It's nice to see this discussion area where I can have room to rave & rant. My son is almost 2 1/2 years post op. He has struggled from day one. First he developed an abdominal abscess after his colectomy and then pouchitis after his takedown. All together he spent almost a month in the hospital in 2005. We thought after the takedown that everything would be better. But he has had one problem after another since -mostly chronic, sometimes severe pain without any good diagnosis, rectal cramping, etc., etc. He misses more school than he makes it to. He is 16, loves sports, is smart and funny but now spends most of his days sitting at home either watching sports or on the computer or playing video games because he doesn't feel well enough to do anything else. His doctors don't seem to have any idea what to do for him. And the times they do want to see him and try to figure something out, we have a fight on our hands to get him to go see them. He has ZERO confidence in doctors and has been around and around so many times without really being helped that he doesn't want any of them touching him. He's depressed and on handfuls of pills for pain, depression, rectal cramping, possible pouchitis (flagly - which sometimes causes more stomach pain), etc. He wants to give up, I want to give up......That's life right now. And I'm so tired of seeing his friends going on and living their lives while he just sits and waits to get better.

Hi Zach's Mom, I dont have an answer for you, but your son sounds like my husband. He has had his pouch for 6 years and pretty much, has been miserable. We saw many doctors and no one gave us any answers. We finally went to the Cleveland Clinic and they found the problem with his pouch and he is scheduled for a redo/repair/whatever it takes to make it better surgery. That is what I am calling it. I have all my faith that they will help him. Quality of Life has to start soon. He is 44, I cannot even imagine what it is like for a 16 year old. Try to go and get an appointment in Cleveland. Dr Bo Shen is a good place to start. Find the answer now, we waited way too long for Joe.

Suzanne, what kinds of problems has your husband had over the years? I'm curious as to his experiences.

He had pouchitis symptoms from the beginning, frequent bowel movements 15 or more a day, severe butt burn, not able to empty completely. Just never right. They tested for Crohns and we were told he did not have it. We were told it was a stricture problem and he would go and have them open him up more, not fun, and then Cleveland said he did not have a stricture problem. They said the pouch has a leak or sinus cavity and it does not function properly. He has an abscess right after surgery and I guess that is when it all started. 5 doctors scoped him and not one told us. It could have been hidden I guess, but why was CC able to find it? He has been on Cipro for the last 5 years on and off, more on than off. It has been a long road.

I know this may not be something that a 16-year-old wants to think about, but have you considered going back to an ileostomy? I've just gone back to a loop ileo after having chronic, undiagnosed pain for two years. There are many on this board who have gone back to an ileo and are now pain free and enjoying life. If your son thinks that he can't live with an ileo, then please have him read some of the posts here or PM someone to talk to him. I know that JasonPA has just gone back to an ileo and feels better than ever. He's even going to start playing hockey again so, yes, sports with an ileo are possible and your son needs to know that.

I hope that he can do something to help feel better soon. It's an awful feeling to have your life on hold because you feel too bad to do anything.

Good luck!

Erin

Zach’s mom,

I’m sorry to hear about your son, but I wanted to say that your story and my daughter’s story, Kaitlyn, 15 ½ years, sound IDENTICAL. We are only 6 months post-take-down and she has been experiencing severe abdominal pain since her first bout of pouchitis, 2 months post-op. We have been to every doc, even tried acupuncture. Met with 2 G.I.’s and even the pain specialist, who have all just handed us vicodin.

I don’t have any answers, but I just wanted to let you know, I’m here if you need to chat.

Arleen Diamond