Suffered with Ulcerative Colitis for 18years. Recently had Surgery to remove my colon and have a stoma bag. A couple of months later, I've been bleeding from my rectum and my specialist has diagnosed me now with Diversion Colitis. Been struggling to keep it under control since it started in July this year and no one really knows how to treat it..
Anyone experienced this and what have you done to treat it please?
Sorry to hear that. I have never heard of any of that. I know this doesn't do you any good, but I was told time and time again years back to have my colon removed and do a j pouch. I did not and now I take a drug called entyvio that has me as good as normal.
Hi, my son had bloody mucous discharge after his ileostomy and stoma formation. The output was variable and he was treated by asacol pessaries which he had to increase as his discharge increased. The Consultant didn't give it a name.
He had the last part of colon removed, as it is more likely to get cancer than healthy bowel, during first reversal operation. This stopped any discharge. I have written a lot on here under j pouch.
Good luck.
Sheila.
Thanks Rob96807.
I first tried Infliximab last year but after 3 months it stopped working, so I then tried that Vedulizimab (entyvio) which took some time to kick in and did work quite well and make me feel better.. just not 100%. And I was tired of the infusions, and possible side effects of it are not well known.. the long term ones especially. In the end I just opted for the surgery.. Just taking some time to adjust to managing the bag and the diversion colitis is really causing discomfort and inconvenience unfortunately..
Thanks Sheila, will take a look..
Dear MrMan,
I'm sorry to be unhelpful, but I have not come across 'diversion colitis' before.
My sincere good wishes to you and I hope that you may find a specialist who can help you cope with this nasty-sounding complication.
Peter
Just out of curiousity how come they went with a bag vs j pouch?
Hi, sorry for the quick message but wanted to leave an answer and had to pop out.
Hope you are coping well with your stoma. My son was told the bloody discharge was due to the last 6 inches having UC symptoms. The mucous which mixes with it is part of the usual mucousy secretions from the bowel which we dont usually notice because they become part of the stool during transit.
Have you considered a reversal to an internal pouch at some point?
My son would highly recommend.
Were you sent home from hospital with blood thinners, anti-coagulents, as UC sufferers are up to 3x more likely to get a DVT after abdominal surgery?
Take care, Sheila