Posted 6/14/2018 2:21 PM (GMT 0)
Hi there! My name is Chris and I usually post over on the ostomy forum, but I did post a lot here when I suffered with UP (my disease was mainly in the rectum). Just a few things. I think your GI doctor is right on target. Be grateful you have a GI doctor who even suggests surgery. All mine wanted to do was use me as a guinea pig for more and more meds during the twelve years I suffered with this dreaded disease. He refused to send me to a surgeon even when I was taking 17 to 25 pills daily, rectal meds, was prednisone dependent for two years straight and tried two biologics (Remicade and Humira) which both failed. My bowel movements were seven times per day, mostly just in the mornings and I had porta pots stationed in every room of the house and I live in a rancher because I couldn't make it to the bathroom. I missed out on weddings, funerals and my grandson's First Communion. Now, maybe your disease hasn't gotten this bad yet, only you can decide when you have had enough. However, when your quality of life is so deteriorated, you will know when enough is enough already.
The prednisone gave me extremely high blood pressure and diabetes. The 6MP gave me extremely high liver and pancreatic enzyme levels. I looked online to find a surgeon. I live in south Jersey but didn't want to have surgery here. So, I found a surgeon at Pennsylvania Hospital in Philly. Had my surgery in June of 2010 and never looked back. I only take one pill a day, and that is for my BP which is very well controlled, I no longer have diabetes and my quality of life is fantastic. I was not a candidate for j pouch, but I told my surgeon having a bag is a piece of cake compared to what I was going through with the disease. I am able to enjoy my two youngest grandsons, ages 3 yrs and the youngest just born this past March. Sorry I missed out on a lot with my oldest two, granddaughter is 21 and grandson 17. Who would think a 72 yr old could keep up with a 3 yr old, but I can!!!
Best of luck to you. Hope the meds do the trick, but I just wanted to let you know, surgery is NOT the end of the world. For me, it was the beginning. God bless.