13 Year Old with Crohn's

Thank you for your encouraging posts, Thistle ad moomin.

My youngest DS has Crohn's NTO. He was diagnosed at age 21, he is now 34. There have been ups and downs as per usual with IBDs. He has been on a couple of DMDs and decided to come off the latest one which was working well to see if he could control flare ups with diet. He's been off the drugs for 18 months and unfortunately is not too good atm so he may have to restart them.

So far no need for bowel surgery. However he is happily married with 2 children and a good job (with an understanding company).

It's a rotten disease and to have it so young is awful for your DGS. But there are so many new drugs coming up all the time that hopefully he will be able to lead a happy and fulfilling life in the future.

Sorry to here of your poor DGS Crohn's disease, especially in one so young and at the cusp of adolescence. Good luck with the diet and hope it all works out for him. My DH suffers from ulcerative colitis and has done since he was in his late teens, he was so ill at one stage when we were newly married that he was at the point of having to have an illiostomy when a new drug came on the market which he was put on as a trial. He is still on these drugs along with a careful diet and has done well apart from a few ups and down over the past 45 year. I know Crohn's is a bit different but it has similar causes and effects.
I feel DH is testament to how this distressing conditions can be managed with care.

Thank you, Iam. As you say, drug therapies are improving all the time so perhaps a cure will present itself in the not too distant future. It is hard to watch a 13 year old move from 'thriving' to 'surviving' though.

Close friend diagnosed as a teenager. She had surgery at 31, colostomy bag for a good while - had her fist baby at 34 and is doing brilliantly. I do hope the diet approach works for your grandson notToo)ld - as with all auto immune conditions, drug therapies are improving all the time, should that become necessary.

There's not much good news where Crohn's is concerned, I'm afraid.

My cousin has Crohn's and was diagnosed as a teenager, they were unable to control the disease with diet and drugs and had a total colectomy. For the next forty years her food was a liquid containing all the nutrients the body needs. Medicine advanced and in her fifties she was able to eat one or two specially selected foods. The downside to the absence of bowel is the lack of absorption of nutrients and she became painfully thin and developed osteoporosis.
There is a risk of developing bowel cancer and that is why the decision is sometimes made to remove the diseased area.

Thank you, loopy and jing. It is sad to see DGS missing school and missing out on trips here and there. He is a bright boy academically and also good at sport, so it is sad that he is sometimes not well enough to enjoy all these things. I am glad your nephew is doing so well, loopy.

I don't know anything about this NotTooOld but I hope it all goes well eventually for the young feller. There is so much they want to be doing at that age too. I hope it doesn't hold him back too much.

My nephew was diagnosed at about 13.
Unlike your DGS he did have a bowel resection without a colostomy aged about 17? He is now 32, works as an engineer, is married with a little boy and fit and well.
He too avoided eating certain foodstuffs (I remember him having a fairly restrictive diet) and has had odd bouts of recurrence generally through eating something not on the list, other than that he's 6' tall and doing well.

It was very much trial and error 20 years ago, so it sounds like things have greatly moved forward in that time.

I truly hope everything will go well, best wishes to you and your family x