I have Crohns and my daughter has issues too

[TammyR]

I wasn't sure how to title this thread but I'm looking for some advice.

I have CD as per my signature below. I was tested for Coeliac as part of the CD diagnosis but the blood test didn't indicate it.

My 16 year old daughter hates bread, says it makes her feel sick and hasn't eaten it for 3-4 years. She occasionally has crumpets which don't seem to affect her. She doesn't have a lot of dairy products for the same reason.

She doesn't have diarraeah though so I've never really wondered about her. At one stage they said she had a water-borne parasite so she was taking something for that which eventually got better but she's symptomatic again. "Feeling sick, nauseous but not actually vomiting".

I'm wondering whether I should start her on the testing route through my GI. Do any of you have children with symptoms kind of the same as yours but not exactly?

 

[ronroush7]

Not sure of an answer. I am going to tag Maya 142 ,Clash ,my little penguin

 

[eleanor_rigby]

I have Crohn's and my dad has UC. We are totally different in terms of symptoms, location of disease, age of onset of disease, severity, treatment, everything!

 

[Ozboz]

I have Crohn's and my dad has UC. We are totally different in terms of symptoms, location of disease, age of onset of disease, severity, treatment, everything!

I'm the same but mine started as UC then got rediagnosed with crohn's-coliti's
I got diagnosed at 24 just before I turned 25 my mum got diagnosed with UC in march of last year 55 she has had similar symptoms to mine but some are completely different

Her uncle also has UC and was diagnosed n his 60's but achieved remission and is staying there

 

[my little penguin]

You may want to post in the parents section
You will get more parent responses

No family history for ds
But I can say kiddos tend to have very different symptoms than adults when it comes to Crohns
And unlike adults the type of disease they have and locations
Grows and spreads and changes with time
Most kids start inflammatory
And then switch to fistulas /strictures etc...

It's very tricky with a kid
Good luck

 

[TammyR]

I'm really torn and unsure whether to start getting medical advice for her. She dreams of dancing on cruise ships and I don't want her to have investigations or a diagnosis which might affect her ability to work overseas and pursue her dreams. Hmm....
We currently manage her 'sickness' with changing diet and nausea meds (rarely but if needed).
I realise though that if she has something wrong then we need to address it but I just don't want to start something that feels like a cascade of intervention while she's fine 99% of the time.

 

[my little penguin]

The thing is Crohns is silent and can be doing damage without major symptoms
And whatever is causing her issues is still there even if she doesn't have a official dx.
Simple tests like blood work
And fecal caloprotectin can be a start
Not invasive and can note if there is inflammation present

But honestly letting your GI look her over and dertermine if there is a need to even be concerned
There may not be
We went down the path with Ds sibling
Lots of worry but that was quickly put to bed
No signs of Crohns
And another easy issue that was very fixable was found
So while scary
Having a GI review the case is key

Good luck

 

[eleanor_rigby]

I'm really torn and unsure whether to start getting medical advice for her. She dreams of dancing on cruise ships and I don't want her to have investigations or a diagnosis which might affect her ability to work overseas and pursue her dreams. Hmm....
We currently manage her 'sickness' with changing diet and nausea meds (rarely but if needed).
I realise though that if she has something wrong then we need to address it but I just don't want to start something that feels like a cascade of intervention while she's fine 99% of the time.

If your daughter has Crohn's disease, burying your head under the sand and pretending she doesn't to avoid a diagnosis is the absolute worst thing you can do and is the opposite of what is in her best interests. What if she has Crohn's and suffers a medical emergency while thousands of miles away on a cruise ship? Crohn's disease complications can be life-threatening but can be avoided with proper treatment and monitoring. There is no reason why it should stop her dreams of dancing on a cruise ship. But if she suffered a perforation or a blockage on a ship and isn't able to get to a hospital for emergency surgery in time, well that could stop everything.

It's entirely possible she doesn't have Crohn's at all, but if you have your suspicions why gamble with her life?

 

[Maya142]

I agree - Crohn's is difficult to diagnose because it can manifest in so many ways. Some kids have bloody diarrhea and stomach pain. Others just have abdominal pain. Others, like my daughter, have constipation. Some kids have NO gut symptoms and only have problems with growth and development.

It REALLY varies a lot and it's important to get her checked out so that you can prevent damage to her intestines.