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My daughter

My daughter was diagnosed at the age of 14 with Crohns after a long battle with the GP. She started to feel ill around November 2008, and began to lose weight, feel sick, sleepy etc. The GP took bloods, and then decided that it was probably "just her age". After various trips backwards and forwards to the GP, and me sitting in A&E with her in agony, they took some more bloods in the April 2009. By this time she had lost around 3 stone in weight. Her friends thought she was anorexic. She hardly managed a full day at school, she slept around 20 hours a day, she'd eat, but then be straight in the bathroom. She wouldn't come to friends houses in case she needed the loo and was really embarrased about the whole thing.
Eventually, the doctor came back with the blood results which showed an inflammed bowel (Halleluljah!). Within 3 weeks, we had a full hospital diagnosis, however that was just the start of it. Immediately she went on Omeprazole and Pentasa. Then it was decided, to cut her whole diet - we were on 8 Modulen drinks a day (banana flavour)....at last the change started. She's now also on a Colifoam. Its not been easy, and we are now a year down the line. her weight has improved, her moods haven't (that could be her age).
She hates having Crohns, and doesn't want to accept it. She has no choice. Any ideas?:sign0085:
 
hi Laura & welcome to the forum.

i'm sorry your daughter has had to deal with all this pain & suffering at such a young age, and now has to get her head around the diagnosis of Crohn's.

there is a lot of help out there regarding children and teens with Crohn's. one of the best resources i know is NACC (National Association for Crohn's & Colitis). this link is to a PDF file on advice for parents - http://www.nacc.org.uk/downloads/factsheets/Childhood.pdf

& there's some really useful info on this page of their website - http://www.nacc.org.uk/content/services/parents.asp

regarding her moods - i have a 14yr old daughter who's moods are something else lol. sometimes it feels i can't do right for doing wrong, i get the evil eye, the stomping upstairs... then i wait for the slam of her bedroom door - yup there it goes. then literally within minutes she's asking for a cuddle and saying she loves me. this is normal hormonal stuff, difficult enough to deal with on it's own, but add to that your daughter's upset at everything she's been through, the dismay (& probably fear) of finding she has a long-standing condition, plus it's one of those embarrassing 'uncool' ones you don't want your friends to know about... i can totally feel for her, and know how she must be feeling right now.

i think, as a mum, the best way i'd want to help with the emotional side would be to find her a group of kids around her age who also have IBD, and let her talk through all the common feelings and worries and experiences with them. that way, she can unload on peers, not bottle it up, but not have to explain it all to people in her real life, if she doesn't want to. NACC can probably help with putting her in touch with other teenagers - maybe give them a call and see what they suggest.

good luck, ((hugs)) to your daughter, and please keep us posted... also if you think we can help with anything, just shout.
 

Silvermoon

Moderator
Being one of the many on here diagnosed at an early age (I was 12 when I was diagnosed with CD), I can tell you it took me 23 years to accept my illness... I have now had Crohns for 24 years.....

LOL! OK that was a bit of a joke, but on the serious side... I was well into my 20s before true acceptance came. I went through a time in my teens where I thought "Screw it! I am going to die anyway... I am going to party my face off before I go!'... drugs, alcohol, sex.... you name it, I tried a lot of it. Fought with my parents because they were "soooo controlling!!" Started skipping school. Tried to OD more than once on a few different types of meds. I did continue my education after high school to obtain my RN degree.... but I really didn't know what I wanted to do with it.

Then the last year of school, I was home for the summer and met my future husband. We have now been married for 10 years, and I have come to realize that among the pain and crap, there is a reason to live. I now watch my diet, try and get fairly regular exercise (arm bends: potato chips from bag to mouth bends the arm...right?!?!), and try to enjoy life. I figure, if I haven't died by now, the aliens must have some other purpose for me.

I guess what I am saying is, short of keeping her in a closet, I am not sure what else to tell you. You are probably in for a bumpy ride, and she is going to "fall down and scrape her knees" lots. Until she decides to accept and take control, all you can do is love and hang on for the ride.

Maybe invite her to read through the forums with you...give her a chance to see she is not alone? Especially if you can pick out posts from some of the younger "kids"... maybe she can even start her own thread, to get feedback not from all us old foggies, but from the ones closer to her age (and I mean chronological age here...not mental age... LOL! )

I wish you all the best!
 
Hello Laura..

Just stopping in to say welcome to the forum!
You will find a ton of useful information
and probably make a lot of friends along the way.

Good to have you on board...
Hugs~Nancy
 
Hey Laura
I can relate to your daughter in that it IS embarrassing!! I like Dings suggestion re: support group. It will give a sense of not being the only one and they can actually eventually laugh about it with each other! I dont blame her for hating this disease however I have read about people on here who are/have been in remission for years and years. There is light at the end of the tunnel and its not a train :)
 

Crohn's 35

Inactive Account
Welcome to the forum, it is hard for a mom to see your child in pain and going through puberty is harder. Most parents wish they could put there teenager in the closet between 13-18 and they get a brain at 21-22 because it actually takes the long for the brain to fully develop and I thank the lord my daughter turned 22...what a different person now. Stress is hard on young people, people are cruel and they dont understand they are being ignorant. Some people who cant gain weight go on a short taper prednsione. But that causes moon faces and that is the vanity that will never put up with that. Hang in there, make sure she eats right, and remains calm. Glad you found us!
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
Hi Laura, I'm sorry for your daughter and you as well. Dusty and Silver have both helped me tremendously with their insight from a parent's and a child's perspective. You will find a great deal of wisdom here when you need it and a shoulder to cry on when you need that too.

Like Ding said, get your daughter to read some stories of others in her situation. I too have a 15 yr old and a soon to be 13 yr old daughter. They are hard enough to handle without adding crohn's to the mix. Good luck, I hope things get better for her and you.
 
Welcome Laura ! I too have a 14 year old !!! I totally understand the ATTITUDE !! Hope you find lots of support here for your daughter!
 

DustyKat

Super Moderator
Hi again Laura,

I guess what I am saying is, short of keeping her in a closet, I am not sure what else to tell you. You are probably in for a bumpy ride, and she is going to "fall down and scrape her knees" lots. Until she decides to accept and take control, all you can do is love and hang on for the ride.
Silver has wrapped this up nicely. If there is one thing I have learned it's until she decides to take control there's not a lot you can do.

I can certainly understand the age and the accompanying Crohn's. Although Roo's treatment took a different path there are many similarities, right down to her friends thinking she had anorexia. Roo has had her diagnosis for 4 years now and what a ride it has been.

The moods she had and to some degree she still has I think are a bundle of age, anger, fear and self esteem. This is something I haven't been able find a solution to and really has been something she has had to work through. My role has been to love her unconditionally and to listen when she needs to vent, leave her alone when she needs her privacy, pick up the pieces when she breaks and ensure home is her comfort zone where it is safe to be herself.

Early on the GP kept saying - "she needs to talk about it you know" - well that was easier said than done, he said it to the point that I exploded one day and told him it would be a lot easier if he wasn't so f***ing black and white! Any way it wasn't Roo's thing at that time but she did find the periodical from the Crohn's and Colitis association helpful. I also arranged for her to see the psychologist at school. I'm sure if I asked her now if that was helpful she would say no but funnily enough that's what's she is doing at uni and it had never been on the radar until then. So I think something positive must have come from it. There are avenues that others have suggested and perhaps one or a combination of these will be helpful to your daughter.

Roo's last year of school was difficult and she went off the rails to a large degree. It was a time that I just had to stand back and pick the times when I said something, it was bloody hard but the fear of alienating her was worse. It is a very delicate balance between keeping the channels of communication open and them shutting down completely, a little bit of trust and information is far better than none. Rest assured it will improve bit by bit and in our case moving away to university has been the catalyst to her taking control of both her mind and body to a degree that surprises me.

I'm sorry I can't offer any miraculous advice, but hang in there, things will get better as your daughter comes to know and accept her body. I hope my experience gives you a little hope for the future. I wish you all the best and my thoughts are with you.
 
Thanks guys
Your suggestions are really valuable. My daughter is in the middle of her exams right now, finishes school in a week, and has a long holiday planned before college. She's had about 5 relapses this year already but I know its still early days. Her weight has stabilised now, but her appetite is all over the place. Before CD she would eat/try anything, now she's incredibly fussy and doesn't want to eat!!! She's never been on steroids, and its not a weight issue. Her thing is more "I can't eat that - its dairy....."
Funnily enough (or not) a friend of ours daughter was diagnosed the same week, and they live about 200 miles away. Neither of them talk about it.
Is it that bad?:ywow:
 

Silvermoon

Moderator
I remember being terrified of what I put in my mouth...how long was it going to be before I had to use the toilet? Was it going to hurt if I ate this? Was it going to make me puke? Even after 24 years there are still times I worry.... It will take time, but she will eventually figure her own diet own and find what foods she can tolerate. (Personally, I have no problems with dairy...as long as it is low-fat).

Funnily enough (or not) a friend of ours daughter was diagnosed the same week, and they live about 200 miles away. Neither of them talk about it.
Is it that bad?:ywow:
It is and it isn't. Talking helps... but think about being a teen.... What did you talk about? Boys, hair, nails, clothes, movies.... not how much you sat on the toilet the night before, nevermind what was IN the toilet when you were done. I think it was easier to talk about when I was younger and first diagnosed... because I hadn't really hit that "I need privacy in my life" age yet. And even after having doctors inspect every tiny piece of my hoohaa when I was younger, once I hit 15-16, I thought "You wanna look where? I doubt that very much!!"

Right now I imagine there is so much going on in their brains.... "Just gotta make it through exams...can't deal with this yet"; "OMG how am I going to be able to handle university with this?"; "No boy is ever going to want to be with stinky old me again.".... and the list goes on. And the more she stresses about it, the worse her gut feels, which makes her stress out even more....

My mom bought books and put them out all over the place...her way of saying, "OK here's the info, and when you are ready to talk, we can."

Being diagnosed with any chronic illness at any time in your life can be devastating.... being diagnosed with such a disgusting one at that particular time in her life is going to turn her world right upside down.

Be there for her...hug her when she lets you... and let us hug you when you need it....

I only wish my mom could have found some kind of support like the people on this site when her kids were diagnosed.....
 
Welcome Laurad1969! I went through something very similar when I was 14 years old. It is traumatizing and the last thing on earth a girl at that age wants to do is talk about digestive problems.
Judging by your use of the word "loo" and your location being Nottinghamshire, I'm assuming you are in the UK lol. Maybe the Crohn's and Colitis Foundation of America could provide some support for your daughter. They have many different chapters in the U.S., as well as info online that provides alot of helpful info on helping kids and teens with Crohn's. They host a summer camp here in the States,too.
I'll post a link below to their website, I'm sure they must have a sister organization over in your neck of the woods. Going by the different members of this forum, there's alot of us Crohnnies over in the UK.
Any of our UK forum members know a support group to help kids and teens that can assist Laurad?

www.ccfa.org
 
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Regular Joe

Senior Member
Welcome.

It's hard to imagine Crohn's as a 14-year-old. It didn't start in me until my mid-40's - just got the diagnosis at 51.

It does put a damper on "normal" activities until we get the "hang of it". I can imagine how badly she feels knowing that the future may hold more of what she's experiencing now. Crohn's disease is not the worst condition I've been diagnosed with, so it wasn.t as hard to accept for me. But I also don't have the worst case of it - mine is pretty mild compared to many.

Maybe your daughter might want to join us too.

I wish you the best, and thanks for joining us.

Joseph
 
I am so sorry you are going through this with your daughter. My son is also 14 and awaiting a phone call tomorrow to confirm suspicions of Crohn's. He was told back in Nov when his pain started that if they couldn't find a reason for his pain they would discuss "pain management" with him and recommended he see a psychologist. They seemed to believe it was all "in his head"..

Good luck with your daughter...it is a terrible thing to see our children suffer..if I could trade places with my son I would in a heartbeat :(
 
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