Re: Life on TPN due to inability to find effective treatment for post-op diarreah(diarrhea)

Posted By Donna on August 25, 1998 at 06:52:12:

In Reply to: Re: Life on TPN due to inability to find effective treatment for post-op diarreah (diarrhea) posted by HFHSM.D.-ym on August 24, 1998 at 16:31:47:






: : I have been on the medical-merry-go-round for 21 years. Nineteen of them with UC, the past two after total proctocolectomy with ileal pouch anastomosis, with unending crampy, urgent diarreah (diarrhea), 20-25 times a day. No reasonable answer other than a severe motility problem leading to malabsorption has been offered. I have been evaluated all over Philadelphia, and have consulted with the Cleveland Clinic and Mt. Sinai in NY city. NADA. I suppose there is worse, the TPN IS keeping me alive, however if I don't explore every avenue open to me, I may miss an oportunity for help. This is really very frustrating for myself and my doctors of many years, any comment would be appreciated!
Dear Donna,
If the ileoanal pouch surgery is causing too many problems (diarrhea) and you are requiring TPN, have you considered an ileostomy? Although you may still lose fluid and electrolytes, at least you will not have the bad diarrhea sensation. If indeed you had ulcerative colitis (and not Crohn's disease) your  inflammatory bowel disease should be cured after proctocolectomy with ileoanal pouch anastomosis and your current symptoms are most likely secondary to pouchitis. I don't  know which anti-diarrheal agents have been tried but that is also an option to consider. Pouchitis can also be treated with an antibiotic called metronidazole (Flagyl). I hope you find this information helpful.
This response is being provided for general informational purposes only and should not be considered medical advice or consultation. Always check with your personal physician when you have a question pertaining to your health.
If you want to be seen at our institution please call 1-800-653-6568, our Referring Physicians' Office and make an appointment to see Dr. Muszkat, one of our experts in Gastroenterology.
HFHSM.D.-ym
: *Keywords: ulcerative colitis, proctocolectomy with ileoanal  pouch anastomosis, pouchitis, total parenteral nutrition
I appreciate your response. I have NO POUCHITIS, been tested too many times to count as well as taken flagyl and others. ANTIDIARREAHALS?!! Every single one and in combination! Imodium (immodium), paragoric,  ALL also, I have tried SOMATOSTATIN,those lovely injections, twice. That made me deathly ill!! I have taken CREON, and levsin and god knows what . Thanks for asking. I have had biopsies and blood tests and nueclear tests and x-rays and so many fecal tests for so many things that basically show that I have a severe motility problem that doesn't alow for proper absorption. Please note that when I had a temporary ileostomy between surgeries I had the same problem. Defecating from wherever is not the real issue, I just need to stop moving!!! Thanks anyway-Donna
Dear Donna,
I appreciate how uncomfortable you must be. You didn't mention tincture of opium or antidepressants that are particularly
constipating such as amitryptiline (Elavil).
This response is being provided for general informational purposes only and should not be considered medical advice or
consultation. Always check with your personal physician when you have a question pertaining to your health.
HFHSM.D.-ym
*Keywords: ulcerative colitis, ileoanal pouch anastomosis, post-op diarrhea
Hi. Sorry if I came on a little strong. I get a Lot defensive about the quality of life on the ileal pouch issue. I have been advised about the tincture of opium but never given any. This MAY (who knows) be from the FACT that while on morphine in the hospital(like this past december with a pnuemothorax,right lung) I did not experience any relief from the PROBLEM, just the sense enough to go to the pot(what a mess!) As for the anti-depressants, you bet I have- no relief for the diarreah (diarrhea). I have also been tried on blood pressure medication, all that did was keep me on my back. Once again, thanks for your interest and advice. It doesn't seem like there is anything (besides the opium) that I haven't tried. You are very kind to answer! Donna