Colonic Inertia, and severe GI problems

Hello all, I'm new to the site, and thought I would register, and see if anyone can help me, or if someone has soffered in the same way.

I am really struggling at the moment, I am a 30 year old man.

My first operation was at 2 for gangerine peritonitis.

In the last 4 years inhale had 3 laparotomies, for bowel obstruction.
Been in and out of hospital with severe pain, bloating etc.

I recently got referred to a surgeon, who ran some tests. 

Firstly I had the barium Enyma, which confirmed Pelvic Floor Dysfunction.

After this test was run, I had to swallow 50 sitz markers, when I went back 3 days later all 50 sitz was still in my colon. Which confirmed colonic inertia.

Straight after this I was required to eat a meal of mash with beans, then they ran a halogen test, to see if my small bowel was breaking food down, and working normally. This test also confirmed that I have severe slow transit in my small bowel too.

I have since seen the surgeon who was very shocked with y results and said it was very rare, as for the colonic inertia they would have removed my colon and attached my small bowel to my rectum. But as my small bowel isn't working properly either, they cannot do this. I am severely struggling with day to day life, and feel like I'm suffering alone, I have been prescribed an off licenced drug, which has been tested on women's bowels, this did now work. I am stuck in limbo now, am taking every laxative, enyma and meds available, and nothing at all is working, im even struggling to breath, and feel as though my bowel is going yo burst. I have 2 children and it has got to the stage now, where i cant even do day to day things, even my morphine patches aint touching the pain. Has anyone else suffered similar problems, with colonic inertia and slow transit in small bowel too? Any information would be really appreciated. I have googled but cannot find anything with both these problems. Please help.
May I Also add that I am only on morphine as my surgeon has said that my bowel is so slow that the morphine won't slow my bowel down as there that bad. And that my pain is so bad morphine is three only medication that sometimes takes the edge off the pain. I really for feel like I'm fighting a losing battle here, my days are getting worse, and I am really struggling time cope now. I thought there was a bit of light when they mentioned taking my colon out and hooking my small bowel to my rectum, but as stated above they cannot do this as my small bowel is very slow transit too. Is there anyone who knows or has heard of anyone with similar problems i can only find slow transit problems in one of the bowels. Any help is really appreciated. Can i also add that i have tried everything possuble, exercise, special diets, and every med possible for helping me go to the toilet. Regards

Hello, thank you very much for your reply, I have had the breath test for bacterial overgrowth and that come back negative, after that test I was required to eat a meal of mash and beans, then they tested me for 8 hours to see if my small bowel was breaking food down, this test come back positive. That's how they diagnosed small bowel slow transit. I'm glad someone knows what I'm going through. Yes I am from the u.k. I've heard back from wythenshawe hospital, and am awaiting too see a professor there now to arrest the next steps will be. I seem to be getting worse every day. My food intake has been changed to fortI sips. It's like a losing battle, just want an idea of what surgery to expect. At moment I look about 7 months pregnant, I've stopped my morphine. For a day or two as it just makes me feel like a zombie. But helps the pain. Every time I speak with a gastrointestinal surgeon they just seem shocked and say this is very rare, to be diagnosed with slow transit in both bowels. Then pass me onto another surgeon On my MRI scan they said I have a lot of adhesion too. I am confused as I cant find any information

Wow.. ok. It sounds like a combination of adhesions and a motility issue, combined with the hernia. You poor thing. I get the 7 months pregnant thing as have been there too... it's just awful. Hopefully the new Professor will have some ideas. I do think some sort of surgical intervention - whether that's a stoma, a resection, repairing the hernia or removal of adhesions - could improve your quality of life. I'm not surprised you can't find anything on the internet. I recently looked too and you're right there's nothing.. I guess its' just so rare.

I was recently referred to a Prof in London who is a Global Expert in motility.. drop me an email via my profile and I'll email you his name. They thought I had small bowel motility issues and he's done a biospy of both my small bowel and colon. I had my stoma revised 2 weeks ago and it seems like that was the issue (I had multiple adhesions and the stoma was stenosed) rather than SB motility. Everyone was saying to me it was so rare but they were all convinced it was the problem. A local colorectal surgeon said he'd only had one case in his whole career.

Given you have so much pain, I wonder if that is more adhesion related? that should be something that they can address.

I'm really sorry you're suffering so much. It sucks. No other word for it. If you get into too much trouble with blockages then get to A&E. You need to get in with the BEST surgeons and team you can find, even if it means travelling. Hang in there if you can. Sarah