult time adjusting. I wear a mask if I go out, really am frightened to go out and get germs, am very tired, and am living in fear of getting sick. I have had a sore throat twice already and been to the doctor both times. My partner does not understand and thinks i am a hypochondriac and I don’t know when I should go the doctor (a cold, a cough, or just if I have fever. I now am afraid to be around dogs, am washing my hands all the time and well, all in all just living in fear.
3. I need some dental work and am not sure if I SHOULD INSIST my primary care should give me antibiotics?. I read somewhere it is less than 2 years since a splenectomy, you need antibiotics, if they plan to dig around your gums or if you have a root canal or for certain shots the dentist may give.
4. I also have been experiencing some weird symptoms. Pain in my chest had an EKG but they said there was nothing wrong.
5. I also am experiencing hot flashes every once in awhile. Has anyone experienced this or know what it could be. I am way past menopause.
6.LASTLY, HOW DO YOU LIVE WITH THE FEAR OF GETTING SICK AND DEVELOPING SEPSIS!!!!!!!!
Posted by Jennie M Kennedy on January 17, 2017 at 2:56 am
First off, that hospital should be doing something about their mistakes! I had a splenectomy in 2011. At first, I was tired, worried, etc. Dr never prescribed daily antibiotics. I did get the vaccines. I take Vitamin D and occasionally C.
I have had dental work and no issues. I recently saw a surgeon about gallbladder and he said, relax! No need to freak out about sepsis.
I was sore in abdomen for several months. Normal I was told.
Take care.
Posted by ROBBIEDT on January 17, 2017 at 6:26 pm
thanks so much. I really appreciate that you responded
Posted by Jennie M Kennedy on January 18, 2017 at 3:26 am
Just let you Dr know your concerns. Your situation is yours of course and we are all different. I know I had to learn to listen to my body more. Rest, etc.
Posted by ROBBIEDT on January 17, 2017 at 6:45 pm
hello, I forgot to ask for a fact sheet. I would appreciate one.
Is there anyone that has not received Prevanr. Due to a mistake, they gave me a shot of Pneumovax (already had that shot a few years ago) and now I need to wait a year for Prevnar. Just had my spleen out (emergency) on Nov 17, 2016.
Posted by SummerSun on February 19, 2017 at 11:19 pm
I have emailed you the fact sheet. Please seek medical advice before taking any vaccines or antibiotics advised in it.
Posted by Anonymous on January 25, 2017 at 12:46 pm
I had mine removed via open surgery last year, and get a lot of itching all over my body. Anyone else, and how to stop it?
Posted by Anonymous on January 25, 2017 at 5:07 pm
I am sitting here very itching myself. I have also noticed I itch a lot, all over my body, face, eyes and head. I had my surgery two months
ago.
Posted by Jessica Mccaskill on February 18, 2017 at 1:59 am
Hi my husband had his spleen removed December 14,2016 cause of an accident he was in. To this day he says the scar hurts sometimes. When anything touches it he says it hurts. Is this normal? Has anyone else had this problem?
Posted by Jennie M Kennedy on February 18, 2017 at 2:17 am
I had mine taken out laproscopic but the abdomen hurt for months. My surgeon said it was normal…nerve endings. Mind you, your hubby should talk to his Dr.
Posted by victor matcham on May 16, 2017 at 7:46 pm
well done you are doing some very good work, vic matcham
Posted by SummerSun on July 17, 2017 at 4:34 am
Thank you so much!
Posted by Michelle Abel on May 17, 2017 at 2:16 pm
I would like to contact you , I’m 23 months post Splenectomy and I’m struggling .
Posted by SummerSun on June 7, 2017 at 7:35 pm
Hi Michelle, would you like to contact me by email? It’s lifeaftersplenectomy ‘at’ hotmail ‘dot’ com. Or you can just reply to my comment.
Posted by roberta tucker on May 17, 2017 at 3:53 pm
I had mine out 6 months ago. I am struggling as well. I have colitis as well and can’t take antibiotics daily. I live in fear every day about getting an overwhelming infection. Doctors in Us are hesitant to give antibiotics for dental work, colonoscopies, etc.even if you have no spleen. I have had a lot of sore throats since the surgery, and ever time I need to run to the doctor to see if it is strep throat. I constantly am washing my hands, cleaning the door handles, no longer take walks or hikes in the woods, no longer play with dogs, got my yard sprayed for ticks and mosquitos, no longer garden due to fear of scrapes. I feel my life has changed completely and what I once took for granted (letting a puppy kiss me) is no longer possible!!! I have been told not to go swimming, not to sit on the beach, avoid crowded places. I am fatigued as well. I am arguing with my doctors about getting antibiotics for dental work. My surgery was an emergency due to a botched colonoscopy, an open surgery and my scar from 36 staples not very pretty.
Posted by Andi on June 17, 2017 at 8:11 pm
Hello! I am going through the first and only (hopefully!) “open” splenectomy in July. I fell and hit my spleen, however; it ruptured because of many “unknown” masses on it. I have rec’d the vaccines, (not easy, because my doctor wasn’t well versed in what vaccines I needed. I now am ready, but I am concerned that I want to get back to life quickly. I am a farmer and swim 2 miles a day. I’d like to think I will be back to swimming in three weeks post op. Is this a reasonable feat? How much pain was there? I get very ill with General Anesthesia and pain medications, is there something to help that, so you aren’t retching up your guts? Thank you for any and all information.
Posted by roberta tucker on June 18, 2017 at 1:09 am
ithink 3 weeks may be pushing it… more like 6 to 8 weeks.
Posted by SummerSun on July 17, 2017 at 4:41 am
Hi Andi, I’m sorry that you had to go through a splenectomy. I hope you are recovering well and that everything went off smoothly. I would caution that three weeks after surgery is too soon to get back to vigorous swimming. Mild exercise is best as your body needs a lot of time to adapt to life without a spleen. You will need to get to know your new limits, and that takes time. I had a lot of pain after my operation but everyone is different. Don’t be in a rush to get back to life, just take it easy. Unfortunately I have no advice on managing general anesthesia reactions, but hopefully your doctor helped with that. Narcotic medications make me sick too, so I avoid them like the plague. You could try something non narcotic and hopefully it will be enough. Take care!
Posted by Anonymous on June 27, 2017 at 7:22 pm
I had my spleen out in 2014 due to a litoral cell anginoma i was of work for 8 weeks and returned to work in the care sector working with the elderly and have not had a day of sickness since. I was not sick before just lost weight and my blood platlet levels droped, this was discovered when i contacted food poisining from a local cafe but have jot had any problems since
Posted by SummerSun on July 17, 2017 at 4:41 am
Great to hear that! May you always be well!
Posted by sheerin on July 3, 2017 at 12:48 pm
HI i had a splectonomy in 2010. and i have portal hypertension and i feel my stomach became very hard not easy digestion recently i scaned abdomen liver cirrohis also started can u please help me.
Posted by SummerSun on July 17, 2017 at 4:42 am
Hi Sheerin, I have replied to you by email. I hope you can find a solution to your illness.
Posted by Michelle Abel on July 17, 2017 at 11:21 am
Could you email me the fact sheet also ?
wyrepatch4@gmail.com
Posted by SummerSun on July 26, 2017 at 11:19 pm
Hi Michelle, I’ve emailed the fact sheet to you.
Posted by LaTroya Byrd on November 30, 2017 at 3:01 am
Could you email it to me please latroyarobinson@yahoo.com thank you.
Posted by SummerSun on January 13, 2018 at 5:34 am
I have emailed it to you. Take care.
Posted by Amanda on September 4, 2017 at 8:07 pm
Hi could you send me the fact sheet please had my spleen removed 2yrs ago staring to get poorly now I’ve had very little info on living without a spleen I suffer with a bad chest any advice would be amazing
Posted by vicki wells on October 28, 2017 at 1:01 pm
Hellothere
I too lost my spleen at 8 weeks . Now 52 but i am very unwell and would appreciate any advice or help please. Ive just started a small job but i dont no if i continue as it tyres me out. Please i would so appreciate any help or advice………!!
Posted by SummerSun on January 13, 2018 at 5:26 am
Hi Vicki, I’m sorry you are going through such a hard time. Could you explain what health problems you are suffering from? Then perhaps I could offer some advice though I’m not a doctor.
Posted by SummerSun on January 13, 2018 at 5:29 am
I have emailed the fact sheet to you. Take care.
Posted by LaTroya Byrd on November 30, 2017 at 2:59 am
How do you keep your weight up living without a spleen?
Posted by SummerSun on January 13, 2018 at 5:33 am
I had trouble with that initially when I was sick so often after surgery. It hasn’t been a problem since the past 6-7 years or so.
Posted by Mate on December 8, 2017 at 10:45 am
I have ITP or thrombocytopenia and my doctor has me on Rituxin infusions at the moment. If they don’t work they will remove my spleen. This concerns me very much. I don’t know what to expect. I also am afraid of the life after it is removed because I don’t fully understand what is it going to be like. Thank you for sharing your experiences they have been a real help to me
Posted by SummerSun on January 13, 2018 at 5:35 am
I can fully understand your concerns, but it is possible to live a healthy life without a spleen with certain precautions in place. Do make sure to get the important vaccines if by some chance you have to go through with a splenectomy (I am praying that you don’t!).
Posted by Karen Santini-Irons on December 25, 2017 at 1:54 am
After I had to have a splenectomy due to my car accident 8 months ago I have been sick twice this year and I seen that cannot hold food down I’m not understanding why
Posted by SummerSun on January 13, 2018 at 5:37 am
Hi Karen, I’m not sure why that would be happening. It would be best to get a full blood work panel done, including a check on your liver enzymes. I hope you’ve had all required vaccines.
Posted by Andi on January 14, 2018 at 6:08 pm
Hi, have now been without my spleen for 6 months. I have only been ill once, but that is because I ate a raw oyster that probably had bacteria in it. I do however, stay away from ill folks (like in gyms) and exercise and swim 3000 yrds daily. I am thinking because I stay very active and having all my vaccines, plus eating well, is on record of why and how I am doing so well post splenectomy. My very best to all of you, and may you be healthy, happy, and strong.
Posted by SummerSun on April 12, 2018 at 9:31 pm
I hope you will always continue to thrive, Andi!
Posted by Ellie on January 15, 2018 at 3:09 pm
Hi, may you please email me the fact sheet? I have surgery scheduled for 2/23/18. I have splenic lymphangiomatosis, a very rare disesase which causes the formation of dozens of benign cyst on my spleen. My spleen measures 15 cm and hasn’t worked in months as a result of being taken over by the cysts. I’d love to get my hands on the fact sheet to help with my life post splenectomy. My email is Blakeney.2013@gmail.com. Thanks I’m advance!
Posted by Andi on January 15, 2018 at 4:38 pm
Hi Ellie, I had the same exact thing. My spleen was huge! I had so many lesions and cysts of different sizes and shapes. I had to have an open splenectomy because my spleen was so large. I am doing really well. Good luck, and please don’t hesitate to tell us how you are doing.
Posted by Ellie on February 2, 2018 at 1:29 pm
Glad to hear you’re doing well! Are you taking a daily dose of antibiotics following your surgery? My doctor prescribed me 500 mg of amoxicillin daily for the first two years following my surgery. She has also set up appointments for me to meet with an immunologist and nutritionist. I’m nervous about the surgery but hopeful that it’ll improve my life. My enlarged spleen is causing several problems like shortness of breath, fatigue, and I can barely eat anything.
Posted by SummerSun on April 12, 2018 at 9:34 pm
Hi Ellie, I have emailed you the fact sheet.
Posted by rdt on January 17, 2018 at 6:05 pm
I lost my spleen a year ago due to a botched colonoscopy. I have not been sick until now. I developed a cold, fever, sore throat and fever. I went to the ER where they tested me for mono, strep, influenza and an xray for pneumonia.. All came back negative and they said I had a cold. Well, it is now day 11, and despite decongestants, gargling with salt water, a humidifier, I am still having a post nasal drip, earaches, laryngitis and cough with a sore throat. At what point do you take antibiotics?
Posted by Brooklyn on April 9, 2018 at 1:31 am
I sure hope they gave you all the vaccinations you need for afyer this surgery. You are suppose to get vaccinated 2 weeks before the surgery and also agian after.
Posted by SummerSun on April 12, 2018 at 9:28 pm
Antibiotics are helpful when there is a fever and other signs of serious infection like low blood pressure, etc. It may just have been a virus that takes time to clear out. I hope you are doing better now!
Posted by Ryan on January 21, 2018 at 10:54 am
Recent and somewhat revelatory information on the role of the spleen:
https://www.omicsonline.org/open-access/disposable-no-longer-the-spleen-holds-a-reservoir-of-stem-cells-2157-7633.1000219.php?aid=28517
Posted by SummerSun on April 12, 2018 at 9:36 pm
Interesting, thanks!
Posted by Anonymous on February 16, 2018 at 2:38 pm
I lost my spleen in an accident a couple years ago. I eat very healthy and in small increments during the day. I am trying to lose weight but it’s not budging…is there a special diet recommended for those who have lost a spleen and want to lose weight? Thanks.
Posted by SummerSun on April 12, 2018 at 9:26 pm
Unfortunately I’m not aware of any such diets. It may not be due to the lack of spleen at all. Perhaps adding an exercise regimen might help you lose additional weight.
Posted by Angie on March 14, 2018 at 2:44 am
I had my spleen removed when I was 10 years old because of a blood disorder. I am now 53 and I am very healthy. I had 3 children without any complications and even had my appendix removed while pregnant with my 3rd. I have never taken antibiotics (except when I had a gum infection) never had a flu shot and never had the flu, just a handful of colds in my life. So I guess I’m one of the lucky ones but I’ve always wondered why I’m so healthy without an important part of my immune system missing
Posted by SummerSun on April 12, 2018 at 9:21 pm
I’m glad to hear you have been able to live a normal life! However, I encourage you to get the flu and pneumonia shots because immunity reduces as you age and vaccines will protect you in the coming years.
Posted by Brooklyn on April 9, 2018 at 1:28 am
Hey! I have some questions. My name is brooklyn. I am 32 and had my spleen removed. I have hereditary sphercitosis…tumers were growing in my 22cm spleen. I been sick for years just never got the proper care from real doctors. I noticed the last couple years before surgery and after i been having issues with acne. I have never had acne in my life. I think because my spleen wasnt doing its job right and wasn’t cleaning out the bacteria it may have caused my problem. Its been 3 months since my surgery. I always clean my teeth at least every other week and it actually caused an infection and i also feel like im coming down with pink eye. I need to learn how to live without a spleen.
Posted by SummerSun on April 12, 2018 at 9:20 pm
Hi Brooklyn, what questions do you have?
Posted by Robert Karcher on May 12, 2018 at 6:14 pm
I lost my spleen in 1964 and have lived a pretty normal life since. I am curious if anyone else has encountered fatigue issues along the way after a splenectomy and found certain vitamins or supplements that are helpful.
Posted by Carla on September 20, 2018 at 9:01 am
I’d appreciate an emailed copy of your fact sheet. Thank you!
gatorpa2008@gmail.com
Posted by SummerSun on February 11, 2019 at 4:50 am
I have emailed you the fact sheet.
Posted by Biba on September 28, 2018 at 3:28 am
My doughter ,23 years old,lost her spleen 2 months ago.She is now having some cold and we are upset about it.She got all four vaccines afther surgary,waiting now for flu vaccine.Can you ,please,emailed us copy of your fact sheet.Thank you!neso@cableone.net
Posted by SummerSun on February 11, 2019 at 4:49 am
I have emailed you the fact sheet. I hope your daughter is doing better now.
Posted by Louis Martin on October 27, 2018 at 8:59 pm
It is almost two years since I lost my spleen due to a botched colonoscopy. It has changed my life, my relationships, my personality. I developed PTSD and severe health anxiety. I live in fear all the time. I am anxious all the tine. Every medical procedure scares me. I already had some medical issues but trying to live with being immunocopromised has ruined every aspect of my life. I am afraid of everything, everyone. It has only gotten worse and finding the right type of therapist has been near impossible. Am I the only one who is fearful/ i never really recovered my strength after the splenectomy. I tire easily. In the winter I worry about a flu or clod and developing pneumonia, (I already have some lung issues from having smoked so many years. I also have colitis. I wear masks in the winter, no longer swim in pools, avoid anyone who has dog. I have no joy in my life any longer, no longer go to places that are crowed, am hyper aware of every sneeze or cough when I am outside. I am finding it very difficult to deal with. The vaccines do not protect people without spleens as well as those who have spleens and that includes the flu vaccine. I am truly finding it difficult and the more the time passes, the more afraid I become. I was hospitalized last year for a staph infection because I have no spleen. Every cut, sore throat, earache , headache, chill causes anxiety. Am I alone or does anyone else find they have developed anxiety and their life and sense of well being impacted? I am older, 65, so maybe this plays into the impact losing my spleen has had on me.
Posted by SummerSun on February 11, 2019 at 5:00 am
I’m so sorry you had to go through this. Please try and remember that being asplenic is a secondary immune deficiency, not primary. Have you considered seeking therapy for the trauma you are carrying? I’ve personally found EMDR and craniosacral therapy to be extremely beneficial in moving past some of the most painful memories of my accident and surgery. I am still working through it but doing so much better than a year ago. You are not that old, and you need to find a way to recapture some joy in your life. Please consider seeking help and let us know how you are doing.
Posted by celine costa on November 26, 2018 at 6:17 pm
I am seeking help for my anxiety and fear of infections post splenectomy. It gets worse every year for me. I just don’t seem able to adjust, despite the vaccines I received, I never feel safe. I am afraid to go to the movies, the mall, the winter, the summer, just always scared since losing my spleen. Did anyone else experience this and did any type of therapy help you? I realize I need find a way to live my life but somehow am not finding any luck finding the right method towards that end. I know most of you seem to have moved forward but I am stuck and it is hard to deal with the anxiety.
Posted by SummerSun on February 11, 2019 at 4:56 am
I found that my health related anxiety jumped up in the years after my spleen was removed. However, I have learned to cope through therapy and personal efforts. I use hand sanitizer every time I leave a store, which has helped reduce the number of sore throats I was getting. I would recommend that you find a therapist who can help with your anxiety and fear. Take care.
Posted by Papa on December 2, 2018 at 1:42 pm
I had my spleen removed 2 months ago after a car accident. Lost a kidney. Lacerated liver. Bruised pancreas. Multiple broken ribs and sternum. My Dr. Is very casual about the splenectomy and all that I have been reading talks about daily antibiotics. Diet. Blood counts. Etc. Could you email me the fact sheet. Thank you.
Posted by SummerSun on February 11, 2019 at 4:53 am
Hi there, I’ve sent you the fact sheet.
Posted by Nico on February 25, 2019 at 1:22 pm
Hello I write from Germany. 4 months ago the spleen was removed because of a motorcycle accident. I was also vaccinated. Every doctor here tells me you can live your life as before with spleen. I’m still terribly afraid to make my life normal. I just sit at home and shy away from any human contact for fear I might get something. If I bleed (shave) somewhere I’m afraid that I could develop a sepsis. The doctors say the spleen is primarily a blood reservoir and a small part of the immune system which still consists of the tonsils, kidneys, spinal cord, intestine. But I can not imagine that God creates an organ that would be meaningless. In my research I have now learned that scientists from Cambridge / USA have developed an artificial spleen for the treatment of sepsis. Unfortunately, the articles on the Internet from the year 2014. Does anyone know what it looks like with the redevelopment and use of artifical spleen. When could she be used?
Posted by celine costa on February 28, 2019 at 8:59 pm
hello Nico, I lost my spleen two years ago from a botched colonoscopy. I am sort of like you- afraid to live a normal life and shy away from human contact and worryy every time I shave my legs if I get a cut and bleed. i actually wrote to the company who is developing the artificial spleen. They are in early development, meaning not in clinical trials for people. I asked if they planned to include asplenia patients in their trials. They do not have any plans but think should the product ever get on the market, it would be used for sepsis, regardless of why to filter the bacteria out of the the body. I hope for both of us, we find the courage to start getting out and living our lives. It is difficult to feel so vulnerable and anxiety living the same life prior to losing my spleen.
Posted by Anonymous on March 8, 2019 at 9:57 am
Hello Celine,
Thank you for your belief. In the meantime, I have found out that Switzerland is very far in research on the spleen. There, the spleen is removed only in extreme emergency because the found out that this organ is very important. It can live without the spleen but the question is how! Unfortunately it does not bring us anything anymore. I do not know what to write because I miss the words. Only so much that I can not cope with the situation. For over 4 months now I have hardly left my apartment and no contact with other people.
Posted by SummerSun on August 12, 2019 at 11:39 pm
Hi there, I would advise you to see a therapist on dealing with your anxiety about leaving the house. Lack of spleen is a secondary immune deficiency, which means your primary immune defense of your bone marrow is still strong and working well. Please don’t shy away from living life. You can live a normal life with a few restrictions in place. Take care.
Posted by Anonymous on April 8, 2019 at 7:33 pm
Hello anonymous
I had my spleen removed following a motorcycle accident, I was 16 I am now 76.
I was somewhat ignorant of the dangers of being asplenic, until about 25 years ago. A clinitian I was seeing regarding an unrelated medical condition, was amazed that I was never taking penicillin daily. I don’t think that I had ever been subject to more infections than normal. Now I have a supply of antibiotics at hand to treat the first signs of an infection.
However I was always lead to believe that I could suffer from heightened emotionans, that being a short temper.
Has anyone been aware of this.
Posted by SummerSun on August 12, 2019 at 11:35 pm
Hi there, I am glad that you have a supply of antibiotics on hand to treat potential infections. I haven’t heard of the tendency to experience heightened emotions, that is probably something that varies from person to person.
Posted by Corrine on July 26, 2019 at 3:03 pm
I am 37 years old but had my spleen removed when I was 19. It was very enlarged due to hundreds of tumors. I had multiple surgeries to remove tumors that I later found out was caused by birth control. I was completely healthy before this surgery but after my health has completely depleted. I had an open surgery not laparoscopic. I have an many really bad infections and my white cells and platelets have been super high since my surgery, which is pretty normal. But I have had so many other things come up since then that don’t seem to match others with no spleen. I go thru periods where I give up on my health b/c it is so frustrating. My doctors struggle to help me. I have seen all sorts of specialists and seem to always come to a dead end. My doctor has sent me to an oncology/hematology doctor, who then sent me to a rheumatologist, who then sent me to a immunologist, who sent me to a cardiologist, and so on. I have spent way to much money trying to figure out what was going on with me and I am so tired of it. I have had so much testing and at points I feel like it is in my head until I get lab results back that tell a different story. Many of my positive lab results line up with autoimmune issues but I have not gotten a diagnosis. My ANA is always positive, my cardiolipin antibodies are always positive, my c-reactive protein is positive, but I am negative for many of the lupus type tests. Besides a medication that I take for reaccuring UTI’s the only other medicine I take is a pill that helps with extreme dizziness I deal with. I have a lot of trouble getting over infections and my platlets are so high that mulitple doctors keep requesting I get bone marrow biopsies. I have had two, which were both negative. Some days I want to give up. I don’t know where to turn but I feel as though this is all connected in some way. I literally had no health issues until my splenectomy and now I am a mess. I am tired of being sick and feeling awful. I have been to University of Chicago and they just keep sending me to different specialist. I stopped going b/c I couldn’t afford it anymore. I feel like I am back to square one. I have had so many random things come up over the years that just don’t make sense. 😦
Posted by Corrine on July 26, 2019 at 3:08 pm
One strange fact about my splenectomy is that one month after my surgery my surgeon committed suicide.
Posted by Nico on January 3, 2020 at 11:55 pm
I had mine out 6 months ago. I am struggling as well. I have colitis as well and can’t take antibiotics daily. I live in fear every day about getting an overwhelming infection. Doctors in Us are hesitant to give antibiotics for dental work, colonoscopies, etc.even if you have no spleen. I have had a lot of sore throats since the surgery, and ever time I need to run to the doctor to see if it is strep throat. I constantly am washing my hands, cleaning the door handles, no longer take walks or hikes in the woods, no longer play with dogs, got my yard sprayed for ticks and mosquitos, no longer garden due to fear of scrapes. I feel my life has changed completely and what I once took for granted (letting a puppy kiss me) is no longer possible!!! I have been told not to go swimming, not to sit on the beach, avoid crowded places. I am fatigued as well. I am arguing with my doctors about getting antibiotics for dental work. My surgery was an emergency due to a botched colonoscopy, an open surgery and my scar from 36 staples not very pretty.
Posted by SummerSun on March 23, 2020 at 12:23 am
I am sorry this happened to you. There have been several people on this blog who had colonoscopies go wrong. Honestly, I don’t think the risk is discussed enough. If you’re not having dental surgery and it’s simply a root canal, I don’t think antibiotics are necessary, but I’d go with your doctor’s recommendation. I’ve had two uncomplicated root canals without antibiotics. Please download the fact sheet from this blog and see which vaccinations you need to get. With the right precautions, you can live a full life.
Walks in the woods are possible if you can get Permethrin treated clothing, or treat the clothing yourself. Try not to worry about every little thing, it will only make life unbearable. Take care.
Posted by Corrine on June 17, 2020 at 2:41 pm
I have had my spleen removed when I was 19. Since then I have had so many infections and it was hard to get rid of them. It got to the point where my body stopped reacting to antibiotics b/c I built up an immunity to them.
Posted by Isabel on April 1, 2020 at 1:11 pm
I have a question for people without the spleen: how are you coping with the possibility of getting ill from Covid-19 or another types of new coronaviruses, which even the healthy people with spleens have difficulties fighting since there are no cures, vaccines and natural antibodies against it?
I am about to remove my (enlarged) spleen sometime in the future, so I am curious how to prepare for these kinds of things…
Also, could you email me the fact sheet? Thank you very much!
Posted by Corrine on June 17, 2020 at 2:43 pm
My doctor has had me home from work on FMLA but that only lasts so long.
Posted by Sara Ross on June 17, 2020 at 5:41 pm
COVID-19 is a virus, spleens do not protect you from viruses, just bacteria. With that said, since I lost my spleen due to Lymphoma, I do take every precaution, social distancing, hand washing and wearing a mask but I would do that with or without a spleen. I do keep all my vaccines up to date, just had another pneumonia vaccine ( every 5 years for those without a spleen) Hope this helps.
Posted by Bob K. on June 17, 2020 at 6:58 pm
Correct, although CDC and others (see link) warn that those without a spleen are at higher risk, so be careful.
https://healix.com/sharing-knowledge-and-news/covid-19-advice/
Posted by Sara Ross on June 18, 2020 at 2:33 am
Thanks for this information, Bob. I never saw this as being a factor before and will show it to my doctor. Thankfully, I have been very cautious due to my age and cancer.
Posted by SummerSun on March 21, 2021 at 4:26 am
Hi Isabel, I have checked my blog after a long time. I’ve emailed you the fact sheet.
Posted by Michelle on March 21, 2021 at 1:42 pm
Thank you so much . I lost mine in 2015 , I battle infections constantly and am currently being tested for MS .
Posted by Manju on January 30, 2022 at 10:53 pm
Hello. How are you?
I just removed my spleen 3 weeks ago. I am in post operative phase the healing has been going well. The vaccines were given to me at the hospital before discharge. Few more to go in March.
Can you tell me how life has changed for you since your surgery? Esp food wise. It will be great to know a person who went through a similar experience. Hope you will reply back.
Thank you,
Manju
Posted by Duane on May 17, 2023 at 6:22 pm
Hi. Interesting reading of blog and comments. Too many to read them all. Therefore, wondering if there are natural supplements to be taken in order to assist the body to do what the spleen does when we don’t have one. I had my spleen removed 49 years ago. Duane