Hi I am a late thirties male, from the UK, who had a really big battle with pouchitis to the extent that I was sending emails to my surgeon asking for a stoma again.
I did not do this, and now 12+ years later I am in good health, here is a brief story of what happened for those who have been posting recently, as I got an email about a pouchitis survey which prompted me to make this post.
So........... after going through the usual 3 stage process for the j-pouch, I as many others have reported, went through at least 1-2 years of healing, getting stronger, pouchitis, re-training my gut etc etc...
I was so miserable with a lack of progress, and so disheartened by recurring pouchitis that I really reached the end, and just wanted to be well again. However, I stumbled upon a technique which eventually led to my complete recovery, and many many years of full and great health.
I would repeatedly be given prescribed courses of anti-biotics, the usual, Cipro + Metro... and I would dilligently take them as prescribed by the doctors for the required amount of time. However, what I noticed, repeatedly, was that there was a peak, the recovery was like a sine wave.... I would start to feel better almost within hours, that feeling of being poisoned, the aching, the inflammatory processes making you feel rubbish all the time would subside, and the stools would thicken up, and I would start to feel better. So, given this optimism, I would carry on taking the tablets, then after reaching this "peak" of starting to feel better, go downhill again to be back worse than where I started. I would now be in the position of being ill, AND taking the antibiotics, AND them not working, so the worst possible position.
After putting two and two together, I scrapped any doctor recommendations, and I developed my own strategy for taking Cipro and Metro. So I would take a few pills until I felt a little better, then I would stop immediately. Then when I started to feel rough again, (maybe in as little time as 24hrs) I would take another very, very short dose, until I felt improvement, then again, stop as soon as I felt improvement.
Slowly but surely over time, the periods in which I had to take antibiotics to "fix" the pouchitis got ever larger, so I went from a few hours, to maybe a day, then days, then a week, then a few weeks, then months, then finally I had a 6+ month stint of not requiring anything at all. It was like a miracle.
Dont get me wrong, now and again I have to pop a few Cipros and Metros occasionally when I've had some bad food and its really kicked something off inside me, but never again would I keep taking the pills and just continue on the downward slope as over the course of each treatment they would lose their effectiveness pretty damn rapidly.
I was so desperate, so miserable, so ill, that I had actually emailed to get the pouch reversed, and in hindsight, I am SO glad I did not, and found my own pattern of treatment.
Also what is better about my method of doing things, is that you are not risking the AWFUL long term side effects of both Cipro and Metro, each in their own right can be HIGHLY and irreversibly damaging to the patient.
So anyone suffering like my recent email notifications alerted me to, please please hang on in there, and find a way to consume these drugs in a pattern which helps your guts, rather than keep taking them until the point where they stop working and you are stuck in an illness rut.
I understand that everyone is different and it might not work for everyone, but who would have thought taking LESS DRUGS would work out more effective?
For me with Cipro and Metro, even with really bad pouchitis, after taking as little as 3 tablets or as little as 24hrs of treatment I would feel improvement in my condition, and I ended up being aware of the pattern of effectivness wearing off, and would cut treatment just as described above.
Sure it took me a long long time to find this out, to implement this strategy, but God was it worth it in the end!!
Hope this wee story gives someone, somewhere a little hope