Hi all
I am currently having various issues without being clear what exactly is causing mh symptoms and not getting anywhere with my doctor I am hoping someone might have experienced something similar and be able to shed some light.
In case its relevant, I have had a J pouch for 3 years after having an illostomy for 5 years following a severe UC flare. During my reversal I had a bad time of it with an emergency reversal of my ilostomy because of repeated bowl obstructions behing the closed stoma site(after stage 2 of the J pouch surgery). I had severe pouchitis straight after the 2nd Jpouch op. Over past 3 years I had pouchitis that would return every few months and was treated with Cipro on and off.
Now i have chronic pouchitis it comes back every 3 weeks after coming off cioro and i go back on. My surgeon put me on the steroid Budesonide 3 weeks ago. When i asked why steroids and not continuous antibiotics he said that was the algorythm for resitstant poucitis. Is it just me or do I have antibiotic dependant pouchitis rather than resistant? Is anyone treated with steroids for this?
On top of this my surgeon suspects mucosal prolapse. Mainly because as soon as I dont have pouchitis i get the opposite problem where I feel like i cant go/ empty my pouch properly and I am trying not to strain. I always feel like i need to go again. I also get lower andominal pain like i may be partially blocked.
This week i have had abdominal pain that got worse and worse. I have no other pouchitis symptoms. So no diarrhea or urgency (which i normally do) and thick output. I also feel like my poch isnt filling or i cant feel it filling.My lower abdomen is swollen, sore to touch and hurts when i walk or move too much. I am having really trouble going to the toilet and it hurts in my abdomen when i do. I have been prescribed Cipro, does this sound like pouchitis? Or something else? I have been taking it for 3 days so far with no effect.
Sorry for the essay I am lost as to what may be going on and hoping someone might have some ideas. Thanks very much.
Lorna