I just recently finished a 3 week course of Flagyl and Cipro (500 mg, 2x day) and just a few days later, I am having sharp pains in my bootie, urgency, and the worst butt burn that I have ever had. While on the medicine, I could not believe how much better I was. I went from 20-25 poops a day to 5, and my butt didn't hurt a bit. I was soooo hopeful that it would remain like that. (I have had a J-pouch for almost 13 years, and I have always been a 15-20 time a day pooper.). I hate to be a downer, but I am very discouraged.
I am currently on probiotics, and an extremely bland diet. I have tried fiber supplements (all varieties) and they seem to make the problem worse. I have tried lmotil and it makes me crampy and tired. I do realize that I sound like freakin' Eyore (from Winnie the Pooh) being so negative, but I don't know what to do. Could it still be the pouchitis??? I certainly hope not. I don't think I could endure another minute of Flagyl. It worked real well on my bootie, but I felt like I was gonna hurl for 3 weeks straight.
Elise, 15 to 20 times a day sounds like chronic pouchitis to me. I am 9 yrs post-op and if I go more than 10 times a day I know something is wrong. Maybe over time you have adjusted to the frequency but in my opinion there is something chronic going on. I am not sure if you had a scope but I think a full work up is needed so you can get to the root of the problem. The fact that flagyl brought you down in frequency is probably(but not definately) an indication of pouchitis. Good Luck, Scott Mc
Posts: 338 | Location: Scituate, Ma | Registered: November 03, 2003
Thank you for your quick response. Do you know what the standard treatment is for chronic pouchitis?
I think you are correct about me adjusting to the high frequency. That is a good part of the reason that I waited so long to get the recent pouchitis treated. I just didn't know how sick I was. As a matter of fact, without this forum, I don't know how long I would have gone before getting help. I was having severe arthritis pain in my hands (I'm only 36, and have never been arthritic) and I had no idea it could be connected to the pouchitis symptoms I was experiencing.
Anyway, I will call and scheduled for a scope as soon as I can. Thanks!
When you have recurrent symptoms, it is important to be diagnosed by scope, not by symptoms alone. If this is pouchitis, you may just need to stay on antibiotics long term, but hopefully at a lower dose and a single antibiotic. However, it is also possible that you have cuffitis that has not been treated if you did not have the scope. The treatment would be different.
Jan
Take a deep breath and relax; this too will pass.
Posts: 14613 | Location: Fremont, CA, USA | Registered: April 07, 2000
Elise, For me the first time I had Pouchitis doc prescribed Cipro 500mg 2 times a day. Since than I have been switched to Flagyl 250mg 4 times a day . I have tapered the Flagyl to 250 mg a day, been almost 5 months now. I would like to get off Flagyl completely but every time I try the Pouchitis comes back. You are saying you have pain, that is more typical of cuffitis rather than pouchitis. In my opinion you need a scope that way you can treat as the DX shows. Good Luck Scott Mc
Posts: 338 | Location: Scituate, Ma | Registered: November 03, 2003
Elise, In all honesty Flagyl sucks, BIG TIME. But I must say its like prednisone, when you need it's a necessary drug, but I hate the side effects. As far as adjusting to it I have either adjusted or maybe just got used to the side effects. At first on 1000mg a day I was really bad having nausea, panic attacks(not too bad, but definately there) and lack of appetite, nothing tasted good to me but it did get better after a few weeks (was on 1000mg for a month). I started to taper and pretty much feel normal again, not 100% but definately tolerable for everyday life. If you have any more questions please ask, it feels good to help people with anything I can share. Luckily here you can get sound advice, doctors though very smart and educated lack the actual experience of being sick and going through the emotional side of illness. Good Luck, Scott Mc
This message has been edited. Last edited by: mrpickles,
Posts: 338 | Location: Scituate, Ma | Registered: November 03, 2003
