Hi, My 19 year old daughter Lily had takedown March 2015. She has had 1 bout of suspected pouchitis within a few months and was given Flaygl which made her fingers go numb so no longer can take it. Up until now, she has been doing pretty well and whenever she had pouchitis symptoms loads up on Florastor probiotic and that really helps get her back to normal. So I'd say she had one good year with no real problems. This last summer she started working out really hard, everyday. She stopped having a period and hasn't had one in 5 months. She hasn't been working out in a few months but has been super stressed in college and not really eating, still no period. Since June she has lost 20 lbs which of course we and her drs are very concerned about and are working on.
About a month or two ago she started having symptoms again plus blood. I was thinking a flare because of all the stress? From all I have read hear and on the FB group, it sounded like cuffitis to me. Her GI insisted it was pouchitis and put her on Cipro. Two weeks later she called me and said she had been experiencing MAJOR anxiety and panic attacks. I asked her when it started and it was two weeks prior, the same time she started Cipro. I started googling and found that anxiety/panic although supposedly rare can happen. She stopped the Cipro then and the physical symptoms had gone away except the tiny bit of blood and sometimes nighttime leaks but no urgency, frequency is back to her normal. The GI then said "well maybe it could be cuffitis" and prescribed hydrocortisone enemas. It was during finals and she was not good about doing them. Now that shes on break I make sure she does them. Still having a tiny bit of blood, usually not every day but two days ago she had blood three times which really scared me. Of course googling again is REALLY freaking me out, reading about CD of the pouch and pouch failure. I can not even imagine. She has really been struggling with depression and anxiety and I'm not sure if the Cipro made it worse. Her GP said the weight loss has a lot to do with it and she is seeing a counselor and will be seeing a psychiatrist next week.
All her labs, inflammation markers, etc are normal and he said although he was concerned about her weight that she didn't "present" with CD. Well I never had much faith in him and I made an appointment with Dr. Bo Shen for March. She has never even been scoped since surgery almost 2 years ago which seems weird to me. I assume they will want to scope her at Cleveland Clinic?
Anyways, sorry for the long post. Its been a very difficult few months. Just when I thought she finally turned the corner and doing great all this happened, it sucks. She said this anxiety and depression is worse than the UC, surgery and all the rest. 
Any insight would be great, thank you.
Mary Beth
