Well, I know this ought to be a song and that my output on this site has slowed down recently, especially in comparison to what my original goals, objectives, plans, schemes and dreams laid out for me in my mind to get accomplished. And, for a while, I debated about whether to make a post on this topic or not since it is not related to my music or to disabilities causes and I also didn’t want to appear like I was whining.
But upon further reflection I wondered is whining really such a bad thing….I think everybody wants to whine sometimes, especially when you are in pain, like if somebody where standing on your foot with high heels….”Wooouuuulllddd yooouuu PPLLEEAASSEE get OFFFFF my FOOT!” So, in that sense some temporary whining actually serves a useful purpose: It gets them off your foot, stops the pain and teaches them about body space awareness, all in one breath….or maybe 5 or 6 if you have asthma.
Anyway, I thought I would share some of my health journey with you in case there is someone out there that reads this that can benefit from it.
For my entire life, I have had a “touchy” stomach. There always seemed to be something that would cause me stomach pains and associated trouble. But beginning last summer things got much worse and I started having severe abdominal pain, urgency, diarrhea and most concerning of all – bleeding, a lot of bleeding — Enough to make me anemic, not to mention to initially freak me out at the sight of it. My first reaction was to think I was dying and that I must have colon cancer. Unfortunately, it took multiple doctors and many tests to get an accurate diagnosis of what in the hell was going on inside my body.
My diagnoses have oscillated between ulcerative colitis, Crohn’s disease and Celiac disease. As of today, they have pretty much ruled out Crohn’s disease, thank God, and pegged me as ulcerative colitis and celiac disease. I am still in the middle of this struggle and as of today I am not “cured” or in remission, so what I am writing is a bit of a journal documenting my travels and travails. The western medicine doctors I have seen have mainly wanted to treat me with either surgery (remove part or all of my colon) and/or powerful drugs that have dangerous side effects. I have tried some acupuncture, and it was actually giving me relief, but my insurance does not cover it and at $100 per visit, I quickly ran out of money.
I September I began reading a book called, “Breaking the Vicious Cycle” by Elaine Gottschall which describes the specific carbohydrate diet (SCD) that she developed initially to treat her daughter who had ulcerative colitis. I began following the SCD and I was starting to see some real improvements in my symptoms.
But in the middle of this, my gastroenterologist referred me to see an allergist for food allergy testing, and lo and behold I found myself going down yet another path. Since this did not involve any long term risky drugs or surgery, I decided that I should at least see what the allergist could do for me. The allergy testing and consult with the doctor were interesting and promising. Since this has been going on for so long and I have been given so many different opinions, I am not getting my hopes too high. The short story is that my allergy testing showed me to be allergic to just about everything on earth and consequently, the allergist theorizes that my colitis is allergy induced inflammation. Therefore, the treatment he recommends is that I undergo a round of immunotherapy to desensitize me to the allergens. He thinks if his theory is correct that he can “cure” me. BTW, like any experiment where we need to control the variables, this meant that I had to discontinue the SCD so we could have reliable results on the effects of this allergy stuff. The down side of course is that after quitting the SCD diet, my symptoms started intensifying again. Uggh.
The immunotherapy will require me to receive three injections a week for the next two months, so I am going to be at the doctor a lot. I hope they have free Wi-Fi!
Like I said, I am getting kind of jaded and I will believe it when I see the results. I know that I am going to do every alternative thing I can before I submit to surgery or hard core drugs. In case it helps you reading this, here are a few colitis/Crohn’s resources that I have looked at or intend to check out:
Non-drug, Non-surgery Options:
Specific Carbohydrate Diet http://www.breakingtheviciouscycle.info/index.htm
Elaine Gottschall’s Specific Carbohydrate Diet website http://www.scdiet.org
Low dose immunotherapy http://www.food-allergy.org/epd.html
Fecal transplants (Human Probiotic Infusions):
http://www.cdd.com.au/html/expertise/diseaseinfo/clostridiumdifficle%20.html
http://www.jinipatelthompson.com/phpBB3/topic309.html
Traditional medical treatment:
Crohn’s/Colitis Foundation http://www.ccfa.org/
The Them Old Colitis Blues by Chris Hartzog, unless otherwise expressly stated, is licensed under a Creative Commons Attribution-NonCommercial 3.0 United States License.
