A couple of years after my J-pouch surgery in 2012, I started to get episodes where I generally felt really ill, rather like I had the flu but without the cold symptoms.
The only pouch symptoms I would get would be that my pouch output would firm up, become foul smelling, pale, hot, thin and ribbony. I have never had any urgency, seepage or bleeding. I also find I constantly need to urinate when it happens.
This would happen a couple of times a year and my Gastro and surgeon suspected either pouchitis or bacterial overgrowth and prescribed Cipro which seemed to do the trick.
I had 2 scopes which did not show any problems.
My episodes became more frequent and I have just had a scope which has shown inflammation and multiple erosions though out my pouch.
I really have been feeling so ill for months now I can hardly function. I am exhausted and have no energy. I have had to go to the ED as I keep getting dehydrated.
Just wondered if anyone else has had pouchitis with out having the classic symptoms of urgency, seepage, pain etc.
I also have ankylosing spondylitis and my sacro-iliac pain worsens when my pouch does.
Just hoping it is not Crohns.