For A Girl Recently Diagnosed With Crohn’s Disease

The daughter of close friends just found out she has Crohn’s Disease. She’s suffering a lot right now, and I know exactly what she’s going through. This post is for her.

Mood music:

Hello, my young friend. I’m sorry that you’re hurting so much right now. I was diagnosed with Crohn’s Disease when I was around your age, and spent many weeks in the hospital between ages 8-16. It stinks. But if there’s one thing I’d like you to remember after reading this, it’s that it WILL get better.

I experienced all the things you are now — the massive loss of blood, the knifing pain in the gut, sleepless nights in the bathroom, and more blood.

A couple times, I’ve been told, the doctor’s came close to removing the colon. Too much of it was under siege and they didn’t know where to start in terms of targeting it. But it never came to that.

The pain was pretty intense. I really don’t know how my parents were able to get through it. I think it would cause me more anguish to see one of my kids suffer than to go through it myself. That had to hurt. Especially since they lost another child along the way. It also couldn’t have helped that I would be in the hospital for six-week stretches in 1978, 1979, 1980 and 1981.

I mention this because you should know how hard it is for your Mom and Dad to see you hurting. They’re new to this Crohn’s thing, and they will worry endlessly about what they are doing for you and whether it’s the right thing. Be patient with them if you can. But if you need to yell at them once in awhile so you can cope, go ahead. That’s what parents are for.

As you will probably soon discover, the most popular drug to treat what’s making you sick is Prednisone, which comes with a long list of side effects. Your face might get puffy and you’ll want to eat everything in sight. But you’re a strong kid and you can handle that.

A lot of people helped me survive a childhood of brutal Crohn’s Disease: My parents, great doctors, school friends who helped me catch up with my schoolwork and rooted for me whenever I got out of the hospital, and a great therapist who helped me sort through the mental byproducts of illness.

I think you’re going to get through the current attack and that you will be able to move on to a better life. Again, I lean on my personal experience.

I’m probably one of the luckiest Crohn’s patients on Earth. The last bad flare up was in 1986 and I haven’t had once since. I still go through frequent periods of inflammation, but nothing that requires drugs or hospital stays. The colon is checked out every other year to make sure the layers of scar tissue don’t run wild and morph into cancer.

Had the doctors removed the colon when I was a kid, I think things still would have worked out. I would have learned to live with it. Whatever you have in front of you, I think you can make the best of it and push through.

Be strong and keep the faith, my young friend. I hope you feel better soon.

–Bill

P.S.: Here’s a picture of me the year I was diagnosed. I’m the kid at the very back, right in the middle. As you can see, Crohn’s Disease couldn’t kill my smile. It won’t kill yours, either.

Hey, Kids! Here’s Something For ‘When Your Brain Gets Stuck’

I just got a book in the mail called “What To Do When Your Brain Gets Stuck: A Kid’s Guide To Overcoming OCD” by psychologist-author Dawn Huebner. I asked for a copy so I could review it, but it might warrant more than one simple review.

Mood music:

Someone I’m connected to on Facebook got a copy to help her OCD-suffering child. Since the upcoming relaunch of THE OCD DIARIES will have an expanded section for children’s mental health issues, reviewing this seemed natural.

The book, published by Magination Press with illustrations by Bonnie Matthews, guides kids and parents through cognitive-behavioral techniques used to treat Obsessive Compulsive Disorder. I’ve learned a lot of techniques in therapy over the years, but my first impression from this book is that a few more simple tools could have helped me nip this disorder in the bud BEFORE I reached adulthood.

From the synopsis:

Did you know that people have brain sorters that keep their brains from getting cluttered with unnecessary thoughts? Sometimes these brain sorters get mixed up, though, holding onto thoughts that frighten kids. If this has happened to you, if it’s hard for you to feel safe or sure of yourself because scary thoughts have gotten stuck, this book is for you.

Two-plus years into this blog, I’ve never been able to explain it that clearly. I came closest in a post comparing the brain to a car engine.

What To Do When Your Brain Gets Stuck guides children and their parents through the cognitive-behavioral techniques used to treat Obsessive Compulsive Disorder. This interactive self-help book turns kids into super-sleuths, able to recognize and more appropriately respond to OCD’s tricks. Engaging examples, activities, and step-by-step instructions help children master the skills needed to break free from the sticky thoughts and urges of OCD, and live happier lives.

First impressions:

–The illustrations are terrific. Cheers to Bonnie Matthews. She managed to give OCD a face in the form of this little furry guy who resembles the tribbles from Star Trek — with legs. When you can put a face on your nemesis, it’s easier to fight him.

–Huebner scores points with me by setting the exploration of OCD up as a game. Right off the bat, if you can make something look like a game, dealing with it becomes less scary.

–She covers several coping techniques that deserve more attention than I could offer in one post.

I’m going to approach my study of this book from the perspective of a kid who lacked the right tools and allowed OCD to follow him into adulthood.

The author takes kids on an important journey, and it seems fitting to show their parents what happens when their little OCD cases miss out on that journey. I’m the guy who went through puberty and into adulthood with that insidious fur ball following me around. It grew up with me and got a lot uglier and menacing than the little guy in the book.

I’ll look at the different symptoms the author lays out and explain how they manifested themselves in the younger me. From there, I think I’ll be able to tell you how this book — though designed for kids — can be a life-saver for grownups, too.

Beyond Boing Boing: Xeni Jardin Inspires Me

I’m a long-time reader of the Boing Boing site and have always been particularly fond of the work of editor Xeni Jardin. Her openness in talking about her breast cancer makes me appreciate her all the more.

Mood music:

Jardin’s greatest strength as a writer has always been her ability to focus on the human side of technology, and she was doing just that in early December when she live tweeted her first mammogram. She poked fun at a procedure that scares the hell out of most women who have one for the first time, saying, among other things:

Comparing her experience to Katie Couric’s TV-documented colonoscopy some years back, she said:

At the end of this string of tweets came this:

She filled in the blanks with a column later on, in which she described having an ultrasound:

Dr. Kristi Funk is her name. How can anything go bad when the doctor’s name is Funk, and there are so many funny things to tweet? She told me to lie down, put some goop on my chest, and waved a wand through the goop. The waves appeared on a screen. It looked like NASA video, something the Mars rovers might transmit home to a JPL engineer searching for distant water.

She showed me a crater in the waves, a deep one, with rough edges and a rocky ridge along the northern rim. Calcification. Badly-defined boundaries. Not the lake we’d hoped to find.

“The first thing you’re going to learn about working with me is that I’m a straight shooter,” Dr. Funk said. Her voice was steady and reassuring.

“That’s how you know you can trust me. I’m going to tell you everything, and I’m going to tell it to you like it is.”

I forget the rest of what she said, but it added up to this: the crater was cancer.

As the words sank in, the Mars rover crawled over another steep ridge, out of the crater and into a valley, and found one of my lymph nodes, larger and darker than the others. A rocky prominence. A sentinel node. No water there, just fast-dividing cells that kill.

I believe that we are looking at breast cancer, and that it has spread to one of your lymph nodes, she said. 

Since then, Jardin has taken her readers through every step of her treatment experiences. She started a Twitter exchange the other day about how to wake up veins that have collapsed from too many IV needles. Having suffered through the collapsed veins as a kid when Crohn’s Disease made regular IV drips necessary, I knew how valuable this kind of exchange was.

She has tweeted about the sickening effects of chemo and not being able to taste her coffee in the morning.

She’s done it all with a lighthearted demeanor that makes the suffering accessible and less scary. For us, at least.

I’ve always had enormous respect for those who share the experience of a medical procedure many consider embarrassing. Many women are reluctant to get their boobs flattened into pancakes, just as I’ve never enjoyed the frequent colonoscopies I have to have because the childhood Chrohn’s Disease makes me a high risk for colon cancer in middle age.

But when someone shares the experience, it becomes less embarrassing and, more importantly, less mysterious and scary.

That’s why I’ve always respected Couric. Her on-air colonoscopy happened before Facebook and Twitter, where people share so much that nothing is surprising anymore. She did it to raise awareness after colon cancer killed her husband.

It made the procedure a lot less scary for people.

Jardin has done an admirable job making breast cancer treatment less scary. I think that will inspire a lot of women to get early mammograms that may well save some lives.

This post is to thank her and encourage my own readers to tweet her some words of support as she continues the fight. Her Twitter handle is @xenijardin. Thanks.