It’s been just about six weeks since I learned I have Crohn’s disease. I have been doing a lot of thinking and informal research on topics that I never had to give much thought to before. I keep coming back to three big ideas.
Everybody loves drugs
On days when Asacol keeps my inflammation down (or my pain goes away on its own and i happen to be taking my pills) I love drugs too. I am lucky that a very basic treatment has been working for me (aside from some chapped lips and, of course, the threat of kidney failure. But we’re keeping an eye on that). But most people with my condition would be prescribed a long-term, high dose of steroids. These drugs, in layman’s terms, mess you up.
When that doesn’t work they put you on something like Humira. Surely you’ve seen the ads on tv of the lady with bad psoriasis who takes Humira and then can wear sleeveless shirts out with her friends. yay! They can bury her in a sleeveless shirt when she dies of cancer from taking an anti-TNF which the FDA requires bear the black-box warning, the most severe of the THIS DRUG MAY KILL YOU warnings that most of us choose to ignore.
Drugs like that are used to treat many autoimmune disorders, and there are people who claim they have been miraculous for them. I’m happy for them. But in my unofficial online research, I see that most medical studies around Crohn’s have to do with how many people will come down with TB from taking Remicade rather than on, say, how the elimination of certain foods or the introduction of certain bacteria into the gut help with IBD.
Maybe when big pharma starts mass producing prescription strength flaxseed oil we’ll see more of these studies. For now, there’s always Prednisone.
(one of these days I’ll write about how allowing pharmaceutical companies to advertise was the worst thing ever, but today is not the day)
Fundraising is big business
Both big pharma and the fundraising foundations know there is a lot of money to be made off people being sick. I had always been skeptical of the huge groups that sought to fund research and “raise awareness” (now that everyone is aware of breast cancer can we stop with that GD pink ribbon?)
Honestly, and forgive me if I am attacking a sacred cow, it was the Komen foundation that first put me off. I should admit my prejudice first: I don’t like big things (note my aversion to casinos, amusement parks, and Super Stop and Shop). That foundation is HUGE. And you don’t get that big by just being a bunch of really nice people who want everyone to get better. Maybe that’s a necessary evil.
A few other observations, mainly of the Crohn’s and Colitis Foundation of America. For one, they gots corporate partners! Read into that what you will. Their website (which had been very helpful for me) will also lead you to info on fundraising races.
Odd admission: one of my first thoughts after my diagnosis (after imagining myself with a colostomy bag at 40. Cross your fingers) was oh no. Does this mean I have to start doing fundraising races? Despite knowing many wonderful people who raise money through their athletic endeavors, that has never been my bag for two reasons. 1. I don’t have the time to raise $4000. 2. The people in my life already give to good causes. I don’t have it in me to ask a friend for $20 when she is already stretched thing trying to start a school in Africa (but who isn’t these days).
I still poked around the website, entertaining the idea joining a training group and getting LOTS OF ATTENTION at races for being a REAL LIVE CROHN’S SUFFERER WHO RUNS HALF-MARATHONS. Then I saw that one of the perks that would be included if I joined a race and raid money would be accommodations and travel to whatever exotic locale my race was in. So who would be paying for that? My friends and family who already tithe, give money and hugs to panhandlers, and start schools in Africa.
So while I’m not knocking the idea overall, it ain’t for me. Besides, in the last six months I completed a triathlon and half-marathon while enduring what I now recognize as an epic Crohn’s flare. Didn’t puke once.
We eat crap
For whatever reason, the one fact about IBD that I have stuck in my head is that these disorders only exist in the first world (pace the blogger who says it only exists in four countries and then lists Western Europe as a country). Whether it’s pollution or pesticides or BPA or fructose that makes everybody sick, one way or another we are all swimming in it.
There’s no way to avoid it, so I am not beating myself up over the occasional Twinkie in my misspent youth.
(as I ponder what to write next, I sip from a plastic water bottle. Sorry, future progeny who will have eleven fingers.)
There are a lot of things in our world with the potential to make us sick. We avoid as much as we can within the bounds of what our sanity will tolerate. Then we take a vitamin (Flintstones in my case, because my delicate constitution can’t take real vitamins). I just wish that the research I mentioned above poked around a little bit more into how our environments cause our illnesses rather than just in how to treat them. But who would fund that in the face of the powerful pro-Twinkie lobby?
With three epiphanies in six weeks you’d think I was spending two weeks on each. Truth be told, most of my time I spend thinking about all the things I always thought about before: auditions, the liturgical calendar, public policy and vegetables. Yet I’m starting to spend more time researching probiotic pills and scrutinizing my insurance benefits list (and calling blue cross crying when I don’t understand. I learned the hard way last month that insurance companies are not like used car dealers. They don’t haggle.) Crohn’s is not my whole life, but it’s part of it now, and you can bet I will bring the same critical mind and obsessive self-reflection to this as I do to everything else. Look out, swollen colon,
Great insights in there Meg. Thank you for your generosity, I love reading your blog.
aw thanks Sarah! Hope you are well.
I know my WoW guildie is on a diet. I can ask him for details. I think my aunt has been on steroids for awhile, but I can ask her, too, if you want.
Taylor M., late of livejournal.com says
I would not like to be a content and satisfied swollen colon right now! This is a beautiful reflection on your approach to diagnosis. Of course you’re going to be brave enough to stare it in the face and write about it, but my thanks for your doing so should be shared any way. My former JVC roommate was just diagnosed with late stage colon cancer at age 28, which is hardly the same thing, but I’m still left stunned by the epidemic proliferation of these digestive tract diseases. Pray for my beloved brother Tony M. of Pittsburgh, if you would.
By the way, you and the BF looked so cute last night in NY!
Geez, that’s really rotten. Sometimes I feel like I shouldn’t be allowed to have any opinion because my health isn’t as bad as others. Your friends I surely in my prayers.
And thanks- I was singing there last night and we had a blast!
Len Besthoff FanClub (@LenBesthofffans) says
First let me congratulate you on performing at Carnegie Hall. I have yet to visit the hall even though i am in the city every other weekend on work related issues. I am sorry to hear about your Crohn’s, a family member of mine has it. Between the pills, vitamins B12 I believe and nutrition he is able to live a very pain free life. Azulfidine and Corticosteroids work very well for him. With medicine i still believe that whatever pill we are given only leads to another pill to offset the side effect of the first pill. Around and around we go and big pharm is making serious cash off us.. Putting my rant behind me, I hope/Pray that you get better and given the way medical advances have gone there just maybe a cure for it down the road for you.
Thanks a lot. Feel free to rant on big pharma. Sometimes I feel like any healing they provide is just a fortunate side-effect of their money-making endeavors.
Carnegie was beautiful. You should check it out!
other Jen says
I hate drugs. I have chronic conditions that I have to take medication for daily, and I hate it. I feel ruled by the tiny little pills (and occasional inhalants.)
Really, I’ve mostly come to terms with it, but I still have my moments.
I’m sorry to hear that, that sounds terrible. Hopefully they are doing what they need to do for you. Be well!