IBD Creative Outlet

Crohn's Disease Blues(Song lyrics) by Sue Hobbs

I'm sick of being sick and I'm tired of being tired,
Tired of being sick and I'm sick of being tired,
So I offered God a bargain -- said I never would complain --
Never moan and groan about PMS again
If he only would deliver this poor little lamb
From the oh-so-low-down Crohn's Disease Blues.

Blessed are those who cry unto thee,
For you shall comfort and set them free,
So I got on my knees and said, "Oh, pretty please,
Hear my oh-so-low-down Crohn's Disease Blues."

The Lord said, "Don't let the sun go down on your wrath,"
So I sat myself down in a hot sitz bath
And shouted to the walls -- shook the shower stall
With my oh-so-low-down Crohn's Disease Blues!

I read about Job and I read about Paul
And set off walkin' to ponder it all.
God said, "My grace is sufficient for thee,"
So I guess God's grace is enough for me,
But I won't hesitate when I'm in a sorry state
To shout out loud -- to cry out loud:
"I'm sick of being sick and I'm tired of being tired!
I've got the oh-so-low-down Crohn's Disease Blues!"

Crumb's Disease by Sue Hobbs

I'd been warned about the "why" stage.

"Mommy" Are you resting?"

"Yes."

"Why are you resting?"

"Because I'm tired."

"But why are you tired?"

"Because I'm sick."

"But why are you sick?"

"Because I have Crohn's Disease."

"But why do you have Crumbs Disease?"

"I don't know."

"I'll hug and kiss you so you can be ALL better."

"Thank you, Honey. Hugging and kissing makes me happy and that makes me feel better."

I love telling my child fantasies about fairies and nymphs, and I love teaching her about angels and miracles. I really believe in miracles, but the reality my child has to learn to live with is that even people who believe in miracles don't always get them, or at least not right away. Also that mommies who have Crohn's Disease don't necessarily get better and stay better.

We get sick for a while, better for a while, sick and better, sick and better.... Sometimes we rush off to the hospital, with little warning. Need I say that I resent this disruption of the stable environment I try to provide for my child? Even when I'm not actively sick, it's with us.

"Mommy, I'm eating peanut butter! You can't eat peanut butter because you have Crumbs Disease!"

My child is very verbal, and her vocabulary includes words that are very much a part of her reality, and which I don't want to be a part of even my reality. Words like Crohn's (well, Crumbs), sitz bath, bottom hurts, hospital.

"Mommy, I need to go to the park!"

"I know you do, Honey, but I have to stay home today."

"But MommEEE! WHY?!!"

"Because I need to stay close to the bathroom today."

That frown again. I consider calling a friend and asking her to take my child to the park with her child. It's a simple solution. Why not? Why indeed?

Perhaps because simple solutions take on complexities in the heart of a mother who doesn't want her child to think of her as the one who waves good-bye while someone else takes her off to have fun.

It's not that it's always like that. We do go to the park on my good days. I go for weeks, even months at a time, without needing sitz baths, and I've only gone to the hospital four times since she was born. On a good day I say, "It's no so bad, really."

But bad days come, like rain in February, wind in March, and taxes in April. We can bundle against the weather, and I can put off taxes as long as anyone. But when Crohn's becomes active, there's no warning or shelter, and to delay in dealing with it has uncomfortable, if not embarrassing or even dangerous, consequences.

My hang-up is that I know little girls want to be just like their moms, and I worry what kind of example I set, being such a droop sometimes. Yet if I have to take to my bed for a few days, is it a poor example for my daughter to see me taking care of myself? Of course not.

As for parenting, what's so terrible if sometimes all I can be is the person who reads, sings, paints, blows bubbles, and cooks with my child? That's fun stuff, too. It's great!

I can't really explain to a three-year-old about the sufficiency of grace, but it's never too soon to learn to be gracious about a trying situation, and if I learn it, she will see and try to be just like her mom.

"Mommy, are you all better now?"

"No, Honey."

"Do you still have Crumbs Disease?"

"Yes."

"When are you going to be all better?"

"I don't know. I'll probably always have Crohn's Disease. I'll be sick sometimes, and I'll be better sometimes. When I'm sick, we just have to be patient while I rest and get better." The frown again. "And when I feel better we can go to the park!"

She smiles. "Yeah!"

"Maybe you can go to the park with one of your friends today. Would you like that?""

"Yeah!! And I'll take my bucket and my shovel and my cars and play in the sandy part and swing and slide and climb on the way-up-high part and slide down really really fast and then I'll come home and you'll read me a story and I'll take my nap and then I'll wake up and -- Mommy?"

Whew! "What?"

"Why is it daytime?"

Crohn's, Doctors and Anger by Sue Hobbs

I've kept a diary since I was ten years old. When I was fourteen I described symptoms that are now very familiar and quite explainable. But for years, I was told my symptoms were psychosomatic, and if I'd learn to manage stress better they'd subside.

So many professionals told me so many times that my illness was of my own making, I believed it. I vaguely recall that invasive, yucky tests were mentioned years ago, but in such a way as to suggest that I really didn't need to endure them since the doctors were so sure they wouldn't find anything.

I learned to ignore my symptoms, and then I'd push myself. I had this running monologue in my head: "Feeling faint in the grocery store? Running to the bathroom every half hour? Pull yourself together! You must really be uptight. Better get counseling. And keep busy. Distract yourself from your problems and symptoms. No, don't call the doctor. He just thinks you're wasting his time. He'll humiliate you again. Oh, no! Anything but that!" I overloaded myself, wore myself out, collapsed in a heap, slept it off, and started all over.

My worst time ever with Crohn's was immediately after my child was born. I'd endured literally nine months of diarrhea, and the only thing that kept me going through my pregnancy was a daily half gallon of Gatorade. It was even worse after birthing. Nearly every day for a week or two post partum someone from our household called the doctor to report more problems. They decided I had a urinary tract infection and baby blues.

The symptoms eventually subsided to chronic mild diarrhea and fatigue. New motherhood was stressful, so I guessed I was making myself sick again. Then mothering a toddler was stressful. I could always point to some stressor to account for my symptoms.

When my daughter was two, I developed a perianal abscess. By then, I thoroughly doubted my interpretation of my body's signals. Discomfort went largely unnoticed. Moderate pain was just background noise. Severe pain was something to watch to see if it might pass on it's own. By the time I showed up in the emergency room, I was weeping, could barely walk, and couldn't bend over to remove my own shoes.

The abscess was lanced on the spot, but after a few months, it hadn't healed. The decided I must have a fistula, so they did a fistulotomy, and that didn't heal. They looked higher, farther and deeper. X-rays showed abnormalities in my bowels, and Crohn's Disease was diagnosed, seventeen years after those early diary entries.

It wasn't in my head, and I was relieved to know it! But I had questions. Why wasn’t I checked for this when I was first sick? Why was I blamed? Why was I humiliated? I really wanted to blame somebody for my situation, so I targeted my doctors. I'd been letting them intimidate me for so long I thought of them as the bad guys.

Somewhere I got the idea that doctors were walking books of medical knowledge, that they knew everything there was to know, and weren’t to be questioned. If bodies were sick, they had to be fixed by doctors, and my attitude and my lifestyle were irrelevant. Healing was something don to me, not by me. And as for emotion, that irrelevant too. Doctors didn't have emotions, and they certainly didn't want to talk about mine! Fortunately, my perceptions have changed.

I remember our old family doctor once patted me on the shoulder and said, "The truth is, Susie-Q, we just don't know all that much." He'd attended my birth, and twenty-three years later he came to the house as my father lay dying of cancer. He talked with Dad for a while, and as he left I saw the pain in his face. the man who was our doctor felt helpless, and he was grieving. Dad wasn’t just his patient; he was an old friend who was dying.

Doctors are people who used to kids deciding what to do with their lives, and so am I. they studied medicine; I studied child and family development. They doctor; I parent and write. Some doctors are parents too; I'll do something besides parenting later. Doctors goof up. Parents goof up. Writers goof up. People goof up. I goof up.

Maybe someday when I'm perfect I can tell my doctors they have to be perfect, too. Until then, I can grasp that doctors are overworked people who have the best of intentions. I can get angry that I wasn't taken seriously sooner, but I can also finish being angry.

I still have to be a "squeaky wheel" -- polite but persistent. As in all professions, not all doctors are the brightest and best in their field, and patients have to be alert. But I believe most doctors are doctors because first they're people who care . Lately I notice I actually like most of my doctors. I say, "This is the pits," and they say, "Yeah, it is." I say, "I hate this," and they say, "I know."

Maybe I'm dealing with a new brand of doctor. I know they're younger than most of my previous doctors, and they seem to have a more holistic view of healing. Perhaps we just communicate better, since we're of the same generation. Or maybe it's just that an abscess is straight-forward, impossible to ignore or explain away. An abscess is not imagined. An X-ray is concrete. Crohn's Disease is definable, scientifically verifiable.

Maybe nothing has changed. Maybe everything has changed. Maybe only I have changed. Whatever the explanation, when I finished being angry, I was able to get on with healing. After one and a half years, my fistula has just healed over, and I have more energy than I've had since before I became a mother. Life is good, and certainly too short to be spent angry.

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