There has got to be something to control this. I am desperate. My doctor thought that once I had the takedown, things would slow down because my ostomy was high in the small intestine. It is not slowing down. I was told to expect up to 12 BMs a day. I go 1-4 times an hour around the clock. I get NO sleep. I go to the bathroom, lay down, and already have to go again. It is painful when I have to go. I CAN hold it, but it hurts. If I go anywhere, I have to go to the bathroom before leaving, go when I get there, go in the middle of shopping, go again before leaving. I can't be in the car too long. I can't wait in lines. I can't do this anymore.
We've tried 8 imodium a day (capsules and liquid), Questran, Lomotil (capsules and liquid), and Octreotide (Sandostatin) injections and infusions. Nothing makes any bit of difference. Honestly, I go just as much on all these meds as when I take nothing. Diet doesn't matter. If I eat a banana and rice, it goes through just as fast as if I ate something like a taco. I doubled my Lortab one day, and I made it 3 hours between going for most of the day. I told my doctor that Lortab seemed to help, so he prescribed me 5 days of it a couple weeks ago. It seems he doesn't want to prescribe it again. I have to be hooked up to IVs 19 hours a day to make up for what I am losing and I STILL end up in the hospital every other week for 4-5 days. Being hooked up all the time makes it really difficult for me to take care of my 13 month old son because he wants to pull at the lines.
How is this better than having UC?
Oh, and my doctor started me on a gluten free diet last week.
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Imodium (8/day), Questran (3/day), Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 7.5 mg (1/day), Florinef .05mg (1/day), Sandostatin infusion 300 mcg (2/day), Gluten free diet
Post Edited (pam222) : 5/10/2010 8:21:43 AM (GMT-6)