Some background info:
I just turned 61 and have had Ulcerative Colitis for about 20 years. I have 2 awesome daughters and a wonderful husband. With their support,I have weathered the UC storm pretty well, although it definitely has impacted my life. I have been on Asacol throughout, and never had to go further down the medication route, so I would have to say my condition is not as severe as many I have read about.
Some more background details:
I have always been very active, squeezing as much into every day as possible. I work managing a veterinary hospital and have ridden horses all my life. I have really enjoyed reading the posts on the website and your books, and totally agree that a positive attitude is everything. Even when UC takes a swing at you, you can let it overwhelm you or give it a day or two and then get going again. I am no hero, UC has taken its toll, I enjoy my horses, but a career showing them was impossible. I just tell myself that I am damn lucky to be where I am, those guys are my friends and I am so fortunate to have help when I need help caring for them.
Right now my stomach is very picky about what it wants, and I spent a good portion of the day cleaning out the fridge and shopping for the things which will get me in a better place, as described in your books. I had back surgery a year ago, which triggered a terrible flare of the disease. I was hospitalized 2 weeks after surgery and have fought with constipation and bleeding since. Things are slowly getting better, but things will have to continue to improve or I will have to get some help from the GI doc. An additional complication, I still have considerable amount of pain and weaning off the pain meds has been slow, which exacerbates everything.
Like Adam, I think a positive attitude really helps with dealing with UC.
That being said, I wish I could turn back the clock and go to that time when I had no clue what UC meant. It is terrifying to hear that this is a lifetime of dealing with doctors who have no idea what this is like and don’t prepare you at all for the initial shock, denial, depression, and anxiety that go hand-in-hand with a diagnosis of UC. Traveling is difficult and stressful for me, and I resent being forced to my bed during flares of the disease. My family is very supportive, but as you all know, nobody can appreciate how debilitating this disease can be. As I look towards retirement, my plan is to take my husband and our horses on the road to explore the vast wonders of our country from the backs of our horses. I don’t know how this will work out from where I am right now, but I remain hopeful. My experiences with surgery makes me very hesitant to go that route, and I am hopeful that if I am diligent about my new diet, (THANK YOU ADAM!) I can force this beast back into remission.
My biggest concern is that I may pass this on to my daughters.
They are both super achievers, and I consider them my greatest accomplishments. It would not be the end of the world, there are many things that would be worse, but I, like most moms out there, feel no greater joy than knowing my kids have every opportunity to achieve their goals in life. Knowing that there are options available to those of us with UC, besides more and more pills, surgery, and placing more and more limits on activities is a wonderful gift that Adam and others like him have provided for us, and I am extremely grateful!
Medications and Other Alternative Treatments Used:
I have used Asacol throughout, and have adjusted to bland foods and not much of it during flares. An occasional Immodium when necessary. Fiber and Fleet enemas for constipation. I also use probiotics but am unsure how effective they are.
written by Gwen
submitted in the colitis venting area