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Anyone have good and bad stories of having an ILEOCECAL Resection?
Hello,
I have managed Crohn's on my own with the advise of my 1st GI 20 some years ago, who started me on a better diet verses meds. I've had to be placed on steroids here and there. Colonoscopies showed slight narrowing of the ileum. Last year out of nowhere, I developed a colovesicle fistula, that was treated as a UTI(I have never had one before) and put on antibiotics every 2 weeks for almost 5 months, CT showed nothing, until I wound up in the hospital with sepsis. 2 months more of rounds of antibiotics, landing in the hospital with sepsis 4 times in 1 1/2 months, hoping it would close on it's own, I wound up catching Cdiff and then had to have the ileostomy. I only have 20cm of diseased small intestine to remove. They want to do a reversal but take my cecum/valve out: Ileocecal resection. I have been on Remicade at 5mg, but I have formed antibodies, so no longer affecting me. Now they want to up the dose to 10mg. However, with that, fasting, eating healthier than I ever have, I have no disease in the small intestine and a recent ileoscopy shows the fistula closed on it's own. In REMISSION!!! Really don't want to increase the Remicade dosage. However, the colonoscopy show the worst case they have ever seen of severe lacerated diversion colitis/cryptitis in the large bowel.(I did have Cdiff before the Ileostomy) I want to have a reversal, however, I do not want my Cecum taken out. I want to believe my body can heal the fibrosis. I have read there are clinical trial for it with IBD and fibrosis.
Before I make a decision, I would like to know of ALL stories of reversals and ileocecal resections, good and bad.
All feedback and experiences are helpful along with MUCH praying!!!!! Thanking all of you in advance for your comments! Blessings to you all who have had to deal with this, similar or worse situations : ) 🙁
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Two years ago I lost half my colon and some of my small intestine because of a volvulus (twisted colon that cut off blood flow, so intestinal tissue died). I was given an ileostomy, was told it was reversible, but that I would have to live with it for 6 months. The purpose was to rest the colon and let it heal. The ileostomy was reversed as promised. I spent a week in the hospital for that. After the surgery, it took a few weeks before my colon settled down--apparently it had to get used to having food in it again. I learned to live with the ileostomy, but I was extremely glad when it was gone. Let me know if you have questions.
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1 ReactionI posted this reply on another thread three months ago--but it seems relevant to you questions. I also posted about this issue on May 4, 2025
Post from July 4, 2025
My reversal was nearly 2 years ago, so I honestly don't remember when the totally liquid BMs improved, but I'd guess a couple of months. As I mentioned in my post, even now, almost 2 years later, I have them once in a while--and can't identify any cause.
I was prescribed cholestyramine powder, taken 3/4 times a day. It didn't make a lot of difference for me--but worth a try. I preferred wheat dextrin (Benefiber/ Walmart has an equivalent). But dextrin can be constipating--also not good us hemi-colectomy folks.
Medications: loperamide/Imodium AD 2mg and/or Lomotil / diphenoxylate+atropine, 2.5+.025. Both are OTC at lower dose but need prescription for higher dose. Again neither worked much for me, but also worth a try.
I suggest husband keeps a BM diary for the 2-4 weeks (# BMs, time of day, consistency, check out Bristol Stool Chart as to how to rate). If no improvement, let doc know.
Thinking back, I'd say only time really had much effect. I was so, so very glad to be rid of the ileostomy bag that I really can't remember much of my initial bowel inconveniences!