Pouchitus. This is the worst word! I hate it!
But what ever you call it (I prefer flare-up), pouchitus is horrible. You’d think that once your colon has been removed then that’s it – no more colitis. Well you’d be wrong. At least 50% of us get pouchitus.
I had my first flare-up / bout of pouchitus 6 months after my reversal operation. It followed a horrible shock – I had found out that my fertility had been affected by my disease and I would have to go back into hospital for more treatment. Going back into hospital was literally my worst nightmare at that time, and I think the stress brought on the flare-up, although it may have been coincidental.
The symptoms were constant watery diarrhoea and bleeding. I would leak watery mucus onto the bed sheets at night. It was impossible to keep hydrated so I was totally exhausted.
I took loperamide to try to reduce the amount of water I was loosing but it didn’t help that much. I went to my GP but she just didn’t really know what to do with me and wanted to give me Pentasa foam enemas.
I decided to check my GP’s prescription with my surgeon and I’m really glad I did! My surgeon said that I should not take suppositories or enemas under any circumstances because they can interfere with the functioning of the pouch. Instead I was prescribed antibiotics, which worked. But honestly, I haven’t been the same since. I have to be more careful now about what I eat and drink, especially alcohol.
So the moral of the story is, if you can’t avoid nasty shocks in life (who can?!) – question everything, check all your medications and refer back to your surgeon if necessary.