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Diversion colitis? Anyone get this while having diverting loop Ostomy?

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Posted 10/23/2015 2:15 PM (GMT 0)
The nurse and doctor told me I might pass mucus since I still have my colon. The first 10 days after surgery I never passed anything. Now I'm passing mucus and a little blood. It is a little uncomfortable when it happens, feels like colitis!

Anyways I read about diversion colitis when no stool or bacteria is passing through the colon. Has anyone who still had their colon have this happen? Did it go away as soon as takedown was done? The info I read said once stool and bacteria begin passing again the colitis will resolve. I guess my fear is that this might be a real flare and just weeks after surgery my crohns colitis already returned! I see my GI and surgeon both next week.
Posted 10/26/2015 11:34 AM (GMT 0)
I had my ileostomy done 9 years ago and have a touch of diversion colitis in what's left of lower plumbing. It has not been a major problem for me except for occasional minor discomfort. It is not being treated at this time.
Posted 10/26/2015 12:02 PM (GMT 0)
Yes, I had diversion colitis (or proctitis, really). It took me ages to pass mucus for the first time after my colectomy surgery - about 4 months, but I was having tenesmus for a few weeks beforehand. What finally came out was a foul and evil substance. After that I would pass mucus once every few weeks - over the course of two years it very slowly increased to being a daily occurrence. I would also pass blood occasionally, which would usually be accompanied by severe cramping.

I had a flex sig which showed the diversion proctitis. It was described as mild. The biopsies showed no signs of Crohn's. On that basis (and of reading studies where diversion colitis/proctitis didn't seem to make a difference to the outcome), I decided to go ahead with takedown surgery and be reconnected. Well, all I can say is it didn't go away for me. Or it might have done and Crohn's might have appeared in its place. I'm not sure yet. I'm waiting on an MRI scan to find out more.

If you do turn out to have diversion colitis, I'd try to get rid of it with treatment before takedown surgery. That's my tip. Dunno if it will work, but it seems like it might. I dunno why I didn't do the same, other than I'm a moron.
Posted 10/26/2015 12:26 PM (GMT 0)
NCOT - Your example is what i was worried about. I am going to ask my Dr Wednesday about using enemas to treat it. I read info that said some don't treat it and it resolves with take down and other info that recommended treating it with mesalsmine.

I just really wan things to be normal for a bit after my takedown after a year of constant symptoms!!! Even if it isn't my Crohns returning I will be disheartened if I am having these symptoms still after 2 surgeries!
Posted 10/26/2015 1:24 PM (GMT 0)
Since my diversion I have experienced ergency, bloody mucous, fatigue.
A scope showed my pouch is still inflamed. Is it diversion pouchitis or just pouchitis. GI are putting me on Entyvio. Said no reversal till pouch looks good. This whole thing sucks. I have an appt with the surgeon in 2 weeks to beg him to reverse me as I hate this bag but now reading my GI is probably right. Afraid of Entyvio but afraid of pouch removal. Using Canassa and fatty acid suppostories, a bit better but still not good. Anxiety all time high.
Posted 10/26/2015 2:58 PM (GMT 0)
After my step 1, I had mucus but never blood. My rectum was still there but no colon. I am not sure if you can have what you're talking about only in the rectum. I had tenesmus and felt like I needed to push but no accidents or major urgency.

After step 2, i asked the surgeon about my rectum... my rectum was always terribly inflamed so I expected that it would look bad when he removed it. He said it looked good. He also said that often, inflammation is improved once no stool passing through. I asked if I could have reconnected to the rectum and he said that he doesn't recommend that because it very rarely works out well. He said once the stool passes through, in most cases, the colitis returns. Seems like what he told me is opposite what you read. He said people do better when there is no stool in there and the problems return when the stool is reintroduced. Perhaps this is something that is not agreed upon. I hope you get some answers. I think trying to treat it before you reconnect would be good. Let me know what the doctor says.
Posted 10/26/2015 3:03 PM (GMT 0)
cupcakespinkgal - I could have tried enemas. The problem was I didn't want to take steroids and I was scared of mesalamine because of my extremely bad reaction to oral mesalamine in the past. I wish now I had taken the risk of trying rectal mesalamine, because at this rate I'm probably going to end up doing so anyway. Except this time it will be harder to treat (particularly if it's Crohn's).

I know what you mean about wanting things to be normal for a while. I had a horrendous time in the hospital (I thought I caught a stomach bug, but my docs kept on denying it - I dunno who was right in the end). Was in there for 11 days and once I came out, I saw a rapid improvement at first. Quickly regained my appetite and felt optimistic for the future. That's completely gone. I held out hope for a month or so, but there was a point where I just knew what was going on didn't seem like normal post-op recovery any more. I've since had blood and stool tests done which were positive for inflammation. In fact, they were prepared to treat me on the basis of the blood/stool test results alone, but a) I'm not going back on pred, and b) I want to see what's going on inside first.

susan53 - Your GI is definitely right. I didn't love having a bag either, but uncontrolled pouchitis/IBD without a colon to at least minimally hold back the stool anymore is worse. Might be time to try a stronger rectal med than Canasa as well - think that's only 1g mesalamine and you can get higher dosages than that.
Posted 10/27/2015 1:13 PM (GMT 0)
NSSG I think we are talking about 2 different things. This is different than inflammation from disease. That does heal if rested, like with TPN. This is when there is no inflammation post surgery in the healthy remaining colon. It occurs from the absence of fatty acids and bacteria in the colon during the diversion and inflammation is created. It can actually happen in anyone with a colon and diverting loop, not just IBD patients although it is more common for IBDers.
Posted 10/27/2015 2:57 PM (GMT 0)
Crazy. I wish we could get a break. I remember we had a lady somewhat reccently named elw. She was dealing with diversion colitis and she hasn't returned since her takedown, so i would imagine she's doing much better and moved on :)
Posted 10/28/2015 4:50 PM (GMT 0)
Met with my surgeon and GI today and they feel confident my symptoms are diversion colitis but sent me for a CT scan just to rule out an abscess or any complications where I was reconnected.

My GI said it would be very rare for my Crohns to come back while diverted since diversion or bowel rest is used to heal Crohns and at the time of my surgery all disease was removed only healthy colon and rectum remained. She said I could use the enemas if I wante but in her experience it does very little for diversion colitis.

Waiting now for my CT. Fingers crossed all is ok. I am having tenderness there and that did seem to concern my surgeon and kind of freaked me out!
Posted 10/31/2015 2:33 PM (GMT 0)
CT did show colitis, but no other complications and reconnection site looks good. They are not able to tell from a CT if it is diversion or Crohns but feel it is most likely diversion. The surgeon started me on flagyl and cipro and the bleeding already stopped, just clear mucus now and my pain is almost gone!!! Hooray!
Posted 10/31/2015 3:35 PM (GMT 0)
That's great. Did you schedule your reconnect?
Posted 10/31/2015 7:41 PM (GMT 0)
Not yet, I was really hoping to get it scheduled because I want to make sure it's done before year end. But I have a very conservative surgeon, so I have another appt in 4 weeks and he said if everything still looks good we will shoot for the 2nd or 3rd week of December.

Work doesn't know yet that I have to go back out again after I come back for just 4 or 5 weeks. These multiple stage surgeries are so hard with a job!
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