Meet Mark D:
I’m 55, with UC since 1975. Happily married with kids. Successful career as an architect until the downturn wiped out the industry. Now I am an entrepreneur (or unemployed depending on your perspective.) I love good food, playing music, drawing, gardening, getting lots of exercise, running, swimming, biking, squash, golf and new this year- Tai Chi!
I am currently either about to have another flare up or in the murky realm of maintenance. My doctor thinks I may be in a state of mild flare for half of the year, with moderate flare needing Prednisone for about 3 months and actually in full remission for the other three. Hard for me to know what is going on down there since I have trained myself to de-stress and roll with the punches for so long. Almost every colonoscopy has shown SOME activity even when my symptoms are not suggesting.
Mark’s 37 Year Colitis Story:
Hard to say how UC has CHANGED my life since it has kind of BEEN my life. Diagnosed in 1975 with UC, making this YEAR 37! In ’74 I was a US exchange student in Venezuela for the summer, had a horrible bout of gastroenteritis while there, suffered through my senior year of high school and was diagnosed after graduation. No family history of UC but somewhat similar characteristics- history of inflammatory diseases, asthma, arthritis though. From age 10 onward I had shots for severe hay fever as did my father. By age 21 I had stopped (and once on Azathoprine I don’t seem to even get poison ivy) After college my diet became more disciplined and less beer. Beer not good for UC. Nor soft drinks. That does not mean I have completely banned them but have cut way back.
My diagnosis is full colon, moderate so I feel “lucky” reading some of your heroic stories. On and off of prednisone- twice a year minimum to maybe 4x that whole time. So much of my UC life has been about how to get off of the big “P.” Never kicked it. I seem to like stress and work, have figured out how to have a VERY active life. Eventually developed habits of lots of exercise, running, swimming, biking, squash, golf etc. but periods where I fell out of habit. Smoked in college for a year, not since.
This is my first time on this site and have generally not interacted much with other UC-ers. Not sure why not. Last couple days have been amazing reading a lot of really heroic stories from great people. (Thank you Adam!)
I have developed a stable routine and consider myself to be in generally good health, but now kind of staring down the next twenty years with some fear of cancer, concerns about costs, wondering if I have really done all I can diet-wise, not wanting to make radical changes that would create even worse problems. I still eat a lot of stuff I should not, take a lot of lact-aid pills, anti-gas stuff, suffer after pot-luck dinners and junk food or spicy food I should no better than to eat. Amazed how dumb I am sometimes. But I do not like holding back.
Considering doctor suggestion of Humira or Remicade as next step.
Or have my old friend the colon taken out and put on display in a museum.
Or do another run of prednisone etc etc.
I think all of us UC-ers have very different levels of the disease, so I guess I am curious about what my potential is for doing more than I have, and after that, how can I make the best medication decisions that will keep risks low. Interested in hearing about everyone else and seeing if there is anything I can offer, mostly in terms of “this worked for me but it may not work for you”
Family’s medical costs (mostly mine) ran to US $20,000 last year. So my current challenge is balancing health and economics and trying to gather a more comprehensive picture to guide my next step. My current insurance plan- individual insurance with a $5000 deductible changed the way I see my medication. I have a 30 day supply of Entocort sitting at the Pharmacy as I write, and the price tag is like one thousand three hundred dollars, which I may pay for out of dwindling life savings. I bought a pack of cigarettes today and have a feeling that I might save that thousand bucks, also realizing I will probably be back on a run of Prednisone by the end of the year…
Where I’d like to be in 1 year:
I would like to be completely cured, in the best health of my life, with enough discipline to maintain routines and diet that I want, and without worrying that everything I do is somehow going to trigger a relapse.
First twenty years- prednisone and sulfasalzine. ups and downs. denial. family suggesting that it might be various foods.
One doctor recommended Metamucil, which often helps still.
Also during that period doctors were not sure if the whole colon was involved (it is/was). I have had active proctitis as part of UC. so when through several years of intermittent use of cortenemas that only really seemed to work about ten percent of the time. and not fun. More proctoscopies in those days and fewer colonoscopies.
Then Asacol replaced Sulfasalzine and I really felt better somehow. Sulfasalzine seemed to cloud my mind, and of course I did not miss the bright orange urine.
About five years ago? More? I added azathoprine and then Entocort to the regimen.
Then Lialda replaced Asacol. (all generics now)
So now I am on:
- Lialda 2@ 1.2g pills twice a day
- Entocort 3@ 3mg caps once a day
- Azathoprine 2@ 50mg pills once a day
- and folic acid and multivitmins
I have to say it is by far the best maintenance regimen ever, and my bad flare-ups are much further apart, and I sense my mild flares are basically controlled enough.