Please Help - severe constipation post total colectomy

Hi,

I am new to this site and seeing all the response and help out there I have turned to all of you for some advise and help.

I am 38 years old and had a Total Colectomy in 2005 after being diagnosed with colonic inertia. Shortly after the surgery I started getting constipated again and before long I was back on the laxatives, then added enemas and then the fluid diet. 18 months later a sacral nerve stimulator was implanted in my buttock (pacemaker like thing) with no effect. I have been living like this for 7 years, all that's changed is that i have substituted the enemas for bi-daily bowel washouts. If I eat anything solid I cannot pass it and even having difficulty expelling it with the washout. I am forced to eat fluid or very soft "baby" foods. I have lost in total 12 kg in the first few years but my weight has stablized for the past few years.

Apart from not being able to go to the toilet normally or to eat normally, I repeatedly need hospitalization (12 times in last 7 years) for "bowel obstructions". These are not mechanical (although the first one was caused by adhesions and surgery was necessary) but appear to be functional. The anastamosis of small bowel / rectum suddenly stops working and peritstalsis doestn't take over in the rectum. The only way to relive the "obstruction" is to pass a flatus tube to the area of anastamosis to bypass the upper rectum and drain the contents by way of the tube. I get severe bowel dilatation, bloatedness and abdominal pain during this time.

The doctor who originally operated on wants to perform a Duhamel Ileal reservoir where they remove the rectum and anastamose the small bowel directly to the anus. The risk: faecal incontinence and ultimately an ileostomy.

I have since found another doctor who has a far more conservative approach. He diagnosed pelvic floor dysfunction, I was forced to resign from work to take part in a rigorous 3 hour per day biofeedback programme which apparently toned my pelvic floor beautifully but still as symptomatic!!! He refuses to operate on me.

Any advise out there? I cannot carry on eating fluids and doing washouts for the rest of my life - my quality of life has seriously been affected, but on the other hand I don't want to endure yet another serious operation and loss of another organ only to be in the same boat or still end up with the "bowel obstructions" which require hospitalization 2-3 times per year?

DESPERATE for ANSWERS!!

Hi

Thanks for your input. I am glad that you are doing so much better than in your early days.

I agree that diet has a huge influence, however in my case I haven't had bread or cake in 7 years, I only eat soups / pureed vegetable and almost no meat as it doesn't appear to digest easily. I am a self-confessed chocaholic - absolutely love chocolates as it's smooth and melts quickly! I have however had no forms of sugars or chocolate in 3 weeks and have actually just been discharged on Fri from hospital yet again, so this couldn't have been from eating incorrectly. So not sure it applies in my case! I kind of have to eat half digested food to begin with. Any other ideas that may help?

Hi Marsky

Thanks for your words of encouragement. An osteotomy definitely appears to be the answer I am hearing to my questions lately. I just need to find out whether my small bowel motility is working otherwise i may still end up in hospital with obstructions. The op they have suggested will probably end me up in a similar situation to yours whereby i'll have nowhere for stool to collect and may even cause incontinence! Decisions!! I meeting with my doctor tomorrow to get his and a few of his colleagues decisions about the way forward.