Advice Please!!

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Regular Member

Date Joined Jan 2011
Total Posts : 38
   Posted 1/17/2011 9:44 PM (GMT -6)   
Hi everyone,
I have just registered on this site, so I am new. Just a little background information, I have had Scleroderma since 2007, but have had a lot of trouble with my bowels for nearly 2 and half years. I have been seeing a Gastroenterologist for three years, and not had much help with him. During this time, i have been going  to the toilet anywhere between every 4 to 9 days, multiple times, with severe cramping, nausea, heaving to empty my bowels. Also, with diahrrhea, and constipation. I have had the usual Gastroscopy/Colonoscopy, all is ok there, I have been told by my gastro doctor, there is nothing that can be done, just put up with it.
I have basically forced my gastro doctor, to write me a referral to see a general surgeon, about possible having an ileostomy. I found out that I could possible have an ileostomy through a friend.
I have recently had a Colonic Transit Test for Constipation, and the results were , I have Colonic Inertia. I am not due to see my general surgeon until next month, so I am not sure, whether I would qualify for an ostomy.
I am not sure whether I can post more extensively about my transit results, if the moderators say I can, then I will.
I am basically asking anyone, what they think what kind of Ostomy I could possible have, and some advice.
Many thanks

Veteran Member

Date Joined Jan 2007
Total Posts : 4147
   Posted 1/18/2011 12:43 AM (GMT -6)   

Does scleroderma affect the small intestine or just the colon? You need to find out this info.

If it only affects the colon then an ileostomy would work, or if your pelvic floor and rectum work, then maybe you could have colon removed and small intestine hooked to rectum. BUt you need to have lots of tests to see if nerves and muscles in the rectum and pelvic floor work first before trying this second idea.

My knowledge of Scleroderma is about nill. But isn't it where tissues sort of harden into a leathery type material? If this is so that may be happening to your colon and could be happening to your pelvic muscles and rectum. If it is not happening to your small intestine, then the ileostomy would likely be the best solution.

You really need a GI, a colorectal surgeon, AND a Scleroderma specialist working together with you.

THis sounds tough. Good luck, Rosemary
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