Hello, this is my first post as a member. I don't really have a specific question right now - I'm just trying to get my hands on as much information as possible, so I've spent a LOT of time recently reading thru the different threads. The people on this forum are amazing and I thank you all in advance for sharing your lives, stories, etc. It's been so helpful as I try to wrap my head around what is about to happen in my life. I am scheduled for a one step J-pouch surgery on 4/17/07. I have lived with UC for 30 years, but the last 20 or so years I have been in remission and have lived a very healthy and normal life . . . no prednisone, no pain, I can't even remember the last time I had a flare-up. That all changed on 3/13/07 when I was told that the biopsies taken during a routine colonoscopy showed high grade dysplasia in my rectum. I am devastated but have come to terms with the idea and I accept that my only option for continuing this wonderful life is to do so without my colon. My surgeon (Dr. Worsey in La Jolla) feels the J-pouch is the best option for me, but I am not 100% convinced. I was opting for the K-pouch route. I spent my teens and twenties either in the bathroom or having accidents, so the thought of 10-20 BMs a day is terrifiying. I do not want to live my life in fear of not being able to get to the bathroom. Been there done that. I would welcome any and all input from those of you that have had a one step procedure. Since I am not "sick" with UC now and I'm in good general health, Dr. W believes I am an excellent candidate for a quick recovery. I hope he's right :-)
Thanks,
Jennifer

Jennifer: I'm very sorry to hear about the dysplasia. As a result of UC I had a two-step J-pouch procedure and my take-down was in January 2007. From about 5 weeks after the take-down I was having no more than 6 BMs per day. I have no problem at all controlling the BMs; no need to rush to the bathroom and no problems at night. It has really worked well for me. I know it is emotionally tough, it was for me, but it has really worked well for me. I wish you the best.

Kevin

Thanks for the support Kevin! I know I have a long and tough road ahead of me. It is so comforting to know this forum is here . . . :-)

Jennifer,

Just wanted to welcome you as a fellow newbie in a somewhat similar boat, and thanks for replying to me on another thread. I had an approximately 10 year med and symptom free remission after my initial two years of UC attacks, over 20 years ago, but have been on and off symptomatic and flaring for the past 9. In my 10 good years I went underground and even abandoned any contact with doctors, falsely trhinking I had been misdiagnosed all along.

I think we feel identical emotions, because though not in remission, I was very excited having just started TSO (heminth) therapy days before I learned of my dysplasia and now like you I am terrified of a rough life ahead, but on the positive side you are indeed in excellent condition for surgery and once pst that barrier we will be free of the constant fear and anxiety of the UC demons.

Good to see you here amidst this amazing bunch of people who have blazed the path ahead of us.

hi there, can i ask what is heminth therapy? i have never heard of it before. i did a search on the site but it came back with nothing?

Deedeeh,
I apologize for my atrocious (typo induced) spelling! Helminth not heminth therapy, a.k.a. Trichuris Suis Ova, a.k.a. live (but sterilized and specially bred) pig whipworm eggs used for UC and CD therapy. So far I have not responded but it has only been 5 weeks. For more information see http://www.ovamed.de

Christopher

hi Christopher. thanks a million for that. i have heard a bit about whipworm egg therapy (did not know the official name, Helminth) however i dont think it is available in Ireland. will check it out though. thanks again for the info,
d

Welcome Jennifer. I had UC over 20 years and had a one step surgery. I had a good recovery and my pouch is so much better than having UC. You'll need to have a little patience in the beginning while the pouch adjusts. I had no urgency, frequency, bleeding or pain after surgery. I started with foods slowly, but after 6 months or so, I was eating everything, and no longer had to look for the nearest bathroom.

My colon was starting to narrow and I had to have scopes more often, and it was mentally draining. Having surgery and not having to worry about developing cancer was a great feeling. I was also taking over 30 pills a day, and stopped them all after surgery.

The best thing to do is keep coming here and asking questions and read as much as you can. If I can help, please let me know.

janna