It varies, but yes, it can escalate in a matter of days. Bleeding is not usually an issue, but you can dehydrate rapidly. Hopefully, you are already on appropriate treatment. If not, you need to call your doctor and get going on it. 

Even if it is fully under control before your travels, you need to bring extra antibiotics to cover your trip. You do not want to be without ready treatment while traveling. One member here wound up in the hospital and was barely able to tolerate his flight home when he fell ill while traveling.

Jan

I have suffered from pouchitis tried all the vsl3 and flag cipp no long term relief and today entered into a research study at NYU Langone for the drug Alicaforsen originally went there for a second opinion three weeks ago and was told about this study .Seems to have done well in studies in Europe and is just starting here . It is a double blind study dont know if I have the real med or placebo but I think it is worth a shot anybody interested the info should be on the Crohn's and Colitis web sight  or contact NYU Langone Division of Gastroenterology. 

Allin, Can you tell how long the study is supposed to last ? Did they say how long it will take the doctors to say whether Alicaforsen works or not ?

Thank you.
François.

The study in Europe showed a 58% success rate .The study consist of 6 weeks of taking either the placebo or the drug because of the blind study followed up by 18 weeks of monitoring. After 10 weeks of being in the study if you were on the placebo you are eligible for the drug and if you complete the study they will supply you with the drug for free untile it gets fda approval.  The doctors name at NYU LANGONE is DR DAVID HUDESMAN his nurse's name is Amy the number is     212-263-3095 im sure they can point you in the write direction .I chose to enter the study rather than start with 6 mp or any other chemo based drugs I will give this a try first and pray. 

Thanks Jan. I wonder if you, or others, have any thoughts on my decision making? (I will also be speaking with my Doctor about this)

Basically I'm dealing with 2 issues - getting myself in best possible health for my trip (in 5 weeks time), and dealing with my travel/medical insurance.

Regarding insurance, things will be much easier if I can have a clear period without antibiotics or investigations or other treatment changes between now and the trip. Without this, I may end up with no insurance, which might mean cancelling the trip (not the end of the world, but disappointing still).

Regarding health, I suspect i've had some level of pouchitis for many years (it hasn't really been monitored), and certainly had it since January. In March I took 2 weeks Cipro which didn't seem to help much. In April I took 1 week Metronidazole, which seemed to help a bit, at least for a while. Then 5 weeks ago, I started getting abdominal pains and I've just now finished a 2 week course of prednisolone suppositories. These seem to have helped a bit (pains seem less frequent and milder). I still feel like I can manage the trip.

I believe a common next move would be 4 weeks Cipro + Metro. If I did this,  I would finish the course 1 week before the trip, leaving me with no real treatment option while away and also I would be repopulating my gut bacteria in remote Africa (not sure if this is a good idea or not!). An alternative, as long as things don't get worse between now and then, would be to hold off on the antibiotics (avoiding insurance issues) and then start taking them while I am away. You have any thoughts on this?

I do intend to pursue a longer term strategy, once the trip is over.

Thanks, John

John-

i can't pinpoint the clinical scenario that concerns you, but why not bring along additional Cipro? Pouchitis usually doesn't escalate into an emergency, but being able to restart treatment can be very helpful.

is the concern about treatment affecting insurance speculative, or is it clearly a problem? I'd advise against letting the insurance drive your treatment decisions, if you can. That usually ends poorly.

Just making sure your taking a good amount of probiotics daily to keep your bad bacteria in pouch. Under control?  The refrigerated pill form kind at an all natural store.  I have to eat very little of these foods to keep inflammation down...gluten dairy sugar.  Once I cut/stopped these foods I instantly felt better.

Thanks Scott, I think I've been unclear with myself about my situation/decision. Basically my doctors perspective is that it's up to me to say how well/unwell I am (I'm not entirely sure), whether I want to try any treatments and whether I think I'm up for the trip. And my insurance provider's perspective seems to be based on my treatments. I'd like to maximise my health before I go, but would be disappointed if I took the meds, the trip got cancelled and I got no benefit from the meds. I guess I'm weighing up the possible benefits of more antibiotics now against the possibility of insurance problems (I'm told any further meds and it'll  be referred to the underwriters for probable transfer to another company and subsequent cost increase or cancellation).

As per your sensible last comment, I think I will monitor my symptoms between now and the trip and if they get any worse I will start on the antibiotics, deal with the insurance then and whatever will be, will be. If I go, I will certainly be taking spare antibiotics.

J, I tend to somewhat try and avoid those foods too, though I don't want to make any sudden dietary changes just before I go.

I am someone with chronic pouchitis that has also travel extensively internationally (China, Thailand, New Zealand and more). Sometimes I have been on excursions that are remote with no chance of getting any meds I might need.

So I always pack with anything I think I might need. For me that is enough Cipro to cover whatever type of flare I might have for the duration of the trip, Tucks wipes, Gold Bond powder, pepto, cold medicine (both daytime and nighttime versions), Imodium and Tylenol.  Over time I've learned what I might need and just take it all with.

And then eat as little sugar, grains, or dairy as possible and drink a lot of good quality water.

Trojan, it seems as though you have unique insurance issues. I have not heard of being sent to different underwriters for additional or chronic treatment.

As for myself, my GI has always been good about authorizing antibiotic scripts to have on hand for travel. The last thing you want is to be "stranded" in a foreign country without appropriate treatment. Even in Europe, getting prescription meds is a hassle. In the Czech Republic I could not even get a decongestant without a prescription. I do not use travel medical insurance. I just bring all meds I think I may need. 

It seems that steroid suppositories should be on your list to bring in addition to antibiotics.

Jan

I have been on pouch for the last two months. Frequency is around 20 and unrelenting . Also developed fissures and hence makes the whole process painful. The Sigmadoscopy suggests pouchitis. Anyone can offer advise on how to handle this trauma?