Pouchitis - My story some hope

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

 

Original Post

I totally agree with ICROSSCO_1. It is exactly what I ended up doing, taking less meds. Today when the pouch gets crazy, I don't even take the med combo, I take two Aleve, takes away the inflammation and start to feel good again. I have had to take the med combo if I let things go too long without taking anything thinking "it will go away".  I am learning to nip it in the bud, but, again, everyone is different, but definitely worth a try. Note: I do not take a lot of Aleve either. 2 pills one/day. I usually will take it before I go to sleep, takes away pain and I can usually sleep until early morning, feeling better when I get up and thru the day. If intolerant pain comes back, another 2 before bed, but really, one dose usually does it for me. 

Being a 26 year Poucher, believe me, some of the side affects I have had to deal with because of meds is worse than the pouchitis. 

My Story: 19-26 yrs old UC, 1991/26 Colon Removal/J Pouch/Take Down, Pouchitis from Crohns, 2002 fistulas, 2010 lots of fistulas, Could Be Worse cause I've been there - but life is still precious. Go to the mountains and get revived - amazing peace. 

RCROSSCO_1  Interesting. The same seems to be happening for my son. He starts a 30 day antibiotic prescription, feels a bit better after 5 days then gets worse than before he started.  We've tried Cipro, Flagyl and now on Xifaxan. Now going to try Cortifoam.  Not sure what's next, possibly entocort, biologics.  Remicade did not work when he had a colon.

Do you use probiotics?  We've tried all the top brands, but they don't seem to help and may even make things worse too.

Even before he had his colon out, the UC meds (prednisone, remicade) were the same.  He felt better at initially and then got worse.

 

Yes I tried probiotics, people in the UK are lucky enough to get VSL#3 free of charge, but I found it made me really gassy, bloated, increased frequency so I never touch probiotics at all now. I keep a permanent supply of Cipro and Metro and just drop a few here and there when I feel I need them, and generally its very infrequent.

The whole way the drugs are prescribed is ridiculous. If you immediately stop taking once you hit that plateau of feeling better then the drugs remain effective for the next time, even if its a short time later to begin with. I found once you take them for weeks at a time and they are ineffective and you STILL have bad pouchitis, you are stuck with nowhere to go. I was so fed up that I was ready to have a stoma again, and I was so glad that I found a better way than the blind prescribing of these medications by the professionals. Very interesting your son experiences the same plateau. 

I would never, ever take Cipro and Metro for 30 days, not in a million years. These are serious drugs, with serious long term side effects, especially Metro which can cause permanent nerve damage.

The fact your son feels better after 5 days is great news at least. All I take now is Codiene Phosphate to keep the frequency down, and as detailed above, the odd Cipro as and when required. I think my record was a whole year without needing a single tablet. Pretty big change from the state I was in.

 

I have also developed a similar method to treat my pouchitis. After 10 years with a pouch and frequent bouts of pouchitis, I will no longer use prolonged Cipro/Metro treatments. When I feel a flare coming, I take a Cipro/Metro combo for a few days, then stagger off over a few days. This has helped me to stay healthy longer, while avoiding the side effects of the antibiotics. My story of coming to this treatment plan has evolved over the years and I find it curious that it lines up so well with this UK chap's findings. Maybe there is hope in this strategy for others.

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