Anyone have good and bad stories of having an ILEOCECAL Resection?

Posted by oceangal17 @oceangal17, 1 day ago

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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