I have been waiting all day to get an answer from the hospital about this, but am a little frustrated (my GP just advised asking the hospital.)

I am 2 years post takedown now, and really things have never settled very well. I have still had really frequent stools, especially in the evenings and night, and have had increasing urgency and incontinence. Each time I have described what's going on to one of my specialist team, they have just said that it takes 2 years etc and just carry on as best I can. Admittedly, my opa have always seemed to coincide with a new bunch of SHOs who admit they don't really have any experience in pouches.

This week I happened to see a more experenced registrar as he was the only DR in clinic. When I described my symptoms (despite the fact they must be documented 3-4 times in my notes already) he seemed really concerned and he scoped me, saying he thought I had pouchitis, although I have never had what I thought were typical symptoms apart from frequency and urgency (no systemic illness, blood etc). He said the inside of the pouch looked inflamed and he could see blood-I have never seen blood in my stools at all. He has booked me in for a full scope and biopsy, although as he only requested 'routine' I have been told I will probably wait 3-4 months.

He prescribed 2 weeks of Cipro in the mean time. I started them on Tuesday, and from what I have read, foolishly thought I was going to miraculously experience what a 'good' pouch is like, even if only temporarily. Instead of which, things are much worse. I have the most awful wind, which is causing really frequent stools, tiny little bits all the time, day and night. I am exhausted. I have actually given up eating today as I simply want a break (I am taking meal replacement drinks, soups etc). I am now seeing blood in my stools, which have also become much thicker (I like to tend towards loose as I have a recurring stricture that is still narrow despite daily dilation. I find it really hard to pass stools even if poridge consistency.)

My concern at the moment is that the Cipro may be worsening things in my pouch. When I was first diagnosed with UC I was given sulfasalazine, asacol etc and I reacted badly to them-my disease spread from just 10cm of colon to total colitis very quickly and I was told I was one of a tiny minority that happens to. I was on heavy doses of steroids for years to try to get things under control, which did happen as I was very lucky that my disease got quieter and quieter after each pregnancy.

I feel I want to stop taking the cipro but don't want to do so without advice from my gastro-who is obviously too busy to reply. I know no-one here is going to tell me to stop and I wouldn't anyway unless told to by a doctor but I did wonder whether anyone here has had difficulty like this with Cipro? All I have read previously is that it can be hard on the liver, avoid milk and antacids and that the worst that can happen is that it doesn't work-not that it can make things worse.

I guess I am a bit anxious as well because I have the chance to refresh my training and go back to my old job as a Health Visitor but as things stand at the moment, I wouldn't manage the tube train to Uni, let alone a full time job on the community!

Many thanks if you have read this far-I think I just needed to vent!

I tried a couple of different antibiotics to find one which improved my pouchitis symptoms and I could tolerate! I felt really ill on metronidazole although it improved my bowel and cirpo didnt help at all so stopped taking them and let my consultant know. Obviously its a personal decision and I am fortunate in that my consultant responded and suggested alternatives. I now take co-amoiclav (also kown as Augmentin) each day and it does help with my bowel symptoms and although I feel a bit sick on them the side effects are not as bad as some of the others. I would suggest you phone your consultant and say things are worse and ask to try a different antibiotic. If you arent getting anywhere with your consultant could you see your GP to ask if they could speak to your consultant and prescribe an alternative anitbiotic?
Good luck!

Thanks EP. Trying to speak to my consultant is like trying to speak to the Queen and I still haven't had a call back from the hospital, although they have bleeped the on-call Reg and the nurses on the wards have said the doctors are flat out. I feel ok now although I haven't eaten since yesterday at 6pm lol. The wind (gas) isn't so bad-maybe I've turned a corner, I don't know. If I haven't heard back by monday I am going to bleep the specialist nurse, who wasn't on duty on Friday. She is usually very good, although I haven't spoken to her in over a year.

The Cipro caused some increased frequency with me for the first two days. Then my body adjusted and I really started to improve.

Flagyl did nothing for me, but it works great on a lot of others with pouchitis. I agree that you just need to find the antibiotic for you. I hope you feel better soon.