Has anyone with a permanent ileostomy for UC ever developed Crohn's afterwards?

What you're seeing is likely people who were incorrectly diagnosed from the beginning. It can be hard to differentiate between Crohn's colitis and UC in some people.

No one really knows if Crohn's develops later or if it was Crohn's all along. It's more of a philosophical question than anything else for the patient.

In any case, about 20% of Crohn's colitis patients who have a colectomy with end ileostomy end up with disease recurrence elsewhere in the GI tract. Since our current paradigm is that some "UC" patients who have a colectomy with end ileostomy were actually Crohn's patients all along, those patients are subject to the same or similar odds.

There's a theory that pouchitis or Crohn's-like inflammation of the ileum are more likely to recur in patients with pouches because of fecal stasis -- having waste sitting in the pouch remodels the cells of the pouch so that over time they actually look and behave more like colon cells, and thus are subject to the original predilection of the body to attack the colon. Although that issue is avoided with an end ileostomy, ileostomies are subject to other long term health effects that either don't affect pouch patients or affect them much less (e.g. bowel obstruction, parastomal hernia, prolapse).

They've always been pretty confident that I had UC prior to my surgery but I've ended up with cronic pouchitis since my take-down. I had a flex-sig about a month ago and they found (3) ulcers in my pouch; two at the bottom and one near the top of the pouch. So my GI wrote it up as Crohns with a question-mark and the pathology came back inconclusive.

It doesn't change the way I physically feel, I actually feel the healthiest that I've felt in a very long time. But at my office visit with the GI two weeks ago I was like W.T.F? He said it's academic and technically we can call all pouchitis Crohns since the pouch is made out of the small intestine and there is inflammation in the small intestine/pouch (crohns).

Katmom,

I feel really good. My Pouchitis is nothing like my UC flares.

Currently I am on Flagyl, Augmentin and a steroid (entorcort); I'm tapering off of Entocort and they recently added Augmentin to my meds.

Besides the 3 ulcers, the GI said the Color of the walls of my J-pouch looked excellent; better than most j-pouches he'd seen.

I think/guessing that my issues might be related to stasis in my pouch, I only empty 2-5 times a day and most days it's only 2 or 3 times.

Liz,

I was just speculating that it might be something "like" SIBO (Small Intestine Bacterial Overgrowth) since I am not emptying as often as other J-pouchers who do not have pouchitis/ulcers. And the small intestine normally doesn't have that much stool resting in it, but I'm speculating that mine is sitting there for a long time because I empty so infrequently.

en.wikipedia.org/wiki/Small_intestinal_bacterial_overgrowth

Small intestinal bacterial overgrowth (SIBO), is a disorder of excessive bacterial growth in the small intestine. Unlike the colon (or large bowel), which is rich with bacteria, the small bowel usually has fewer than 104 organisms per millilitre. Patients with bacterial overgrowth typically develop symptoms including nausea, bloating, vomiting, diarrhea, malnutrition, weight loss and malabsorption which is caused by a number of mechanisms.

My GI dismissed the idea pretty quickly so I didn't probe any further during my last visit; maybe I'll ask for the SIBO test next time. I recently cut out all sugars from my diet and I'm feeling much better and my gut is less noisy but I started the Augmentin at the same time. I also get Thrush really quickly when I start Flagyl, so I need to treat it constantly now. So maybe I do have a bacteria issue going on.

I have also taken Xifaxan for a few months and it didn't help that much.

In my case, I was diagnosed with ulcerative proctitis back in 1998. My disease NEVER spread further than the rectum. I have no idea what kept it at bay, maybe the medication..Colazal? However, my rectum was so badly diseased that my quality of life was very poor. My surgeon told me that even though my colon was not diseased, it would have to come out along with the rectum. I didn't care because at that point, in 2010, I had had enough! My surgeon left the anus, much to my surprise. I was ok until last summer when I started feeling pressure inside the anus. Since my surgeon retired in 2013, I am seeing a new colorectal surgeon here in Jersey. Yep, the UC came back into the anus. He blamed my use of Ibuprofen, for back pain, caused the flare. He prescribed Cort and Canasa suppositories. Well, I cannot tolerate the Canasa, but the Cort is ok. The odd thing is that whatever I insert into the anus pops through to my vagina! They did extensive biopsies and while I was under anesthesia, the doctor said he looked into the vagina and cannot find any fistula. I am feeling much, much better now, am off the suppositories and my next visit to the doctor is May 13th. Just hope he doesn't dig around in there because it sure was sore after my last visit in January! OH...and he didn't oppose my operating surgeon for leaving the anus. At the time of my operation, my condition was dire and he agrees I most likely would have not been able to tolerate such a lengthy operation. He did suggest I have biopsies every two years, but doesn't suggest I have the anus removed.

Notsosicklygirl: Let me tell you... right now I know things should get better with my jpouch, but if I were before step 1 I would have gone for an ileostomy without batting an eye. You will be so much better off than anyone else with no chance for inflammation in your body. The bags are not so bad and you get used to them. When there is a problem, you solve it by finding hardware. Not with drugs. Just find a new accessory for your bag. A belt, a different brand of bag, etc.

I suggest this. Try wearing an ileostomy bag and fill it with water and air. Try going about your life and see that it's not so bad. Everyone told me that it is a bad option and that I should go for the pouch if I have the chance.

That is not the truth. If you can love your body with a stoma, then you can have a much easier life. If you want to talk more about it PM me. I just want you to know that so far it is the highest quality of life I have had and I am only hoping and praying (and waiting in pain) that my jpouch will give me the same. :)

it's call blood differential panel I think
www.questdiagnostics.com/testcenter/testguide.action?dc=TS_IBD_Differention_Panel

it sounds like what you're talking about.

My pathology always comes back as UC too. The weird thing about the test, is that in my case, they weren't concerned with whether it was UC or Crohn's. They said that the particular result that I got indicated that in my case, even though I have UC, I would have trouble with a j-pouch. I understand that an external pouch is an option but I really prefer not to have one so it puts me in a position where I feel like I am better off dealing with the flare ups until I can't (which may be sooner than later).

notsosicklygirl said...
My pathology always comes back as UC too. The weird thing about the test, is that in my case, they weren't concerned with whether it was UC or Crohn's. They said that the particular result that I got indicated that in my case, even though I have UC, I would have trouble with a j-pouch. I understand that an external pouch is an option but I really prefer not to have one so it puts me in a position where I feel like I am better off dealing with the flare ups until I can't (which may be sooner than later).

NSSG,

There are other internal pouches like the BCIR or the K-pouch; they do not empty through your anus. I "think" it is through a catheter.