Having J pouch surgery

Peagreen-

Well Philly is a bit closer to where I live and my GI doctor referred me to Dr. Goldstein at Jefferson. I liked him instantly and he did the surgery laparoscopically which is what I wanted too.

How I came to meet Dr. Bauer was when I was in the care of my old GI doctor, I underwent a treatment called Cyclosporine at Mt. Sinai. I was there for a week getting this intravenous treatment and if it didn't work, Dr. Bauer probably would have done the surgery then. The treatment worked and I left the hospital only to flare worse than ever 3 months later. Those were bad times to say the least. Shortly after that I tried Remicade and that was a bust too. So here I am...no colon and still rollin'!

You will be in great hands there at Mt. Sinai. 1700 procedures is a good number!

I've had my bag for 2.5 months now. You cannot smell the output through the bag. For when I empty it, I put in odor neutralizing drops and some tic tacs. The bag should never fall off. Honestly, I have a hard time getting it off sometimes. My bag has never leaked, but if you do experience leaking there are many different products to experiment with. Everyone's stoma is different, you just have to find the bag that works for you.

I change the bag twice a week. I shower with it on except on days when I change it. There are wraps you can purchase to help conceal the bag. I have one from ostomysecrets.com, but I don't wear it often. I have not had to change my clothing. Baggy clothes are not necessary. Nobody knows I have an ostomy except for the people I've told. I will eventually have a j-pouch, but need to finish school first.

Having the bag wasn't a huge deal like I thought it would be. You cant see it or smell anything. The hardest part for me was the skin irritation because my stoma was sunken in instead of protruding a bit. It would have been so much easier to manage if it wasn't sunken in. I have to admit though I was quite happy to see it go!

     Marianne, you are the only person who mentioned cyclosporine to my knowledge.  My GI doctor was going to try that on me.  I do believe I was just a walking guinea pig to him.  I suppose because I am considered an old lady with this disease he figured I was expendable.  First 6MP, then Remicade, then Humira .  But he wasn't finished with me yet....he mentioned Cimzia, cyclosporine, methotrexate (not sure I spelled that correctly) and sending me back to Dr. Lichenstein over at the Univ of Pa.  I went to Lichenstein once at my GI doctor's recommendation and all he did was brag about all the papers he wrote on IBD.  Really disgusting.  He once even mentioned a treatment he wanted to try on me where they would put me in isolation,  drain all my antibodies by suppressing my immune system way down and then building them back up again...HUH????  That was the last straw with that guy.

    

It's always good to hear success stories :) I am glad to hear you all are doing so well.

My daughter had her take down on 12/28/11 and all went well. She did get pouchitis about a month later, and was treated with Cipro and Flagyl. Hopefully that will be her "one and only" bout with pouchitis. She felt like she had the flu and was pooping a lot more than usual...but it was still better than having a flare!!! :)