So here we are.
Bad colitis 8 years. Colon removed emergency surgery February and on the bag. Rectum removed and J pouch created in August. Reconnected about a month ago…..
…and my arse is sore. Like paper cuts with Satan gleefully squirting lemon juice. Even just rinsing with warm water is excruciating.
I started out strong after the reconnection. No problems at all and was impressed. Then slowly I found I was leaking a bit here and there. Then I was shitting myself at night. Now I’m shitting myself during the day. I have these spasms and I clench but I can’t always hold it in. At night I wake up and I’ve shit myself in my sleep. No warning. I clean up, go back to bed, and then it happens again. Sometimes though, if I’m awake, I notice if I move while I’m lying down it precipitates the spasms / contractions / peristalsis and I immediately have to hurtle to the shithouse.
During the day I go to the toilet, clean up, annnnd back to the toilet again, annnnd clean up, annnd back to the toilet again……
I am tired as I can’t sleep with the repeated nightly trips to clean myself up. It gets so bad that sometimes I have to take the strong painkillers, left over from when they sent me home from hospital, just to get through the night.
I am doing / trying the following:
· Loperimide
· Metamucil
· Barrier cream
· Colifoam
· Proctosedyl ointment
· Rinsing with warm water and drying with hair dryer
· Simple food
Every day I seem to get a little worse.
I’m hoping someone out there has been through this and can advise that it does get better.
I return to see the surgeon in a week. Advice from that quarter so far has been “it might take a year till you come right…your body adjusts…blah blah”
Any idea, comments, etc. are greatly appreciated. Have I got pouchitis? Is there damage to my spincters? Is it Crohn’s? Will I ever play the piano again?
Thanks to Adam and the kind community of UCulators.
Feel free to ask any questions regarding my colitis and treatments; only too happy if I can help.
Cheers,
Peter
The author has had a long standing relationship with ulcerative colitis and enjoys reading and long walks on the beach. It has been commented that the author has the body and mind of a cat.
