Sounds like some chronic pouchitis findings with evidence of active and healing stages. Sounds in line with your clinical description and need for frequent use of antibiotics. 

 

What is worrying you?

 

Jan

Jan the seen micro ulcerations are worrying me although I don't experience urgency (this was the most important thing cause I can not live my life when having the colon, now I can and am happy)... 

My doctor always said that ciproxin are taken for maintanance, not because I have chronic pouchitis. Do you think I should take ciproxin for more than 10 days to clear the chronic pouchitis, I don't like to have it chronically...

I wonder if you have some cuffitis.  My assumption is that you had/have UC and that a 1-2cm part of your rectum was left above your sphincter muscle to enable them to double staple your j-pouch in place.  This is done so we hopefully won't have incontinence issues. We can still get UC in that 2cm remaining rectal tissue.  Instead of calling it UC it's cuffitis as it's at the rectal cuff. The bleeding is why I think it might be cuffitis.  Are you feeling any internal burning that isn't external?  I think your doctor would be prescribing you something like anucort or canasa suppositories along with your Cipro and VSL#3 if it is cuffitis.

 

You will know more when the biopsy report.  

I perhaps have some kind of cuffitis as sometimes I feel a light pain to the anus, and bleed, but what the pouchscopy found are inflammation with micro ulcers on the pouch... I think that the symptom are increased bms and sometimes bleeding.

Definitely what I'm worrying is a worsening of those ulcers although I have the same routine since at least 1 year and feel generally well.

I am quite happy with my pouch, I go to work and usually don't have bms all the day long (sometimes just 1) then at home 4 or 5 between evening and morning.

But when I had surgery I was healthier with just 3 bms in 24 h.

I think those ulcers / inflammation are clearing using ciproxin as I always feel better when assuming ciproxin (more solid bm and less bm with absolutely no urgency and no diarrhea)... and would like to clear definitely the pouchitis.

Unfortunately I will talk to my doctor in the last week of May.

In the meanwhile I will probably try at least VSL-3 by enema to keep remission...

I have taken antibiotics for 20 years and still have ulcerations in the pouch.....it's called "simmering chronic pouchitis kept in check by taking rotating antiobiotics chronically".................This is so you don't worry if the VSL#3 DS doesn't maintain a remission.   In my case there is no remission, the best I do with antibiotics is reduce the symptoms to almost nothing.

It sounds like what the doctor saw during pouchoscopy is exactly in line with your pouchitis symptoms, and you've learned that when the symptoms appear Cipro clears them up. One way to understand the micro-ulcerations is simply "pouchitis bad enough to bleed a bit." Adding VSL could prevent future pouchitis epoisodes, or significantly delay the next one. 

 

I was suprised about your plan to use the VSL by enema. Did your doctor advise that? VSL enemas are an intriguing idea, but the well-studied way to use VSL is by mouth (mixed with yogurt, applesauce, or a cold beverage). Why not use it that standard way for a year or so and see if it works for you?

CTBarrister, thank you so much for sharing your experience, so I'm a bit less worried greetings for your 20-y-o pouch! I'm so happy you're still well and symptoms quite nothing (although antibiotics therapy);

Scott: you're right probably is bad enough to bleed but I feel that I have to increase the antibiotic course for at least a time because when I take ciproxin I see much less blood but sometimes still a bit, my goal is to clear it up (and seeing it throug CRP values that in the last year were a bit higher than normal, my surgeon sentence: don't worry); I'm quite sure that if I take ciproxin longer, crp will become normal and all the ulceration is cleared but are my thoughts.

VSL3 by enema: I read in this board the experience of some poucher, don't you think it's better if taken straight to the pouch and not by mouth? Aren't stomach acids and foods killing most of the good bacterias?

 

Poucher fellows you are so kind, I love you for your advice!! Thank you....

lkh,

 

I have actually had my pouch since 1992 (23 years now) but actively treating the pouchitis for 20 years.  I may have had some symptoms and microulcerations 1992-1995 but there have been consistent ulcerations and inflammatory polyps since 1995.  I am none the worse for the wear but I can tell you that if you are on antibiotics long term, there are certain rules that need to be followed (mainly strict rotations) otherwise some bad things can happen.  I have been lucky in the sense that my body seems to be enormously tolerant of antibiotics and I am able to consume high dosages of them with little or no side effects, but if I don't rotate bad things will happen.

 

Its trial and error and you have to learn what your body can take, and what it can't take and what things will make you prone to yeast infections and what steps you can take to counteract.  It's all a learning process but it's quite possible you can adapt to it if you ultimately need to.

You would not be prescribed Cipro as maintenance unless you had chronic pouchitis or chronic SIBO (small intestine bacterial overgrowth- which also leads to chronic pouchitis). I would not recommend taking the Cipro longer than is prescribed unless you had symptoms warranting it. You can talk with your GI about and see what the best plan is. But ulcerations are fairly typical of pouchitis, so I would not worry about the use of that word in your path report. 

 

Jan

VSL by enema is quite interesting but poorly studied. Oral VSL does pretty well surviving the stomach, unlike the bacteria in yogurt. Why not try it the usual way first, and save the experiments for if the usual fails?

VSL#3DS has 900 Billion bacteria per sachet as compared to other's with 5 or 10 million or billion.  Below is a link to a paper written by Dr. Bo Shen from the Cleveland Clinic and others. It's about everything that can and does go wonky with pouches.  Please look for the page #658 were they talk about testing the efficacy of VSL#3. The article isn't that long  There was obviously over 600 pages relating to something else. 

 

http://gastro.ucsd.edu/fellows...%20Review%202009.pdf

 

If you get better when taking Cipro then you need it. I am rotating 2 antibiotics with 2 weeks on one and then 2 on a different one.

 

IMO  If the results were bad they would have gotten you into see him much sooner.

 

Thanks TeMarie, I'm reading it.

I don't like the idea my pouch is not healthy, although it's not that bad, and I don't feel much bad.

I'd prefer to find a trick to remove the inflammation as the pouch is doing it's work very well... I don't know if I need maintainance antibiotics, I suppose that I should kill all the bad bacteria causing the inflammation then repopulate (day by day) with good bacteria, then have a nice diet (but not so strict) and then perhaps have a maintainance antibiotic, although I'd like to try something natural (oregano oil pills?)