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So for many months now I've been dealing with issues and have gone into the doctors on many occasions for assistance. Each time I have gone in I have been told to take lamodial for the chronic diarrhea and been given multiple types of creams for the skin breakdown, some medicine in enema form for fissures and ulcers in my anal canal. And still I have issues. I emailed my surgeon at the mayo clinic who took a week to reply and said only to get checked for pouchitis. I informed my doctors and they set up for urgent appointments that happen to take two to three weeks just to set up and then another two to three weeks to be seen. 

Now for several months I have been able to feel every bit of gas and stool pass into my pouch, in the most painful manner I have ever experienced. I can not go to the bathroom without ending up in tears from the stool exiting the pouch. When I go from sitting to standing I have acid leaking and boy oh boy does it burn something fierce. I have fissures and ulcers that open every time I go to the bathroom. To top it all off I am missing so much work I am getting corrective action for missing even another minute. New job plus newly single mother, plus school, plus all the pouch issues equals a very drained and exhausted momma. If anyone has any advice at all please tell me I am more than happy to listen. Ps my first bout of pouchitis was before I even got to use my pouch. 

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This is intolerable. I would call and ask about a prescription for Cipro or Flagyl for presumed pouchitis or bacterial overgrowth while you wait for your appointment. Obviously, lomotil is not working for you. Some people get good results from fiber supplements for reducing the acidy burn. Have you tried them yet? Another option is cholestramine, which binds with the bile and is constipating.

For the fissures, I presume you've been prescribed the usual topical treatments. Botox injections is an option to help heal fissures. One thing you need to talk about at your next appointment is whether all this perianal disease is actually a manifestation of Crohn's disease. If so, then maybe biologics like Remicade or Humira is a good option.

Either way, I hope you get some answers soon. You've suffered ling enough.

Jan

Jan Dollar

Ah, makes sense, since pouchitis is uncommon with FAP. But, uncommon is not the same as unheard of. Plus, you can still experience the symptoms of pouchitis without pouchitis when you have SIBO (small intestine bacterial overgrowth). This is something that is not unique to IBD, so you could easily have it. The treatment is the same, antibiotics.

Jan

Jan Dollar

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