Friday, July 16, 2010

Gag Me

Perhaps because of my immersion in the medical world, I have learned to love and admire all things medical. Or perhaps I just like to know how things work. Regardless, I find the hospital oddly comforting, there’s safety and relief in hospital protocol and IVs and medications, almost as if pain indicates rescue, therefore being in the hospital means you will feel better... eventually, at least. Nonetheless, I take every opportunity I have to give my IBD and youth patient speech to any available ear, I feel it’s particularly important in hospitals where a kind word or a smile can go a long way.

Like many IBD patients who are diagnosed in the pediatric realm, I have learned to casually operate with an NG tube in order to be fed. Simply, a tube is placed down your nose all the way to your stomach where you are given formula. An genius idea to be sure, being tube-fed doesn’t leave me feeling hungry, the GI tract still works, and the pressure to eat when food is sworn off is removed. The downside, you have a funny looking tube stuck to your face which disappears down your nose, for me 57 cm down. Obviously NG tubes aren’t trendy, it’s no metallic sandal or ripped jeans, a fashion statement it is not, but it is something that everyone can see virtually the entire length of your treatment.

I sway back and forth debating whether the fact the IBD is exteriorly invisible is a good or a bad thing. The bonus is that often times no one knows anything is wrong, but that can also be our worst enemy when people can’t see how severely ill we are. But the NG tube changes that - it’s a visual, an I’m-sick-and-this-tube-looks-awkward reminder that one of these things is not like the other. The first time I went to high school with mine, I was admittedly nervous, though I might be okay with it, how does a person manage to keep her chin up through a high school of over 1,500 students staring at a tube on her face? People asked if I had snorted an iPod shuffle, to which I would grin and explain what it is, or they’d ask in that tentative (aka WHAT is wrong with you???) tone, ‘So.... how are you doing?’ all the while staring at the tube. One day, an old friend from elementary school who I didn’t really speak to anymore came up to me at lunchtime, sat next to me, and as casually and curious as he could muster, asked what it was. Of course he was asking because it was bizarre, but he seemed to genuinely care and listened to my entire explanation and asked questions. He thanked me for telling him about it, told me he hoped I felt better soon, and that was that. In my opinion the best way to do things.

Which brings me back to a couple of days ago. Being able to consume as little as I currently can with my colon rebelling, my nutrition levels have dropped and I then campaigned for some tube feeds. When I mentioned to the nurses about being able to put in my own tube, they were shocked and informed me that ‘they did not do that at the hospital.’ Well, I begged to differ, and sure enough, they gave me the tube and let me do what I apparently do best, shoving a tube down my nose. Word spread through the floor about the novelty - a teenager who could put her own NG tube down, I was famous - well, at least for a hospital floor. My nurse came in at one point to start running the feeds, toting along her four nursing students. She asked if I had a syringe in my room to flush the tube, and I took it out of my bag, explaining I did it myself. Regurgitating the legend of my NG tube skill, she excitedly asked me to teach the students. I grinned, another shameless opportunity for my lecture. I was surprised at how intently the nursing students watched me, they were paying such close attention it made my brain hurt. I hope that I was able to show them that tube feeds, hospital stays, and bowel diseases can ultimately be a positive, humorous, and healthy experience with the right attitude and I hope they carry that lesson through their nursing careers.

Way back when I was 12 and contemplating having exclusive NG tube feeds, I was scared. I didn’t want the physical reminder on my face for my peers to blink at dumbfounded, and I certainly didn’t want to give any speeches about what IBD was. I remember sitting with my Dad in the cafeteria of the children’s hospital, my head on my hands in fear of my future. He announced that if I decided to do the tube feeds, he would wear an NG tube with me for three months. I looked up at him, baffled, here was a man who had the gag reflex of a peanut and he was volunteering to have a tube shoved down his throat? He had a job, he had clients, and yet he was willing to live with a tube on his face just so that I wouldn’t have to do it all alone.

I think of that when I think about my NG tube, sitting on my face daring people to ask me what is wrong. I think of the incredible lesson he taught me, of being a supportive friend, of being as empathetic as possible, of awareness and of hope. If I’m not willing to take a moment and educate someone about my disease, than I cannot be fully shocked when I don’t like the way I’m treated. Yes, everyone deserves to be treated with respect - but here’s the secret - sometimes they just don’t know what to say or do.

The only time I’ve ever seen Crohn’s on a medical drama was during the first season of Private Practice when the show managed to staple together every stereotype about IBD - that it was a mental illness, girls must have eating disorders, and that it’s easily diagnosed and treated. In the episode, after running some bloodwork and finding an elevated ESR (which, of course, any IBDer knows is a marker for inflammation in the body), they diagnosed the patient with Crohn’s and the show ends with them prescribing her Prednisone and basically saying Ciao, have a nice life. I’m glad IBD is so cut and dry - my bowels didn’t seem to get the message. When people say that no one wants to hear about bowels and poop, gag me, not only is it a fact of life that everyone goes to the bathroom, but it is a fact that countless people are suffering from an unfashionable disease. And we deserve change.

But change does not come from wishing or being frustrated at how we’re perceived. As a contingent of youth, we cannot complain that people don’t hear our voices if we’re not willing to speak.

So speak your mind, and people just might listen.


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