After about 6 weeks of symptoms my 15 year old daughter has been diagnosed with Chrones Disease. For those not in the know basically its a condition which has spread from the digestive tract through the bowl and into the throat. This is a life changing condition with no cure but can go into remission however can flare up at any time. Lifestyle, diet and stress can all cause flare ups. Big chance of operations in future to remove severely damaged tissue.
As some may know we spent the marathon weekend in London where she was none to good but stuck with it. Final diagnosis was last week after a couple of days in hospital for tests and cameras.
We were all very down at the weekend and she was washed out. Its coming up to GCSE time which is causing other issues as she is in her third week off school and is worried about that as well. She got some spark back but is up and down. Now on a 6 week liquid protein diet which is pretty awful and she is not wanting to take it on board yet.
Anyway here she(on the left) with a smile she always has infront of a camera.
snip - link removed at request of author
If anyone has any positive stories then I would like to hear them. I'd rather not hear the negative ones.
Last edited by: VxFan on Thu 3 May 12 at 01:35
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On second thoughts I've removed the image of Mrs FC with the daughters and her marathon medal. If Mods could precis the original post please.
The sentiments are still the same.
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You have my utmost sympathy. Horrible news to be hit by a quadruple whammy.
First that it is Crohn's (no cure), its extent (all of digestive tract), at exam time, and to top it all to hit a girl during teenage years when girls are most sensitive about their bodies. (re. the exams, make sure the exam boards are made aware of the situation, as they will make allowances in the grades for it).
You and the rest of the immediate family will have to give your daughter a great deal of psychological support. There are support organisations that you should join and use to get the maximum help as you need, especially in the first few months while the impact of the disease sinks in.
I have a close adult family member who was initially diagnosed as having IBS, then Crohn's was mentioned as a possibility, then ulcerative colitis, then possible colostomy or ileostomy was discussed, but in the end fortunately it was all cured by removing a relatively small portion of the intestine. It was bad enough coping with that so I can only imagine what your daughter and the family must be going through at a very crucial stage of her teenage years.
Best wishes, and keep posting if it helps release your inner thoughts.
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Oh dear, what awful news for your daughter and your family.
You all have my sincere good wishes
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Sympathies all round. Not nice.
I've got IBS which is unpleasant enough, but nothing on Crohns.
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I have IBS too and when it flairs up its horrible but I can live with it (providing I have good access to a toilet!!) and the pains are mostly severe discomfort rather than agony but thankfully it comes and goes, it seems to be three weeks bad and 3 weeks normal.
I was quite re-leaved when the GP ruled out Chohns.
While with your daughter it seems really bad now it is not as bad as it may seem. I had some health issues at school which did effect my performance and life at that time but I can look back and reflect now. I think at this time it is important not to pressure your daughter too much with her GCSEs they can be resat when she is feeling better. The most important thing is her health and happiness. It must be a horrible shock for all of you but at least its not usually life threatening. It could have been bowel cancer or something like that, so although Chrohns is a nasty disease it could have been a bit worse.
You have my sympathy but it sounds like she has two good caring parents who will make her life much easier during this hard time.
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Nasty dis-ease F/c, sorry to hear that, especially with a youngen, my Sisters 'boy' contracted Crohn's over 20 years ago, he was quite bad at first and had to be admitted to a hospital in London that specialises in said disease, he had 'the bag' to begin with plus a part of his intestine removed but, he is almost as young as me now (59) AND he's a £millionaire through classic car resto + property, doesn't wear 'the bag' and leads a relatively 'normal' life.
Keep ya chin up me ole son, find out as much as you can about said disease, and also look into how ones diet may impact Crohn's in any way.
Good luck!
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Life changing it may be, but that life need not be anything less than successful and fulfilling.
Point your daughter to this web page
crohn-colitis.hu/eng/famous-people-with-ibd.php
Your daughter clearly has designs on being sporty and fit. Steve Redgrave is a classic example of how chronic diseases and sport can be easy bedfellows.
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I know what you and your family are contending with.
My mum had it diagnosed during the early 80s, when it was a relatively unknown disease. I can only wish you and your daughter the best and hope a cure is on the horizon. It is quite debilitating, not just from the weight loss, but the social aspect (as we both know). There was once talk that they had identified how it occurs and a possible antibiotic cure. Is there any idea if there is hope of a cure via the CD people/help groups?
All the best FC.
Last edited by: Mr. Ecs on Thu 3 May 12 at 14:58
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Sorry about your child illness Fullchat.I have been there with one of our children adults now.
Medical science advances every year which is our best hope.
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First of all, my thoughts are with you f/c.
Our best friend from our first home had Crohn's disease. It was a bit inconvenient but she never let it interfere with anything she wanted to do. At one stage she was offered a colostomy but refused it. I think that was the best decision for her. She even had two very robust and healthy sons. It all comes down to a state of mind and hers was such that she was going to enjoy life to the full come what may.
By the way, I'm writing in the past tense but it wasn't the Crohn's that killed her - totally unconnected with it she developed ovarian cancer and died much too early.
I also worked for a while with a computer consultant who had the disease. He had a similar attitude to it and from working closely with him for a numer of months I'd never have known he had it if it hadn't come up in conversation one day.
I can understand your (and your daughter's) current state of mind - we went through it when I was first diagnosed with cancer. After a few days we found we were saying "right then, what do we have to do to take this thing on" and you get on with life, trying not to let your health stop you from doing what you want to.
HTH
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Horrid for you all, but manageable with modern knowledge. My flatmate, aged 19, was diagnosed with this in 1973 - unheard of then she spent several uncomfortable months in and out of hospital before a student doctor suggested Crohns. She had a couple of yards of intestine removed at this stage. She married shortly afterwards*, has a daughter, became a nurse and emigrated to Canada.
I have a couple of friends who have it now and both are active and live full lives, one was a Wren and now sails keel boats competitively, has two children and a full life.
As with many conditions like this, it is the attitude of the person and all those around that make the difference. Many young people with my son's health and disability are wrapped in cotton wool - we took the view that however long or short his life, it would be full and challenging - and so it is.
Another thing you might like to research is that there have been some trials using thalidomide to good effect - obviously not for those having babies!
* We shared a flat in Pimlico with a third girl, all moved in single without serious boyfriends, but within six months two of us were married and the third engaged, the replacement for the first to marry also got engaged. The landlord was going to advertise the flat as lucky for those seeking a mate. I might add that the two of us who met and married partners within a few months or even weeks, stayed happily married!
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Thank you everyone for your sentiments they are encouraging. Its not until you start to discuss the subject that suddenly many people start to disclose how something similar has effected their lives or someone close.
Its difficult to describe how everyone felt last weekend but it was a low point. How people find the strength to cope with a terminal issue, particularly with children, is hard to comprehend but somehow they do.
She's started a 6 week liquid only protein diet and has had some difficulty coming to terms with the taste. So I had to have a go. It was palatable with some banana flavouring in it but then I don't have to live on it for 6 weeks. Again she is slowly managing the drink. So there are psychological and physical issues but I am seeing a spark in her if its only having a little argument. Aaah back to normal :-)
Once again thank you for your responses.
Last edited by: Fullchat on Thu 3 May 12 at 22:57
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I think everyone knows someone who suffers from it. My BiL from my first marriage has it. He manages it.
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I think everyone knows someone who suffers from it. My BiL from my first marriage has it. He manages it.
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The daughter of some friends was diagnosed about 15 yrs ago when she was about 20.
She quickly married her fiancee as they both wanted children. She kept herself fit by running and is now a happy, married mother of two young teenagers.
She did have the colostomy but it didn't faze her one bit. In fact she made light of it, commenting she could never find a pair of shoes to match her bag !
A good spirit and a positive outlook is the key. My youngest girl, now 34, was found to have bladder cancer about ten years back...thank God for cystitis !....it was removed during one of her checkups but returned a year or so later. This was nipped out as well and now she is a well mum of two boys.
I wish you all the very best as I'm sure all your forum family do. Good luck !
Ted
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+1.
A friend's 15 year old son was diagnosed as having type 1 diabetes last year; a similar sort of blow I imagine. It seemed to them very unfair, and shook them all up quite badly. They seem OK now - rather than his life being circumscribed by the disease, their starting point is how they are going to make it possible for him to do what he wants to. His parents were if anything more upset than he was.
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Eh, on that famous peeps with IBD site I posted, Carrie Grant says:
"My Crohn's improved with each pregnancy," Carrie says, "but no one knows why - I was even able to eat chocolate for the first time in years, which was wonderful!"
It would be interesting to hear an Endocrinologist's opinion of that fact.
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>> Eh, on that famous peeps with IBD site I posted
(as did Z yesterday)
>> Carrie Grant says:
She also says "My Crohn's improved with each pregnancy" - not sure if FC should pass that on to his daughter, or not just yet anyway...
Last edited by: Focus on Fri 4 May 12 at 12:45
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>>(as did Z yesterday)<<
He's good that Z ain't he ;)
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>> >> Eh, on that famous peeps with IBD site I posted
>>
>> (as did Z yesterday)
>>
>> >> Carrie Grant says:
>>
>> She also says "My Crohn's improved with each pregnancy" - not sure if FC should
>> pass that on to his daughter, or not just yet anyway...
No offers of assistance please........
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Chrones Disease - Fullchat
