about to have surgery to create j-pouch

I have been diagnosed w/ indeterminate uc/cd for 11 yrs - based on recent colonoscopies the drs now belive it is uc and i have multiple sites of dysplasia in my colon so its coming out - since I was taking a new anti-tnf drug which is an immunosuppresant I have been waiting over 6 weeks to have the med clear out of my system - mentally i have been prepared for the operation for a while, although ironically the medication had the uc in an inactive state and I am feeling great - my biggest concern is waking up and really discovering that I have an external pouch for the next couple of months before they reverse the process and let the J-pouch work - i am looking for patient experience of dealing with this process and living with the external pouch until the next step - what to expect care wise, return to work etc - Thanks for any help

What's the protocol? Do I say thank you to each response or does that clog up the forum? Thank you

PPl1

Suebear is right about www.j-pouch.org, it's a great site and you should register for the forums there (I am Meesh62 on that forum as there already was a Meesh).

Another VERY good site that explains the whole process is http://www.colorectalcare.org/ipaa.html

I had my first surgery January 12, colon and rectum removed, creation of the j-pouch and a temporary ileostomy. The first few weeks were rough, I went back to work at five and half weeks part time and after eight weeks I actually felt quite good. Dealing with the ileostomy is a drag and I have a little over one week to go before my take down surgery.

I have a lot more energy, I feel like my old, pre-UC diagnosis self again. Even with the ordeals of the surgery and the ileostomy I feel it was a very good decision for me. I am looking forward to having the j-pouch start functioning and adapting to it.

Meesh

Hi ppl1,

Just wanted to share a little bit of my story and hopefully help put you as ease (as much as possible;) in regards to the colostomy bag!  I was diagnosed when I was 16 and lived in pure hell for 4 years.  I put off surgery as long as possible because the thought of wearing a bag on the outside of my body with my "fluids" in it was disgusting.  Not to mention I was in my teens and thought it would end my social life.  Who wanted to be friends with the girl wearing a bag...right?  Well I ended up so incredibly sick, and after numerous blood tranfusions and hospital stays I finally gave in.  After 2 months in the hospital I realized, hey I don't have a life right now so why not see about improving it?!  So my Dr (who is amazing!!!) set up a one on one with another patient of his who had already had the surgery... problem was she was in her 60s and LOVED the bag bc she didn't have to miss The Price is Right for bathroom breaks...lol.  Me, being 20 didn't care about that!  While I was terrifed everyone would know I had a bag on, turns out unless you knew what I was going thru you just couldn't tell.  I tried many different types of bags and I ended up liking the 2 piece best!  With that I was able to change the bag daily- and the wafer every 3 days so my skin didn't get too irritated.  I had the c-bag for 4 months, then I had the reversal surgery!  while I have still had some ups and downs- overall I am better and would recommend the surgery! 

I am very open with my story and if you have any other question, I would be more then happy to answer them if I can!  I just turned 29 and for the most part live a pain free, must easier life now!!