I have to draw a line in the sand with this disease and make the right decision for the long term.
I understand that life is best with a colon - but only if it is not chronically diseased. The day I was diagnosed with UC was the day i was officially declared not to have a normal colon and never will. The reality is no drug will change that.
Assuming that I find an immunosuppressant that works and I live for another 30 years into my 70s, the balance of probability is that drug will not last me a lifetime. At some point, UC will flare and it's back to square one. The medical side of that is more time suffering as trial and error of drugs continue. The personal side is more time lost from life with my partner and daughter. And not to mention the side effects of medication over the course of a lifetime.
I have drawn the line in the sand and will not take steroids, immunosuppressants or biologics. I cannot handle the roller coaster ride that would be ahead with taking these drugs for a lifetime. And I draw the line at holding out for a miracle cure.
My symptoms have virtually made me an invalid stuck in my own house. With a baby daughter, I need to be as active as possible and able to plan ahead with some degree of stability rather than worrying that UC might interfere.
Being virtually housebound, unable to work, unable to enjoy time with my partner and daughter, and unable to enjoy the small things in life are distressing. The inability to predict if I can go to the local shop without the sudden urge to go to the toilet is demoralizing.
All of this has not only created instability and a loss of quality of life, but it has stripped my self-confidence. Hopefully life post-surgery provides stability, a capacity to enjoy the small things in life and the confidence to again work and socialize.
My partner has been amazing and supportive. Apart from her days at work, she too is housebound looking after our baby and preparing me special meals. Above all else, I hope surgery provides not only a better quality of life for me but (above all else) the life and future that my partner and daughter deserve. That is my main aim.
I realize a period of adjustment after surgery is inevitable. But I hope the outcome will give me the confidence and capacity to achieve my main aim.
Post Edited (GC4249) : 5/29/2016 11:34:59 PM (GMT-6)