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[Herbsmum]

My son is now 15 yrs old and has suffered badly with Crohn's for 9 years. He is also affected with oral crohns. He is now at the age where he will need to deal with things more on his own but of course I want to be able to continue supporting him which is why I have joined this forum. I do worry that he will never be well enough to really do what he wants with his life.
Over the past 9 years he has been on liquid diets 9 times but has just had his PEG removed as he does not want to do this anymore. He has rarely had 'good periods' for longer than about 2 months. The best time was when he was on Infliximab but then developed a reaction and had to stop. He regularly misses school and on going out with his friends. I think he's been on just about every Crohn's medication but he started on Humira 4 months ago and we saw huge improvement in energy levels, weight gain, growth and happiness! It was amazing as he didn't miss a day off school within the half term, entered two bike races, and we almost felt it was going to be the turning point. But maybe there isn't a turning point as such with Crohn's because he's suddenly become unwell again. So my story is one of a mum who is dealing with the impact of Crohn's and wants to understand from others everything I can do to make things easier for him. Thanks

 

[Astra]

Hiya Herbsmum
and welcome

I'm so sorry your little man is suffering like this.
We have a sub forum for Parents of children with IBD, we also have a Humira Club, lots of info in both of these sections for you.
There are lots of friends here for you both, and any questions, just fire away
lotsa luv
Joan xxx

 

[David]

Welcome to the forum, I'm glad you joined I'm sorry your family has had to deal with all this. However, that's fantastic that your son is responding well to the Humira. The Humira forum Astra mentioned can be found here. I wish your son and your family all the best

 

[Crohn's Mom]

Hi and welcome Herbsmom

It's a hard thing to do trying to let our "babies" figure things out on their own isn't it ? It makes it even worse when they have a chronic illness and we still want to shelter them and fix it all. I commend you for even trying right now with your son being 15, to let him go at it more on his own! My daughter just turned 18 a few months a go and I find myself trying to hang on tighter ! :ylol: I'm trying, and learning as I go tho!

I don't have any experience with Humira, but as the others have suggested you should check out the Humira sub forum; and while you're at it, come over and join us in the Parents section as well ! There are so many nice and caring parents here !

Hope to see you around soon, and if there's anything I can help you with just ask away!
Hugs,
~T~

 

[ameslouise]

Hi Herbsmum and welcome!

So sorry to hear about how your son is suffering. It must be heartbreaking as a parent. You will find lots of good stories here, like Gwen's above, about how life can be normal with Crohns.

You will also find lots of good support from other parents like Dusty and Mark and countless others who are here to get advice on how to deal with their child's illness.

Good luck - Hope the Humira keeps doing the trick!

-Amy

 

[Herbsmum]

Thanks for all your words of support. I'm a novice with this whole forum thing but will have a look at the Humira sub forum and the parents one, that'll be useful - but how great to have so many friends on tap who understand what it's like. Thanks for being so welcoming. It's really encouraging to hear the positive side of things too, Gwen. You know if I could have Crohn's for him I would - just to give him a break. Would be good if he could take a Crohns holiday to get away form it for a few weeks a year wouldn't it! x