My name is Chris: I am a 52 year old male, diagnosed with UC at age 29. I am in financial industry, live 20 miles south of Boston, married 26 years with 3 children, ages 17, 15 and 11. 5′ 9″, 180 lbs.
Some more about me:
My kids take up the bulk of my time outside of work. When they are not playing sports, we spend a lot of family time together. I coached lacrosse for 10 years, played in an over 40 league for 5 years and now run our town program. Other interested include skiing, boating, sufing and I am a closet motocross fan, after racing in my youth.. I threaten my wife I will buy a dirt bike soon. These outdoor sports are usually enjoyed with my family. With all this, I love most spending time with my wife and I do love to read, when I have some time, which you can see is rare! I also love progressive rock and most quality music from the 70s…
My current “state” is bleeding and light colored liquid, expelled throughout the day and night at intervals of every two hours, on average. When I make a movement, it is a 1-3 hour ordeal. My entire body constricts to force the solid waste out of my body, leaving me torn to shreads, exhausted and mentally drained. Cramps come on very quickly, which indicate I need to get going to the closest bathroom. After the worst bouts, it seems as if my entire lower digestive tract is hot and swollen. Lastly, about 8 weeks ago I have experienced migranes. Mostly the visual stuff, but they seem to come on and I would get them for a few days, then they went away again. I am getting them again now. Also, I was beginning to get pain in my ankles and hips.
Remicade: Short Term Fix or Lifetime Crutch
I came down with my current flair about one year ago. Who knows why it came. This is my 4th, maybe 5th flair-up in the 20 years of having the disease and it has been the worst. Stress? Well, my job did fall apart a couple of years ago and that may have done it. Diet? Well, I was not an SCD type, but I did eat whole foods primarily (not the grocery chain.) I drank beer/ wine on occasion, don’t smoke, don’t do drugs… a pretty average guy… But I have been trying to earn a living while dealing with this and I am at my whits end.
My dilemma is a few weeks ago my doctor stated I was becoming “Prednizone Dependent.” I shiver at the thought of the drug, so this was a shocker. I should note that around the 2012 Thanksgiving, I was at 15 Mg.s and improving. My doctor said to begin to taper in early January but symptoms quickly escalated. Also, in the late fall I went onto the SCD plan. I was pretty good at it, drank a few glasses of wine a week, but was pretty good, even over the holidays…
In December 2012 I saw some of the moon face symptoms, so the direction from my doctor to begin tapering off the drug was a wish come true. I was terrified of Prednizone… Still am. When I first came down with UC at age 30, my doctor put me onto 60 mg.s of it? I was pretty bad, since I didn’t see a doctor for a year after seeing symptoms. But at that time, my cheeks blew up, I got acne on my face and chest and still have scars from it. I did finally go into remission and didn’t see symptoms again until I was about 35-36. These flairs were always handled without Prednizone.
So with the message from my doctor in January was that I was becoming Prednisone dependent, and he said the next step was Remicade infusions… Sounded like Chemo therapy…
Problem was I lost my job in January (after being with the firm for 18 months… yes finance can be cruel like all jobs these days) so the idea of paying $5,000 per infusion, with healthcare that cound go away if I couldn’t find work… You get the picture. This was a ball of stress and a problem I couldn’t really grasp. The mind does a great job of blocking out the gory details of life, to preserve sanity!
Thanks to iHaveUC and the internet I was able to learn a lot about Remicade. It made me a bit more accepting of the idea but also quite upset that my doctor really didn’t explain much. With no job and a sense that I wanted to so something about things, on my terms, I decided to taper off Prednisone, go back onto the SCD diet and then see how things looked.
Well, I have been off Prednisone for four days after reducing from 15 mgs in increments of 2.5 mgs to 5 mgs over the past 6 weeks.
Do I have a question? Before I go there, let me say that when I first read your story and then the newsletter, at time I cried. Because it was moving to know their wereothers like me. I wanted to hug someone. My wife is great. Being out of work and sick, can really kill a relationship, but she really doesn’t understand. So many of my questions have been answered. Wish I could hug you all for that!
My question is this:
Do I manage my symptoms with diet, etc. and stay away from the Big P and Remicade? Or do I give Remicade a go? I haven’t read any examples of UCers going on Remicade, then going off it for good. That is my fear and one my doctor didn’t discuss. Can Remicade be used to eradicate this current flair, or it required to be a long term treatment?
Up to two months ago, I was on 6 tabs of Asacol HD, alternated between Canasa and Hydrocortizone enemas in a suspension of liquid and 15 mgs of Prednizone. I started SCD last fall, with results that went away with reduced Prednizone and I also started VSL#3 probiotic, which I really don’t see helping much.
written by CA
submitted in the colitis venting area