For starters.....

For starters.....what a great way to start my blog which really is a place for me to share my feelings and share my story as its unfolding.  

For starters....I was diagnosed in January 2002 with Crohn's Disease.  I had gone to my PCP for my regular annual physical and mentioned that I was having random abdominal pains.  They weren't serious or constant, but I knew it wasn't normal. So I got signed up for a colonoscopy. What a joy !!!! I entered the colonoscopy with a lot of trepidation and rightly so because they did not sedate me for the procedure. I was awake, felt everything and unfortunately, saw everything.  I spent some time in the recovery room and during that time, my GI came into tell me that he was pretty sure that I had Crohn's Disease.  For some reason, I felt relief at that time. Relief that it was diagnosed and relief that there was a name for it.  Of course at that time, I also didn't think it would ever get worse than it was with the random abdominal pains.  It became something that sort of defined me but at the same time, wasn't real in my head and was only something I related to by reading other people’s stories.

So for the next few years, I played a game of darts with drugs. Some worked, some didn't but there was no bullseye be all end all. Some made me sick as a dog, some didn't.  After a few years of this, I decided that I wanted a more specialized doctor who knew more about the disease and wasn't just a general practitioner of GI medicine. I found the Crohns and Colitis center at MGH.  What a godsend! I felt more taken care of, more paid attention to and just felt overall in better shape about my care. It also helped that my doctor was Dr. Korzenik. He is the best doctor I have ever encountered in my medical career. Always willing to chat away during the appointments with no stressful times of him looking at his watch and feeling rushed.  He took the time to get to know me as a person and what I did and didn't want as it related to my care, and he listened.  Around this time, I developed a fistula. For those of you who are out there with Crohns, you know what I mean. It's a connection between two otherwise unrelated organs.  So, Dr. Korzenik knew that by getting the fistula, the medication I was on was not working and that I was technically in a flare. Again, I was lucky. The only symptoms I had was the fistula, and random abdominal pains. I didn't have any of the other symptoms that you can get.  Dr. Korzenik’s recommendation was Remicade. Remicade is an IV drug that takes about 2- 3 hours to be infused and is quite a process.  But, it healed the fistula so I didn’t have to have surgery and gave me 5 years of remission while only going once every 7 weeks ! And then things changed…..