emergency splenectomy -so scared

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hello, I hademergencysurgery for a splenectomy due toalacerated spleen duringa colonoscopy. It wasa month ago.I am terrifed with fearofgetting sepsis. I can't really take prophylaxis low dose antibiotics every day because I have colitis and the Gi doc is afraid of cdiff caused by broad spectrum antibiotics. I am still not really myself, tired a lot of the time. How long did it take most people to recover and how do you live each day in fear of a cold or infection that may develop into something a lot worse. I am so very anxoius and nervous.  I am63 and this experience  has changed my life and not in a goodwa. Plusthey gve methewrong blood typeduringthe surgery and I had aNABO incomatabilty reaction (although not catastrophic).any ideas or how you deal with this, please let me know 

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  • Posted

    Hi Ann,

    very sorry to read about the awful time you have had. I ruptured my spleen 18 years ago and have had a pretty normal life since. It is a shame you can't take daily antibiotics, but a lot of asplenics can't or don't so try not to worry too much about that. There is also now a vaccination you can get for septicaemia (MEN ACWY) - I got it recently from my doctor, you should look into that. Tiredness is definitely an issue from time to time but I find multivitamins help greatly with that. I know it's easy to say but it is unlikely that losing your sleen will greatly change your life. Try to live a normal life while also being sensible - eat / sleep as well as possible, wash hands frequently, avoid people with throat / chest infections, dont ignore cuts and rashes. 

    I hope this is a help and you make a full recovery and then get back to an (almost) normal life

    David  

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    • Posted

      thank you for your kind words. I was given the vaccine you mentioned. I do not know why but I am just so scared.. it is horrible worrying about a cut, sore throat, etc. I am now one month out and since this happened ina state far away from where I live, I am going  to find a surgeon to check my incision wound to make sure it is healing.   For some reason, it is still  bumpy and hard underneath and still pretty tender and well,  I just don't know what the norm is..I am glad to hear you take multivitiamins.I was not sure if I would be  allowed to take them without a spleen but it is a great idea.. again, thank you for responding. wishing you a happy holiday season and healthy new year.      

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  • Posted

    Hi Anne.

    Im in a different situation to you with my splenectomy. Mine was planned op for auto immune ITP (A blood disorder). I didn't have the fear that you have because I had chance to get my head around the idea first. It must have been such a shock for you. My splenectomy was by keyhole

    surgery by a fantastic Professor surgeon in the NHS. You will

    come to terms with it as you heal

    inside and out. Give yourself time and be kind to yourself. I am in

    England. The Meningitis B vaccine

    has become available for

    asplenics here and I have had it. It

    may be available to you too so

    check it up and make sure that

    you have had it. Take things easy. Feel free to conact me Iif you need to, or would like to. Kind regards Pauline.

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  • Posted

    Hello there. I am 38 and I had an open splenectomy this past May. I had severe splenomegaly caused by an epidermoid cyst inside of my spleen. I nearly made the Book of World Records for largest spleen. It weighed almost 4,000 grams (9 pounds). It was only about a week from when it was discovered to when I had the surgery and it was a huge shock to me as well. I had to have an open surgery with three incisions that all connect in the middle. It's about 14 inches altogether.

    I was terrified of getting sick for the first few months, and I won't lie, it's still a concern. However, I really feel totally normal now, the way I did before the surgery and before I had any symptoms of the splenomegaly. I have only gotten sick once since the surgery, and that was with a common cold. It did hit me hard and took longer to get over than usual, but it wasn't deadly and I didn't miss any work because of it. I am not taking antibiotics because the surgeon as well as my general doctor both insist that it isn't necessary. 

    I have visited several other medical forums and read about other experiences and what I've gathered is, if you're diligent about going to your primary care doctor when you feel even a little bit sick, you should be okay. Of course, you also must be cautious. For example, there have been several times where I have been invited to visit friends or family and I've learned to put my health first by explaining ahead of time that I need to know if anyone is even slightly ill and if so, I have to decline the invitation. Don't worry about hurting people's feelings; if they care about you, they'll understand and want you to be healthy and safe.

    I know you didn't have splenomegaly so it's a little different for you, but I would also add that my health has improved since the surgery. My splenomegaly was so severe that it caused a variety of odd symptoms that I'd had for years and my docs in the past always brushed it off and prescribed pills. For example, I had mild hypertention before the surgery. Now blood pressure is low. I had nausea off and on for about a year before the splenomegaly was diagnosed. It turned out that the splenic cyst had wrapped around my stomach and was causing the tummy issues. I also had shoulder pain off and on for a long time - all are symptoms of enlarged spleen.

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    • Posted

      thanks for writing and telling me of your experience. I am glad you are doing well. For some reason, I just can't stop worrying but I hope in time, I will just learn to live with being  more dilengent with going tothe dcotr when I feel sick.  Have  happy helathy New Year

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  • Posted

    hello, Ann again.just wondering if splenectomy patients can take probiotics? My G Idoc said not to take them. I do not know if this is  because we are somewhat immunocomrpomised by not having a spleen and probiotics should be used with caution in immunocompromised patients. I also have colitis and a probiotic would be good for this but since I lost my spleen I do not know if adding bacteria into my system is a good or bad thing. I read somewhere some patients can develop sepsis or fungus from probiotics if immunocompromised but they were not splenectomy patients. anyone outthere know the anwser  
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    • Posted

      I'm here because I'm about to undergo evaluation for possible spleen difficulties.  I know how difficult it is to avoid most of the internet, and the news - I'm lucky there - I don't have cable.  But I did see something, probably on the blasted internet, about discouraging probiotics.  While I don't know your situation, and am not a health care professional, taking some basic acidophilus, shouldn't be a problem.  Maybe your physician is thinking you might use one of those super mega dose of everything probiotics.  If it is true that people are often advised to take daily antibiotics, then I don't know how one does that without  taking at least the acidophilus to help prevent candidaiss.  But here's the thing - what I think you may be suffering most from is inadequate attention following treatment.  Most patients seem left to manage the concerns and fears on their, (our) own.  This is bullcrap.  We all know how stress causes disease.  Tough cooties that the docs and support staff might find it 'bothersome' that patients have rightful emotional reacions to disease -- the biggest DUH there is.  So.  Keep at in getting what you need and to heck with what any of them might think about you - you know.  Your posts and the others here have helped  me decide to do something counter to my physician's orders -- don'tworry - it's not a big deal - in fact, this ordinarily wouldn't becounter his orders, so I wonder if his pseudoc receptionist gave him the right message.  (I won't be "following" this discussion).

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  • Posted

    Hello again Anne.

    I dont take probiotic either before splectomy or after. My gut is fine. Im not sure whether you are having penicillin or you're not. Either way and speaking about my experience, I have no problem in relation to gut bacteria and I take penicillin daily. I believe that if you take penicillin the gut bacteria becomes used to it. (Someone gave me that info but cant remember who exactly.) I just plod along taking each day as it comes and the vast majority of the time I am fine. When I first lost my spleen I was very afraid but not now. In the main I am ok and live as before but take 2 penicillin 250 a day. I hope that you can settle a bit soon as its been such a shock for you. Regards Pauline

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