A Writer's Life Interrupted #crohns #crohnsdisease #ibd

Even children are susceptible to  Crohn's disease and it breaks my heart. At my age, when maturity is supposed to rule, coping with the manifestations is difficult enough. I can't imagine a child having to suffer through it.

At best, Crohn's is a journey of self-discovery. It forces you to look inward, to study how your body works, what it likes and doesn't like. The disease makes you pay attention even when you don't want to.  I'm really good at paying attention to others, but I kinda always sucked when it came to myself. Now I have to care for myself if I want a decent life. When you're a kid, you don't even think those thoughts, but like children with diabetes you learn fast.

The first time I remember having an episode was when I was fourteen, though I did manage to miss almost my entire year of second grade due to a recurring fever that no one could figure out. The doc decided it was allergies and that was that. Was it Crohn's? We'll never know.  I do know it was the year after my father passed away so it's quite possible stress had activated a nasty little gene. I do remember the stomach aches. After that, my symptoms would pretty much come and go. Generally, once a year I'd get really sick, but then it would clear up after a few days.

At thirty-two I lost 45 and some odd pounds in just a few months. Kaiser said it was anxiety--panic disorder. I believed them and since talking about diarrhea was so, so, well, disgusting, it was not on my priority list to share with my doc. Fortunately, the flare cleared and I went on with life. Until my 50s when I was hit with a flare that nearly wiped out my entire digestive system making the diagnosis a piece of cake for any gastroenterologist.

It is different for children with a severe form of the disease. Because of  malabsorption issues they don't grow as they should. They suffer not only the effects of Crohn's but self-esteem issues as well. It takes a strong family unit to help a kid with Crohn's. Which brings me back to this entire post.

I'd like to give a hat tip to those mothers and fathers who struggle to help their children. It cannot be easy listening to their babies cry when their tummy's hurt. It is not for yourself that you check each test, each word and nuance that comes out of or spreads across a physician's face. My biggest fear is that I have somehow passed this down into the next generation. I cannot imagine watching my babies suffer, but many parents do. I have been following this one woman who has TWO children with the disease. If there are awards given out for caretaking, she deserves one.

Lest I get too maudlin here, I do have some good news to share. I have taken up juicing and grinding everything I eat and today is the best I've felt in months. I'm one week in after a pretty horrendous last few weeks. I haven't given up on the SCD diet and do not eat carbohydrates, (except for fruit) I'm just giving my guts a break to let them heal and they seem to like this juicing thing.  After a few weeks, I'll give solids a try again.

On another note, I thought I'd share with you some comments people have made to me that I found particularly funny. I hope you enjoy them, too. 

1. Before being diagnosed with Crohn's disease, I went to my doc to talk about the diarrhea thing. For over a year I had struggled with a bizarre sickness that would have me vomiting followed by diarrhea. At first it was once a month, then it was once a week, then it was pretty much every day. Unfortunately, when I got to the office my doc was out sick so I saw another physician.

Him: Why are you here?

Me: I have really bad diarrhea. Sometimes I'm really sick. (Yes this was an understatement, but heaven forbid if I sound dramatic. I have family (and friends) who have often accused me of being, um, overly emotional.)

Him: What do you do? What are you hobbies?

Me: I write.

Him: Oh, then, that's easy. You're gluten intolerant. You're sensitive. Let me get you a diet.

And with that he was out the door. By the time he returned, I decided not to tell him about the blood. That would be overkill. I took the diet and went home, showing it to my husband by tossing it across the kitchen only to watch it float to the floor. Even I knew my problem had nothing to do with gluten. So, I let it pass, making myself sicker in the process.

2. But you don't look sick.

There's a good one. I mean, sometimes I look sick and sometimes I don't. My husband says it shows on my face, but I'm pretty sure that's just irritation he's seeing.

3. Oh, and another good one. Home on a Saturday, my grandchildren visiting, I didn't feel well enough to get down and play with them. My then five year-old granddaughter came up to the couch where I was resting.

"Hi, sweetie,"  I said. "What's up?"

"Can you come play Trouble with us?"

"Not right now, Gramma needs a little rest. She's tired."

"Daddy says you'll  be sick for the rest of your life."

"That's not entirely true, but I don't feel well right now."

A look of shock, a gasp of air, one step backward. "Is it catchy?"

3. And lastly, I'm in the hospital, sicker than a dog. A nurse comes in, studies me, and says, "You don't look like you have sepsis."

OK, like how is someone supposed to look?

I hope you got a giggle or grin and would love for you to share some of your funniest moments with me. Hoping you have a wonderful week.

(((hugs)))

Louann

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