Any experience of Crohns diagnosis in a teen?

[Emptyingthenest]

My DD who is 15 just got diagnosed with suspected Crohns (based on GP’s interpretation of her blood and poo samples, we have been referred to the hospital but not seen a specialist yet). Will she need invasive tests to confirm or will the hospital just say it’s Crohn based on the same blood and poo tests?

I am shocked as she has never seemed that ill. We got tests for frequent diarrhoea, lots of recurring mouth ulcers and headaches but she’s never had stomach pain which I thought was the main symptom of Crohns. DD actually has a very active life and her diarrhoea etc doesn’t impact too badly on that. Could she stay this well with it or is it inevitable that she will get flare ups throughout life? Can we manage this with diet or will they need to give her steroids and stuff? She’s very image conscious and I think steroids would be really hard on her if they caused a puffy face etc.

The GP keeps saying she’s very under weight but I do not get that as she’s BMI 18.6 which is in the healthy range (just) and she looks like every other 15 year old girl. Does she need interventions for that weight?

thanks for any experience people can share.

She will almost certainly need a colonoscopy (camera examination of the bowel), likely done under sedation. It's not nice to think about but generally they're well tolerated.

Regarding weight it's hard to say, you may well find on treatment she absorbs nutrients better and stabilises at a higher weight. Is she having periods?

I would wait until you've had a diagnosis and seen specialists before worrying about side effects of specific treatments. There's a lot to take in but the teams are usually very good at presenting info to teens and parents, no question is too big or too small.

She will need definitive tests as , after all, it is a lifelong condition and , if present, will need the correct and best treatment. She will probably have an endoscopy and colonoscopy carried out under anaesthetic at the same time if the gastroenterologist is suspicious of inflammatory bowel disease. The aim of treatment is to get it under control and there are many options now .

Thanks so much for your reply. She had her first period 2 years ago but has only had 4 since then. Could that be related?

Having said there are options the choices will be made by your specialist .If it is crohns , living with the symptoms is not a good option as the disease can run away with itself and cause serious illness. It will need subduing. If she needs steroids , which is not a given, it is likely to only be for weeks and that won't bring with it the side effects that you are thinking about. You should concentrate on getting a diagnosis first and then on making her well.

Only having scanty periods is not uncommon at first but it could be due to her weight and for the sake of her bone density in that case needs remedying.

Thank you. We will definitely concentrate on the diagnosis. I hope the referral is quick. I forgot to ask how long it will take. The GP seemed pretty sure given a lot of her bloods are off, inflammatory markers up, anemic, liver results off, some protein was present in her poo. I really thought it would be coeliac as that runs in the family but he was pretty sure it’s not that.

I was diagnosed at 16, following a colonoscopy. Not a medical professional but if its not painful its more likely colitis than full blown Crohns. The good news is there is a move away from using steroids to things like Mesalazine, which isn't too bad for side effects. She will always have some awareness of the condition but I'm in my 30s now and have only ever struggled with major flares three times for a few weeks each. Keep a close eye on her if she is worried about image as at certain times weight can fluctuate (depending on how well she is) and lead to quite disordered eating to maintain the same weight.

That’s really interesting that colitis is different to crohns and also to UC. I have a lot to learn. And thanks for the tip about keeping an eye on her eating, I will do that as she definitely likes her body at the moment and I think would find it hard if it changed a lot.

Re her weight, the adult BMI scale shouldn’t be used for under 18’s.
There’s an nhs one for children online but I doubt its reliability as it still considered my dd a healthy weight when she was very unwell with anorexia (bed rest, on point of hospital admission, couldn’t walk upstairs unassisted, no periods). The royal college of paediatrics weight for height charts are what her medical team use, her target being the 50th centile weight.

I have 2 kids with Crohn’s. She will definitely need colonoscopy and endoscopy for diagnosis. Children have these under general anaesthetic, but gastro waits can be pretty long (well all specialities). With the right treatment she can have a full and active life but it is really important to get treatment to prevent long term damage unfortunately it can’t be controlled with diet alone. Steroids only used for short period of time but often with kids with crohn’s a liquid diet is the first line of treatment. Harder to do but less of the side effects of the steroids.

Hey,

Im 28, diagnosed at 8 but suspect I’ve had Crohn’s since 2/3. I can definitely relate to your daughter and the image conscious teenage years.

Ive had every procedure and medication available on NHS and ultimately needed an emergency ileostomy/stoma bag aged 21 - the last thing I ever wanted but the best thing that ever happened and which changed my life, I’ve been in complete remission ever since.

Prior to that, steroids were the only thing that made any positive impact on my Crohn’s symptoms, but the moon face and various other side effects definitely traumatized me. At the time I was 8-16 so had no choice from my parents/doctors but to take them and i absolutely hated it and wouldn’t wish it on my worst enemy.

i personally believe the idea that you can manage crohns with diet is a complete myth.

she will likely need a colonoscopy and other tests. In terms of how this will affect her life - it’s hard to say but a good chance she will have many flare ups throughout her life which will require medication or surgery to control.

My best advice would be that ‘worst case scenario’ I.e. full removal of intestinal tract and stomach bag is actually not bad at all. Frankly I wish I’d had it done at the beginning and not had to endure all the medications and procedures. It gave me quality of life I’d never experienced, I’m engaged, have children and overall a wonderful life. When I was younger and dating, no guy was ever bothered by it (and if they had been it would have been a reflection on them anyway). I can still wear bikinis (high waisted), and everything else under the sun. My Instagram is @ emmamurison - you’d never know I have a stoma bag.

Feel free to message me if you want to discuss any further x

My DD has Crohn's colitis (which just means her entire colon gets inflamed). Hers is severe when in flare, but strangely pain has never been a major symptom for her. Diarrhea, anemia, fast heart rate, generally bleargh, fevers, yes - but no consistent belly pain.