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hi all, I have been a poucher for a full year now and I am led to believe that I am having my first bout of pouchitis. I've already made my appointments and hopefully I can make it from Monday to Thursday without a trip to the hospital since Thursday is my appointment. Just need some words of encouragement since im somewhat new at this, I am quite nervous due to what I went through with having a severe UC flare that led me to having a pouch! I've only had two flares with the disease but both were terrible! All the medicine and the blood and etc. To get back on track my symptoms are excess gas, more frequency, a LOT of tiredness, pain and discomfort in my lower abdomen, lots of discomfort in my anal area (I have to force a lot to get relieve myself), tenesmus, and some blood in stool (usually only on the paper but it sometimes does show up in the toilet). Sorry if this is a long post but I just really need words of advice from some fellow pouchers, this is honestly stressing me out. Thank you so much for anyone who takes the time to read this. 

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I have been recently diagnosed with chronic pouchitis, also had a Prometheus blood test which was positive for UC. I have taken Ciphro, Flagyl and now Xiaphan. Have had negative reactions to the Flagyl so I stopped taking that. Have switched Gastros and thinking about biologicals. Thinking about Humira. Any thoughts. Please let me know.

Sorry BMB,

I can't help much or at all. I've only had my pouch a few weeks at this point. What were/are your symptoms? What was the problem with flagyl? There is wonderful and very smart people here that I know can help. I do take VSL#3 and it does help. I started at too high a dose for me and to back it down. It not does work 

Good luck!

Hey Scott F,

Thanks for your reply,,,I was taking 3 capsules a day. I have stopped and was thinking of starting again with maybe 1 a day.  I'm still not feeling right, not terrible, just not right. 

Is it possible to have  pouchitis and not have all of the symptoms? I am about six weeks take down, I am still having strange spasms. Seems like I get them when there is gas there that I can't get rid of. It does feel better if I use the bathroom. I do have the feeling of needing to go and really don't have to. When I do, I feel that I can hold it quite a long time if I have to. I do go at night time, never an accident and am only going 5 to 8 times all together. I do think that sometimes I go and didn't really need to, could've waited. Do I just need to wait longer and be patient? It does get better right?

Thanks so much!

Hi, Shaney. Pouchitis is possible, but it wouldn't be my first guess, or even my second. Six weeks is a very, very young pouch, and 5-8 times daily without accidents is just fine. The confusing sensations should become much less confusing over time. Many people report spasms in the early days, and some folks have success with Bentyl or Levsin (antispasmodic prescription meds). Taking basic steps to reduce gas may help a bit. Are you using any soluble fiber? Three VSL capsules is a tiny dose. By comparison, I take the equivalent of 32 capsules daily (if I've done the arithmetic correctly).

To experiment with what things might help, change just one thing at a time, and give it a few days at least to see how it's working. This applies to diet, fiber supplements, probiotics, and even bathroom choices (going at the first signal vs. delaying).

I thought VSL #3 DS WAS ONLY IN POWDER FORM AND HAS TO BE REFRIGERATED.  That's what my gastro and pharmacist told me an helps a lot. I am going thru my first bout of Pouchitis and being treated with Cipro. It's the 3rd day on it and has helped TREMENDOUSLY!!! I cannot take Flagyl because I take Fioricet for migraines and there are many severe interactions that can occur. Also please note that Cipro cannot be taken along with Cymbalta because it can be lethal!!! I was on Cymbalta but willingly stopped because my Pouchitis was getting progressively worse!  

Janie 

Hi Janeip!

i take VSL#3 in a capsule. I do keeping in the fridge. I do think it helps. 

If I may ask,,,.what or how did you feel with your pouchitis?  I just had a scope done last week and was told I was in good shape but I still feel strange. Maybe this is how I should feel at this point, not sure. 

Thanks so much and good luck!

steve 

Hello all. 

I posted this using an old account and a username I thought you could change later. I won't be using the J. Smith account anymore but instead will be using this one. I haven't really posted much but I will drop by to let people know how I've been doing since I made this post. Basically things weren't getting better after this. I had gone on flagyl, which I didn't tolerate, then on Cipro. The cipro worked wonders as I got good in a couple of days. The only problem is that I seemed to have gotten C. Diff shortly after stopping my treatment. Whether this was due to the cipro or not I am not too sure. I found out about the C. Diff when I was hospitalized for severe dehydration. During my stay at the hospital gastros gave me vancomycin to treat the c. Diff. It worked but after a follow up turns out the C. Diff is still trying to multiply itself in me. It's worth noting that doctors were led to believe that aside from c. Diff I have evidence of crohns. Long story short it's not decided whether I have chronic pouchitis or crohns but I am being treated with vancomycin (which I'm about to go off of, I weaned off of it instead of directly stopping) and HUMIRA. This treatment plan seems to be working very well for me as I have had no problems at all and I feel very much normal. Sorry if there is confusion and the long post but I thought I'd check back in and let everyone know.

Hello, Edie A. It is good to know that you are doing so much better. If you have to take Cipro again, try to take a probiotic a few hours after each dose of Cipro. The probiotic will repopulate your intestines with good bacteria that was killed off by the Cipro. My doctor told me to take Florastor to prevent c diff, and members here take any kind of probiotic; the goal is to replace the good bacteria. I also drink Bio K (50 billion) and / or Ultimate Flora (50 billion) whatever happens to be on sale, and check the Best Buy date! I hope you continue with good health. Happy holidays!

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