Many of you already know that my wife Keena has Crohn’s disease. It amazes me how many people I talk to know someone with Crohn’s or very similar diseases like Ulcerative Colitis or IBD. Rates are definitely on the rise…theoretical causes are another blog (or ninety). But, as I write this blog entry today, my heart is heavy as Keena’s disease has finally brought us to a really serious decision – namely surgery.
To say that someone has Crohn’s is similar to saying someone has cancer. It’s a big concept that can manifest itself in various ways. For example, Quarterback David Garrard (of the Jacksonville Jaguars) has the ability to continue playing through his disease. Keena, on the other hand, has difficulty keeping up with our little girl on a daily basis. Because of where the disease lives in her system and the types of drugs she’s on, lethargy for Keena is an understatement. She could no more quarterback an NFL team than I could run 100 miles…at least in my current state of physical health! (By the way, Keena is David Garrard’s biggest fan!)
Keena first exhibited symptoms about 6 years ago. It started with a mouth full of canker soars – I’m talking 20-25 at a time. She started losing weight simply because she couldn’t take the pain of eating! So, our journey began by trying to diagnose the symptom. It led us all over the place. Every friend, co-worker, and family member had a home remedy or “knew a person…” It became a litany of futile attempts at controlling a symptom instead of looking for the cause. This was followed by Google searches, WebMD searches, and on and on. Doctors had no clue, hypothesizing allergies and such, but offering no help at all. Finally, we started down the holistic route. Herbalists, acupuncturists, and other guru’s gave her ointments, lotions, capsules, and therapies that would “surely” work.
Within six months, Keena started noticing some issues in the restroom. Again, these abnormalities were dismissed by the physicians we saw and the holistic group tried to deal with problems that were not the issue. Not to mention our own web searches went into overdrive. Keena tried five major diets – she performed the Specific Carbohydrate Diet for almost a year with no help. We spent hundreds of dollars on Jordan Rubin’s (Maker’s Diet – I’m NOT linking to this diet as I will not promote it – more on that later) diet which Keena followed for a year with no letup in symptoms. Meanwhile, she began losing major amounts of weight. At 5’6” and 130 pounds normally, she was soon 120 pounds. She had to stop teaching her First Grade class early and was soon unable to leave the house. By the end of the second year, she was down to 110 pounds and was now using the restroom almost twenty times per day. Again, medical personnel were stumped, telling Keena to go on “bowel rest” by not eating, religious friends prayed vehemently for a miracle that never came, and while holistic practitioners gave us plenty of answers, they ended with no results. (Unfortunately, these holistic folks often scared us into distrusting Western medicine and traditional hospitals.) So, we were left wondering and wandering through our own path.
Finally, weighing 95 pounds, I carried Keena into a doctor’s office in Boulder, CO. I will never forget bending down to the couch that had become her bed for the past four months and hearing, “Face, don’t let me die.” (I’m tearing up as I write this!) So, the doctor listened to our story and sent me from the room to “confront” Keena about having AIDS or being bulimic. Finally, he agreed to admit her to Boulder County Hospital where we were told her vital organs were hours from shutting down. For the first time in months, we both felt a sense of hope. We let go of the fear of hospitals and they went to work!
Within three days, they were fairly certain Keena had Ulcerative Colitis, which turned out to be pretty close. We had an assembly of physicians and nurses working to help Keena get well. Within a week, she had put on 10 pounds and she was eating solid food again. Seven days after entering the hospital, Keena walked away (hobbled is more like it – she had such iron depletion, water pooled in her feet by the pint!) from BCH with a few answers and a new hope. We had an idea of what we were fighting; now we had to figure out how to do it.
Keena started on several medications that did help at first. She was on major doses of prednisone, flagyl, and azacol. Over time, we came to understand there was a continuum of medications, from benign (think Aspirin) to potentially lethal (Tysabri – viral infection of the brain…yikes!). Keena started on level three of this continuum and began working her way up the scale. Along the way, she discovered a bit of relief in veganism, we were told not to expect the ability to have children, and she had to quit teaching due to entering the hospital at least once per year for a week or so each time. She began infusion regiments, self-injections, and treatments that would make a torturer blush. The one real time of respite came in late 2006. Her body seemed to even out for a brief period and Keena’s GI doctor told her that if she wanted to have children, we seemed to have a window. The biggest blessing of this time – of ALL time – came almost exactly ten months later in Addie (yes, apparently we’re both quite fertile…).
That was a year and a half ago. Unfortunately, Keena’s disease appears tied to her hormones pretty solidly. About 4-5 months after a baby, a woman apparently has a flood of hormones that release into her system. Keena’s release of hormones put her into a tailspin that she has not recovered from even slightly. This brings us to today. Despite the best efforts of doctors and the heaviest hitters on the medicine spectrum, Keena is spiraling back towards where she was before the first hospital stay. She can’t take care of our daughter like she wants to…heck, she can’t take care of anything like she wants to. So, two weeks from today – one week after her birthday and four days prior to Thanksgiving – she is going under the knife to remove her entire large intestine. It’s a decision that brings fear and hope at the same time. It’s very permanent and potentially life saving, but it’s the hardest decision we’ve ever made.
During the past half decade, I think it’s safe to say my wife and I have both grown a great deal. Here is a sampling of lessons most people probably learn at some point, but which have been particularly impactful for us:
- We can more easily spot a con-artist who is selling a product while preying on people’s fear and despair. A good litmus test: try contacting the person who is making the claim – can you easily setup a phone consult or do you just get an 800 number for a company? (We were never once able to find Jordan Rubin and speak with him despite letters, phone calls, Google searches, etc…)
- We found that there is no such thing as a standard issue person. The claim that something will work for everyone is ludicrous. There are very few “laws” in the world (like gravity) – I feel confident in saying that people are different. They react differently to medications, they need different support models, and they have to have unique options for their case. As well, some react to specific foods, others tolerate environmental things better, and some people are healthy despite treating their bodies like a subway restroom.
- Doctors don’t know everything in spite of how they may act. It took us years of wading through doctors to find some that will work with us instead of around us. It was hard to find someone who wasn’t a know it all, who actually treated Keena the person, not Keena the patient. I cannot tell you what a difference Dr. Erik Springer has made for Keena. He listens, he researches, and he is not afraid to admit it when he doesn’t know something. He’s not just a good doctor, he is a great man.
- Life is comparative. It’s so hard to hear people complain about “trivial” problems in contrast to what Keena has / is going through. But that’s what life is, right? You believe your problems to be significant and therefore they ARE significant. Once again proving that perception determines reality. (Keena actually had a friend visit her in the hospital only to cry because the dog had peed on the carpet that morning…)
- Life really is quite short. When you butt up against mortality, it changes your perspective on a lot of things. Time is a big one. I look back at my life and realize I wasted a LOT of time on things, people, jobs, and processes that weren’t worth 10% of the energy I put into them. Had I cut ties sooner, I could have moved on to more worth-while ventures.
- As a PK (pastor’s kid) I was raised in a very anti-money culture. This isn’t to say that money wasn’t valued, but it was perceived as a “necessary evil.” So, growing up I tried hard to make it to a place where I didn’t have more than I needed. Then, when Keena got sick, I soon realized that not having “more” meant not having enough if the chips were down. Now I work my tail off to make sure we’ll be ok no matter what.
- Family is important. I’m sad that it took Keena’s illness to show me how valuable family is, but it did. I always had the impression that counting on family too heavily was dysfunctional, but I was wrong. I love my family dearly and would do most anything for any of them. Nobody is on their death bed saying, “I wish I’d spent more time working…”
I know this blog is fairly long. I think it was cathartic. I have actually spoken at an Immune Disorders fundraiser and it was therapeutic too. I think Keena’s story is powerful, inspiring, and a healthy balance of hope versus reality. I am nervous and excited for the chapter that begins in two weeks time.
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