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Crohn's Disease, Personal

Crohner Returns Home, Loathes Large Intestine

Well, friends, I’m home, back in the good ol’ U.S. of A. Surprise!

For the random passer-bys or for my acquaintances that don’t know already, I have Crohn’s Disease—diagnosed in 2005. While in China, the disease flared-up, which unfortunately forced me to return stateside. To be precise, Crohn’s Disease is an autoimmune disorder, which is a condition that occurs when your body’s immune system mistakenly attacks and destroys healthy body tissue.[i] How one gets this disease is still unknown, and it is not curable, only treatable. I should also add, it’s not contagious, so don’t run away when you see me.

What a person with this disease is most worried about is inflammation in the gastrointestinal tract; you do whatever you can to avoid getting these “flare-ups,” because having to deal with any number of the symptoms—crampy, abdominal pain, fever, fatigue, loss of appetite, tenesmus, persistent and watery diarrhea, weight loss, constipation, eye inflammation, fistulas, joint pain and swelling, mouth ulcers, rectal bleeding and bloody stools, skin lumps or sores [Ulcers] and swollen gums—is not fun. Actually, by looking at the symptoms, I’m considering myself lucky.

You get flare-ups by not properly treating your Crohn’s Disease and/or eating or drinking something that the disease does not like, which is different for everyone; cutting something like tomatoes out of your diet may help one person, but not another. For me, being on my medication, HUMIRA, is the only way I can get by without pain or difficulties. It gives me an iron stomach that makes any food or drink do-able. However, when I go without the meds, even though I maintain a strict, healthy diet, eventually everything I eat wreaks havoc on me.

For the past four years or so, the medication I’ve been taking is HUMIRA, a pen injection. Twice a month I take this pen, press it firmly against my abdomen and inject the medication. With this I am free from the symptoms of Crohn’s and can live a normal life. Nonetheless, even with this injection pen I have made some appreciable modifications to my eating habits. For instance, I almost exclusively eat organic food (and local, when I can; however, that’s for supporting the local people and small business, not really for my health); meat is only about five percent of what I eat; I juice regularly with both veggies and fruit; for example, I haven’t drank a single soda in months, and don’t plan to ever drink it again. Only water, homemade juice and beer for me, please; and lastly, even though I love it, I try to limit my spicy food intake.

Shortly after getting back to China from my travels around Cambodia and Vietnam, I started having minor stomach problems such as aches and cramps that over the next five weeks escalated to the point of hospitalization. I’ll spare you the other unpleasantries, but a Crohn’s flare-up was rearing its ugly head. I’ve had flare-ups before, but always while being in the U.S., insured and having access to my doctor. This time around, I was not only doctor-less, but HUMIRA and insurance-less, too—a problem that I was set on fixing before things got bad. I knew that once I got to China, I needed to get insurance and arrange for my Crohn’s medication to be sent over. What I didn’t foresee is how much of a problem it would be to accomplish this.

HUMIRA is expensive, around $1,000 per injection. I’ve been dropped from an insurance company in the past because I’m so expensive to insure. When I was in graduate school, the university supplied me with insurance because I was a graduate teaching assistant, but since the work I had lined up in China did not offer any, I had to find new insurance. I spent weeks, everyday, calling and applying. What I was told from the international insurance companies, the ones that originate outside the U.S., was this, “you have a preexisting condition, we cannot insure you”. Or, “since you have a preexisting condition, we can insure you but we won’t cover anything that has to do with your disease.” Or, “we’ll insure you, but you have to wait twelve months before being able to use any insurance benefits.” Since those attempts were futile, I decided it would be best to call insurance companies that originate from within the U.S., because it would be against the law of the land to deny me because of my preexisting condition. Thank you, President Obama. After checking on international insurance policies that originate within the U.S. and for U.S. citizens only, I learned that being insured is not the problem, but the cost and how much they’ll insure you for is. The problem I came across was that the policies they offered me were very expensive and incredibly frugal; borderline worthless for me as they did very little to cover the costs for my meds and necessary clinic check-ups. My HUMIRA alone costs around $24,000 a year and these policies were only offering to pay up to $3,000/year to pay for prescription drugs. I also require regular and frequent clinic visits, for which they weren’t much help there either.

As I was struggling to find a solution, my condition was worsening. I even tried traditional Chinese medicine and acupuncture, but it didn’t help. There is plenty of information out there pronouncing that acupuncture can treat the symptoms of Crohn’s disease, but perhaps it was too late for me. Or, more likely yet, acupuncture doesn’t treat Crohn’s at all. Either way, I was getting bad. My body was literally shutting down. Within five weeks I lost 35 pounds and was bed-bound from extreme fatigue and joint and muscle pain. Even my eyes hurt to turn. In addition to not being able to move about, Ashley noticed that my skin was starting to turn a green-yellowish color, and my eyes were sunken in and dark. I was skin and bones; six feet tall, 130 pounds, and noticeably malnourished. Acupuncture failed, boiling and preparing hundreds of bags of assorted Chinese herbs failed, and finding someone to insure me failed, too. It became obvious that I could not stay in China any longer, so homeward bound I went.

Upon landing in Minneapolis, I immediately went to the emergency room where they decided that I should be hospitalized. I was in there for four days receiving fluids and having all sorts of tests done. They even quarantined me thinking that I picked up something in China, Cambodia or Vietnam. That’s a pretty good indication of how sick I looked. The doctors were really fascinated with me. They came day and night, by the herds, even though they weren’t required, to ask questions and visit with me. They were all highly engrossed by my adventures in Asia and my lifestyle and were determined to help me get better, and eventually, they did. After being released from the hospital, I made two more trips back to the emergency room. The doctors shouldn’t have released me in the first place, or at least that’s what they said, and I agreed. I was experiencing indescribable pains and my body was cramping up and my joints felt as if they were being stabbed with needles and I still couldn’t shake the fatigue. I needed help just to walk. However, eventually HUMIRA came and things started to get sorted out and I was slowly feeling better.

So that’s what happened. I’m still recovering in St. Paul, feeling better and better everyday—put on 15 pounds so far, in fact. I have all my medications on hand and my nutritionist has me on a 4,000-calorie/day diet of healthy food. Can you believe they can pack 400 calories into an 8-ounce shake? Crazy. I’m also working out, running and doing power yoga everyday (sometimes, twice). I even registered for the Twin Cities Marathon on October 7th. Basically, I’m just looking to get back on track.

For the foreseeable future, I’ll be staying in Minnesota. I recently got an internship with an international nonprofit organization based out of St. Paul helping newly arrived refugees adapt to their new American life and become self-sufficient. Also, for the moment my medical condition does not allow me to be anywhere else. But, I’m ok with that. Home is where the heart is, anyway. As for China, well, we’ll see you again, I’m sure.

Acupuncture from head to toe.


[i] Board, A.D.A.M. Editorial. “Causes, Incidence, and Risk Factors.” Crohn’s Disease. U.S. National Library of Medicine, 18 Nov. 0000. Web. <http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001295/&gt;.

Discussion

2 thoughts on “Crohner Returns Home, Loathes Large Intestine

  1. Oh my goodness Brooks, what an ordeal. So happy to hear you’re doing better, having Ashley to take care of you is also a good thing. Glad you’re thinking ahead to, of all things, a marathon. Certainly you’re thinking of a complete recovery and we’re all here pulling for you. Good Luck Brooks!

    Posted by Sheri | April 10, 2012, 8:22 AM

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