Kyle,
I am so sorry that you are living in this pouch hell...I know that it is not easy and that you did not sign up for being worse post op than pre-op but obviously your pouch is one of those rare exceptions that refuses to behave and itself and fly right...
I can not give you any advice on the j pouch but can tell you what to expect if you have a K pouch.
For me, the 2 big differences are the exit and the position.
A k pouch is the same pouch as a j pouch but you do not use the natural exit. They put a stoma on your abdomen around where your appendix would be, so low and to the right, under the bikini line. Your stoma is part of a system of a valve + canal that lead out from your pouch. You put a tube into your pouch and the stool pours out. So no more stool thickeners or things to slow the transit down...you need the contents to be liquidy (I take prune or other juices and drink a lot of teas to keep it all flowing)...When I lube up and put my tube in, I feel nothing (like a straw into your mouth)...no pain at all. I feel it when it passes the valve and into the pouch...the liquid pours out into the bowl and at the end I rince the tube out and put it into a make-up bag where I also keep my lube and a 60cc syringe used both for irrigating if things get too thick and rincing out in public places. At home I use the tap.
Other than the first weeks there is no stomaburn, no pain or discomfort...I cover my stoma with a folded up kleenex that I tape down but others use breast pads, cotton balls or cut up minipads (I glue one to the inside of my panties at the stoma site for extra protection).
I eat normally, drink fluids a bit more than most people and avoid too much roughage (corn, peas, stringy foods like squash and pineapple)...other than that I choose not to eat too many carbs but most people just eat normally.
I empty my pouch about 6-8xs in a 24hr period. When I wake up & before bed, 1xs before and after meals. Most people do it less often...some as little as 2xs a day but my pouch is small and very low.
When I travel I have no problem but stick to a high protien diet and can go 8hrs without intubating.
I rarely have pouchitist (1xs/10yrs) and hate the flu but that's it.
For surgeons you would have to check out the master list here on the K pouch section of this site...
I hope that this helps you some and gives you a bit of hope and an extra option for the future if need be.
Hang in there and I honestly hope that your j pouch straitens out and finally gives you the life that you hoped for.
Sharon

Only you can know when to throw in the towel. And if you had a loop ileo then going to a permanent end ileo will even be better. As Sharon said, a k-pouch/BCIR is also an option.

We have a member here (Preston) who figured out very early that he just wasn't going to get along with his j-pouch and opted for a permanent ileostomy. I recall it was well before his first anniversary. Since then he's gotten married and had two children. Nothing stops him from doing anything.

If you think you'd like to go back to an ileo, PM JillM and/or Caty. They're both doing very well and would be happy to impart their very wise wisdom. They, along with Sharon, can give you information about options, recovery time, failure rates.

I wish you the best of luck with your decision.

kathy

I had basically the same symptoms you describe it I lived with it 3 1/2 years. Finally decided to get end ileo - I was 30. Surgeon insisted on just disconnecting pouch. Ileo was great but pouch continued to be a problem. Had pouch out 18 months later. Never a problem since.

Have had two babies, hiked to Ramona falls at mt hood, kayaked in Florida, yearly trips to Disney, lots of swimming, recently completed my first 5K w obstacles at the age of 41.

11 years since my end ileo and not one moment of regret. With the ileo I don't have to compromise anything in my life - I live the way I want with no restrictions, no drugs.

Feel free to pm me if you want to chat.

KP,

Suggest to take a look at BCIR... It is the impoved version of K pouch. Check it out at BCIR.com

Sharon
Can you tell me whether they do BCIR in Australia?
Gary

Cipro finally arrived today. It took 9 days from the time I requested it. I haven't had a round of it in 3 weeks. It should actually start working again. My pouchoscopy is just over 2 weeks away. I'm kind of afraid that Cipro will clear things up. That's such a funny fear. I don't want to hear "everything looks fine", when I've been struggling in so many ways. On the other hand, if Cipro doesn't work...I don't know what I'll do.

Sharon & Guy with j pouch,
You're so right. I always think "this is not what I signed up for". My surgeon told me that I might get Pouchitis one day, but that a round of antibiotics would handle it. What a joke!

Thank you for the information on the K-Pouch and the BCIR website. It's a viable option now and something I want to research further. I like the stoma's location and that it sits flush with the skin. The catheter is something I might be able to deal with. I'm afraid that inflammation would continue in the K-Pouch/BCIR, and I really don't want to lose another pouch. I should be a champion at making things liquidy...haha. I haven't had coffee and cranberry juice in a long time. The thought of possibly emptying 2-8xs a day is amazing!

Kathy & JillM,
I'm so ready to throw in the towel, but I just won't let go of the darn thing. I know what I'm getting with an End Ileostomy. That's what I like best about it. But it seems like it would need the most upkeep/attention. Thank you both for the success stories. It really boosts my levels of hope. I'm still leaning towards an End Ileostomy because I know I'd be healthy, happy, and medicine-free.

QUESTIONS
What happens when someone has chronic inflammation in one of these pouches?
How does inflammation effect a BCIR/K-Pouch?
Does chronic inflammation cause failure in these pouches?

Thank you!
Kyle

If pouchitis is your problem, be very careful with the BCIR and K pouch - really do your research. Pouchitis is possible, at least with e BCIR. That was one reason I opted for the end ileo.

The other reason was that ileos are standard worldwide. I could travel any where and find a dr to help me if needed. Not so with the BCIR or k pouch - at least not right now.

Finally, I wanted to get on with life, so I wanted whatever had the greatest chance of the fewest complications...end ileo was that for me.

I went back to an end ileo 2 1/2 years after takedown. I was miserable. Chronic antibiotis resistent pouchitis, fistulas, strictures...you name it. I didn't have a choice...I was at the end of my rope. Very depressed, barely able to work, addicted to the pain meds. My j-pouch is disconnected, and is still in. It hasn't given me any problems since being disconnected. Best of luck... :-)

I've had a lot happen since I posted in November. In December I had a Pouchoscopy with my GI in Texas. It showed severe Pouchitis...duh! The next week, I passed out in my bathroom before I made it to the toilet. I knocked my towel rack off the wall with my head and hit my lower back on the curb of the shower. I consider myself lucky to just have a bump on my head and a bruise on my back. I could have very easily injured myself very badly. Went to the ER at my GI's request, got some fluids and blood work done. Everything came back fine. Ha! Fine? Yeah right! I was getting so tired of the same old test results. Since my takedown in December 2011, something has been very wrong. Since early March 2012, I've thought I had a Stricture or a Hernia or Afferent Limb Syndrome. I knew I had Pouchitis and Bacterial Overgrowth the entire time, but something else wasn't right. I was beginning to go crazy because we couldn't find anything but Pouchitis.

CLEVELAND CLINIC TRIP
Two weeks ago I went to the Cleveland Clinic. I met 1st with Dr. Shen's PA and one of his Fellows/Interns. They spent an hour going through my symptoms and test results. They wrote everything down while asking me dozens of questions. They were both amazing! They briefed Dr. Shen and then my consult began with him. He's everything good anyone ever said about him. After the 17-minute conversation with Shen, which I highly recommend recording and listening to a couple times, he sent me downstairs for bloodwork and a stool test. The nurse took 13 vials of blood. Shen worked me into his schedule to get a lower and upper endoscopy the next morning at 10:30am and a Gastro Graph Enema at 3pm. I didn't get back for the pouchoscopy and upper endo until 1:30pm. I did not care one bit. Immediately after that, my mother and I walked through the sky-bridges to another building to have the GGE with a radiologist (to check mainly for leaks). I was high as a kite. After the GGE, we went back to Shen's office to talk about the results. Before we got there, I stopped at a deli in the hospital to get a drink and a banana. Then, I took a quick nap on a bench in the middle of a bunch of people...again, I didn't care one bit. Once we got back to talk with Shen, I threw up 5 times in the trash and immediately felt fine. After another hour or so, Shen made it back to our room. I don't know his schedule, but I know that he met with us about 8pm that night and mentioned, "90 patients today...woo!" Surely he wasn't talking about just himself. Whatever he was saying, he is pretty amazing. The Pouchoscopy showed a Prolapse near the Rectal Stump, 2 mild Strictures, and Pouchitis. The GGE didn't show any leaks, but it showed what Shen called, "A textbook image of Afferent Limb Syndrome." I was like, "Finally!" The blood results showed Mild Anemia and a Vitamin D deficiency. We then had to figure out if the Prolapse was causing the Afferent Limb, or vice versa. So Thursday, I was worked in to get an Anal Manometry and a Barium Defecography (quick fact: these rank 1st in Least Fun Medical Tests Involving the Anus). I was happy to do them. Both tests came back normal. This means I have Afferent Limb Syndrome. I am currently emailing one of Cleveland's surgeons and his nurse in preparation for surgery #3. In the meantime, Shen has prescribed my tinidazole and entocourt to make it through.

The moral of this story is...if you are constantly struggling with your pouch, I recommend going to Cleveland. It was an extremely difficult week, but I got answers that I didn't in 13 months of suffering. If you have any questions about how to prepare, where to stay, or anything, I would be happy to answer those if you send a PM.

Thanks to all those who have advised me and thanks to whoever created the search function on this site! Without this site, I would not be doing as well as I am.

Kyle

Wow, so glad you have an answer now. I have read enough on this site about Shen and CC that if I ever have any major issue, that's where I'm headed. What surgery will they do to help fix this?

KP.. sorry to hear you need another surgery but great news you have an answer. Your CC and Dr. Shen story sounds very similar to my initial time there. One reason I stick around on this forum is to encourage people who are really suffering.. even if just early after takedown (I had problems from day #1 after takedown)to go get help from the experts at CC. There really can be other things wrong other than the token diagnoses of just pouchitis and cuffitis.

Also.. completely agree with your#1 ranking of that defecography test. I call it the "pooping on throne while everyone watches you" test!

Good luck on getting a quick surgery date. They expedited my first surgery date after they figured out what was wrong.. so hope they do that for you.

I totally agree with both of you.

The only thing I've heard the surgery called so far is a "pouch revision". I know it's for afferent limb syndrome and to cut out the prolapse. I'm hopeful that the surgery won't be too invasive, but I won't be shocked if it is. The quicker I have the surgery, the faster I get back to living a healthy life. Well, I hope so at least.

I'm still waiting for the surgeon to go through the operating notes and pathology tests from my previous surgeries.

Good Luck Kp, I am just so relieved for you that you finally have some answers...let this be the end of the line for surgeries!
Sharon