Chronic Pouchitis - at what stage do people seek treatment?

I don’t think there’s any reason for you to tolerate this. The antibiotics work for you - why not find the minimum effective dose of 2-3 antibiotics and rotate them? I didn’t find more than one that worked alone, but even without rotation I’ve been on antibiotics very successfully for about 13 years.

No reason to stop the antibiotics if you are good on them. I took them continuously for 25 years, stopped a few years ago after Remicade had been working successfully for a few years, and then things gradually worsened and I developed a stricture at the J Pouch inlet. I also have inflammation in the neoterminal ileum. So I went back on cipro and flagyl a week ago. The key to staying on antibiotics long term, as Scott said, is to rotate them periodically (every 2 or 3 weeks) and have at least 4 in your rotation.

Antibiotics make a big difference in decreasing frequency and increasing continence, from my own experience. You know they are working when you start going to the bathroom a whole lot less, and stop having to rush to get there.

Thank you, that's interesting.

I cope quite easily at the B) level, although going to the toilet so often can be a pain......

I guess with full-time antibiotics, I would be worried about how they affected the immune system long-term.  I would also need quite a constant dose of VSL3 to restore good bacteria. 

I know of, Ciprofloxacin, Metronidazole and Refaximin.  Refaximin can only be prescribed and collected from a hospital as it is so expensive and is not as good as the former two.   It is the preferred antibiotic for long-term use at my local hospital; however, it is just a hassle to get hold of I stopped.

Are there any others you would particularly recommend?

Thank you once again. 

I agree with the posts above. I also had chronic pouchitis for many years and accepted it as my new normal. After a fissure surgery I had more problems with leakage and decided to try the advanced IBD meds like Remicade, Entyvio and some more over the years, but none of them helped. My situatoin was very much like yours (points A-C)

On the other hand antibiotics had always improved my situation a lot, just as you describe it. But I was given them only in emergency cases, for about 10 days usually.

Two years ago I started taking antibiotics regularly about once a month for several days. My digestive health and blood levels (no more iron insfusions needed) improved. Finally I started chronic daily use of Cipro & Flagyl and found a comparatively low dose that is sufficient - similar to Scott's scheme, without rotation.

I also have been taking Entocort (budesonide) for 8 years now and I stay on a dose of 3 mg even with antibiotics in order to keep inflammation better under control. My last scope revealed hardly any inflammation left in my pouch and (neo-)terminal ileum, for the first time since my takedown in 2004! I have about 4 to 5 BM a day.

@SteveG posted:

I agree with the posts above. I also had chronic pouchitis for many years and accepted it as my new normal. After a fissure surgery I had more problems with leakage and decided to try the advanced IBD meds like Remicade, Entyvio and some more over the years, but none of them helped. My situatoin was very much like yours (points A-C)

On the other hand antibiotics had always improved my situation a lot, just as you describe it. But I was given them only in emergency cases, for about 10 days usually.

Two years ago I started taking antibiotics regularly about once a month for several days. My digestive health and blood levels (no more iron insfusions needed) improved. Finally I started chronic daily use of Cipro & Flagyl and found a comparatively low dose that is sufficient - similar to Scott's scheme, without rotation.

I also have been taking Entocort (budesonide) for 8 years now and I stay on a dose of 3 mg even with antibiotics in order to keep inflammation better under control. My last scope revealed hardly any inflammation left in my pouch and (neo-)terminal ileum, for the first time since my takedown in 2004! I have about 4 to 5 BM a day.

Thank you, it is great to see the improvement.  Your situation is very similar, 10 -30 days of antibiotics when really bad.  Budesonide, like Refaximin is very hard for me to get free due to the cost.  I used to use Colifoam until it disappeared from the market, leaving just two players charging huge amounts for their medicines.

Very interesting about blood levels, I always have slight anaemia.

The scope results seem great.

I will speak to the Doctors to see if they will put me on antibiotics full time.

Thanks once again.

Hi Anthony. I've had chronic pouchitis for the last 1.5Yrs and there were long stretches in the "C" category. About three months ago Dr. Shen prescribed me Tinidazole, an antibiotic, which I am on long term. I was wary about it losing efficacy so I spoke to his nurse who ensured me that they've had patients who have had long term success with the antibiotic. My other GI doc put me on Humira about the same time. It's like a light switch has been flipped. I went from having urgency and nightly problems to now going 6x/day, once or twice at night. This was a huge improvement for me. I had developed fistulas and those have healed, not altogether but better than before. I've gained about 25lbs in three months and my strength and endurance have significantly improved. I recommend asking your doc about Tinidazole.

@BK 123 posted:

Hi Anthony. I've had chronic pouchitis for the last 1.5Yrs and there were long stretches in the "C" category. About three months ago Dr. Shen prescribed me Tinidazole, an antibiotic, which I am on long term. I was wary about it losing efficacy so I spoke to his nurse who ensured me that they've had patients who have had long term success with the antibiotic. My other GI doc put me on Humira about the same time. It's like a light switch has been flipped. I went from having urgency and nightly problems to now going 6x/day, once or twice at night. This was a huge improvement for me. I had developed fistulas and those have healed, not altogether but better than before. I've gained about 25lbs in three months and my strength and endurance have significantly improved. I recommend asking your doc about Tinidazole.

Thank you, I will look into those two as well; never heard of them.  Glad you have had such great results :-)

I was wondering if anyone has had the opposite? I’ve had a Jpouch 18 years and I’ve had pouchitis a few times but the last few days I can’t go at all! Very uncomfortable and scary after spending so much time always going.
thank you