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FAP Sufferer develops issues after surgery

Hi,

I've had FAP all my life and had bowel surgery to remove the large colon, stitch the small to the rectum at 7 years old.

I had more surgery last November to remove a skin layer called mucosa to prevent cancer in the rectum. Ever since this the op I've lost my bowel control.

I go maybe 15+ times a day, I cannot identify any trigger food, taking loperamide before every meal and bedtime doesn't help much. I can barely get out of the house at the moment.

My surgeon thinks I've got temporary ibs, my gastroenterologist thinks crohns and my gp is trading my for anxiety lol.

Any suggestions¿

3 Replies
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FAP?

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familial adenomatous polyposis, it's a genetic disorder

Reply

So sorry for you, Im sorry I cannot help but your problem I can

indentify with, but for different reasons.

I had a proctosigmoidectomy ( rectum removal ) 6 years ago due

to problems associated with ibs, and the times I visit the

bathroom drives me nuts. I scream inside with the discomfort

of going so many times, my backside feels like Im walking on

glass and I ask myself how long can I go on, I know I cannot

face a colonoscopy, not certain I spelt that right, as they are not

without problems, I have a problem dealing with everyday life

and its ups and downs if Im having a bad day. The upside is that

a couple of days a week, if Im lucky, Im reasonably normal.

Ive tried Apple Cider Vinegar, with some success, I take

Immodium, but rather than a whole capsule, which bungs up

the works completely, I have tablets which I cut in half, and

to be honest, dont seem to have much effect. The idea is to

slow down the transit of food through the system, but doesnt

seem to matter what I eat, nothing seems to work.

Sorry Im not much help, but at least you know you are not

alone. Ive searched lots of sites on the net but Ive never come

across anyone with my problem, you are then nearest.

If I can help in any way Ill be glad to, good luck.

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