things just keep going from bad to worse for my son! He is in so much pain and keeps going in and out of the hospital. I dont know what to do at this point. Last week was a difficult one. He has had a drain in his butt cheek since April 21. The good news they found the leak and fistulia. The bad news it is so tiny that to repair it will cause more harm than good. Bear claw too large. Tried a seton last week, couldnt get it in. I think they were going through the drain. So the tried the glue stuff. Wont know if its working for a little bit. But i seriously dont have much hope. So that means another ostomy. The stress is killing my family. You feel the tension as soon asvyou walk in the house. Im supposed to go to Japan in August for a family wedding and at this point, im not sure if its going to happen. I feel like im losing my mind! Well i really have! Anyone else have all these complications? We cant be the only ones. Not that i would wish any of this on anyone. Oh another thing, is Dr Remzi leaving cleveland? Im not sure if i heard correctly. Thanks folks for listening. You guys are the only ones who get it. I feel like life sucks and then you die. Not a happy camper right now
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Wow, I'm so sorry that Jeff keeps having these setbacks! I wish I had answers for you, and I apologize for taking up space on your thread. I just wanted you to know that I feel for you.
Has anyone suggested pouch removal?
Jan 
Jan, thank you. And you are not taking up space! No, we have not gotten to that conversation just yet. The current discussion is back to a temporary Ostomy. Jeff is not way ready to hear permanent or removal. And neither am I!
Thanks for for your wise words, I really do appreciate them!
dianne
Oh Sweetie, I am so sorry...this sucks. Really sucks...no other words for it.
Poor Jeff and poor you...there has to be something that can be done to ease the tension (I am making no suggestions for treatments, I know nothing about this stuff)...you guys need an out, an outting or a break. You need for this to stop.
Is there any alternative nutrition that can come into play to help him heal? Are there no supplements to help his system to kick in and heal him?
Just fishing here...I hope that the glue works...that would be a miracle...keeping my fingers crossed and the prayer line open.
Huge hugs
Sharon
Hi Sharon! Hope you are doing ok after your surgery. I'm in such a crappy mood that I'm forgetting about everyone else's problems. Jeff will not do alternative. His autism sort of prevents it because of sensory issues. Believe me, I've tried. I'm doing some essential oils for me to help me sleep, mood etc.
well it looks like he is going back to an Ostomy again. This glue thing has not worked. He is still putting out about 10cc of yuck from the drain in his butt cheek. And all this stuff is so darn painful. We are all so fried. So again, my summer is ruined. But I'm not sure if I told you, we are going to Japan August 24! My cousin is getting married to a girl related to the powers that be! Not sure if she is related to the royal family, but we know she is to the Prime Minister! So exciting. I hope we can go, it all depends on Jeffrey and how he is doing. When are you coming to the States?
Remzi leaving Cleveland? where did you hear that??
Rumor, not sure I heard correctly but if I hear fact, I will surly let you know.
where was rumor heard? I think somethings up.. his office emailed me back stating they cannot comment on that
Hi,
I am/was dealing with 2 fistulas and my J pouch is currently diverted with a temp ileostomy. In April, I had a fistulotomy done in the lower one and a cutting seton put in the higher one. My seton broke within 2 weeks. When I went back out to Cleveland in May for what was supposed to be seton tightening, I told my surgeon that I am 99% sure I am going permanent Ileo. My sanity is nearing its end at this point. I am not a fan of the setons and I am tired of going under local anesthesia for procedures. When I woke up, I learned he did a fistulotomy on the higher one so this may kill any chance of saving the J pouch anyway( probably cut thru sphincter muscle). All this being said, I had my J pouch for many years and all was pretty good until I was rediagnosed with Crohns 5 years ago. The last 5 years have been hell. Fistulas are no fun. I am so sorry for all the pain and drainage your son is going through. I am stable at the moment, but I still feel like something could be brewing down there from time to time. I feel for you about the summer. My summer was total crap last year when I was diagnosed with these 2 fistulas at the end of June 2015. I couldn't sit without my butt cushion-no fun at all! Best of luck to you and your son for a cure that ends all of your suffering. I hope the temp ileo will give your son some relief and help with healing and repair of the darn fistula.