Hello all, I'm new to this forum although I was diagnosed in 2002 with UC that my GI says mimics Crohn's.....if that makes sense. Meaning that at my last colonoscopy I had patches of clear uninflammed areas in my colon, but the rest of the entire colon was inflamed. At diagnosis I was hospitalized - had almost bled to death because my PCP kept looking for parasites and I had to beg to go to the GI earlier than scheduled. Of course I was put on the requisite HUGE doses of prednisone by IV, and antibx, etc. I knew that prednisone could be a dangerous medicine, having had a mother with systemic lupus who was on long term prednisone for years. Amazing that she lived to be 71.
As for myself, I begged to be weaned off the prednisone asap - the side effects were horrific and I am convinced that there are people out there who commit suicide when on this medication. It is a quick healer, and for that I'm grateful. But I had no idea of the terrible long term side effects until a few years after being diagnosed. Amazingly I did very well until a relapse in 2005. When I look back on that period of remission I realize that I was getting quite a bit of vitamin d because I used a tanning bed for psoraisis control. It's really the only thing I can think of to attribute to the long remission. I later moved/lived in the US Virgin Islands - and one would think that I would have been fabulously healthy from the sun. The problem was that it was so hot ( so therefore I stayed in the shade and inside) and so sunny that sunscreen was necessary in order to not burn. Ergo, less vitamin D.
Since 2008, back on the mainland, I have suffered with constant joint/muscle pain, extreme fatigue, high blood pressure, high uric acid, protein in my kidneys...and the list goes on. I used to walk and jog 4-5 miles a day - even 6 weeks after my hospitalization in 2002. My last relapse was last summer - and I dragged on until November to go to the GI - trying to treat it myself with alternative medicines. (Probiotics WRECKED me.) I knew that once I went to the GI I would be put on pred. And of course that's what happened. Except that I refused to take the 40mg dose for more than a month and weaned myself to 10 and then 5 mg before a colonoscopy 1/3/2012. Gastro was not happy with me - and agreed to try budesonide. After a month I stopped - I feel no better with it than with prednisone, and in fact I think I feel worse.
Western medicine is not helping me because the doctors simply will NOT connect the dots. This past Tuesday I had my first appt with a wellness center who practice holistic combined with western medicine theory. They are testing me for adrenal gland fatigue/exhaustion, vit b12 deficiency, vitamin D deficiency, thyroid....and on and on. ONE of the things I was told is that I should have been taking DHEA with my meds - I had no idea. Also found out that if I take sulfazine I should take folic acid. Never knew that. I am starting on low dose naltrexone, and for any of you who haven't read about it, please do. Since I'm new to the forum this medication has probably been discussed at length, but I am putting it out there again because I'm hopeful that it will help me to heal. The studies from Penn State are very promising. I haven't gotten my blood test results back yet, but plan to add a D3 supplement as soon as it's delivered. I am amazed at what I've read on D3 deficiency.
I am concerned about "bamboo spine" (ankylosing spondylitis) but have decided against seeing a rheum. because the last one I saw diagnosed me with Wegener's disease, and put me on 3 YEARS worth of Septra DS. This was almost 10 years prior to my dx with UC/Crohn's. Hmmmmm....wonder if there was a connection? But I will have my new practitioner do a bone density scan, etc and find out what condition my bones are in. It's just very very SAD to me that, whatever the disease, we patients are more or less left to fend for ourselves. And if we come up with "out of the box" ideas and alternatives then our GIs and practitioners think we're crazy. Be good and shut up is basically what is expected. I guess I'm just a rebel not willing to take the "norm" and instead look for better ways to have a better quality of life without decreasing the years I'm on this earth. Thanks for hearing me out - I think I needed to vent. 