Hello all,

For most of the last few months since takedown, it appears I've had pouchitis which was just finally diagnosed and treated for the last 1 month with 250mg x 3 daily Flagyl. While on Flagyl, my stools finally became more formed and brown. Now - not 4 days off of my 1 month course - my stools are losing form and turning the tell tale "orange" (aka what I believe is indicative of blood, as I had bleeding on scope) with some burning.

In summary: I've had my pouch under a year, and following 1 month of Flagyl for pouchitis, I feel that it's returning and would appreciate some tips on nipping a flare in the bud.

Note: I started taking VSL 3 DS 1x a day following Flagyl.

Last edited by Teddy92
Original Post

Getting a new "disease" is indeed disturbing. It looks like you've edited your original post, so my previous response doesn't make much sense now. Nevertheless, here are some thoughts for your consideration. 

1) It mostly doesn't matter what our stool looks like. If it turns out to be blood then that ought to be addressed, but try to focus on symptoms that affect quality of life, like urgency, frequency, and difficulty emptying. 

2) Check the diagnosis. Bleeding alone is more often cuffitis than pouchitis, though either is possible. 

3) You might not have been adequately treated. Flagyl alone doesn't work for everyone. It did nothing for me. Cipro often has a quick, dramatic effect, for example.

4) The VSL may help prevent recurrences. I've needed a higher dose to get a clear benefit, though.

5) If it turns out to be antibiotic dependent pouchitis, it's important to take the time to find as many effective antibiotics as you can, so you can rotate between them, if possible. It's even more important to find the lowest effective dose for each.

Good luck!

Hey again Scott,

Thanks so much for your informed and very helpful reply. When I made my initial post, I was indeed a tad overwhelmed at yet another diagnosis! The antibiotics made a huge difference in treating my particular first case of pouchitis, and so I was just a little scared that the coloring would mean the benefit was over.

After increasing my VSL#3 dose (now taking 2x a day) and keeping on with my normal routine and modified diet, my symptoms are much better and I feel like I'm successfully treated. My stools do have an orange-ish color ~50% of the time, but my quality of life is otherwise now good. I will hold onto those tips, and I'm sure they'll be helpful to others! 

Last edited by Teddy92

Regarding the stool color, barring food dyes, green and orange stools are mostly due to partially or untransformed bile. So it is an indication of quicker digestive transit time. Bleeding is generally associated with red or black stools.

If it is any consolation, you are in good company with chronic pouchitis. In most cases, it is manageable.

Jan

Hi Teddy,

 I have had a j pouch since 1994 and I have reoccuring pouchitis and for me it is important to make sure you go to the bathroom and not try to hold your stool a long time because it makes more bacteria grow.  I have found that cipro works best for me and I always have some on hand.  I can take one cipro and by the morning it starts to calm it down  my stools and becomes less runny.  I might just take one cipro every day for a week and then stop.  It can cause problems with ligaments which it has done in me but I find that if I just take one for a about a week it tends to control it.  But also I eliminate a lot of things from my diet like soda and foods that might produce gas.  Because when you have pouchitis that makes it much worse.  Also I was wondering if you are having a problem empyting your pouch because if you do that also is not could and could lead to pouchitis.

The different color of your stool is probably what Jan said but let me tell you my stool has been about every color of the rainbow and even more! lol  It all depends on what you eat.  I suspect also if you think you had any blood it probably might be cuffitis, hopefully I spelled that right but I do not have that problem because that small area that it usually forms in I had removed and that was a life saver.  I lately have been going in about every year to have a dilation because the scar tissue build up can cause a problem with me eliminating my pouch.  A j pouch is not a easy thing to understand.  I have had mine for 23 years and it seems when I have it figured out something new pops up. 

I know sometimes you feel alone in the world with it but there is always someone here to talk to and give you adivce.

Debbie

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