Thursday, September 18, 2008

Rented Space: Crohn's Disease

[Time to rent out the space again. Please lend your support to my friend William, writing about a current struggle of his.]

I'm 22, a recently college graduate living in Southern California, and just about 3 months ago, I got diagnosed with Crohn's Disease. I intentionally did not withhold my name because a large part of this exercise is about greater awareness of Crohn's Disease, and its cousin, Ulcerative Collitus.

For those of you that don't know what Crohn's Disease is, I can refer you to the excellently composed However, the basic overview is that it's an autoimmune disorder characterized by your immune system turning on your intestinal tract, usually in the area of the colon, causing a condition called Terminal Ileitis (named for the fact that it affects the terminus of the ileum).

Crohn's Disease occurs in roughly 0.0375% of the North American population, slightly less elsewhere in the world, with some kind of a genetic component, like most autoimmune disorders. There is, as of this moment, no cure. Medication and surgery can force the disease into remission, but it can't be cured. Much like Diabetes, the condition itself doesn't pose an itinerant problem, but it leads to all sorts of things that are.

About a week before I was diagnosed, I noticed a minor intestinal pain that didn't seem to be affected by doing anything, so I made a doctor's appointment to check it out. Sadly, they couldn't fit me in for about 10 days, and that process was cut short by my waking up two days before the doctor's appointment with the worst pain of my entire life. The ER doctor later told me that the scan revealed that my intestine was so inflamed, I had probably torn a hole in it. I was in the hospital for four days, and released feeling better with a probable diagnoses of Crohn's Disease, later confirmed by blood tests.

Sadly, it is not yet very well controlled, and I feel no qualms about describing this as the worst three months of my life. That being said, I think it's important that I point out the huge variety of symptoms and severities that come with Crohn's Disease. I've heard stories of people that manage their diet a little, and live a virtually symptom free life, and I've heard stories of people who are unable to live without nearly 24/7 assisted living.

Me? I'm somewhere in the middle. After my diagnosis, I was able to continue working my 20-30 hour a week contract job, though it required better time management. I can still go out and engage in social activities, though much less, due to my tendency to feel unwell frequently, and my low energy level.

You know what, hold on, lemme just detail you my full list of symptoms:

* Constant minor gut pain all the time (never below a 2, occasionally flaring up to a 6 out of 10 if I'm unlucky that day)
* Nearly constant bowel irregularity (sigh, I kind of hate to break down and use the “PC” term, but whatever, and yes I'm aware of the irony of describing “irregularity” as “constant”)
* Zero appetite. Yes, I mean zero. I haven't actually wanted to eat food (other than an occasional craving for a particular taste) for almost six weeks. And because of that, I have experienced:
o Ridiculous weight loss. I was a really pudgy guy in high school, weighing in at about 260 pounds (very heavy even for a 6'3” broad shouldered guy). In my first year of college, I dropped over 30 pounds because I was eating better and walking almost five miles a day to and from classes. In the past seven or eight weeks, I have dropped below 200 pounds for the first time since middle school. I'm not exactly sickly yet, but I'm finding myself cold all the time, as well as the other problem of:
o My incredibly low energy level. When someone has Crohn's and it's not in remission, they generally need to take in more calories than the average person to derive the same nutritional benefit, because inflamed intestines are bad at absorbing nutrients and calories. Likewise, anyone with a nasty chronic condition (perhaps diabetes excepted) generally requires more calories to maintain the same level of activity as someone without a chronic condition, because the body is also devoting energy to fighting whatever the problem is. The combination of the total lack of appetite, the caloric-intensive nature of Chronic Diseases, and the specific requirements of Crohn's disease, and you have quite the triple threat.
* Muscle pain and easy bruising caused by my particular variety of antibiotic. Thankfully, this problem is recently, and, alerted to said problem, my GI has arranged a switch to a different antibiotic, but that doesn't mean that my arm doesn't really hurt as I'm typing this.
* Minor nausea caused by an immuno-suppressant that I'm taking. This usually only occurs after an attempt to eat, but it hardly helps.
* My unfortunate tendency to “crash” every 7-10 days. This has easily been the worst part of the whole affair so far. Ever since it flared up again about a week after the hospital, every seven to ten days, I have one day of feel absolutely terrible, and being virtually unable to engage in any activity other than perhaps reading, watching TV, and feeling sorry for myself Walking is difficult, I develop a high fever and get dizzy easy, I'm very nauseated, have a lot of muscle pain, and intestinal pain flares up to the very high levels. Having just recently graduated from college, I'm not sure if I would have escaped my parents house by now anyway, but I know for sure that as long as this particular aspect of this condition stays as it is, I'm pretty much unable to live on my own, and will probably have a hard time finding a roommate I don't know who wants to put up with me like that. As of this writing, I haven't fully crashed for 12 days, which is the longest I've gone since things got bad. Hopefully, things will continue that way.

I think the inability to live on my own as long as my current health condition persists taps into the really rough emotional part of this experience that I haven't been able to deal with very well, because every day so far is just a struggle to not succumb to feeling incredibly shitty and lying around feeling sorry for myself. If I can actually get out and do something in a day, I consider it a rousing success, trying to take time out and deal with the fact that I'm really angry at having to relinquish my status as a fully functional young adult is completely out of the question.

My insurance is not very good, and because of that, I've been trying to change it to have a more powerful prescription drug plan. For those of you that are curious, I'm currently insured with Tonik Health (part of Blue Cross). It has a pretty high deductible, but it covered the experiences of an emergency four day hospital stay fairly nicely. When I was describing my insurance woes to someone, they asked what insurance I had, and, when I informed them, said, in a humorous manner, “Oh, Tonik. Yeah, that's pretty much just for healthy people.”

I know they didn't mean it as a mean comment, but it kind of drove home a devastating point. Yes, there are people who have a much worse case of Crohn's than I do, and Crohn's is only even remotely life threatening in the absolute worst cases, or without access to consistent and clean water sources, but I kind of liked describing myself as “healthy”. If I'm crashing, I'm tottering around because of my muscle pain, spending all day in bed (I'm already on 8 different pills a day, three of one, two of one, two of another one and one of one), nursing a bottle of Tylenol. Taking 8 pills a day and tottering, bowlegged, around the house is for 70 year olds at least, right? Same thing goes for not being able to sit up under your own abdomen power because it hurts too much. I have to prop myself up on one hand.

In addition to being incredibly painful as a whole, I've found this whole experience to be humiliating. I was never particularly good about fulfilling household obligations, I am the first to admit that, but when I want to help out, do the dishes, help with laundry, go out to dinner with the family, and I'm just too low energy or in too much pain to do it, it really just breaks my heart.

In fact, my whole relationship with food has changed. Not only am I forced to eat smaller meals as to not drastically upset my stomach (interfering with normal eating out etiquette, I've noticed), but I need to stay away from heavy fiber (raw fruit and vegetables, nuts, whole grains, etc.), as well as a majority of dairy products (due to the antibiotics I'm on, thank goodness that's changing). The reason why heavy fiber is dangerous is that when your ileum inflames, the pathway through your colon becomes much more difficult to navigate. Very fibrous foods, among a few others, are likely to get clogged there, and cause temporary (thankfully) but searing intestinal pain. Common sense can dictate some of these foods: “Oh, did you eat those sweedish fish or gummy worms too fast? You need to lie down and do nothing for a half hour.”, but sometimes, it makes no sense. It it actual intestinal blockage? Or did it just happen to flare up for a while, just because? I don't even know!

I love oatmeal; I love cantelope; I love honeydew! All these foods that are generally regarded with disdain by the public: I love them, but I don't get to eat them. I guess I could eat a melon if you boiled the hell out of it, but what's the point?

Quite seriously though, I've had a fairly healthy relationship with food my entire life. I've been guilty of medicating with food at times (“Geez I'm depressed, I'm gonna eat some ice cream”) and I was pretty darn overweight during high school, but I've never had serious weight control problems, or a particularly unhealthy relationship with food in either direction.

Until now, that is. My relationship with food is one of fear. Is this food going to painfully incapacitate me? It didn't last time, but that's not necessarily a good indication! You never know!

I hate eating now, not only do I never have the impetus to do it, but it makes me feel nauseated, and it's frequently a Russian Roulette of whether or not it hurts like a mother-fucker. I hate it, and I need to do it anyway, and sometimes it feels like it's slowly chipping away at my psyche until a friend mine asks me if I want to go to Chipotle some time, and I just collapse in fit of sheer apoplectic rage.

Why am I telling you this? Yes, I admit I could use a little sympathy. (Who couldn't when their life absolutely fucking sucks?) And yes, I need to get a lot of this off my chest in a healthy manner, but really, Crohn's Disease and Ulcerative Collitus (the two varieties of IBDs, Inflammatory Bowel Diseases) can be incredibly debilitating, incredibly humiliating, and incredibly difficult. Because of it's confusing nature, and fairly low occurrence rate, virtually no one is familiar with the disorders.

Do you know somebody with an IBD? Give them a hug.

Do you know anyone with a chronic health condition? Give them a hug. They need it SO much.


AnnetteK said...

I'm sorry you're suffering so much. It really can get better, and I have much hope for you.

I was diagnosed with Ulcerative Colitis five years ago after a terrible bleeding episode. I'm in remission now, though I have to be careful with raw veggies still. I miss salads, but the idea of eating one terrifies me.

Take care of yourself, be kind to yourself, and keep on educating others.

BetteJo said...

I've had IBS since I was a teenager, and I'm damn near 50 now. Crohns disease is probably IBS (and more) magnified 500%, so I feel for you. The symptoms and pain are hard enough but the unpredictability of it is one of the things that screws with your life so badly. That - and the fear and anxiety, whether it's of - can I eat this - or - can I go out without feeling sick - it ALL sucks.

But - telling people about it is good. It really is, and I thank you for that. Bowel conditions and diseases seem to be in the closet like depression USED to be. Knowledge may help more people deal with the symptoms without having to spend so much energy feeling humiliated too.

Sounds like you are smart and have a strong spirit. Keep fighting William, one foot in front of the other. You may surprise yourself and run again!

Anonymous said...

Sucks, definitely. Fortunately, I'm pretty sure there's a really good chance that in a few months you'll feel essentially normal -- though always cautious. Crohn's seems to run in my family (one diagnosed, another probably diagnosed, two of us undiagnosed but kinda thinking we have it too), and my experience is that there are drawn-out rough periods between long intervals of feeling fine. I fortunately have never had anything approaching the intensity of your bad episode. But I have learned that consistency in food is key. I eat pretty much the same thing every day. I suppose long experience (again, nothing like yours, though) makes me treat food as fuel and nothing else, and if I find the right combination, I stick with it. It's true one tends to be on the underweight side, but I have no problem maintaining a very active/athletic lifestyle. I hope you feel better soon! Maybe Lara can let us know how you're doing a few months from now.

Anonymous said...

Oh, and a piece of advice (though this may only work for me): when you first get up in the morning, immediately down ~12oz of water to get your system going and maintain a high hydration level.

Anonymous said...

I have had Crohn's Disease for 36 years and have gone from mild symptoms that were controlled with steroids to being on disability during that time.

However there are many more medications and treatments available now. But beware some can have some nasty side effects.

You did not mention what medications your taking?

Anonymous said...

My medications:

Entocort: A steroid, in capsule form to target the intestines to help minimize side effects.

6-MP: A common immunosuppresant used to treat Crohn's

Metronidazole: An antibiotic

A ton of Tylenol. Stupid Asprin allergies...

Teacha said...


A. Nonny Mouse said...


William, Thank you so much for sharing this. Seriously.

I have been dealing with a random (though mild, comparatively) bowel issue for several years. I have figured out what I can and cannot eat so that I don't cause what I jokingly call "an intestinal fire drill" (you know, EVERYBODY OUT!).

Your candid discussion of your issues has prompted me to bring it up to my doctor at the appointment I conveniently have today. I don't think it is Crohn's, but it sure sounds like IBS.

Best of luck to you and I second what anonymous #1 said: Lara, please update us with how William is doing. If you are both willing.

Anonymous said...

If you lived anywhere near Philadelphia I'd come give you a hug right now. I've learned they truly are some of the best medication.

Anonymous said...

Thanks for sharing William, you have helped me understand what my sister-in-law is trying to deal with and why my brother is so protective of her, never wanting to leave her alone for too long. Thank you for helping me know of their pain, and your pain. Big hugs to you all. I hope you find the right balance of drugs and fuel to give you back your life.

Jack said...

I was diagnosed with Crohn's in college. Ultimately, side effects of the medication I was on for two years (steroid immunosuppressants) led to depression (which I was at risk for anyway). I dropped out, and have been struggling with depression for twenty years since.

But I was lucky to figure out just what I needed to change in my diet. In my case it was caffeine and chocolate. Had to avoid those things until six months ago. After training for long-distance running for a year, I've seriously had a miracle, and can eat chocolate and drink coffee without pain for the first time in twenty years.

I can only wish for a similar miracle for you. I know things have gotten worse for you lately, from Lara's follow-up post, but I hope you beat the odds. I know it's not much, coming from a stranger on the Internet, but support from strangers on the Internet has helped me through some hard times lately, so take it for what it's worth. Best of luck to you.