Week 8: ileostomy reversal

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.

StomaGirl,
My heart breaks for you. Your post reminded me of the days when I was either sitting on the toliet applying cream after cream or running to a hot bathtub praying for some relief. I am so sorry you are having to live this way and that your Thanksgiving was such an awful day. Can your Drs reverse you back? You cannot live this way! Can you opt of the ostomy again? Is there anything out there that can help you? You are doing everything I can thihk of and I do not know of any bag of tricks other than taking a pain medication and trying to sleep through the pain.


Please keep posting. It really helps to vent.

Stomagirl, i can symathsise with you. I to had anal incontenance and it was the worst thing ever, i am scheduled for my reversal at the end of jan and i'm terrified that i am still going to be incontenant, my surgeon said my anal sphincter would be repaired during the op but it would not be 100%, but hopefully let me hold of to reach a toilet, soooo fingers crossed!!


Ash, i am having my anal manomatry testing done over 3 wks with a physio, i will have to travel into Glasgow for this as the 3 hospitals local to me don't do it but as long as i get it done, it's like crossing the T's and dotting the I's before my reversal, so i hope my muscles have become strong enough to get my op!!

Thank you everyone. I have doctors appointments tomorrow. I am asking to be hospitalized for bowel rest throughout the weekend and a temporary colostomy next week then to be treated as a colo-rectal patient with full workups instead of a gyno patient with a colo-rectal problem.

I will keep all updated. I'm hoping to enjoy Christmas with my colostomy and have a life again. Thank you all sooooo much for the support and assistance!


Camille