Recent Ileostomy

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Joined
Sep 22, 2011
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Hello all, this is my first post to the forum. I am a 24 year old female who is in my 5th week of recovery from a small bowel resection and temporary ileostomy. I first begain having trouble with Crohn's in March of 2010. Often having severe abdominal pains and after some time losing 30 pounds when I was already a petite 110 to begin with. I went months going between emergency room visits and visits to my family doctor. When I would see my doctor he would just continually prescribe me lortab, and would occasionally say, "sounds like you have Crohn's, " which I had never heard of and he for some reason never ran any tests nor referred me to a GI. And from March to December I was having to go to the ER practically every two weeks always getting sent home with the same response, "eh it's just your stomach ulcers, take some prevacid and go home." Which made me angry because I thought, if it was my ulcers, why am I hurting in my lower right abdomen and near my kidney and why does it hurt so bad that I can barely function. Finally in December I was admitted and seen by a GI who did a colonoscopy and diagnosed me with Crohn's. For a few months I was taking prednisone and pentasa and that seemed to be working fine. I even gained my weight back plus a few pounds. But soon the flare ups and frequency increased and the pain was even more excruciating than before. I was admitted to the hospital where in late July 2011 I did a three week stint, with TPN, antibiotics, and steroids. The pain got worse so the consulting surgeon sent me to ICU where I spent a day and had a tube inserted through my nose. I really hated that tube. The surgeon didn't feel confident operating himself so had me transferred to a bigger hospital 2 hours away where a surgeon was on staff who dealt specifically with digestive problems. Did about two weeks or so there. They waited a few days and decided to do the surgery on August 17, 2011. I had a portion of my ileum removed. I was told that I had an abcess full of pus, which was like causing my increase in pain, a lot of damage, and a tear that had apparently healed on it's own since I had gone so much time without treatment, the surgeon said she was surprised I was able to go so long without the surgery, so aparently the tear was pretty bad. I am currently in week 5 of my recovery. Took a bit of time getting used to the bag, and experienced mild irritation around my stoma, but overall doing well. I'n fact, my surgeon has scheduled me for a CT scan next month and depending on how it looks I can be reconnected. I'm a bit nervous, but am so ready to return to some semblance of normal daily life without the ostomy bag. :ycool:
 
HI Crohnschick, Welcome to the forum, I don't know if i could've lasted that long especially with all that pain. but, i am glad you got a diagnosis. Sorry about the ostomy bag though but, it is incouraging to know it can be reconnected. Some people have it for life. But, you seem to be managing it pretty good. I have had now for 21 years now and counting and it is a up hill battle.But, with the right diet and right medications you can go into remission. It all takes time. This forum is very supportive and very well knowledged so if you have any questions just fire away. and again nice to meet you. best wishes.
 
welcome to the forum!! wow you've had it pretty rough! glad to hear you are getting on well with the bag! i got mine 9 weeks ago now- though mine was permanent, it's amazing how it just begins part of your everyday routine without much thought.
fingers crossed that the ct scan gives you good results!
take care! and all the best!
hannah.x
 
Hi CrohnsChick,

Things will get better, the illeostomy will become more normal and the irritation will disappear. I have got a temp illeostomy myself, i have had it now for 4 1/2 months and hope to have it only for about 6 more months. I think you stop also becoming self conscious it as well, whether under clothing or in public toilets. Stay strong things will get better. Hopefully the CT scan will reveal more detail.
 

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