It's been 1 year since I had the J-pouch surgery and ever since then I've been sick all the time. I've had 4 fissures and 2 surgeries to try and make things better. I'm still on pain medication and I've tried every anitibiotic you could possibly take to get things right again but I don't feel any better. I've been on Remicade treatments also. I'm just tired. It's frustrating. So today I had a talk with my parents about going back to the bag. My mom wasn't too happy about it because I'm only 18 and I have a full life ahead of me. She doesn't think I'm going to be able to have kids with the bag either. But all I want is to feel better.

I would rather be healthy than sick and taking all different kinds of medication.

Anyways, any advice or opinions would be great.
Thanks,
Danielle.

Why not speak with Dr. Fazio at the Cleveland Clinic and ask him if he thinks you'd be a candidate for a Kock pouch? But first, get him to give you a second opinion about saving the J-pouch. Might be worth a shot.

I also reccomend making an appointment at the cleveland clinic. I would try to see Dr. Fazio or Dr. Remzi for surgeons and try to get an appointment with Dr. Bo Shen also. He's a GI doctor specializing in people with pouches. I was somewhat in the same boat as you. I'm 22 and I was having problems since my takedown for 7 months before I saw them and now as of wed. am done with my second takedown and feeling much better. Good luck.

That's a tough decision to make, especially when you are in pain and just want it to end. I'm sure there are many people here who can tell you everything you can do with a bag. I hated it, of course, but I was comfortable enough to go swimming in public with it. As for having babies and what not, I can't help ya! Still single.

Chronic illness is a major impediment to childbearing, not being an ostomate, so don't let well meaning loved ones steer you in the wrong direction.

It doesn't sound like the meds are the real issue, but that they really do not make you functional. Being functional is what it is all about. A year is not a long time when you think about how long it takes a pouch to adapt, but if you have really given it your best, but are overrun with perianal disease and/or other pouch issues, I think it is reasonable to cut your losses and start seeking surgical opinions on reverting back to an ostomy. Some surgeons may likely recommend having a diverting ileostomy to see if that improves your health, but the true test will be when you have the ostomy taken down again. I agree it makes sense to seek the opinion of someone with a great deal of experience with failed pouches to determine whether your pouch can or should be saved and if you would be a candidate for a kock pouch.

At this point, I think you also need to have Crohn's ruled out before even considering a Kock pouch. Being only 18 does not mean that you do not have enough experience or knowledge to figure this out.

Jan

Hi Danielle, I am so sorry you are dealing with this. I am one of the J-pouchers who went back to an ostomy for a better quality of life. I was so sick and miserable with complications from a fistula that the ostomy gave me my life back!! Like Jan said you don't have to resort to a permanent ostomy right now. I have had a "temp" loop ostomy for 7 years now and have lived a great pain free life. It is only now that I am thinking about reversing.
As for having a child with an ostomy there are many ladies that have.
I know your parents are well intentioned but it is all about YOUR quality of life and you deserve a great one!

Thank you all so so much for your opinions. It means alot to me. I've called my GI doctor today and I'm making an appointment tomorrow for next week to go in and see him.

I've decided to go back to the bag for the rest of my life. I think it's best. I'm disappointed that the J-pouch didn't work out like I would have liked it to but all things happen for a reason.

I'll be having the surgery in a couple of months ( After I graduate =) )

Thanks again everyone,
Danielle.