Home Forums Personal History and Progress Threads Progress Thread on my AS

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    Background Information

    In February of 2007, as a 21 year old college senior, I was diagnosed with Ulcerative Colitis after noticing some blood in my stools. I went down the traditional Western medicine path of: drugs drugs drugs. I could never fully ween myself off prednisone, and I quickly progressed through available treatments. In July of 2008 I spent a week in the hospital because I was so short on nutrition and hydration.

    At this time, I found Jordan Rubin’s book, “The Maker’s Diet,” and made some attempts to address my condition with diet and lifestyle changes. I pumped up probiotic usage, cut out gluten and kept dairy. I felt a little better. I could tell this diet change was beneficial. At that time, my support group (parents, friends, etc…) didn’t believe that a diet change could affect change. “Listen to your doctor,” they said. And the gastroenterologist said diet didn’t matter. I never fully committed to a dietary change because too many people were whispering in my ear, “It doesn’t matter,” and I didn’t have the courage of my convictions at that time to act otherwise.

    I made the difficult decision to have my entire colon removed in November of 2008. I just wasn’t getting better, and my Western doctors said that a total colon removal was totally curative — remove the diseased organ, remove the disease. Ah. I elected to have a J-Pouch Procedure, which involved two surgeries. The first is the total colon removal, and the creation of a temporary ileostomy.

    Having an ileostomy was life-changing experience for me. What did I learn? That we as humans can almost adapt to anything. People would ask, “HOW can you have that? How HARD is it? How can you LIVE like that?” Well, I actually felt healthier than I had in more than a year. I felt vibrant and energetic again. People always make comments indicating that, “they,” could never do it, or live with it. Gosh, I’m not special. I don’t have a magic pain tolerance. The way I always explain it is this — there is not alterative except to accept your position, and work to make it better. You can learn to live with anything, because in almost all instances, LIFE is better than the other option. So you stick it out and adapt.

    I had a great three months from February 2009-May 2009. I had my ileostomy, “taken down,” which means that I no longer have an external bag. Life was good. For literally a month. Then I started having what I interpreted as severe sciatic pain. Saw orthopedic surgeon, who cleared me. Started PT, and made improvements but never back to 100% mobility.

    Through the next few years I tried everything I could think of: chiropractors, NUCCA chiropractors, yoga, hot yoga, meditation, acupuncture, traction, massage therapy, pain management centers and a dairy and gluten free diet. No doctor could connect the dots. Which of course looking back on my history now, I wonder HOW no medical professional even mentioned the possibility of some rheumatic disease. If I stayed active, kept with a gluten and dairy free diet and kept up with some form of PT or massage I could live my life without much restriction. Sure, I hate to cut out sports because I could no longer sprint or execute an agile movements without some niggling pains, but other than that I could live. I could tie shoes, shower, walk, laugh, socialize, sleep all almost the same as before I was sick.

    In July of 2012 I was seeing a PT who FINALLY suggested that I visit a rheumatologist. I have vivid memories of her suggesting, “Ankylosing Spondylitis.” The first time I heard the word I had NO idea what it meant.

    After finally visiting with a rheumatologist, I was diagnosed with AS in October of 2012. HLA B 27 positive, some bi-lateral inflammation of my SI joints and my history lead my doctor to this. He suggested prednisone and blah blah blah. I didn’t even pay attention, I had been down this road and I knew that the Western path was going to dump drugs into me long enough to, “keep me going,” until finally some grand event happened when I could no longer function. But what could they cut out? My spine? I needed another way.

    The next few months I chased down any information I could find. In December of 2012 I executed a month of the GAPS diet and protocol. For those not familiar, it’s essentially a gut-healing protocol. Focus is on a lot of fermented foods, bone broth and probiotic usage. This helped — a LOT. I had SED rates run before and after a month trial — it went down from 80-something before the diet to 40-something after the trial. I felt invigorated again. I went back to the gym. I smiled more often. I could tie my shoes again.

    As human nature will often dictate — I got comfortable. A big New Year’s Eve meal lead me down a path of bad dietary decisions for a month or so. I loosened my control of the GAPS protocol. I started having gluten every now and again. Introduced dairy.

    In February of 2013 I stumbled across information on Paul Jaminet’s website linked to the Roadback. I read the book. I read all the forum information. I was re-invigorated about bettering my situation.

    I initially worked with a Doctor out of Chicago. He was receptive and forward thinking, but his personality and communication style were so terrible I knew I couldn’t work with him. He was all over the place. He actually wasn’t even at this office for an appointent we had scheduled.

    I decided to schedule time to travel to see Dr. S in Iowa. It was to happen in about March of 2013. I requested that Dr. S start me on antibiotics even before I came to see him. He agreed; I started on 200mg minocycline every day.

    And that started the most challenging period of my life, to date. I literally could barely move. I couldn’t shift in bed. Couldn’t walk. Couldn’t sit. Couldn’t socialize. I felt that pain was a 10/10 constantly, and pain-killers could barely touch what I had going on. I started crying a lot. In the middle of the night I would wake up — we’ve all been there, I think. I awoke into a sea of pain in the middle of the night. My emotions were overwhelming. This was very bad.

    Dr. S chalked it all up to herxing. I went to IA and did the week of clindi — didn’t notice a difference either way. Fast-forward to about April/May of 2013 and now I had essentially been in constant, crippling pain for 3 months straight. I couldn’t drive. Could barely think. Depression was bad.

    Dragonslayer suggested a water fast. It was life-saving. I executed a 7 day, water-only fast sometime in that period. The transformation was amazing and fast. At the start of the fast, I could barely move without pain. At the end, I could function again. Shower. Kind-of walk/limp around. Wow. What magic!

    After Dr. S still encouraged me to continue on the 200mg daily, without any real advice on diet, lifestyle or managing detox I knew that he wasn’t the practitioner for me. Sure, he’s been doing this for 40 years. But I needed someone who was more forward-thinking. More able to respond to my complex health history. Someone able to pivot.

    I saw Dr. F in Riverside in late June of 2013. We cut WAY back on the mino — from 200mg every day, to 100mg MWF. Then we added azithromycin on the other days. We also added a lot of supplementation support.

    Since June of 2013, the macro-trend here has been upward. More mobility. Better brain function. Some happy thoughts! But each week individually has been a roller-coaster. Some days I wake up and feel great and go out and walk a mile. Sure, I’m mostly limping around and it’s slow — but I’m walking. Other days, I still wake up and it hurts to move.

    But overall, I cry less. Maybe not even at all anymore. The other day, I had a realization, “Gosh, you’re lucid, Frank. And engaging. And you’re thinking critically.” I have moments where I feel overwhelmingly positive, happy and confident. I have less pain. I created so much muscle disfunction during the months of not being able to move that I have much to address with my PT’s. I still hurt, almost all the time. But each week it seems to become more manageable. My SED rate only decreased from about 46 in June, to 44 last week. I wasn’t surprised, as I still feel “inflammed,” most of the time.

    I feel uncertainty now. I’m always second-guessing. Is Candida preventing me from getting better? Is my gut healed enough to get better? Do I have lyme co-infections that I should be addressing as well.

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