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From: t3346875@strato.net
Date: 05/14/00
Time: 18:16:55
As someone suffering from a progressive neuromuscular disease called SMA (like ALS), I have developed a GI motility disturbance (autonomic disturbance) with chronic constipation and GERD. This has resulted in necessitating a bowel care program of tap water enemas 3X weekly and medicating with Reglan, Zantac, Colace, and Miralax.
All I can say with certainty regarding my elimination problem is that a Gastrographin enema (using KUB) exam excluded a number of potential causes except mucosal lesions due to the large amount of fecal matter throughout the colon. All other tests, including X-ray's, stool, blood, and external palpitation, proved negative. I've tried Propulsid and now switched to Reglan, with highly questionable results. I was finally told I'd need a motility expert, but no referral/recommendation/further information has been forthcoming. I'm willing to risk my life, if need be, in order to obtain a tolerable, long term resolution to my chronic constipation nightmare.
Despite the risk, I'm considering surgical options to put an end to this situation. To compound the problem, I have severe scoliosis and COPD. The surgeon that placed my G-tube (PEG) claimed that ones stool is basically liquid up to the sigmoid colon, so that is the point he would move to my right side (due to my spinal curvature) to create the stoma. Couldn't he just laparoscopy create the stoma in my ascending colon (the relatively flat and "open" area of my abdomen)? Would the readers of this please offer me help and guidance?
What Doctor(s)/medical facility would you recommend? Does Medicare/Medicaid pay for post op supplies? Would you send me information about Percutaneous Cecostomy Catheter (C-Tube), Malone Antegrade Colonic Enema, orthotopic cecal imbrication, and recommend enterostomal therapist.
I hope someone can help me find such motility expert, resolutions, even just other GI/constipation/motility mailing lists, news groups, web sights, etc., as it's so badly needed. :[
I'm grateful for any information relating to this entire matter.
Tim