It's been a while..

[hbonsky]

Feel like it has been forever since I've been on this forum... Zachary is still not doing well and we have finally moved from Las Vegas to Michigan and are working with new doctors.. Only been here 2 months and already these doctors are doing more than the past 3 years in Vegas (never go there for medical care

They still havent figured out why his J pouch is not working. It has been a year and he has no control, inflamation and still wears pull ups to school. His doctor say sometimes people don't adjust to the pouch and if everything fails, he may have to go back to the ostomy... Hoping this doesn't have to happen.. We have an appointment on Tuesday. Anyone know of someone who had a pouch that had to be reversed?

 

[Patricia56]

Sorry no help on the reversal.

One of the "experts" on Pouchitis, Bo Shen, is at Cleveland clinic. Might be worth trying to get a 2nd opinion there. I'm not sure if he treats children or consults with the ped IBD clinic but it may be worth asking.

Here's a very recent article on pouchitis you may find helpful although you probably know everything it has to say.

http://www.medscape.com/viewarticle/805380

I'm sorry he's had such a struggle and hope he gets well soon.

 

[Dexky]

QueenGothel

I don't think her daughter has had this particular problem with her pouch but she is in MI and may have some good advice for you. Good luck!!

 

[Sascot]

Sorry to hear things are still difficult. Hope the new docs get some answers and a solid plan for you

 

[QueenGothel]

Heather as he has Crohns Disease the J-Pouch really isn't the best thing for him. I am so sorry but they should never have recommended a j-pouch for him. Life with an ileostomy really isn't all that bad once you get the hang of it. Dexky thanks for tagging me she is part of our current group of parents of kids with a J-Pouch. We know each other, thanks for the tag though!!!

Sorry I don't have much to add.

 

[CarolinAlaska]

Sorry he's still struggling

 

[hbonsky]

I know... wish I would have know more before I let the doctors do the pouch in Las Vegas. Hopefully they can figure something out. I remember between surgeries, he did well with the ostomy... The bag changes are just a pain

 

[Farmwife]

Yea, I think we have ALL had the "wish I had know" moments.

Hugs to you and yours.

 

[QueenGothel]

Heather, I know the bag changes are a pain but eventually it is precut flanges and eventually he will be doing all of it himself. Also I did Rowans change the other night in 8 minutes! I am getting really good at it. I know it can be very frustrating, but he cannot live in pull-ups either. You know they aren't going to fix it because he shouldn't have it in the first place. So sorry that is the case. My heart just aches for him.