Bowel resection not worked?!

It seems to me that you need a firmer diagnosis. You shouldn't have been told, "it probably wasn't Crohn's".

You either have it or you don't. Have you had biopsies done during a colonoscopy?

If you indeed don't have Crohn's, then you might not get much helpful advice on this forum. If it isn't Crohn's, then it could be numerous other things from Celiac to IBS to allergies.

You really need to see you GI or get another opinion. Hope you're feeling better soon.

Claire, do you know how much of your colon was removed - where they started and ended? Did they remove the ileocecal valve which would have a greater impact on loose stools and malabsorption?

The ileocecal sphincter valve is part of the terminal ileum, so I would think it was removed, but you'd have to ask your doctor to be sure. Since this muscle sphincter is a kind of "shutoff valve" between the small intestine and the colon, controlling the liquid chyme coming into the colon, its removal will predispose you to issues like diarrhea and bacterial overgrowth. The following quote is from a CCFA article about short bowel syndrome, but it mentions the removal of this valve:

http://www.ccfa.org/assets/short-bowel-syndrome-and.pdf

"Patients who have had their ileocecal valve surgically removed (typically during a resection procedure) may be at heightened risk for developing small bowel bacterial overgrowth. This valve, which connects the small and large intestines, normally prevents the flow of bacteria from the large intestine to the small intestine, and without it, the movement of bacteria goes unchecked. Symptoms of small bowel bacteria overgrowth include diarrhea, bloating, nausea, and vomiting."

I agree with you. I was a bit naive when I had my surgery - my surgeons waited until just before I was going into surgery to tell me that I would have life-long diarrhea. Not exactly what I wanted to hear just before going under. That hasn't been the case, in part, because I take medications that slow my gut down.

I take a small dose of Elavil which has the side effect of constipation. I actually started it for another medical issue. Even though I was taking it that first year after surgery, I still had chronic diarrhea and it only gradually got better. It was only after I got off the Elavil later on and then started back with constant diarrhea that I discovered just how much it was helping. I've also been on a low dose of narcotic medication for chronic pain for years (spinal cord injury and arthritis), which has the same side effect. I've managed to get down to 1 pill a day for the past few years. I should say that I can't take Imodium, which is why I don't use it.

My situation is a lot different from yours, though, because I still have a terminal ileum. The portion of my colon that was removed was the entire descending left side, the sigmoid, and half the rectum.

I would think that if your ileocecal valve is removed, you would need the Questran. It may take more time for it to make a difference, but that's just a guess on my part. It could be that you have developed the small bowel bacterial overgrowth that the CCFA article I quoted mentioned. Your symptoms sound pretty much the same.

It may take time and a combination of meds, but I hope you can get some help with it. I know how frustrating a limiting it can be. I still carry a packed change of clothes and toiletries just in case because when it hits, I cannot hold it in.