I've been a silent reader of this forum for a very long time and between the UC, Chron's and now the Ostomy forum, I've learned a LOT. Thank you everyone for sharing so much and making it a smoother ride for people like me.
My journey is a complicated one, as almost everyone here ... I wanted to share it and also ask some brief questions to comfort myself of the fact that I am making the right decision moving forward and not "giving up".
I was diagnosed with Ulcerative Colitis about
10 years ago when I was in college (I am 31 now) and it started off really bad. Uncontrollable bleeding, lots of prednisone, asacol etc ... we all know the drugs. Fast forward to today, my body has become steroid dependent. I am developing signs of oste
openia and I have tried every drug under the sun. I'm on Immuran (150mg / day), Lialda (4 pills / day), Prednisone (40mg / day). I had 3 rounds of Remicade which SEEMED to help but I had terrible leg pains and body aches. After battling the insurance company to get Humira approved, I tried the loading doses and I've flared up again.
My GI had recommended surgery almost 6 months ago and I considered it, even to the point where I met the surgeon and almost scheduled the surgery date. I chickened out and thought I could beat this ... I tried Acupuncture, Chinese herbal medication, Homepathy, Aurvedic medication .... ANYTHING and EVERYTHING. Everything seemed to help in the beginning but I still have diarreah and when I come off the steroids, the bleeding.
So now, after getting 2 other GI opinions on the matter and all of them being the same 3 for 3 for surgery (that actually rhymed
), my wife, mom and myself have decided to move forward with the surgery. We are meeting with the surgeon tomorrow to possibly set a surgery date.
The disappointing feeling about
this is that I feel like I am giving up, like I did nto try hard enough to '"cure" myself :( Is this the case? I've spoken to so many people, read so many storied about
how after the surgery, life is quite amazing. Almost 100% fold. I have some great news and that is .. my wife is pregnant, 2 months in. I want to be able to run around with my children, watch them grow and be able to keep up with them. I also don't want to be this sick that my wife has to take care of me and the child alone :-/
I have a great job, very understanding management. I am lucky, especially in this economy. I am good at what I do, and sometimes I believe that if I did not have this disease I could be SO much more. Maybe that is one of the reasons I am giving into this surgery.
I live near the Cleveland Clinic Florida and my surgeon's name is Dr. Eric Weiss. Any input on him as a surgeon, or the facilities is welcome please.
Any questions I should be asking? I know they want to do the J-pouch surgery, which sounds great once there are no complications. I know this is a serious surgery so how can I not expect any complications?
My thoughts are, I'm young enough right now, my case isn't as severe ... I can recover quickly from this and be there for the birth of my first child
(Oh I cannot wait for that day!).
I used to box, in college, I would love to be back in shape again and be off all of these medications.
More than anything else I think I just need some words of encouragement, and someone to listen to my story. We all suffer .... but at the end of the day I thank God for this, because it would not have made me the person I am today.