This month marked the 20 year anniversary of my UC diagnosis at age 18. Last year, when I turned 37, I pondered the fact that I have now lived more years with UC than without.
In reading many posts regarding medication, feelings, depression, etc., I thought maybe a long view post might provide some comfort.
Medications and Doctors:
I began with mis-diagnosis, then a new GI, and then a cort enema prescription. That lasted a few years (through part of college - there's some fun hiding those in your dorm room so your roommate doesn't know). Prednisone and a new GI came next. This doctor had me on prednisone for my junior and senior year at college. Symptoms were better on the pred, but the side affects got out of hand after some time.
I moved to Boston and got a new GI and went on Asacol. This worked pretty well for a few years. I'd have flares which would be handled with combination Asacol/Prednisone tapers, then back to Asacol only. On average, the flares would last a month or two, the remissions generally 4-6 months. I got married and went to Hawaii on honeymoon during a remission period which was wonderful.
Saw another doctor who preached Asacol only in combination with vitamins (seaweed supplements), diet restrictions, etc. This did nothing for me, maybe the guy was a quack - so back to the Asacol and pred for flareups.
Moved again, new GI. It had been years and the Asacol/pred thing was getting more like 2 months bad, 2 months good. So we moved to mercaptapurine (6-MP). This seemed to be a magic bullet which worked for about 5-7 years - I'd be symptom free for 2 years or so, then a flare for 2 months. I thought this was pretty darned good.
After some time, the 6-MP was starting to turn in some funny lab liver results, so that was the end of that. Having run the gamut from cort enema to steroid to immunosuppressant, all that was left was remicade. A bit more un-nerving to say the least. But, at that time I was beyond 17 years of symptoms and that changes your perspective a little (read - desperate).
I've been on remicade for almost 3 years and have been completely and entirely symptom free - zero flares. The big mystery - will this last long term? I have no side affects to date. Will the remicade's effectiveness fade? Time will tell.
Psyche -
I think over the long term, I went though the initial denial stuff where I thought "I'll get on some meds and this will go away" to an overaching depression. Will this ever go away? Can I lead a normal life? I do know the location of every single bathroom near every single exit on every single highway in all of New England. I had a horrific experience on a streetcar in San Francisco once....(never see those people again though). Traffic jams frighten me beyond words. When my daughter was born, I almost missed it as I had to hit the bathroom in the LDR room three times while my wife was >7cm. It has definately impacted the physical relationship between me and my wife whenever I was in/out of remission.
That depression was long, too. But now....looking back....how has it *really* impacted my life??
I have 3 kids, live in a house in the countryside, have a great job (I'm a geologist, so that's not exactly the type of work that's near a bathroom all the time), and got a great education. I spend most weekends between soccer and little league. I've been on trips to more than 20 states in the south and the west, Disney, Grand Canyon, San Diego, Carribbean. I have a pilot's license and fly small planes around over Cape Cod. I bought a waterski type boat off Craigslist and take the kids tubing.
Granted life is good in long term remicade-induced remission, but most of those "good life" things above happened before that.
I guess after all that typing, I wanted to stick my life story out there in the hopes that folks with recent (or relatively recent) diagnoses can find some comfort. There are low and bad times. But don't be afraid to change GI doctors and don't be afraid to tackle it head on and whatever you do, don't give up on the future and on the dreams you have.