How did your teenager ...

[Cornfieldgal]

Crohn's disease has been my cross to bear for 23 years but I always thought "better me than my kids". Now it looks like my son may have Crohn's as well. He is only 15 but he has had tummy issues since he was five. This school year he has missed 15 days of school due to his issues. He has had black stools and they just did an endoscopy and found inflammation and ulcers in his stomach and small intestine. I am devastated. How did your teenager take the diagnosis? What differences have you learned about Crohn's in kids vs adults? Any help would be very much appreciated.

 

[DustyKat]

Oh my, I'm so sorry to hear that your boy has Crohn's. I well imagine that in some ways it is harder for an IBD parent to hear this news than a non IBD parent...:hug:...you already know the nitty gritty of this disease whereas we can live in "ignorance" for a time.

Both of my children were diagnosed as teens, my daughter at 14 and my son at 17. Both of my children seemed to just take in their stride. I know that I was and am far more emotional and devastated by it than they are. I have asked them how they feel about it and they both say...there's nothing I can do about it so I just get on with it. They have very different personalities, one is very extroverted and one very introverted, but they had always stepped up to the plate when it comes to tests and so on and do what needs to be done.

I will be very honest here and say, when my daughter was diagnosed five and a half years ago I was gutted but as time went on and I saw what she went through and dealt with I did say to myself...as much as I hate this with a passion I'm glad it's Sarah and not Matt. I hasten to add that I don't mean glad in the true sense of the word! I think, I hope!, you understand what I mean. Anyway, I thought that way because I felt that Sarah had the personality and ability to deal with this better than Matt ever would. Hell, Matt hates needles and blood! When this time last year he was also diagnosed I wasn't confident that he would cope as well as Sarah has. Sarah suffered far more pre diagnosis and Matt has had a more difficult journey post diagnosis but he has handled it in a way I never dream't he would, he has taken everything in his stride with barely a complaint. I totally underestimated him.

I think as parents our children are so much a part of us that we feel everything concerning them so vividly and acutely and perhaps project onto them on our pain and distress. From what I have seen and learnt from my own children, and all the other children here on this forum, they possess such strong and enduring characteristics of strength, humour, determination, compassion, intelligence and love and they never, ever cease to amaze us.

Dusty. xxx

 

[Kat]

So sorry to hear the news about your son. When our daughter was diagnosed a year ago, we felt like our world just fell apart. But after it all sunk in and treatment began we realized this was something we could handle as a family. Ashley even came to me one day as I sat with tears in my eyes and said "Mom, its not so bad. This is something I can live with. It not cancer, it is just Crohns - I will be okay." I think we underestimate our kids sometimes.... they are amazing. Just take one day at a time.

 

[Tesscorm]

I'm so sorry that your son has been diagnosed with Crohns.

My son was diagnosed in May, just before turning 17. He also has taken it in stride and had the same comment as Dusty's children - 'there's nothing I can do about it so let's just do what we have to do...'

He was only sick for 2 to 3 months prior to diagnosis and, once diagnosed, his treatment was 6 weeks of enteral nutrition. Other than continuing with the EN as a maintenance treatment, his life has pretty much returned to normal (diet, activities, etc.) with only some minor symptoms. I think this has played a part in his acceptance of his Crohns. I am grateful that, so far, it has been very manageable for him and this has made it easier for him.

I think the length of your son's illness and it's intensity or impact on his life will certainly affect his acceptance of diagnosis. Also, in my son's case, we had very, very little experience or knowledge of Crohn's and what to expect - so while fearful of the unknown, not really fearful of anything specific (hopefully, that makes sense???). Your son, however, has seen to what extent Crohn's has affected your life and, no doubt, this will play a role in his reaction to diagnosis. I am sure that your knowledge, guidance and true understanding of all issues will alleviate much of the fear and will be very comforting and reassuring to him.

I hope he begins treatment quickly and that he is feeling better very soon.

 

[Cornfieldgal]

DustyKat- I totally understand what you mean about being "glad" it is one child and not the other! Zach is fine with needles, doctors don't faze him, and nothing really bothers him. Of my two I feel he can handle this better than his sister who faints when she sees a needle! My biggest worry with him is that he tries so hard to stuff all the bad stuff inside so no one really knows how bad he is feeling.

Kat- you are totally right we do tend to underestimate them! Zach had to have 6 tubes of blood drawn today and he laughed it off and flirted with the lab tech.

Tesscorm - initially they thought Zach only had reflux issues so they have been treating him with Prilosec. After the New Year we have to go back and discuss treatment options. Since I have Fistulizing Crohn's the doctor is leaning towards the biologics with him. They also mentioned genetic counseling. Anyone else done this?

 

[DustyKat]

I know what you mean hun but you always have your Mum instinct and you will develop a wonderful ability to look at and observe him without him even realising it! :lol:

You will keep a mental track of how many times he goes to the toilet, the way he moves, his appetite and so on. Sometimes it's all we have to go on because it is a very fine line between asking too much and saying nothing at all! I bet you know exactly what I mean. Matt is the silent type and although I can't speak for your boy just know that Matt always spoke up when it was needed.

We haven't had any genetic counselling here.

Dusty. xxx

 

[izzi'smom]

My daughter was diagnosed a year ago also, and although she had just turned four, she COMPLETELY took it in stride. We have had down days (many of them related to Flagyl lol) but otherwise she has done meds, bloodwork, hospitalization, IV's, countless office visits, and stool samples without much fuss (other than normal 4 year old stuff).
She said to me the other day (I completely forget what we were doing) "Y'know, cause I have Crohn's, and I might poop myself" lol!
She has also said "It could be worse...I could have spots all over my body (I have psoriasis, which is what I think she was referring to) or be stuck in bed all day"

I have often thought "I wish it was me and not her" but give parents WITH IBD SO much credit...it must be tough

I'm sorry to hear that your son has to deal with it too, but wish you both the best...(((HUGS))) and keep us posted!

 

[clnrun]

I think kids do take these things in stride more than adults do. My child is 11 and was just diagnosed last month. We were told he had Crohn's as he was in recovery from an endoscopy and colonoscopy (ended up being admitted for 3 nights). He was groggy but heard the doctor tell us this and said, "Don't worry, Mom." Later I asked him about this and he doesn't remember this at all but it melts my heart that he was concerned about my feelings as he lay there feeling so sick having lost 18.5 lbs (25% of his starting weight) and having just gone through a colonoscopy.

I think the best thing is to be matter-of-fact and take things one day at a time. Acknowledge and validate whatever feelings he has but don't impose your feelings on him.

{{{hugs}}}