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Well, I have had Crohn's disease for about
16 years now. I think I was fifteen when I first went to the doctor and I was scared out of my mind... I had noticed a hemorrhoid type protrusion in my anal area, and had kept it to myself for a few months, reading up on medical encyclopedias in my room at night...trying to self diagnose the problem. I was surrounded by friends and family, but no one had any idea what was going on with me; it was a very lonely period in my life.
Fortunately, I got up the guts to tell my mom about
the problem one day. My family was lucky enough to have good health insurance through Kaiser Permanente. The doctor I first saw at Kaiser's urgent care, suspected Crohn's disease right away, and within a short period of time, I was on some meds, and things started to get better quickly.
Well, the next fifteen years were a long winding road of illness, and recovery, illness and recovery, medications, doctors visits, tests of all kinds, falling off the "treatment" wagon, and letting myself get sick again....back to the doctor, more illness, more illness, illness, surgery, illness, surgery....and now......total remission and good health!
I went to see Dr. Targan, my regular GI doctor at Cedars-Sinai in Los Angeles last week. The end of the appt, was surreal. Let me give you some background first before I say why. I have been seeing Dr. Targan for about
8 or 10 years. At age 21 or so, the GI doctor in Valencia, near my house, told me he had exhausted all his options, and he needed me to see the best of the best in the field. With a little bit of arguing with the medical group (no longer Kaiser), he got me a one time out of network referral with Dr. Targan. After my first appointment, I changed medical groups, picking the group that Dr. Targan was a part of. This meant that I now had to drive quite a while to get to the doctor, even just when I had a cold. But, it gave me access to the Inflammatory Bowel Disease center at Cedars. After years of trying different medicinal approaches, including one of the earliest trials for Remicade, and a few other trials (I have tried just about
all the standard crohn's medications out there, and a few creative approaches as well), I decided to have surgery, in order to divert the flow of waste into an ileostomy, giving my colon and rectal area time to heal without having food down there...The surgery seemed to work, but the fistulas I had for years did not heal. Eventually, I had more and more complications due to the fistulas. In November of 2008, I had my entire colon, rectum, and anus removed, making my ileostomy permanent. This was a very major operation. Now, four months later, Dr Targan has instructed me to call him if I have any problems or symptoms, however, I did not need to schedule a follow up at this time. We were both happy the day had finally arrived. He confessed to me he had wondered if such a time would ever come. I couldn't thank him enough. All the staff of the clinic were smiling...I walked out of there on a cloud.
Anyway, I just wanted to spread some happy news, since I know a lot of the time that is all we need. I also wanted to thank you all for offering support, and listening to me since I found this site a few years ago. Now that I am better, I do sometimes wish I had the courage to have the surgery sooner. It was a tough choice though, since I was afraid of making such a permanent change that I would never be able to reverse. On the other hand, there was a part of me who knew, deep down inside, surgery would likely be the only solution. All the feedback and sharing I enjoyed on this site, helped making that decision easier, and for that I owe all of you my life.
Nat aka gladbag