Hi,
It’s looking like our 15 year old daughter may have Crohn’s Disease, currently in hospital awaiting confirmation.

Does anyone on here have a child with this disease or have it themselves and if so how do they manage it.

Cheers

Have you explored fully a gluten or casein intolerance and completely dismissed it? I know a lot of people who were diagnosed with Chron’s then later with Coeliac then back and forwards….

By fully I mean ignore the genetic markers….. (as they are not close to 100%) and actually done a whole month where she hasn’t touched* anything with gluten or casein ??

*I’m being literal on touched

I mean didn’t go on a bus or train without wearing gloves….
Didn’t eat ANYTHING that could have touched something with gluten ….(or casein)

Didn’t eat out at all.… unless packed yourself….
Didn’t eat anything LABELLED Gluten Free …..

This might seem very extreme and its not how I’d suggest living full time.just long enough to be sure.… unfortunately that’s a fact of life if she does have an auto immune intolerance….

You get a coffee for example and the person who served it has touched a pastry…. later you touch your lip or touch some food….

This is more than enough to give you the symptoms …. but at least you are then sure what you are dealing with.

Diagnoses of Chron’s or Coeliac are great for doctors but less than a handful in the UK actually really understand the above….. (nearly all are probably in Nottingham) but they are not really that useful to the sufferer in that they are labels …

It’s just slightly more complex … but the law says that for something to be labelled “Gluten Free” it MUST contain SOME gluten…. (the complexity is or gluten must have been replaced)

You can’t legally label a carrot as “Gluten Free” … (Yes that seems bizarre but that’s how it is)

How this is applied varies, Danone refuse to comment on their yogurts for example…. whereas other manufacturers illegally label as “Gluten Free” …. and no-one prosecutes them so you are basically left with a meaningless “Label”

This isn’t even counting things like contamination on production lines….

Its a crap shoot (pun intended)

What Steve said.

It’s very hard going properly gluten free, may also pay too look st FODMAP diet as well.

Also NHS tests for gluten intolerance just coaresly say if your coeliac or not. My brother had some finer and expensive allergy tests done privately which showed what he is intolerant too.

It’s very hard going properly gluten free, may also pay too look st FODMAP diet as well.

I’d say that having any normal life it is all but impossible…. but it can be done for a month…

This is why the testing is so hit and miss because the True negative in the test is based on a sample where most of the test subjects were getting some …

The actual wording of the benchmark is something like “Levels below 200ppg were seen to cause no worse damage to the villi than subjects on a gluten free diet”

The point is most of those subjects were NOT gluten free if they had any type of normal life and the other clue is “no more damage than”

This definition suits the food industry who paid for the study….and perhaps the current situation cannot realistically be made that much better with modern food manufacture…. but the problem is that it gives flawed tests….

Food for thought…
If it is Chron’s then it’s not the end of the world. Symptoms and severity of the condition vary between people but most live a normal life.

I have it. diagnosed post emergency op for a ruptured small bowel and resection. Doesn’t really affect me too much, I don’t really get flare ups, cramps etc and am generally better than before the op (was investigated some years before the emergency op as I was having some stomach cramps etc but nothing found).

I take some meds to supress my immune system a bit so hopefully it will never be like before. But your daughters case may be different. I may have been lucky (unlucky) in that they cut the affected section of the bowel away.

Interestingly seems to be just white people in the developed world that get it. But there’s no definitive cause so it does make me wonder if some cases are triggered by certain food groups/environmental conditions.

I was diagnosed with Crohn’s when I was 16 – i’ve had some properly rough times (weightloss, malnutrition, 2 bowel resections and months chained to an NG feeding pump 12hrs a day), but often its also under control and i’m able to lead a normal* (some people disagree that endurance MTB racing is normal) active life.

Various different treatment options depending on the severity of the disease.

A dietitian may well be involved to start with, which may involve experimenting with a liquid diet (to give the gut a rest) and an elimination diet (to look for food that causes flare ups).

Various options for drugs too, immunosuppressants are pretty common, as are short courses of steroids to get a flare up under control quickly. More powerful biologic immunosuppressants are becoming more common in extreme cases, but not a first choice due to cost and risky side effects.

Currently i’m doing well combining Azathioprine and Humira, and the worst I have to put up with is that my visits to the loo are a bit unpredictable.

Update.
It was confirmed yesterday following a double endoscopy that she has Crohn’s, she now has a tube into her stomach and will be on fluids only for 8 weeks until her stomach settles down and then it’s just managing it.
One bit of good news the consultant said she will never feel as bad as she has over the last two weeks.

The consultant is right.
Chances are she’s tired and run down from poor absorption of nutrients – the liquid feed should fix that, and in the 2nd month in particular she should be feeling great.
It can be mentally quite tough though not eating for such a long period though.

Hope things go well now treatment has begun.

darrimc30, where are you based?

There’s a few support options for your daughter (and you). Firstly, hopefully your hospital has a good GI team. My hospital has a dedicated line to ring the GI nurses when you’re having problems and either are just looking for advice, or it can’t wait until you see your consultant. You should get plenty of good advice from them.

Secondly, there’s the Crohn’s & Colitis UK (CCUK) charity which has a help/advice line that your daughter/you can ring to chat to volunteers for support. They have a specific network for supporting young people and families (https://www.crohnsandcolitis.org.uk/support/support-for-families) although I don’t know how active it actually is, and will depend again on where you live. CCUK have a network of local volunteer groups who offer peer-to-peer support, awareness raising, fundraising, etc. Might be worth looking up your one, if one exists (https://www.crohnsandcolitis.org.uk/get-involved/volunteering). Finally, CCUK (and its members) are very active on Facebook (https://www.facebook.com/crohnsandcolitisuk/). In case you can’t tell, I used to volunteer for CCUK (wearing my hoodie at the moment 🙂 ), so feel free to PM me if you want any other help.

Good luck!

I too have crohns and after the initial trouble and diagnosis once I put enough weight back on to look normal no one who I haven’t told would really be able to tell.

I was diagnosed when I was about 25, so I possibly didn’t have any of the issues your daughter might go through but it’s worth getting involved with local groups who might be able to offer support etc. Oh and get her a RADAR key, I have a few (one in car, work bag etc) and they have saved my life (pants) many a time!!

Had never heard of a RADAR key, definitely need to look into getting one of those!

My former partner had Crohn’s and like above she was only really ill with it prior to being diagnosed.

Once diagnosed she took a low dose of asacol daily and got on with her life without suffering another flair up, her checkups usually lasted about 30 seconds as there was never anything to report.

The only foodstuff she cut back on was cheese/dairy and even then she still ate it in small quantities occasionally.

Had never heard of a RADAR key, definitely need to look into getting one of those!

Probably available on eBay, but CCUK I believe offers them free to members.

yeah – I got one free from a crohns support group (NACC I think from memory) and the others off amazon for a couple of quid

NACC rebranded/named to CCUK.

A friend has it really quite badly.

Get her a big stick to beat people with when they suggest that she’s just gluten intolerant* and not trying hard enough, this seems to be her pet hate.

My wife has had it from 18 and she’s now 45. I would agree that ” Diagnoses of Chron’s or Coeliac are great for doctors but less than a handful in the UK actually really understand the above..” My only advice is find a good set of consultants you trust and supportive.

Either way it isn’t the nicest experience and because other people cannot see it – they dont necessarily understand it.

Otherwise all the best.

Hi, yes my daughter was diagnosed at the age of 14 , now 16 and doing absolutely brilliant and in full remission . She did 8 weeks on medisip which was very hard for her and the rest of us. They said that she will never be as bad as her first flare up and they where right. She takes one tablet a day azathioprine and has to go every 8 weeks for a infusion .And i must say she’s never moaned once. Be strong for her i know its shite but its not the end of the world (it could be a lot worse ). Drop me a line if your daughter ever needs to chat mine will always talk or text her. ps keep off the internet its only bad news that you will read. Take care.

I’ve had it for over a decade now, though I’ve been very lucky that mine has always been relatively mild – mostly weight loss, cramps, + frequent trips to the toilet during flare ups. It’s responded well to medication, and I’m currently on humira which has kept everything under control really well. I’ve also never had any particular food triggers, and I eat enough gluten to make up for everyone who can’t have it 🙂

There’s a lot of individual variation – working out what foods and exercise and medication works best can be tough, but there are a lot of treatment options out there. Knowing what the problem is after a diagnosis will take away a lot of that uncertainty now you can face it head on.

Tough times OP, thoughts are with you.

My sister has it, came on quite late in life, hit her really quite badly for a while but she is back riding now (keen roadie) and manages it reasonably well. Another good friend had it quite seriously when younger, part of her intestine removed but has a normal life, raised three kids. Always been very thin though but active lifestyle . Like many issues there is a range of severity.

Had it for 40 years and the only thing I can’t eat are Onion Bhajis.

Thanks everyone for your responses, luckily I haven’t been an Internet researcher as yet as some of you say it’s all doom and gloom if you believe everything on there.
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Thanks for your offer of support your saying all the things that the medical staff are saying and my daughters surprised me with her pain threshold and attitude towards her situation, once we’ve got our heads around it I will take up your offer if that’s okay.

Following our stay in hospital there are a lot of kids in worse positions than us which is saddening.

No problem anytime and that goes for you and the mrs as well.

Hi just checking how your getting on ,all good i hope.