Looking forward to better days.......................

I have been on this site off and on for years. I have given advice and have taken advice and am so thankful that it exists. There is nothing better than communicating with folks who have similar issues as you. I have had a dysfunctional pouch for just about 18 years but lead a fairly normal life. No one would ever guess that I have some major health issues. I only talk about my problems with my husband who is very understanding. He has been my rock from the day I had my colon removed and let me tell you, there have been some rocky roads through this journey. I have thought about the Kock Pouch for years, even making an appointment for surgery and canceling it two days before. I was scared to death that I might be trading one disaster for another. I made a surgical date several years later and a few weeks before the scheduled surgery (2006), I was diagnosed with breast cancer. Obviously I had to deal with that before anything else and after my cancer treatment I just put the thought of surgery on hold. My main issue has been the leaking, being constant nowadays. It’s really taking its toll on me lately and I have been quite unhappy with the quality of my life - still going to the bathroom an unacceptable amount of times, dealing with severe butt burn at times, urgency, and incontinence. I have gone to the best doctors in San Francisco, LA, and San Diego, looking for a magic potion. I even flew to the Cleveland Clinic to see the great Dr. Fazio and the great Dr. Shen. Dr. Fazio thought I would be a good candidate for a KP and Dr. Shen prescribed an arsenal of meds but all of them failed to improve my situation. Living like this would drive anyone with an ounce of sense crazy but I just adapted to whatever I needed to do. I carry a squirt bottle, zinc oxide, vaseline and Viva paper towels (they work great) in my purse at all times. The general consensus from most of the doctors I have been to is that my original surgeon set my pouch too low and my sphincter muscles are basically broken. Lately I’ve just had it, enough is enough, and a couple of weeks ago I saw Dr. Worsey at Scripps Clinic in La Jolla, CA. He feels I would be a good candidate for a Kock Pouch and said my pouch looks good but my sphincter muscles are in terrible shape, beyond any help. I actually had my sphincter operated on in 1998 and the “at least 25%”improvement I was told I would get, didn’t pan out. Dr. Worsey is hoping to use my existing pouch but will not know if he can until he actually gets in there and inspects it. If not, he would create a new pouch with additional small intestine. So after all of these years of agonizing emotional and physical struggles, I have finally made the decision and said yes, I need a better life and scheduled surgery for October 29. I am actually feeling really good about my decision. I will tell you that I prayed for guidance, strength and patience and so far, so good. I have no anxiety about my decision and feel rather at peace which really surprises me. I also have PSC and I am hoping that this surgery doesn’t stir anything up with my bile ducts, perhaps a needless concern. I know there are a lot of people on this site that have to make major health decisions and I commiserate with each and everyone of them. There is no crystal ball and we have to take risks and hope for the best. The odds are in my favor so I am going for it and looking forward to a life not tied to le toilette.