My story, I’m guessing, is similar to many, in that one day I’m fine, feel fantastic, and the next day I’m ill, not sure why, confused and scared. I’m also guessing the average healthy person doesn’t think much about the mass between the neck and hips, blissfully unaware of the body, and completely comforted by this detachment. This unawareness can be bliss – what we don’t know won’t hurt us, won’t keep us up at night in a state of fear and anticipation and certainly does not make us search the internet until 3:00 am like an insane person…night after night after night. In a blink of an eye health can change. This is what happened to me. For some, health changes can be a physically and psychologically painful ordeal and for others health changes can be rather benign. Whatever the process, whatever your story, one thing is for sure, your life is forever changed, your body is forever changed, you are forever changed whether you embrace this change or not. I decided to embrace the change, become BFF’s with my body and keep in constant communication with the rhythms of my health and energy.
Let’s flash back to 2003. I was a spunky 26-year-old who loved to go camping, snowboard with my husband, eat copious amounts of cheese, go dancing with my girlfriends, and with the exception of lactose intolerance and seasonal allergies I was the picture of health. I was fresh out of graduate school, ahhhhhh, and I felt like most productive young adults feel at that age – completely invincible. What’s not to be happy about…what’s not to be hopeful about? I had a wonderful, loving husband, landed my first job as psychotherapist, was in the process of buying our first home, and in great health. Little did I know that my good health would make a permanent and dramatic change, that I would go misdiagnosed for months with one aliment and then be diagnosed with an auto-immune disease months after that!
It’s perhaps easier to break down the sequence of events in a list, as it was all very complicated. So, here goes…
1. December 2003: Woke one morning with a tight, deep ache in my chest. Not a terrible pain, manageable. No change to daily activities, including work.
2. December 2003: First visit to doctor. Left with diagnosis of asthma (never, ever had asthma in my life) prescribed an inhaler. Keep working, daily activities continued.
3. January 2004: Pain continued; getting much worse, inhaler seems to exacerbate symptoms, kept using it per doctor’s advice. Another visit to doctor. Left with diagnosis of pulled muscle in lung. Prescribed pain killers. Daily activities are slowing, but kept working.
4. January 2004: Pain continues; can’t breathe, can’t sleep, can’t talk. Visit to doctor. Diagnosis of pneumonia. Prescribed more pain killers, antibiotics. Stop working.
5. February 2004: Searching on internet, found a diagnosis that fit my symptoms: Pleurisy. Went back to doctor in extreme pain. Very ill. Showed doctor my suspected diagnosis. Doctor shrugged shoulders, “yes possibly.” More antibiotics, more pain killers.
6. February 2004: Pain in lining of lung and lining of heart unbearable. Lungs fill with fluid, bottom lungs collapse, extremely anemic, lining of lungs and heart completely inflamed, heart murmur. Did not leave the doctor this time. Admitted to hospital with a diagnosis of Endocarditis (I did not have endocarditis).
7. February 2004: Endocarditis ruled out day 2. Lungs still extremely painful, extreme fever. Intravenous antibiotics started day 3 and lasted until day 7. Would not release me from hospital until fever went down. Day 5 prescribed more pain killers, and anti-inflammatory drugs, finally some reprieve with anti-inflammatory drugs. Released from hospital. Given a ton of antibiotics, pain killers. Started healing collapsed lungs. Anti inflammatories were making it possible to breath and sleep (why didn’t I get these back in December??).
8. While in hospital I noticed my digestion changed. Something felt funny, I felt different, but didn’t know what was going on. Text-book Crohn’s symptoms started up just a few days after released from hospital. Focus was on healing my lungs at this point, could not fathom going back to doctor for a new set of symptoms…hoped it was nothing.
9. March 2004: Immune system slowly healing, chronic fever finally gone. Still weak. Lungs still ache. Back to work later in March.
10. March 2004: Crohn’s symptoms continued, passing blood, unbearable intestinal pain during the evenings and off and on during the day. This would last a long 3 months until I finally mustered up enough psychological strength to go back to the doctor with this new set of symptoms.
11. June 2004: First time I heard the name and possible diagnosis of Crohn’s Disease? Made appointment with GI specialist.
12. July 2004: Finally in to see the specialist. Had a sigmoidoscopy. Definitely not IBS, definitely Inflammatory Bowel Disease (IBD). Prescribed a drug for Inflammatory Bowel Disease (9 pills a day). My symptoms ceased within hours. A colonoscopy was ordered for the definitive diagnosis: Crohns or Ulcerative Colitis? Had to wait until October 2004 for this procedure.
13. July 2004: Took the 9 pills per day for about 6 weeks. Symptoms dramatically decreased. During this time I spent most my waking hours researching Inflammatory Bowel Disease. I also started researching anything and everything to do with digestive health, function of digestion, the colon, small intestine, and stomach, leaky gut, enzymes, parasites, candida, intestinal flora, food allergies, food intolerances, etc…there is so much information on the internet. When I started having nightmares about parasites taking over humankind I knew it was time to tone it down a bit and rein in my research and focus.
It was during this time I made the very real and life saving connection between food and health. The food I was eating was poisoning my body! Just about everything I was ingesting was not conducive to healing and certainly not good choices for Inflammatory Bowel Disease. I immediately gave up dairy, followed by gluten and then sugar. I have to say that just days after I stopped eating dairy my body changed in a way I didn’t think was possible.
14. September 2004: After much research and support from family and my loving husband I started a 30 day candida cleanse – oh and I went hardcore! First off, I stopped taking the 9 pills during the cleanse (I do not recommend this to Crohn’s patients, this was an individual choice during the cleanse). I planned it so that the cleanse would end a few days before the colonoscopy which was scheduled in October. To sum it up, I ingested zero carbohydrates and sugars for 30 long, tearful, grueling days. I ate only meat, salad, vegetables, almond butter, and a few other things I can’t recall because I blocked out most of that challenging month. I also started taking a series of tinctures and herbs to kill the candida. I started hydrotherapy sessions and daily meditation and positive self talk (which was completely necessary because at one point I was hallucinating or something from the detox and had to remind myself daily why I was putting myself through this process). If you are familiar at all with candida, you will understand this cleanse. I remember there wasn’t a lot of on-line support (that I could find) at the time for this type of cleanse (not like the awesome blogs and such out there today!). I also have to share that I am a tall slim gal with a super speedy metabolism, so I was very afraid of losing too much weight, but luckily I only dropped a pound or two. Oh, and it’s worth mentioning that my digestion was never better during this cleanse. Zero symptoms while off the medication and eating a zero carb diet.
15. October 2004: C-Day. The colonoscopy was nothing compared to the prep process (um, no words, if you’ve gone through one, you know what I am talking about). I have to be honest and share I fantasized that I would emerge from the procedure a healed woman, the GI would tell me my intestines/colon had healed, no inflammation, it was a misdiagnosis…now go home and celebrate. I was so convinced they would find nothing (I was symptom free and felt terrific). After the procedure I looked at the doctor with glazed eyes and asked, “What’s the verdict?” “You have Crohn’s Disease,” he replied. The inflammation was mostly in my colon and some of my small intestine. He also majorly poo-pooed on my month-long cleanse and gave my husband the stink eye when he proudly shared my alternative health practices and healing (all the sacrifice, seriously doc). But I had to try the cleanse and I’m so glad I did!
I have absolutely nothing against the medical field – like all things in this world, there are good versions and not so good versions. Up until this dark chapter of health my only visits to the doctor/hospital were yearly check-ups and visiting friends with their new babies. So this was my first experience with the medical field as a patient suffering with a chronic disease.
I’m proud to say since first diagnosed in 2004 I haven’t had any dramatic Crohn’s related doctor visits and gave birth to two amazing children (all while medication free)! Crohn’s symptoms vary widely among patients and my new/current GI doctor is extremely supportive of my alternative methods and feels my symptoms are less extreme due to my lifestyle. However, I continued to have marked inflammation in my colon although my outward symptoms were minimal. In October 2011 I starting a new medication to decrease the inflammation found in my colon (if inflammation is not treated by mediation or natural remedies, I run the very real risk of permanently damaging my colon, and/or getting colon cancer) NO THANK YOU! Through blogging I’ve learned about several healing diets specifically for folks like me trying very hard to heal autoimmune disease through diet and other alternative means.
I’m in constant communication with the energies and rhythms of my body (I was completely oblivious to this concept before I became ill). I’m by no means completely symptom free and notice my body changing as each year passes. My digestion will always be a concern, but on a day-to-day basis I don’t experience active, painful Crohn’s symptoms for long periods of time. Stress causes me to flare, but I can get my body back under control within a few weeks – a month at the most. Different issues pop up here and there and I have made some interesting connections between hormones/immune system and symptoms. I continue to experience pleuritis (this comes on with little warning) but now that I know what it is, I know how to immediately treat it and heal before it gets out of control.
Over the years and like no other point in my life, food has become more than something to ingest to feel full, more than just the response to hunger…it has become part of my health, survival and insurance, if you will, for a positive quality of life. And now my family is benefiting from my research, knowledge and nourishing food. I cook every single day, take care of my family everyday, and like most people with a chronic disease, everyday I make choices about lifestyle and food and this blog is a reflection of the holistic connection between all things most important to me: family, food, health and our earth, and my continued efforts to heal from autoimmune disease and chronic inflammation.
Thank you for stopping by and visiting The Tasty Alternative. And thank you for taking time to read my journey.