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Hi everyone,

just found this forum today and read through the pouchitis section for hours. Yet I've just been part of some smaller local german facebook groups, it seems that german guidelines for fighting pouchitis act slightly different. I hope to get some new advise here. 

Well, my story:

- German, 24 yrs old

- UC started in 2010

- soon became a Pancolitis, nothing worked

- ostomy surgery in October 2013

- pouch surgery in April 2015

 

Just got my first Pouchitis 1 week after I was discharged from hospital. Surgeon told that is quite normal after  the surgery. Had to take Flagyl (1-1-1) and Cipro (1-0-1) for 4 weeks. I was feeling so well after 2 oder 3 days, had about 4-5 stools a day and no side effects from the ab. I started taking VSL 3 times a day. 

 

Everything was quite fine until mid of June, when I got slightly worse. But not too bad. As I had planned to go to China for 5 Months (for work) I visited my surgeon once again in August, just before my departure in August. He was able to see a moderate pouchitis again and prescribed me flagyl and cipro again, as well as an additional 2 month supply, .. just in case. I also took lots of VSL with me. 

 

Well, the first days in China have been quite awful. Pouchitis didnt change, it appears that I just got some side effects like nausea, tiredness, dizziness, feeling faint, and no hunger. I changed Flagyl myself to twice a day, as I hoped this might reduced my nausea. I lost about 5 pounds during the first weeks. Well, even tough the pouchitis didnt get better, it was "ok", I could live with it as I did in Germany as well. About 8 stools a day and the ability to hold it for a while. 

 

As it didnt help and side effects were so bad, I stopped taking both after 3 weeks. Than I just become worse after a week or so and I started taking them again for nearly 5 weeks. I fought everyday with the side effects, and pouchitis was..well, tolerably, but not for everytime. 

 

Mailed my surgeon and got Xifaxam my air mail. Took 400mg three times a day for 9 days now. No improvement (as well as fortunately no side effects), I have even become worse. Tried to combine it with Cipro 3 days ago, which made my go out of action totally. Went kind of in a depressive mood, nausea, headache and pain in my back and chest. Was scared it might be my pancreas (had troubles earlier with biologics I took because of UC). But I read about those side effects belonging to Xifaxam. I am bound to bed right now. 

 

Well, what now.. 

 

Just ordered Pepto Bismol online (imported from Canada, for an insane price), after I read of it in this forum. Will get it in a few days. Also mailed my surgeon, who will probably answer the next 2 days. 

 

What I do have now : Flagyl, Cipro and Xifaxim 

- does it make sense to continue taking Xifaxim, as it did not improve my pouchitis the last 9 days

- does it make sense to try another AB alone? like just flagyl, and no combination? 

- can I just stop taking Xifaxim right now and start taking another one? 

 

I now it is impossible to give me any advise, as everyone is individual, but maybe you guys can just tell me from your own experience. 

 

If I wont get better the next day, I'd have to stop my work and go back to Germany, which is of course leading to some problems concerning costs takeover by my employer. In 28 days I'd be finished and start a 1 month tour through asia, which is all payed yet. 

 

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You can try other antibiotics, but many have side effects too. It sure sounds like you are becoming antibiotic resistant. Unusual so early in the game. I don't think it is normal to get pouchitis right away, although it happens sometimes. If the antibiotics are not doing much, I doubt Pepto Bismol will help much. Combine it with the antibiotic that works the best for a better result.

 

You can also try things like mesalamine or hydrocortisone enemas, oral mesalamine, or even oral steroids. But, I am sure you want to avoid oral steroids if you can. It does not sound like you are a good candidate for biologics, considering your past history, but it may be an option. But, are they available in China?

 

I would not be surprised if you are sensitive to the local bacteria in your new location. 

 

Jan

 

 

Thank you. 

 

Haha, even though I know most you are saying is probably right, I do not wanna hear it 

 

Just made it to get some Levoquin and Pepto Bismol. Started taking 500mg levoquin a day and 2x2 of pepto bismol.

 

Soo, if it helps, at what time will I recognize? Are antibiotics always supposed to help after 2 or 3 days? 

When my pouchitis became chronic, I developed a poor reaction to flagyl, cipro helped some, but not all the way. Levofloxin works better for me.

If the antibiotics are helping but not solving the pouchitis, it is possible to add entocort/budesonide (a designer steroid). It can also be helpful to try cortisone suppositories or enemas. Hopefully you can try some of these things while on your trip. I have found that adding steroids to the antibiotics tends to turn things around within a couple days.

Best of luck!

so years ago when I first took Xifaxin it didn't seem to have much of an effect, however, this time I started last Friday I think it is helping. mind you I think the dosage is also stronger. Flagyl is my go to abx for my pouchitis but it can over time cause serious nausea. its an awful drug with a bitter and nasty lingering aftertaste.

 

I think adding budesonide/entocort is a good idea. I have done that as well in the past when things were dire. and it seemed to have a big help.

 

I also think Jan is spot on. I would be if you can more selective about what you're eating. I was in northern China last year for two weeks on a tourist trek and by week two I was having more pouch activity, I wouldn't have called it pouchitis just more activity. my guess it was from the change in diet.

 

personally I would be careful using pepto, it has aspirin I believe and so might contribute to gi bleeding. good luck.

 

Last edited by deweyj

I think the main problem is that he is not being treated locally. You can't get Remicade or other biologics by mail order to other countries. My provider won't allow mail order of my Cimzia in the same county (too expensive to trust to mail order). I have to pick it up in person at the pharmacy and can only get a month's supply at a time.

 

Jan

Feeling great improvement on Levoquin. 

My frequence went down to about 8 times, but its not thickend unfortunately. 

 

I am feeling unbelievable tired and weak, as well my knee joints and my calves hurt. 

I've read about long term damages of bones and joints. Dont think this is my AB to go.

 

My doc advised me via mail to take cipro now for 4 weeks, I'm unsure since it's a very similar one. An other opportunity would be flagyl. 

 

//////

Where I live, you're on your own. I'd have the chance to go to Beijing, if things might become desperate. In that case I'd rather go back home. Not least because it's a matter of money too. Who can afford Infliximab by himself ? My insurance never pays in advance. 

Jan, I so wish that my self profiteering insurer would not force me to get mail order specialty pharma to deliver my Humira, I wasted several hours again today to chase down my shipment. The most ridiculous thing is when they propose that its easier to deliver it to my home. NOT, and I still have to go to Walgreeens to pick up my other scripts. Its the fat profit they want to split with the spec pharma and cut Walgreens out of.

 

but I digress... Lars I believe Levaquin (the flouroquinolone) family of abx endanger your ligaments, so don't go out and start playing volleyball, basketball or go long distance running as your ligaments, tendons are at risk. have you tried adding some soluble fiber ala Metamucil to thicken your output? rice? that's surely a staple in your available diet, that might help thicken your output.

 

but yeah at the end of the day, you are going to maybe seek care locally for best results. all of this conjecture over the interwebs can be great fun but is it as effective as seeing a doc face to butt?

 

if indeed its pouchitis I would stick to the current working abx for 2 weeks to hopefully fully address it before switching again. just a random unmedically trained thought.

have you tried adding some soluble fiber ala Metamucil to thicken your output? rice?

 

just imodium. since i take PM now, im not taking it right now. sure I eat rice at least once a day, as well as 2 bananas. 

 

but yeah at the end of the day, you are going to maybe seek care locally for best results. all of this conjecture over the interwebs can be great fun but is it as effective as seeing a doc face to butt?

 Well I already have been to the local hospital, doing a blood test and a stool sample. As doctors said and as I read thru those results, everythings fine. They just found blood in the sample, which doesnt suprise me.

I am living in a small town, nobodys speaking english or used to those mostly-western diseases - thats all I can do here for now. 

 

So I think, you guys and my doctor via mail are the best help I can get for now

thanks.

 

Taking 500mg levo daily, my stocks are empty in about 10 days - so I need to switch to Cipro or Flagyl. 

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