I spent another 8 days in the hospital and got home yesterday. I have a central line now and have to get IV nutrition 12 hours a day. When I went in last Tuesday, I was in acute renal failure and severely malnourished. Even after a week on the nutrition and eating 3 meals a day, I am still low in some things like protein. My output is around 6 liters a day and nothing we have tried has slowed it. If I drink more, more comes out. It is physically impossible for me to take in more than I put out, which is why I need the IV nutrition. I lost 53 pounds in 2 months. Last I knew, I was at 26, but it doubled in a couple of weeks. I also had pouchitis and had to have Flagyl enemas for the week I was in. It seems to have cleared up now. The doctors have decided that my nausea and vomiting is due to dehydration. When I get dehydrated, I get sick and then throwing up just makes me more dehydrated, which makes it worse.
We spent 6 hours one day with several nurses and 6 hours another day (3 hours with the ostomy nurse) to try to change my appliance when it leaked, but there is so much output it's nearly impossible to keep dry long enough to change it. Also, the part that functions is below skin level again, even though the doctor put a bar in to hold it up. He is trying to hold off as long as possible to do the reversal, but he knows we are never going to make it as long as he wanted. It's only been about a month now, but the ostomy is making me so sick and is so difficult to manage that it will be much sooner. I can't even shower because I have to be so careful to keep the everything on. Before I had the surgery, I was told I could swim, bathe, exercise, climb mountains, whatever. Now my ostomy nurse says "most people can, but not you." It's so frustrating. If this next surgery doesn't go well, I may end up with a permanent ostomy, which will be heart breaking to me with all of these issues.
I had an x-ray test done to see if the pouch leaks and it doesn't. The fistula appears to be gone. My test before the last reversal was just as good, though, so who knows. Last time I was using the pouch, it didn't leak like I expected and I didn't have tons of bowel movements. Rather, it was difficult to go and it held everything in. The doctor thinks straining may have caused the fistula, so this time, he is going to have me use a catheter to insert and help empty the pouch if it is the same way.
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
Now just trying to make it 6 months until we can try the next surgery again
Imodium (4/day), Questran (3/day), Zantac (2/day), Zofran (as needed), Reglan (4/day), Probiotics