So I had my takedown almost 6 months ago at this point and have had pouchitis for at least the last 4 months. It hasn't been THAT bad I don't think. The nighttime leakage to the point of needing to change clothes every night...is what is most annoying to me.

I have been on cipro and flagyl for probably 2 months at this point. I felt GREAT for awhile. I tried to taper down (as instructed by surgeon) and ever since I have not felt normal. I tried to go back up...but they don't seem to work as well. Finally broke down and called my surgeon today (Dr. Fleshner) and he said I needed a pouchoscopy. I know that is not a big deal, but I guess I was hoping he would just give me a different antibiotic.

And for some reason when he said pouchoscopy I got panicked like...well maybe I don't feel that bad. Like if he doesn't find something in there than I must be a big complainer and it's all in my head.

Does anyone else feel like this sometimes? It's weird...I should be thankful that he wants to get to the bottom of this.

Kenzer,

I had my takedown 4 months ago and I am going through the same thing. I cannot get off augmentin for more than a week and I have recurring pouchitis symptoms. When I got scoped about 3 weeks go they saw a few spots of mild inflammation and my cuff was very inflamed.


I am also very concerned about my inability to get off the augmentin without having severe symptoms for fear it will become less effective over time.

My suggestion to you would be to go for the scope so they can look at the pouch as it is very hard to diagnosis pouchitis without this and possibly you could have cuffitis versus pouchitis and the treatments are different.

thanks! I think you are right. I'd be excited if it were something else (cuffitis, stricture, etc)...a fresh start to fix it.

Well, hopefully we will both figure this out soon! When you come off augmentin have you tried taking probiotics? You probably have, but I thought I'd mention it in case. I have tried vsl3 DS...it did help for a little bit. It might work for you next time you come off the antibiotics.

I am going to try it again when I eventually feel good enough to come off antibiotics and/or if surgeon suggests another treatment option. I do have over a hundred packets in my fridge right now

I read somewhere that you can take probiotics while on antibiotics but you need to take them 3-4 hours apaart from each other. I'm currently taking an antibiotic for an abcess that was drained.

If probiotics help pouchitis shouldn't you be taking it while on antibiotics? If antibiotics kill the good bugs it makes since that you should be adding them back while on antibiotics.

I could have this wrong.

I can totally relate to having the fear the pouchoscopy will not find anything, and it is all in my head. I had a pouchoscopy 3 weeks ago for pouchitis and the dread filled me. It showed a lot of inflammation.

I think I had a mild form of pouchitis since takedown, but I could deal without until last month. Since I've been on Flagyl/Cipro combo. I was feeling better so when the course ended I stopped. Then the symptoms started coming back. I went back on the Cipro, but not the Flagyl. Cipro alone is not working as well. I just really hated the Flagyl. I see the surgeon again today for a follow up. We'll see what he says.

Since I take the Cipro twice a day (morning & evening), I take VLS3 in the afternoon to help replenish the good bacteria. I may be throwing my money away according to some, but I know it's not hurting me.

Kenzer, I can relate - almost every test I have anymore, I wonder if it's a) necessary; b) going to show anything; and c) if it doesn't, am I a hypochondriac? Not to mention d) if it doesn't show anything, then what?!?

Also, I'm with Karbear on the probiotics. I too take VSL3DS about half-way between doses of antibiotics. My jpouch has been behaving very nicely for about 8 months now, and even though there are a lot of variables to consider, I like to think the probiotics have something to do with it.

Thanks guys!

Karbear sounds like we have been doing the same thing as far as antibiotics. And agreed...I hate flagyl, but for a while it was really helping me. Karbear, let us know how everything goes with your surgeon today! Good luck. Hopefully he comes up with a new better plan.

toughenough, yes I have been taking antibiotics in the morning and probiotics at night. The probiotics seem to help with night time leaks a little.

Think I was just bumbed last night. My surgeon is in California, and I was supposed to be headed home for a fun little trip to see my parents and go to a family wedding. Now let's throw in a pouchoscopy Am I gonna be super groggy...or is this just conscious sedation (i.e. I'll be able to function later). I know some people do it without sedation...is that common?

The last one I had (different doc) they gave me TONS of sedation. Felt super weird all day.

My appointment today: good news/bad news. The pouchitis is still there, but has gotten better. I'm to continue on the Cipro. If I feel things getting worse, I can start back up on the Flagyl again too. I don't have to follow-up with the surgeon anymore. I think he is tired of seeing me after a cyst, cuffitis, abcsess and now pouchitis all in less than 1 year. I will be following up with my GI who is knowledgable with j-pouches.

For my pouchoscopy, I was not sedated. It was quick though, because he was only looking for pouchitis and to see how pervasive it was. I only had mild discomfort and didn't do any prep. I have to say though, the pouchitis was keeping me pretty cleaned out on its own.

Karen-
Who is your GI dr.? I was seeing Dr. Choudhary who is out of Jefferson before surgery and I haven't seen her since. I was wondering when I'm going to get the "boot" too from the surgeon's office. I'm pretty sure she has patients with J pouches. I was just wondering if you use a GI dr. that works out of Jefferson. Good GI doctors are so hard to find and now we need them to be experienced with pouches!

Sorry you still have the pouchitis...glad it's getting better though. Hopefully this round of meds will knock it out for good.

Karbear-

Well I will be thinking of you. I hope that the cipro and/or flagyl will help you feel better soon! Flagyl seems to help me when cipro doesn't (but I know we are all different).


-Mackenzie

I understand how you all feel about any kind of test, will they think I'm faking it and find nothing and what will I do then?? Unfortunately they usually find a problem, except for my non-related foot pain. A foot specialist didn't find my problem 5 years ago so they assumed it was my fibroymalgis. I recently was diagnosed, by a better foot doctor, and am getting treatment for neuromas in both feet. The new doc said you've had this for a long time haven't you? I'm mad because of all this pain could have been avoided while I was having UC and other pain, grrrr. This is the year for trying to get past a lot of pain.

I'm sorry you have had so many problems Karbear & Kinzer. I think something is wrong with my pouch because I'm still in pain everyday. I'm not having pouchitis or cuffitis symptoms, cross my fingers, knock on wood, kiss a rabitts foot and looking for a 4 leaf clover. I have been partial to abcesses....

Kinzer I hope you can make it for your family and wedding plans. Please let us know the results of your test.

You ladies are the best and I pray everything is clered up soon!

Are you tired of each time you wake up and before you go to bed you think about your j-pouch?

Marianne- My GI is Dr. Kozuch out of Jefferson. She is really great, so I feel like I will be in good hands. I don't know if you will get the boot with the surgeon. Dr. Isenberg said he was getting out of his knowledge with chronic pouchitis.

Kinzer- I am beginning to feel better now that I've been back on the antibiotics for about 5 days now. I hope that you can find an answer and enjoy your trip.

Thanks for the info Karen. I think I am ok with Dr. Choudhary if I do need her in the future but that's good to know there is someone else really good there. My only issue is this damn stricture...going to see Dr. Goldstein next week. I'm sure this time he's going to give me a tool to dialate myself. Ugh!

Don't think it is all in your head if the scope is negative. You can have bacterial overgrowth without overt pouchitis evident on scope. The treatment is the same as pouchitis.

Jan

OK so I had my pouchoscopy this morning. I had a narrowing of the opening which my doctor stretched a bit he said. He also found inflammation of the pouch which he said looked a little abnormal and a little inflammation above the pouch. He biopsied and expects results next week. He said he won't know the significance of the inflammation we get the biopsy results back. He did say that he didn't see anything alarming which was really good.

I had already gone back to the cipro/flagyl combo and it has started to make me feel better. So I am to continue on that until he calls me next week.

We shall see what the biopsy brings. Thanks for all of your input girls! It made me feel much better going into the pouchoscopy. I am now eager to learn what the biopsy says.

-Mackenzie