Feeling overwhelmed with Ds's Crohns diagnosis

[MgW1]

My son has been diagnosed with Crohns Disease age 9. He's started steroids this week which has been stressful getting him to take so many , having to crush them up into fruit juice. This has lead him to getting upset asking 'why me'. We then have to see the consultant again in a few weeks to discuss an MRI and long term medication to try and keep it supressed. I just feel worried about his future , I have know a few people over the years with this at varying degrees. Anyone else been in this situation with a child with this diagnosis or anyone diagnosed in childhood? How have you coped with it ? I just think OMG what of he ends up with a stoma ? I'm scaring myself at the moment!!

Nothing wrong with ending up with a stoma. If that’s what he needs to be as well as he can be then he’ll learn how to deal with it. My brother has one and does everything he wants to with it.

DD has crohns, You will be amazed how quickly the drugs and other procedures become part of your normal routine and "just something you live with".

It seems overwhelming at the moment but it will become less stressful as time goes on, believe me.

My SIL was diagnosed in childhood. It was very tough for her but it’s pretty well controlled with medication. She ended up becoming a doctor because of all the experiences she went through as a child.

My DH has crohns diagnosis for over 12 years. He initally had a course of steriods, started some immnospressants caused awful joint pain, changed to another which worked well. He stayed on them for 10 years, 3 monthly blood test and weight in. After a delayed due to covid colonoscopy he was declared to be in remission and stopped meds. After an unrelated illness requiring a huge amounts of antibiotics and other meds the crohns was back - he knew it would come back at some point. He is back on the same immnospressants, with 3 monthly weigh in and blood tests.

I was diagnosed with Crohn’s disease in my early 20s so I can’t comment on the childhood aspect of this.

What I would say is that there is a huge amount of really good medicine available now that can help control symptoms and help sufferers to keep in remission for long periods of time.

The difference in treatments and medicine available now compared to 20 years ago is phenomenal. Crohn’s doesn’t also mean surgery.

if you want more information l, I’d join the Crohn’s and colitis facebook group. They also have a helpline and lots of information.

its very overwhelming at first, but you now have a diagnosis and steroids and hopefully a long term meds plan soon.

good luck to both of you.

Hannah Witton is an online creator who was diagnosed with ulcerative colitis at about 7. A lot of her content is really useful and she’s done some work with Crohns and Colitis UK

Space giving the steroids over 15-20 minutes, with a chocolate button, juice, or whatever small treat he likes in between 'portions' to make it more palatable

Join
uk parents of kids with IBD on Facebook.
i wish I found it earlier. Lots of support and information from parents who have actually been at the coalface.

I have crohns, was diagnosed as a child and also have a stoma. Am seen regularly at st marks in Harrow and have it quite severely (never been in remission and numerous surgeries)

Happy to answer any questions but honestly it is mindset and working out what works for you. You sound like a fab mum and a great support. Nothing was really known about Crohn’s when I was diagnosed and only as an adult (and having a bag) have things got better for me.

Thanks for your replies 🙂
Hes been on Azathioprine for 2 weeks and seems to be having a reaction. My DS is chilled and taking it in his stride .. I'm the one who is an emotional mess sometimes 🙄
IBD nurses are very good so will see what next step is regarding his medication 🙏

DD was diagnosed with ulcerative colitis at 6 (now 10) and has had a lot of different medications to try and get it under control. Currently she has Adalimumab injections and started on Azothioprine in November but has not been tolerating it well and may be moved onto Mercaptopurine.

Its a huge worry as a parent when you read up on all the side effects and drive yourself crazy (I manged to convince myself that she'd developed anaemia last week and rocked up at the children's hospital). DD on the other hand is nonchalant and even jokes about it now but had a lot of "why me" wobbles at the start.

Keep up with the meds and have the tests and see where you go from there, there's no point catastrophizing at this stage as there are so many more treatments available now than even 10 years ago and they'll work hard to find the best combination for your DS.