little Crohn’s vignettes

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1 AM

It hurts.
I almost make it to the toilet.  The stars are out, the nightlight glows softly.  My husband snores from the livingroom.

I bend over as the gas moves from ascending colon to the undiseased part, then back down again through inflammation, a bleeding rectum,  finally painful diarrhea.  I try to focus on a catalog, a crossword puzzle.  It hurts.

How many times do I wish I could go backwards, wave a magic wand, and not eat something, try something, that failed so…painfully?   I wish I never tried TSO! Read the rest of this entry »

Can I just gripe about the little things? I think with Crohn’s disease, we should get a stipend. Point of fact:

1)Soft toilet paper is expensive! And when you go to the bathroom 5X as much as the average person, you have to use that many more rolls. This is unfair. The economy toilet paper hurts if you wipe more than one time. But there is not much toilet paper on those soft rolls. Do you ever feel like you’re the only one replacing the roll in the bathroom and you just changed it a few hours ago? I want a toilet paper tax credit.

2) VSL#3…it’s the only probiotic they’ve done extensive double blind studies on. But it’s covered by insurance only if you’ve lost your colon and are suffering from pouchitis. I want my insurance to cover it so I won’t have to lose my colon and suffer from pouchitis. Where’s preventative medicine? The full dose costs $500 a month and I can’t afford that. So I take 1/4 a dose, or often 1/8 a dose. I could save money on toilet paper if I could afford my probiotics!

3) And who pays for the annual colonoscopy? First you have to buy the disgusting liquid that evacuates your bowels violently. Then you have to pay for that many more rolls of toilet paper. Gas to drive to the hospital, time off spent at work. And just to get the bad news that your colon is still inflamed, you get the co-pay of $500 – $1000 to make the news that much more difficult to stomach.

4) If you’re lucky enough to have insurance, and it will pay for your medicine, but you’re unfortunate enough to be on Remicade or Humira, there’s the $75 or greater co-pay for something that helps for only so long, all the time wondering if you’ll be the percentage that gets lymphoma, and then you’ll have to pay for that!

5) Food – It would be much cheaper if I could only digest beans. Or whole grains for that matter. I know how to eat and I know how to cook cheaply. The two include whole grains and pulses, which go through me rather rapidly, and then I use up more toilet paper! I could feed my family for $500 a month if only I starved. And if you’re on SCD, prepare to spend double on almond flour, 1/2 and 1/2, and vegetables that are often out of season. I’ve got endless kale in the garden, purple cabbage, and fava beans, but they all give me gas, and then I need more VSL and toilet paper, and in the end, I’ve saved nothing.

6) All those vitamin defincies cost money replenishing. Magnesium chloride for my foot soaks at night. Calcium citrate, magnesium glynicate. And iron, vitamin D, fish oil, B vitamins. We want to be healthier, we just can’t swallow the amount of pills it will take to get there. Or afford them when they run out. I have to admit, though, that CVS was having a sale on fish oil, so I bought a 4 month supply. And they don’t even cause fish oil burps! Now I can lower my inflammation AND prevent heart disease? The heart disease would be covered on insurance, but the fish oil that prevents it is not.

7) Hookworms, TSO and whipworms. I payed $7,800 for some worms. Call me a sucker. My insurance will pay for me to die from a fatal brain disease if I try Tysabri, but they will not pay for some worms to prevent me from needing Tysabri. I’ve read that people have gotten TSO covered on their flex spending account. I never got a doctor’s prescription for hookworms, nor was it from a pharmaceutical company, nor is it approved by the FDA. So thousands of dollars for some worms. Thank God for credit cards, before they reduced my credit to 0. The worms were worth it, but when we’re shelling out almost $10,000 for something that has lived inside of us and in the soil since the dawn of humanity, something’s gone very wrong.

8) Microscope, weighing scale, McMaster slides, and incubators. Because the FDA has ruled hookworms a drug, but will not pursue liscencing it in such a way that it could be covered like a drug, I have to figure out how to incubate the worms myself . This costs money and time! Where’s my worm equipment stipend? We should get bonus points for figuring this stuff out for other people, before the studies. Special credit for an artist with no scientific background. And educating my doctors. I don’t want an honorary diploma, I want the money it takes to earn one so I can pay for my damn microscope.

9) Let’s not forget the extra water, laundry detergent, and energy it takes to wash extra underwear. And the lifespan of said underwear is lessened from abuse. We need an extra underwear stipend. Do you panic when you are on the last pair? Do you have to go to a laundrymat and hide your laundry from fellow washers? Have you ever just thrown a pair of underwear away when you are caught out unaware that the coffee you shouldn’t have drunk has just kicked in? I once left a pair in the Museum of Modern Art in New York. I have such fond memories of shitting in my underwear while walking across the park for the first time! And then having to walk to the museum, wait for tickets, and find the bathroom eventually, realizing it was by then a hopeless cause. Since then, I’ve always kept a spare pair of underwear in my purse. And if you need Dipends at night, the humiliation of wearing a diaper in your 30’s should be worth something.

10) Let’s try not to mention the amount spent on Immodium over life. I could buy a second house.

11) And the co-pays to my psychologist lamenting the past. And learning how to live with the future.

12) How about work lost from the disease itself? I could have been an international spy, but I have Crohn’s disease. Instead I blog in the wee hours of the morning when I should be doing push ups and studying Arabic to prepare for my next case.

13) Let’s end on a lucky number. Maybe I’ll win the lottery and be able to afford endless soft toilet paper.

I am an artist, among other things, and I figured most people wouldn't appreciate a picture of the bloody placenta, so this drawing somehow captures the feeling post-miscarriage...

I am an artist, among other things, and I figured most people wouldn't appreciate a picture of the bloody placenta, so this drawing somehow captures the feeling post-miscarriage...

I always get from people, after explaining that I am using hookworms to control my Crohn’s disease, that I am very, very brave. I usually reply that it was scarier going to the oncology department of my local hospital and being hooked up to my first infusion of Remicade. Especially after almost dying from neutropenia caused by 6MP, after having tolerated it previously. There’s nothing like experts at UCSF shaking their heads, consulting with Cedars in LA and saying I was their first patient to react that way after doing fine with 6MP for years, and having been on it for months without issue. That was years ago, I’m sure there have been many cases since.

Kind of scews the whole percentage thing. I realized after that lovely episode that you either react to something or you don’t. It makes trying new things a little frightening.

Read the rest of this entry »

So, what is a day in the life of Crohn’s disease? It depends on how inflamed I am.

The day begins at 12 AM, when I wake up from a dream and feel the sudden urge to have a bowel movement. I pull back the covers, try to disentangle myself from my cat, black out as I stand, so I bend over partly and recover my sight by the time I get to the toilet. Diarrhea comes out, then a little gas, a little more solid stool. My ileal-cecal valve, in the bottom right quadrant of the lower abdomen, is hard and stuck. I lean my elbow against it and tilt forwards, trying to get the feces and gas trapped inside to move. It’s hopeless, I’m done. I use lots of toilet paper, and my hemorrhoids itch. The stars shine through the window.

I sleep again, then rise at 3:30. The above routine is repeated, only this time I read the new seed catalogue in the dim glow of the nightlight.

5:25 and I’m at it again. This time I was trying to find a toilet in my dream. I sat on one, relieved, but it was in the center of a town square, for everyone to see. Why the public humiliation? I wake up and run. My underwear is soiled again. More liquid comes out, followed by the rest of the mess, blood pooling across the top of the mound. It hurts. I itch. I flush.

I stay up and take my VSL pill, check my email. My ilium’s still blocked, but it doesn’t hurt so bad. I make tea, an almond flour waffle, watch the sun rise, interrupted 2 more times with more bowel movements.

Another hour and my family is awake. Breakfast starts with a flurry of obligations. I pack their lunches, prepare their schoolwork. Depending on the day, they go off to their class or snuggle on the couch and I teach them integers, spelling. I garden. They play.

I am tired by noon. The day is done for my body, but the black tea gets me through another hour. Tea after cup of tea. Peanut butter mixed with melted honey and unsweetened chocolate. Blended chicken soup. Yogurt shakes. I make pasta for my girls, sandwhiches, salads. I make things I long to eat but snifff instead.

During this time, a pee becomes a poo. I squat and mucus dribbles down. I never know if I should include these in the number of bowel movements I have a day when I’m taking the CDAI. All I know, is the toilet paper supply is getting low.

By 4:00 I am face down on the bed. If I’m lucky, I get some gas out and the hardness of the ilium is relieved for a while. My husband makes dinner. I feel useless. I sit at the computer, perhaps. I watch my children create.

I eat the things I must and watch them heap their plates with garden kale. Beans and cheese, fruit, my homegrown lettuce. I eat my soup, I smile. I enjoy their faces, I love my husband. Perhaps I talk with a friend. I take a hot bath. Forever long for health.

Perhaps I watch the sunset. The chickens go to sleep. The stars come up. I take my VSL and go to bed before my children. They wake me up and kiss me good night, my husband doing everything else.

And so, another day.

I went to church today. The sermon was on suffering. At one point, the priest turned and gestured to Jesus hanging from the cross, the ultimate in human suffering, he implied. Well.

I’m sure it must have been challenging, being the son of God and all, but I don’t think hanging from the cross depicts the ultimate in human suffering. Sure, you slowly suffocate, your ribs break. I’ll bet having a nail go through your hand isn’t fun, and hanging by that hand excruciating. I suppose after a few days of starvation, one starts to feel pretty bad. And all the while being taunted by your enemies must have been a challenge.

But Jesus didn’t have to do this for 20 years straight. He knew he was going to die, and the suffering would end. He didn’t have a lifetime of progressively worsening disease to deal with. He didn’t have pieces cut out of him, one organ at a time. He got to break bread and drink wine until the end. It isn’t written in the bible, but I doubt he had chronic diarrhea. He probably had worms.

This is one reason I’m not a Christian. Because I’m just not that impressed when they say Jesus died for me. I mean, that was very kind of him. But if he had lived to a ripe old age, suffered from some horrible disease the entire time – and touching his own sleeve didn’t work – then I would be more in awe of his sacrifice.

Jesus died to save my soul from eternal suffering. What do you do when the hell is now?

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