Well, since i've been posting my terrible times i thought i would be even-handed and post my not-so-terrible times too. I'm 3 days from m y 8 week anniversary. I should point out that I didn't get my ileostomy b/c of UC or Crohns but b/c of a reproductive disorder, endometriosis, that invaded my colon resulting in reanastomosis and hemorraghing episodes postoperatively. Oh yeah, and a rectovaginal fistula (goooooo 3rd world country Camille!) So, I've had a little different experience except that so much of the pain annd misery associated with UC and Crohns were a part of my life for 15 years. Colon bad is pretty much colon bad.
Anyway, I may have picked up a pound since my reversal, which would bring my total weight loss to 44 pounds instead of 45. I've still very low energy. I drink pepto bismal and eat 8 tums a day to stave off diarrhea. Weekly colorectal visits. I've anal incontinence and cannot control my anal sphincter so there has been a lot of skin injury due to fecal matter just eating away at the poor hapless hole. I spend about
2 days a week dedicated to wound care of my anus - always following the day when my bowels simply will not stop pushing soft or liquid matter through. Those are the worst/hardest days, Thanksgiving was one, and I hang out in bed on my side and soak gauze in domboro until the skin seems to heal enough for 5% lidocaine, hydrocortisone and hydrogen peroxide gel (in reverse order). Then I sleep - marathon sleep.
I'm taking 7.5 mg Percoset in half-doses and valium twice a day to relax my soft muscle tissue. The 1/2 dozen surgeries this summer left me with a tendency toward raging nerve pain (they all say the nerves are mending and that's why it hurts so much) so sitting down for long periods is icky. I am currently on the floor of my bathroom, peppermint tea at my side, waiting for the next "movement." They take about
6-8 hour to complete. I can move around the house, but I go outside at my own risk. It's painful.
In one of my more contemplative (read: drugged) moments I wondered who had more patience, me or my intestines. I posed the question to my team of surgeons and they smiled and said "your intestines." Guess I've got a ways to go.
Thanks for listening/reading/and all the support. Just needed to get it off my chest.