Where to start? I have never considered myself to be a writer. Certainly never thought I would blog, but here I am, a mid-twenties nursing student in Ontario, Canada, on the verge of starting helminthic treatment or worm therapy.
I was diagnosed with Crohn's Disease in 2003. I have been lucky so far in that I have not had any severe flares. I was very familiar with the disease and its symptoms, as my mother also has this wonderful disease and this helped with a prompt diagnosis. Since diagnosis, I have had moderate Crohn’s in my ileum which went into remission with treatment, and a couple years later I developed Crohn’s colitis. After about a year and a half of unsucessful treatments for the colitis my GI specialist put me on Remicade, then after a year added Imuran. I have been in “remission” for the past 2 years thanks to these very scary drugs. I am on a constant roller coaster. These drugs don’t cure; they’re like a temporary band aid. After my Remicade infusion, I tend to feel progressively better and then, as it wears off head right back to feeling crappy again. My dose is always being changed back and forth between 6-8 weeks and it feels like there are only small windows where I actually feel in remission. Imuran on the other hand, I don’t even notice a difference. I’ve been on it for over a year and I do not feel physically better at all. It has done nothing to reduce my Remicade infusions but my specialist recommends staying on it because with the Remicade alone my inflammation indicators are too high. In the last six months, arthritis has worsened, acne has worsened and I’m being investigated for an abscess/fistula.
My mother has a much more severe case of Crohn’s disease than myself. She has had 5 bowel resections, has short-gut syndrome because she only has five feet of small bowel left and she has never been prescribed a single medication that worked for her. She was told after her last resection she might get 4 years before she will need further intervention, which if delivered would require a permanent feeding tube. We were all very scared, no doubt.
Let me give a bit of background information here: My family and I live in Canada, however when my mother was in her twenties, she moved to Acapulco, Mexico. There she lived for about 8 years in complete remission, eating and drinking whatever she liked, out dancing and working all day with no symptoms or traces whatsoever of Mr. Crohn’s. Prior to moving down to Acapulco she had one bowel resection and thought that while she was in Mexico her bowel resection had simply cured her. When I was five years old, we moved back to Canada permanently and my family and I were tested for parasite infections. We were all infected and had been for years. We were treated and the parasites killed. Within two years my mother had to have another bowel resection and her Crohn’s was back full force. For years growing up my mother swore she was healthy in Mexico because of the parasites, though we really didn’t have any idea why and she was too scared to go around drinking unfiltered water... etc from Mexico in order to re-infect herself.
So to continue, last year my poor mother began to get progressively worse with her CD activity. We were all terrified that she would have to have another surgery and end up with a feeding tube. I was terrified alone for her mental health. I had just joined a support group on facebook: Let’s Talk Crohn’s and Other GI Issues. (Excellent support group, please check it out if you’re interested). On the wall someone had posted a link about helminthic therapy. I opened it up to read it and was struck by the research. This was what my mom had been talking about for years. I forwarded it to her and within a few months she started the treatment through a clinic in Mexico. She is an excellent responder. She was on the verge of having emergency surgery and went from being able to eat nothing but ensure for years, to eating whatever she wanted. It’s still two steps forward, one step back, but as time goes on she’s getting closer and closer to full remission. She has certainly had better results with this treatment than any other. It is because of her grand success that I am embarking on this journey.
I have been waiting, for what I feel is a long time to start this treatment. I finally have the money saved, my blood results are sufficiently in range and I spoke just yesterday with Dr Llamas in Mexico to establish my dose, 25 hookworms!! From what I understand, it takes about a year and a half to get into remission, as long as I keep my worms alive. They can cause inflammation during the first 3 months or so and I’ve been told I may need to start Entecorte or prednisone if I don’t tolerate the worms well. I can then expect what they call rachetting, taking two steps forward and one step back as my immune system attempts to regulate and equilibrate with my new wormy friends. I’m nervous about it too. There is no guarantee this will work for me. I have school work to get done and it can be so difficult to complete school work and study when you’re not feeling well. But I have to start somewhere. I’m hoping by the time I finish my degree in December 2012, I will be in remission and can start working full time (without flaring). For now, I just have to wait until my worms are ready. No idea yet how long that will be, though I’m assured soon.
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