I've had my jpouch for about 2 years now and I suspect I've had pouchitis for about that long as well, though I wasn't diagnosed until about a year ago. We tried antibiotics and they worked up until I was taken off of them. My doctor then put me on vsl#3 but it actually made things much worse. I stopped use of the vsl#3 contrary to what my doctor wanted and I felt much better for a time. I haven't had a really bad pouchitis flare up since stopping the vsl, but every time I start feeling better... it doesn't last long. I'm running out of patience and I can't keep up with all the positive thinking anymore. I've changed my diet numerous times, I've tried being more active, less active. I've changed my entire life multiple times to no avail. I spend so much time in the bathroom these days that I've developed a severe hemorrhoid which constantly needing to use the restroom has perpetuated the existence of. Does anyone have any experience with a case like this?
I've had the close to the same experience.
Painful dreaded bathroom experiences.
More time in the bathroom than out.
Sorry to hear this. I didn't have pouchitis. But it never worked right and I tried things like you said.
It seemed to only make things worse and at 26 months I couldn't take it any longer and had it removed. After much thought and dread of course. Buts it's gone. And I'm better off now.
I only hope you can find a way through. Just remember. Life does not end with an ileo. If that's where you end up. I am healthy and happy. It's no fun what your going through. I know. I've been there. My time was limited in my case . It was slowly killing me. I can see that now. I just didn't have time to go through any more diets or surgery to see if this or that would work. I had to go to what worked. And this does. I just didn't have time.
But I'm happy with the outcome. Because I was miserable with the pouch. It was worse than the uc. I didn't think anything could be but that was.
My best to you. Like I said. I hope you find your place. It's there. And it can be found.
Sorry it's not a positive reply. It is in a way. Because I did get my life outside of a bathroom back. And I have no pain. No burn. None of that. Done with all that. And thank goodness for that.
If I'm reading correctly you may just have antibiotic-dependent pouchitis. Some of us (like me) just have to stay on an antibiotic to feel well. Ideally, if several antibiotics work for you, you can rotate between them every few weeks.
To Scott F., Thank you for your opinions and help. I wrote before asking for advice and you and Jane are always willing to help. I think I'm facing another episode of Pouchitis and Cipro doesn't seem to work anymore. I can't take Flagyl because make me sick, so I don't know what to do next. My GI kind of gave up on me. He finally prescribed me Cholestyrame (Questran) and was helping but not anymore. Any suggestions for me Scott? Your help always seems to give me hope and good results.
Thank you so much for your priceless help!
To Jordan: I feel so close to you. I'm experiencing pretty much the same symptoms. Since I had my JPouch (2014), I had all kind of issues, pouchitis, cuffitis, an obstruction ended on a big surgery, constant pain, frequent bathroom's visits, isolation, depression, meltdowns, even marriage crisis because all these issues. The only difference is on my case VSL#3 seems to work ok. My advice to you is try to find the good combination of antibiotics that work for you. Please, don't give up on your Pouch. I know how hard is to keep our peace of mind and positive attitude when you feel so sick, but I strongly believe it must be a meds formula for each of us. On my case, haven't find it yet, but I'm. Sure I will and you too.
Best of Luck,
Lauralee, there are definitely more antibiotics you can try. Examples include Xifaxan, Augmentin, and Tindamax. If you can't find a single antibiotic that works, a combination might do the trick. For example, what Cipro alone stopped working for me, adding Flagyl has worked well for me for several years, even though Flagyl alone never worked.
If you really run out of antibiotic options, biologics seem to do a great job for many of us. If your GI has given up then you're better off without him. Find one that knows how to read, and bring him the articles Jan has posted links to at the top of the Pouchitis Forum. Good luck!
Thank you all for the advice! I have been scouring the internet trying to find something, anything to help and I stumbled upon a few articles about pure 100% agave tequila being a good prebiotic and Apple cider vinegar also helping set the stage for healthy bacteria while keeping the bad bacteria at bay. I've been trying a combination of a shot of each a day and I'm not sure if it's one of them or both but I've actually been feeling miraculously better. Like a whole new person. I don't know if there's any evidence of either working for people like us but it seems to be helping me so we will see where things go from here.
Can you please link those articles, I'm interested in what they say. I've heard of the apple cider vinegar before, but not tequila helping with things.
I was waiting a few days before to write about my Pouchitis and the meds I'm using. I talked to my GI again and he said I should give another chance to Cipro and I did. The results are good so far, started them five days ago. My biggest issue is I'm working out of the States for a month, and is complicated to get antibiotics without seeing and specialist here and I don't know anybody, but luckily I brought some Cipro (I'm like a mobile pharmacy every time I travel) and seem to work so far (fingers crossed). If Cipro can carry my Pouchitis until I'm back to USA I feel blessed.
I got the names of other antibiotics alternatives you mentioned. I'm switching GI doctors ASAP once I go back.
Thank you for all your help!
Good luck, Lauralee!
I felt that way as well
I'm doing good on Entyvio
I hope u find something that works