My Background:
I have a cluster of auto immune diseases as well as ulcerative colitis. I have rheumatoid arthritis and Hashimoto’s thyroiditis. The UC remains severe and uncontrolled and was diagnosed 4 years ago and fails to respond to any and all treatments (just out of hospital a week ago) and I am taking part in a drug trial out of desperation, but it looks like surgery may be my only option now if I want any quality of life.
My Story:
I was diagnosed with Hashimoto’s (auto immune disease of the thyroid causing it to fail to produce the necessary hormones to regulate many body functions including metabolism, temperature, hair and skin condition and severe fatigue to the point of not being able to function. I was treated and got on with my life. Then 13 years later I got the first symptoms of ulcerative colitis. My father had UC when I was a child and then went into remission, so I was fairly certain I knew what I had. The UC progressed very quickly and I had to give up my job as an attorney immediately as the stress involved in my job and the 80 hour weeks which I loved were not compatible with the 50 to 60 times a day I was visiting the bathroom or the 3 hour commute.
Initially I was told I would be back at work in a few weeks, but 4 years later after trying every medication available and responding to none of them, averaging 4 hospitalizations a year and fatigue that sees me sleeping about 15 hours a day on average and never able to get my prednisone below about 20 mg a day without causing a flare things are seeming pretty hopeless.
Then just to add insult to injury when I was first diagnosed I was told I had to stop taking the anti inflammatories I was taking for a back injury I sustained from a horse riding accident as a teenager. At first that wasn’t a problem because the high doses of prednisone kept the inflammation under control, but as the prednisone was reduced the back pain became worse and then other joints, hands, knees, ankles, wrists, shoulders all began to become unbearably painful. Further investigation revealed that I had for some time had rheumatoid arthritis and now without the anti inflammatory drugs this too was flaring up with the reduction of pred. So now I need to be treated by a rheumatologist as well to manage the pain and mobility issues of this auto immune disease.
I noted above that I was having up to 70 bowel motions a day and that was really at it’s worst, 30 to 40 was the norm and I settled into that pattern for the first couple of years. Now I’m down to about 5 times a day since my hospital admission last week and the bleeding seems to have stopped but the pain and bloating is still pretty bad, but that is pretty disappointing considering how much medication I’m on right now, I’ll detail it below.
I haven’t done much with diet except to try the low reside, low fiber diet recommended by the doctors to date. I did go low carbohydrate late last year for weight loss purposes because I have gained so much weight since I have been diagnosed because I can’t exercise because of my arthritis and UC and I’m just to exhausted to do anything. Also the hospital won’t support my diet so when I’m in hospital I have to eat what they provide so I have to start over again. So the longest stint I get on any diet is about 12 weeks and then I have to start over again and I feel a bit defeated.
Now looking back over this I just feel like a bit of a whinger but it’s nice to be able to vent to people who can relate.
As I’ve just been hospitalized I’m not sure if I’m going to be kicked off the drug trial, because the treatment I received may have breached the protocol of the trial, so I won’t know until I attend the next trial session with the doctors and they review the treatment I received. So for now I’m in limbo not sure what is happening with my treatment.
My Medications:
For the Ulcerative Colitis I take: sulphursalazine, 50 mg pred daily, 1200 mg calcium (w/ vitamin D), Ferrograd C, Vedoluzimab (trial drug by intravenous infusion monthly)
For the Hashimoto’s I take: 150 mg of thyroxine daily
For the Rheumatoid arthritis I take: Methotrexate subcutaneous injections 1 weekly and Norspan 20 mg transdermal patch weekly for pain management, Temgesic for break through pain and megafol
And generally lots of paracetamol!
