06 February 2012

Crohn's Disease: The Incidentals

This post is not directed at anyone in particular, but rather is the manifestation of multiple conversations I have had with several Crohnie pals of late, coupled with my own most recent misery as chronicled here.

Oftentimes, I do not feel particularly good. Crohn's disease pain is chiefly confined to the specific area affected by inflammation. In my case, that's the terminal ileum--the intersection of the small and large intestines. It's in the lower right quadrant, near my right hip. It's common enough for there to be similar pain on the opposite side on the left, but it's the pain on the right that is almost entirely constant. I've acclimated to it enough that what used to be an "8" on the pain scale is now a "6" but it still nags at me and slows me down.

Sometimes, though, what ails me is not the inflammation but rather one of myriad secondary and tertiary effects of Crohn's and its treatments. For instance, I have taken a ton of Prednisone over the years. I took more than 2g of it in just the first five months of 2011. Prednisone is a steroid, used to combat inflammation. It works and it has kept me off the operating table, but at a particularly high price. My hips and my back are in almost constant pain, and it's particularly bad this time of year as the weather fluctuates so dramatically between wet and cool and outright freezing. My immune system has been compromised as well, leaving me entirely susceptible to all manner of things. I've already lost two weeks this Winter to what I'm confident was Ebola but in all likelihood was merely a cold. You may have been annoyed by it for a few days, Dear Reader, but I could scarcely get out of bed for a week each time it came round.

Last week, I made the decision to resume Prednisone after having had a respite from it since nearly August of last year. I have taken a few pills as needed here or there, but no actual tapering dosages until this week. It was necessary, I felt, and the steroids have done their job with typical proficiency and for that I am truly grateful. That said, the heartburn is almost unbearable and my already shaky sleep pattern has been entirely disrupted. Yesterday, I awoke at 11 AM, went back to bed before 1 PM with a migraine, awoke around 6:40 only to return to bed around 9:30. I got back up at 11:00 PM, checked on a fellow Crohnie who is currently hospitalized, wrote 1418 words on my novel and returned to bed around 2 AM. I read some of Doctor Zhivago, tossed and turned and here I am blogging at 4 AM. My back hurts, my guts are growling and I feel like puking my guts up. C'est la vie.

I share this because all too often it is on account of these woes, rather than Crohn's directly, that we Crohnies are miserable. The pain from the inflammation is the only source of discomfort fully associated with Crohn's disease proper; the rest are regularly sort of dismissed (particularly by physicians) as "incidentals." These are side effects, as though somehow that designation lessens the severity of the pain or minimizes their disruptions. Right now, I can tell you I am more miserable from the peripheral aspects of living with Crohn's disease than I am from my stupid terminal ileum. This is often the case for Crohnies and it's a point that I think we would all benefit from being more regularly acknowledged.

That said, I do want to make note that my personal physician is terrific about all this (though I cannot say the same for a specific nurse at Our Lady of Peace who scrutinized my case as though she was trying to ferret out an al Qaida operative). Someone needs to be completely frank when describing life with Crohn's, whether to a newly diagnosed patient or to someone trying to understand what our lives are like, and say that, yes, Crohn's sucks and will hurt but so too will the ways of coping suck and hurt.

It's not that I, or anyone else, want to earn extra Suffering merit badges or anything pedantic but rather because all too frequently, our complaints of discomfort seem like trivial whining because they're not directly about the disease itself. It can make a Crohnie feel self-conscious, to the point that we become afraid to even express how "blah" we feel because there's a perception that someone is just waiting to argue, "But it's not your Crohn's itself, so quit blaming it/quit whining." My back and hips don't know or care about the origin of their pain; they only know that it hurts to stand, walk or lie down for very long. Why should I downplay that pain? Because it was brought on by medication instead of my actual disease?

The nature of a chronic illness is to affect the entire body. I had to see an oral surgeon last year to extract two teeth (my wisdom tooth had permanently damaged the tooth adjacent to it). A regular dentist could have performed the procedure, except my prolific use of Prednisone meant that the condition of my teeth required a greater level of expertise. I had never even thought of how Crohn's could affect my teeth, but there you have it. The ways in which this miserable disease can cast a pall across the life of a Crohnie are as diverse as they are deflating. All we ask is that this be acknowledged honestly by our caretakers and that those of you who are trying to be our friends and supporters keep this in mind when we beg off from participating in something with you or spend all day in and out of bed. We're not self-indulgent, we're not trying to put you on and we're not weak. We're affected by something on multiple levels and we're doing the best we can.

2 comments:

  1. I am glad you posted this, even though I know it and understand how high a cost the predinosone takes on you.  I hope I never have to get put on it.  I have another dear friend with UC and was shocked at how much they prescribe to you guys.  Also shocked at the effects it took on his body.  I hope you don't feel afraid to tell me how you are really doing, because if I ask I want to know.  I do think of you often and send healing thoughts and prayers.

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  2. I try not to badmouth Prednisone because it's been good to me, too. It was first presented to me as "the deal we make with the devil." That's pretty accurate.

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