Question about telling people you have Crohns

[Lam123]

Hi everyone,

I have a 6 year old son, I'm not sure when to tell him I have crohns and what exactly to tell hm. He knows I can get a upset tummy at times and I can't eat certain foods, but I haven't gone into an detail. The last time I had to stay in the hospital he was too young to remember. Any suggestions? Anyone with experience with this? I just want to do it the right way, he's a very sensitive kid, so I don't want to upset him or worry him.

Thanks!

 

[ronroush7]

That is a tough question. I was diagnosed the same year my son was born and it seems like my son has always known.
.

 

[Teacrumb]

I don't have experience with this necessarily. I have Crohn's, but no kids. However, my mother was very sick when I was about your kid's age. The scary thing for me was seeing how sick my mother was and not understanding. My mom would have to lean on furniture for support, spent weeks in bed on IVs, in and out of hospitals, that kind of thing. And I didn't understand what was wrong, so my imagination came up with all kinds of possibilities. My mom didn't even explain it to me until I was an adult because she thought she was protecting me, so I spent my entire formative years not understanding why she didn't feel well. It just kind of hung over my head when I was a kid.

I don't think the word "Crohn's" will have any meaning to him. You can tell him, but he will probably also tell everyone he knows that his mommy has Crohn's disease. So be prepared for that I just have memories of talking to all my teachers about my mommy's "knee problem"

I think it would depend on how visible your symptoms are. If your kid can see that you are sick, you need to explain things to him in a way that reassures him. Kids can tell when you are deteriorating or not feeling well, and when you are hush hush around them, their imaginations can run wild.

Otherwise, I just wouldn't hide it. Don't act like it is a big deal, but explain things as they happen in a simple, reassuring way.

He will take his cues from you, most of all.

 

[Cross-stitch gal]

It would seem like your GI might have some kid type book ideas on that. Or, have some other ideas as to where to look on how to share it with your little one. I've searched Dr.Google to see if I could find anything helpful. But, all I could find was stuff on kids with IBD.

I think I'm going to page DustyKat to see if she has any other ideas for you. In the meantime, I think you've already been doing a wonderful job as it is. The sick tummy might be all he needs to know for the time being.

 

[Lam123]

Thank you all for the suggestions, very helpful.

 

[nitty]

I also think it's important to be able to talk to kids about poo anyway! Even before I got Crohn's, I have always tried to encourage my kids to notice what comes out of their body and to tell me if there are any changes in their poo.

Here in the UK we are notoriously prudish about poo stuff and bum stuff!! Many european countries have a far better cure rate for bowel cancer than us - not because they get less of it, but because they notice the signs and act upon them sooner. They even have toilets with little shelves in them for the poo to land on so you can check it before flushing it away! My kids thought that was amazing when we first went into one of those!

So perhaps rather than emphasising the illness side of things, maybe just being open about toilet habits and maybe then explaining that yours are a bit different because your tummy doesn't work properly would be a good way to go. Then he will grow up being more confident in knowing what is healthy and in case there might ever be a problem for himself.

There is also a funny kids book called 'The Mole Who Knew It Was None of His Business' which is all about a mole trying to find out who pooped outside his molehill by tracing down different animals and discovering how different all of their poos are.

Good luck!

 

[nitty]

Just to add: I have Crohn's Proctitis and have to go to the loo quite urgently about 6 times a day. I was explaining to my kids that poo doesn't arrive at the end in one big lump. It travels along in little pieces and then waits near the end for lots of it to collect and then tells you to go to the loo. But because of the inflammation, my body won't wait for it to collect, I just have to go whenever there is any there at all.

I tried to explain it also by likening it to a bus stop. People turn up one by one to the bus stop, then the bus comes along to take them all away together. But my people turn up at the bus stop and refuse to wait so each one gets there and hails their own taxi instead!

 

[Lam123]

Thank you so much for all the great suggestions, I feel so much more confident about talking to him and not to scare him.

 

[fuzzy butterfly]

Hi, I would personally say that I have got crohn's, not mentioning the disease part as that may worry him more.I think that just saying that means mummy has to use the toilet a lot more and may have to see the doctor more often than most people and may have to go to the hospital sometimes for them to help me feel better.
Best wishes n :hug :

 

[DustyKat]

:ghug:

This is one of the hardest things you have to navigate as a parent, when do you tell your child something and how much do you say? As his mum I think you will have an innate sense of what to say and at what level as you know him better than anyone.

Being a nurse I have always been pretty upfront with my kids when it comes to the human body and its many functions. I never freaked them out but didn’t sugar coat things either. I always found the best way to broach things with them was to take their lead, answer any questions they had and also ask them questions.

Okay, say your little guy says…

Mummy, why do you go to the toilet so much?

You say, Mummy has a something called Crohn’s and sometimes it makes me go to the toilet lots.

He may say, But why do you go to the toilet?

You say, Because the Crohn’s upsets Mummy’s tummy. Then if you can think of an example of someone else close to you that has something you can give as another example of how the body reacts to something and what name it has. E.g. Remember how Daddy always sneezes and his eyes water when the flowers come out in Spring? Yes. Well when that happens to Daddy it is called Hayfever. Or what about Nanna and her sore knees? She needs a stick to walk? Yes. Well Nanna’s sore knees are called Arthritis.

To me this line of reasoning often demystifies what happens to people when they are unwell or have ongoing issues. I would then take his lead, if he keeps asking questions answer honestly and at his level or alternatively he may be satisfied with what you said and move on. If you can convey an easy and open relationship about your Crohn’s then over time it should help alleviate any fears or concerns he may have over your health.

Here is a study regarding: UNDERSTANDING THE IMPACT OF
INFLAMMATORY BOWEL DISEASE ON PARENTS AND THEIR CHILDREN

http://www.york.ac.uk/inst/spru/pubs/pdf/boweldisease.pdf

Dusty. :heart:

 

[JaimeM]

I like what Dusty said. I plan on being pretty upfront when my son gets old enough. We already talk about poop a lot in my family haha (i'm also in the medical profession so body habits aren't really a taboo subject) But I guess I just plan on telling him I have a disease called Crohns and it makes mommy not feel good sometimes. I won't go into detail of the complications, but at least then he's not surprised either.... I think kids are more understanding and perceptive than we think. My son is only 15 months and the other day when I was throwing up he had his hand on my leg laughing at me. It was actually kind of helpful. Something else to concentrate on instead of wanting to fall over. lol

 

[Lam123]

Such great ideas! Thank you so much.

 

[2010mustang]

My son was 7 last year when i was diagnosed. I sat him down and explained what was wrong with me and how it would affect my health. He took it well but he is mature for his age too.

 

[my little penguin]

Books
http://www.ccfa.org/assets/pdfs/activitybookweb.pdf

Ccfa Ibd and me coloring book

Toliet paper flowers book more general to help kids explain to other kids
http://www.amazon.com/Toilet-Paper-Flowers-Children-Disease/dp/0929173473


For older kids
http://www.ccfa.org/assets/pdfs/ccfa-online-comicbook.pdf

My youngest was dx at age 7
He is now 12
It's not a one time conversation
Their ability to understand changes with age

Ds gave a presentation at school recently to the other 6th grader to explain what crohns is and arthritis

Part of crohns was explaining that he often felt like someone with the tummy flu
Except he wasn't sick
That his tummy /Gi tract was just trying to fix itself similar to when you get a cut or scrape in your hand . The body get red and forms a scab
The same thing happens with crohns .
But medicine stops the body from trying to keep fixing itself

A lot more details added for 6th grade but you get the idea

All we told Ds at age 7 was his tummy was sick
That is was crohns and the meds would help
And
That everyone has something

Good luck

 

[mish2575]

I have an appointment scheduled with my family therapist for next week. I was going to ask him this same question. I'll update you afterwards.

My kids are 4 & 6

 

[Lam123]

Thanks!

 

[fuzzy butterfly]

Hi mish. Hope it goes well n ye keep us in the loop hun. Best wishes :hug:

 

[mish2575]

Thanks. Will do.

 

[fuzzy butterfly]

:hug: take care mish