diversion colitis

Need input from those who still have their colon in them but have an ileostomy (long term or permanent.)

Due to irreparable rectal and colon injury in 2006, I had to have a permanent ileostomy in 2007. So far I had been fine with the periodic fleet-sized warm water enemas (no salt as that is irritating) to get out mucous from my rectum/colon. But when I did this the other day, (need to do this about once a month or once every 2 months) some sort of major irritation has started. I got the mucous out, but then had horrid cramps last night and today, tons of blood tinged mucous came out. When I have to have this suctioned out, sometimes my colon lining looks almost normal but other times it looks friable as in disuse colitis. I never had an issue with cramps before passing the mucous. Have had major issues now for 24 hours. I let the doc's office know and they said if it doesn't stop they would get me in.

I did some research and I did find an article that says cramping is possible with this benign common condition. It occurs due to lack of short chain fatty acids that usually nourish the inner lining of the colon. The remedy according to one article is short chain fatty acid enema's only 60 cc twice daily. Has anyone had experience with this?

So far so good with the ileostomy stoma itself and given the history of my original gut injury I'm lucky to still be here. BUT, I do need to address this. If anyone posts back, let me know if you had the cramping just before the expelling of bloody mucous or did your mucous come out without cramping? I'm the most concerned about that. I've always been a bit prone to slight bloaty feeling from some foods (yet don't actually look bloated), but I've never been prone to digestive cramps. (My concern is that before my ileo and lysis of adhesion surgery, I had multiple small bowel obstructions from adhesions, but these cramps aren't the same kind and so far ileostomy is working just fine and I feel fine otherwise.)

Thanks, Rosemary

oh yes, cramps are typical, at least for me. It's just my rectum which is spastic anyway but with the diversion colitis it was really bad.
inflammation typically leads to cramping pain, e.g. in chron's and UC.

Yes, I am Sarah. It has been a very difficult time for me in the last three months - I still struggle day by day.
The enemas were suctioned out as I could not stand the rectal spasms. My rectum is dysmotile either and anything in int worsens the situation. I dont think long absorption of the enema would do any harm, though.
if you like you could follow my struggel at my caringbridge site I created in the beginning of this year.
www.caringbridge.org/visit/cippelztier86

i had the enemas for 3months. every 14 days.

Sarah,

If you are still checking in, my new ileo surgeon who took over for mine who retired emailed from AUstralia that I should do another warm water mucous enema! That is what triggered the whole diversion colitis thing in the first place. NO WAY am I doing what caused the issue. He said to soak in warm water. This does no good. The diversion colitis IS the cause of the spasms and cramping NOT the other way around. Oh, God, here we go again. I am at a loss. His nurse was very nice and I said what would you do if you were in my shoes and she said I could have him call you tomorrow. I said, that would be great. Rosemary

Thanks Gutsy One. I will check out the site and print out the suggestions. Rosemary

Hi Sarah,

Just met with my ileo surgeon yesterday and have the 3 steps that he uses:

1. Anusol HC suppository steroid
2. Canasa Suppository anti inflammatory
3. Butyrate enema (short chain fatty acid) this is what our colon is lacking due to disuse.

I have my whole colon and rectum in permanent disuse. Usually have mucous suctioned out rectally every 6 months. usually despite all my colon rectal scarring i can get out what i need to with a warm water enemas in between suctionings. however this summer after i did an enema i had a week of active disuse colitis with severe low cramps and actual running to the bathroom to poop out blood and mucous that came out in actual liquid form. this was one week out of four years. i was terrified it would happen again. so far not but it can. so i asked what my surgeon would use on me if an episode never cleared on its own and these are the things he said they would use at his practice. Good luck. Rosemary

My original ileo surgeon's replacement does it now. Original ileo doc retired. Any of these colorectal surgeons should be able to do a suctioning. It is just a slim sigmoidoscope that is put in a bit of a way. You can actually see the clots of mucous on the TV. They just spray a bit of water and suck them right out for you. Just think I have my whole colon and rectum to accumulate mucous; my ileo doc could not remove my colon at the time of the ileo as I was already in too much trouble with the small bowel scarring from the original surgery that lead me to need the lysis of adhesions and ileostomy Rosemary