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:
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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
What a thoughtfully kind gesture! There’s a lot to be said about the human spirit and how powerful a giving spirit is and the impact it has on others! Beautiful and touching!
No offense, but most of this sounds like it would scare a kid….you start out with blood…lots of blood…dude, this sounds like it is about you, not your friend’s child, whoever this kid is, she doesn’t need to know how you suffered, or how your parents worried, or that they lost a child, or that you almost had to lose your colon. She/he needs to learn how to cope with pain, fear, and blood….lots of blood….I actually hope this is not a real letter to that kid….
Well, it is about me, in the sense that I’m relating to what she is going through now. That said, the post, like others where I made the message directly for a child, is for the parents as much as it’s for the kids. And in this case, everything I described about me is stuff this particular girl has already gone through (she’s just starting to deal with the hospitalization part now). In fact, this kid has it worse because she also has a malfunctioning liver, gallstones and inflamed ribs — on top of the Crohn’s, so I really don’t think I can scare her with what I went through. My main goal was to point out to her — and her folks — is that it does get better. Whether the girl reads the post will be up to her parents, in the end.
I do know a couple people who have lived with this disease, so I know how heinous it can be, not first hand, of course. I guess I made assumptions about your blog….When you say child, I don’t really know how old this child is, nor do I know what stage of the disease she is at….I DID assume this was new to her/and her family, I also took it as a literal “letter”, and not really a blog….something more private than another take on how hearing this news about your friend’s child, and you dealing with it turned into a blog….I kept thinking…this is her experience, not yours, but you were relating to her experience through yours. I apologize for being too critical. I like your writing, and your blogs……I guess I just saw the words child and blood, lots of blood on the same page, and flipped a bisquit.
Anyone who sees the words child and blood in the same sentence should flip a bisquit. Shows you have heart. 🙂
As someone with Crohn’s I would have been extremely grateful for a message like this! If she’s already in the hospital, none of what you said will be news to her. And her parents probably are freaking a bit. My youngest brother was diagnosed at 10 years old, about 5 years before I was diagnosed and I can remember how difficult it was on them. Any info/advice anyone has was welcome to them. I’m sure this girls parents will be thankful for your insights!
or biscuit…..
That was an amazing letter for that little girl. You are an inspiration, Bill!!
Bill thank you for this. This post led me to your previous one with the 3 photos and the one where you are the puffiest is exactly what my 8 yr old son looks like right now. He was diagnosed 6 weeks ago. He’s already so sick of drs and blood tests. We are simply praying that this first flare up is the bad one. and that it gets better from here.
Prayers for your son, Rebecca. I know he’ll get through this.
Bill – thank you. Your post did make me smile, however, not just cry. At first glance of your 1st grade photo, I did a double take – it looks exactly like mine. I was a few miles away, but I guess all little kids in metro-Boston had the same hair & clothing styles in the mid-70s.