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Although I have browsed this post over the years, this is my first post here, so hello all!

I have had a J-pouch for about 25 years and just lived with the results. Every 2-3 years (NHS - UK), I get checked with a pouch-oscopy, which has consistently shown mild pouchitis. The last test 2-3 years ago showed terminal ileitis too. So I received some antibiotics for a few weeks and had a reference point for how good the pouch could feel for the first time. The antibiotics stopped, and the symptoms returned.

Below I will characterise my symptoms. Even though it is a sliding scale, there are three main sets.

A) 1% of the time - Very Good. Stools are well formed, there are no feelings of having to push, and the pouch feels empty. It needs emptying less frequently, to 6 times daily. This was just after two weeks of Cipro & Metro and a revelation

B) 95% of the time - Average. On average, go to the toilet 9-10 times daily, mixed consistency, from solid paste to diarrhoea. More urgency as well as often having a feeling of having to push. More gas, smaller deposits.

C) 4% of the time - Poor. Visit the toilet 10-15 times daily, real urgency, small amounts, constant feeling of pouch not being empty, cramps and pushing whilst on the toilet. Diarrhoea, accidents.

I have lived mostly at level B) above. That is normal, and I never knew otherwise. I have a high tolerance for pain and discomfort. My main worry is that I may put the pouch in danger by putting up with B), and it is more likely to go wrong. The big fear is colo-rectal cancer.

What is normal for one person is not for another, so I would love to hear if you have a middle ground you put up with and what level that is. What would you consider a flare-up? Should I be more concerned with chronic mild pouchitis with the B) symptoms above?

Last edited by AnthonyA
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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.

Last edited by CTBarrister

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 :-)

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