advice for a new member

[Eliza4]

my teenage grandson has been diagnosed with Crohn’s disease - further tests will be done this week to confirm the diagnoses.

What is the best advice you could give to mum and dad to help understand and deal with this?

Thank you in advance

Eliza

[Dalebury]

Hi ElizaSorry to hear your grandson has Crohn's, albeit yet to be confirmed. The best advice I can give as a sufferer of Colitis is to get as much information as possible, it's not always easy to deal with these illnesses from a personal perspective but be open to your friends and family as to how this condition affects you. Many trips to the toilet when you're having a flare up can be embarrassing but remember it's not your fault you have this illness. I've had Colitis since I was 20 and am now 70, true it has impacted on some areas of my life, but we have much more access to information today and treatment is so much better.

Be there for your grandson, give him time to express how he feels and let him know there is anything he can't discuss with you.

God bless you all and take care. X

[Eliza4 in reply to Dalebury]

thank you , this is very comforting

[Pte12 in reply to Eliza4]

Hi Eliza I was 11 when diagnosed with crohns my mum was amazing with me tell them when he is in the bathroom for hours my mum used to put my favourite worship music on being a Christian it really helped but most of all them to be there for him and he might not look poorly but he could actually be having a very bad day they just need to be there for him

[Crochet-hook]

Hi Eliza,

My son was diagnosed with Ulcerative Colitis 5 years ago now, when he was also a teenager, aged 17, so I know just how upsetting, worrying and scary it can be for a parent when your child is diagnosed with IBD. I've never felt so helpless as when my son was first diagnosed, having to watch him go through everything that that involved, and knowing there was nothing I could do to cure him of this awful disease and take it all away from him.

What I would say straight off, though, is that it does get better. The first 12-18 months after diagnosis, were probably the toughest in my life, but once the right medication was found to keep my son in remission, and the reality of IBD became part of our lives, things did get so much better. My son now leads a totally normal life, he graduated University (with a first class honours degree), began working straight after graduation in his chosen field of computer programming and is settled with his long term girlfriend, whom he met whilst at university 3 years ago. All things that I worried he would never be able to do when he was first diagnosed at 17, and his future seemed so scary, but I promise it honestly does get better. The second thing I would say, for me personally, is that it really helped to join a local IBD group. I started volunteering pretty quickly with my local network of Crohn's & Colitis UK, which not only gave me the opportunity to talk to other parents in the same situation, and to get the advice and support they could offer, but it also enabled me to start fundraising for the charity, which also helped me to feel less helpless, as it felt like I was able to do something, albeit in a small way, to help find a cure. Obviously, I know joining a group isn't for everyone, but I just wanted to say how much it helped me in the early days, and still does now.

I really hope your grandson's full diagnosis happens really soon and that he is already starting treatment for his Crohn's. Once those right meds kick in, he'll be so much better! If you ever have any more questions, please don't hesitate to ask.

Take care

Diane

[Eliza4 in reply to Crochet-hook]

thank you so much. This is very positive and helpful advice

[Valbaty54]

Hi Eliza, I can see you are in Australia. Is your grandson also there, or in the UK? You should be able to access the Crohns and Colitis UK website which has a huge amount of good information and documents to download and learn more about IBD. Best wishes, Val.

[Eliza4 in reply to Valbaty54]

Thank you, Val. We’re all in Australia and have found some useful resources.

[012703060610]

A little late to the game here....but I know how scary an initial diagnosis can be and at such a young age. First, it is good that there is likely a clear diagnosis. Many folks get miss diagnoses or simply told they have IBS until they finally get the colonoscopy or other procedure that says otherwise. I have microscopic colitis which took at least four colonoscopies to uncover as well as a paralyzed stomach (only found with a pill camera swallowed). I use this community for several of my physical and mental health needs as I always find great information. The real boost of data came from a site called stuffthatworks.health. You can search for Chrons and join the community. It's a bit different as patients go through questions on treatment plans, timing of symptoms, etc. It's a massive database collecting direct from patients. I have another autoimmune condition that I wouldn't have found the right treatment without being on that site. I am currently on one immunosuppressant, prednisone as needed. After being on the other site and reading that the UK has been using something called LDN for decades, I took it to my Rheumatologist. Four weeks into this treatment, I don't need the toxic cancer med I take for immunosuppression. My gut is much calmer...not perfect, but way better. LDN is one of the top treatments for UC and Chron's. I suggest this other site to collect data. There are nearly 10k patients with Chrons and the site consolidates data for you to review. Best of luck and everyone is here to support!