Issues after IC valve removal

[CDmama87]

Hi everyone,
After my second small bowel resection surgery a year ago with the removal of my IC valve, I have had D ever since. But for the past few months it's been nearly constant fiery water-poop. I've had a closer-to-normal BM maybe 3x since the last surgery. I didn't have very much small bowel removed, I think about 4 inches the first time and around the same + IC valve the second time, so I didn't think that small bowel syndrome would occur.

Has anyone had D this bad? I've read that some never return to quite normal, but I have to RUN to the restroom minutes after eating, no matter what I eat, no matter what time of day. I don't eat until I get home from work, then I'm stuck at home because I'll be too busy pooping for the rest of the night to be able to go anywhere.

Immodium used to help a little bit, but the effects seemed to wear off, and when I take them I bleed a lot. Same with psyllium husk, if I can even manage to get it down without barfing - it seemed to help at first, but I've already adapted to that too I guess, it doesn't really help and just a tsp or so makes me bleed.

I don't know what in the world to do to help. I just had labs done and everything was great except for low Vit D and Vit B-12. I was on Remicade for a little while, but am currently not taking any medication. Remicade did not help with D either.

I need to get a colonoscopy done, but I'm moving so I will have to switch my GI Dr. I just wish I knew if this is a flare (no other symptoms), SIBO, or if this is really just my new normal and there's nothing that I can do. I read the post about the guy that ate 6 bananas/day, maybe I'll try that.

Thanks for reading. Any advice

 

[lgpcarter]

I had mine removed July 2016. They took 25 cms total, mostly large bowel, the IC and some small. My surgeon said it would take a while for BMs to be "normal" again, but I didn't;t have much trouble at the time. Things firmed up again.

Things are terrible now, but mostly because of fistulas and rectal/perianal disease. My doctor has prescribed Colestipol to help firm things up and reduce the volume of stool. I think it is helping a bit - you could ask your doctor about that.

Sorry this is happening to you. I am dealing with staying pretty close to the toilet pretty much all the time these days or not eating if I have something I have to do. It really sucks.

 

[DEmberton]

Sorry you've had it so bad.

Mine was 4 years ago and I don't think not having the valve has made any difference to me. As I understood it the only likely problem is an increased risk of SIBO.

Have you had the Bile Salt Malabsorption test?

 

[NuttyGuts]

Reading these posts adds to my fear of having surgery! Even though my recent MRI shows that my IC valve, cecum and appendix are all okay, the surgeon says that they will mostly likely all have to go when and if we choose to remove the diseased part of my terminal ileum. I worry about taking out perfectly good parts, and what the ramifications of that might be. SIBO and forever diarrhea were two thoughts that occurred to me. I wish they could just take out the 23cm or so of diseased small intestine. My strictures are getting worse, so even though we are trying Remicade and Imuran first, we are pretty sure surgery is in my future.