Crohn's disease

My nephew was diagnosed at age 10, he's 22 now and doing well. He has a day of treatment at the hospital every two months and has been 'plateaued' for at least four years now. He is supposed to watch his diet but now he is away at Uni I doubt that he does. Some Crohns can be operated on although not in the case of my nephew. There is a charity called Crohns and Colitis UK. Why not google their website for more information? Hope your dgd does well.

Thank you - that is encouraging. I am glad he is doing well.

I'm so sorry to hear about your DGD's Crohn's. I would suggest she joins an online support group so that she can see how people manage it and share how she feels with others who are undergoing the same and can understand.

A close friends dil was diagnosed ten years ago, tough year but she’s absolutely fine now. Treatments Improve all the tine

Thank you for all the suggestions. It is a bit of a blow, as she/he also has gender dysphoria, is on the autistic spectrum and intermittently has another problem which is thought to be autoimmune. It seems such a shame that she/he has drawn the short straw in several ways - but she has lots of love behind her from us all.

Daughter of friend has Crohn’s - diagnosed about 20 years ago after becoming very ill and hospitalized. Since then, it seems mostly under control with anti-inflammatory medication. She now has 2 children - has occasional flare-ups, stress can trigger it, I think, but she leads a normal life and has a full time job.

Luckygirl your granddaughter sounds like mine, they have autism and recently been diagnosed with Erhlers Danloss syndrome. They haven’t been able to go to school for nearly three years.

GD is in hospital today for blood transfusion and iron infusion. They are losing so much blood and is very pale and thin. I am hoping this "top-up" will make them feel a lot better.

I just wish the NHS wheels did not grind so slow - they are awaiting various scans to check that there is no evidence of infection anywhere so that they can begin anti-immune treatments - but it is all just wait, wait wait. In the meantime they deteriorate inexorably.

My SiL has Crohn's. He managed it well by means of diet and meds. I don't know what the future holds but he's fit and well and busy with work.
I hope your granddaughter feels much better soon.

I typed 'manages' .

Luckygirl. My son was diagnosed with crohns when he was 8 after two years of symptoms that doctors dismissed. It can be a hard journey to get the meds right to get this under control. For us it took around 6 years after constant flare ups and hospital admissions. My son was started on a biologic, Infliximab when he was 13 and it changed his life around!
It wasn't all easy from there, but certainly far better than before.

My son is now 22, in a full time job and at university and doing really well. No flare up's for around 5 years, still on 8 weekly infliximab.

If your family hasn't found them already, a good source of information is CICRA. They have the knowledge and understanding of children with crohns and colitis and can help negotiate around schools etc. Also if on facebook, join UK parents of children with crohns or colitis. They are excellent for helping.

PM me if you want to chat. I have been dealing with this for many years now.

Don't know whether it would help your grandchild, Lucky, but Amy Dowden (surname?) on Strictly has it too. Sorry if that is a red herring!

Thank you for the kind suggestions. I am hoping that this is the difficult bit before they are settled on a treatment that will keep things at bay. It is very helpful to know that others have achieved this and are leading normal lives.

How old is she Lucky. I am glad they now have a diagnosis- and as others have said, it can be controlled with avoidance of some foods, and other meds. Lots of natural plants are being investigated as cures too- I went to a Lecture recently where wormwood was indicated as a real hope.

Luckygirl - surely your grandchild would prefer to be referred to as 'they', so not gender specific.

Only a small point, but can be so important for these youngster

Not Crohns, - but I suffered from Ulcerative Colitus for a longtime, (similar symptons to Crohns, different cause). Definitely look up Crohns & Colitus UK,

I, eventually had a total ileostomy,, now some forty plus years ago. Treatment and understanding has improved greatly since those days.

Luckygirl - surely your grandchild would prefer to be referred to as 'they', so not gender specific.

I have used "they" in my posts - and I try very hard to remember in real life - I am forgiven when a "she" slips out!! I am sorry that you too have suffered with inflammatory bowel disease.

GD is home from the hospital fully topped up with goodies - I am hoping very much that they will be like Popeye on his tins of spinach and suddenly get a new lease of life!
Unfortunately for this situation they are vegan and this is not a great combination with Crohns in a growing 17 year old. The medics have told her that she must eat some meat even if it is just temporarily until some proper treatment can get underway.

They really do need to follow medical advice as it is very hard to find any really excellent vegan substiture for meat and eggs when it comes to iron. Hopefully, as they start to feel better they will also be more reasonable in coping with this very deblitating illness.

It is difficult enough being a teenager these days, without something like this which has a significant effect on their own body image, as well as the pain and discomfort and (at times) embarrassment_ that can accompany this condition. In this country we are so reluctant to talk about anything related to bowels - unless it is made into some sort of joke. Comedians will happily joke about ostomy bags, where they would not dream of doing so about breast implants, etc. This is why it is important to join the Crohns,.......Association, and meet up with other people in similar situation to themselves and be able to discuss every day problems and successes.

My full Ileostomy gave me back my life ( indeed, saved my life), yes, took me a long time to come to terms with total change in body image - but the first time, following that op, I was able to sit in front of a large audiance at an ASA event, as an official dressed totally in white - was a day I remember very well.

Few of my friends know that I wear this bag, no need for them to do so. I am able to live a virtually normal life with regards to toilets now, although alway the first thing I check on when we are visting somewhere new.

Luckygirl do hope your grandchild will soon start to feel much better and able to cope, and realise that although they may have been given one of life's short straws - in terms of what many others have to cope with, it is not too bad and they are fortunately in a countryh where the Health Service will be able to provide suitable support. Good Luck to them.

A friend of mine has Crohns. She has an infusion at the hospital every six weeks. It seems to work well for her.

She gets tired but takes regular naps to manage this. She is in her 50's and has had it for around 20 years

Thank you for the encouraging posts and advice. I have sent the link to the Crohns organisation to my DD.

Well done Franbern for getting on with life with its bowel challenges. I absolutely hear what you say - I had decades of Irritable Bowel and it was not easy - trying to accommodate 10 trips to the loo per day into a a life of bringing up children and being out working was something of a challenge - and as to the pain ......! - eventually things began to settle down when, after a few decades, they found a problem with bile salt malabsorption and I got some treatment.

This is why I have such sympathy with my DGC - I know how hard it is to be a teenager who needs to get to the loo frequently. First dates with dashes to the loo lacked a certain romance!!

My daughter has had Crohn's since she was 22,she has had no treatment for a number of years now,and just occasionally has to have a dash to the loo
When out she still does like to be close to toilets if in a theatre etc
She was really I'll at the start,and s sometimes screaming with pain
She is now 58 ,and living a normal life