Welcome Myfanwy

[Myfanwy]

My 14 year old daughter has had undiagnosed bowel problems for four years. I have watched a family member go through the same thing at the same age. They were finally diagnosed with Crohn's after 9 years.

My daughter has been in hospital overnight with a diagnoses of severe constipation. She has been discharged with medication for constipation. The specialist said it is unlikely to be Crohn's as the symptoms for Crohn's normally start in infancy. He also said that she is unlikely to have it as she is constipated. Is that information correct as my family member also started to get the symptoms at age 10 one of which was severe sonstipation ?

 

[Guest]

hi Myfanwy, & welcome!

i am sorry to hear of your daughter's sufferings - it's hard enough being a teenager sometimes without having to cope with this kind of thing

although i don't want to appear to disagree with a specialist, certainly in my experience two of the points he's told you don't ring true for me... i didn't have Crohn's symptoms in infancy, i began with joint pains when i was around 10 years of age... then gradually other symptoms developed over the years, the stomach ones hitting the hardest in my teens.

i also never had diarrhea, only constipation - and i know for a fact many Crohn's sufferers also get constipation... sometimes in addition to diarrhea, but sometimes not.

having said that, unless there are other signs to indicate IBD, it is absolutely possible that your daughter does simply have severe constipation.. my own daughter went through this for years.. swollen stomach, struggling to go to the toilet, stomach pain - she's 14 now and has more or less grown out of it. also, my best friend's daughter had constipation so bad as a child that she went more than once to be cleared out via enemas in hospital... but also grew out of it.

i would suggest that if the situation doesn't improve with the meds she's been given, that you ask for a referral to a GI specialist, and then maybe they can run some routine tests to make sure it isn't anything else.

 

[DustyKat]

Hi Myfanwy and :welcome:

I have to agree with all that Ding has said. My daughter was diagnosed at 14 and most likely had symptoms for 2 years prior to that. She also never had diarrhoea, her disease caused narrowing in the terminal ileum so constipation was always her issue. She would only go every 3 or so days.

Most literature states that the most common age to be diagnosed is 15-35 with a peak in the early twenties and another peak in the 50's.

As Ding has said if things don't improve seek the advice of a GI specialist. I hope you stick around as there is heaps of support and info here. Also quite a few parents. Welcome aboard!

Take care,
Dusty

 

[Myfanwy]

Thank you.

I read a list of syptoms on Crohn's about 12 months ago and at that stage she had all but 2 of the symptoms. The two she didn't have from that list at that stage was diarrhea (although she had had it and still does on and off) and weight loss. In the past three months she has lost weight. We saw the GI specialist at the hospital.

I am completely fed up as my daughter has had 5 weeks off school as she has been (and still is in) so much pain. I guess it is just a case of wait and see.

 

[Guest]

not surprised you're fed up, and you must be worried too...

my point about getting a referral to a GI - i think maybe i should've explained further... there's a difference between having the on-call GI see a patient when they've been admitted to hospital, and actually being on a GI's patient list..

i was thinking that maybe, if these meds don't make a real difference to your daughter, particularly regarding the weight loss, it would be prudent to getting her onto the patient list of a GI, not necessarily the one who saw her in hospital - you can choose who you want to be referred to, especially if you're in the UK.

once she's under the care of someone, you would both get the full time and attention of the GI at clinic appointments, and he/she would most probably want to run some tests such as colonoscopy, endoscopy, barium meal etc.

if she hasn't had any of these tests yet, i would say that after 4 years of suffering, and if things don't improve very soon, she really ought to be having them done.

 

[Dexky]

Hi Myfanwy!! I hope for you and your daughter it is just constipation and you never need the support and advice this forum has to offer. But, just in case you need us, we will be here for you!! I wish her a speedy recovery!! Good luck to you and yours!!

 

[Astra]

Hi Myfanwy
and welcome

I'd like to concur with what's been said in respect of Crohns in infancy. I didn't get mine until I was in my late 20s.
Hope you get a referral to a specialist in IBD, and all the relevent tests to rule out Crohns, your GP should be able to arrange this.
good luck, and we're always here, any questions, just fire away.
lotsa luv
Joan xxx

 

[Crohns08]

Hey Myfanwy, I'd like to disagree, I was diagnosed at sixteen, but I suspect that I have had the disease my entire life. Also crohn's patients have such diverse symptoms that I would still take you daughter to see a GI and have tests done, you both deserve answers so you can try to get rid of her suffering.

Good luck to you both!

 

[DustyKat]

@Toni,

I'm sorry, I didn't mean to imply that no one has symptoms from a very young age, that simply isn't true as you can attest too as can many others on this forum. However I don't agree with the specialists statement -

it is unlikely to be Crohn's as the symptoms for Crohn's normally start in infancy. He also said that she is unlikely to have it as she is constipated.

simply because most people don't have symptoms in infancy therefore to say it is unlikely on that basis is misleading. Just as it is to say it is unlikely because you are constipated rather than having diarrhoea.

Dusty.

 

[Myfanwy]

Thank you all for the information.

If this treatment doesn't work, which I suspect it won't, I'll send her to a different GI.

Dusty, I noticed you are also in Australia. I'm in NSW. Do you know of any Crohn's associations or websites that are Australian ? I did a Google search yesterday but couldn't find much dedicated to Crohn's.

 

[DustyKat]

Oh, when I saw your name I assumed you were in Wales!:lol:

This is the link to Crohns and Colitis Australia

http://www.crohnsandcolitis.com.au/

Here is a link to IBD Support Australia Forum

http://www.ibdaustralia.org/forums/index.php?PHPSESSID=b9e4a9b6e1f6a1ea4e0b4d1bf0cd1355&board=12.0

I'm also in NSW, in the north west.

Dusty.

 

[Myfanwy]

Thank you, Dusty. I live on the coast. On a side note, my grandfather was Welsh hence the name LOL :ybiggrin:

 

[Crohn's 35]

HI there :welcome: to the forum. I read your first post and I agree with the others there are many symptoms of Crohns and no two are exactly alike, and here in Canada the highest incidence of babies and adults are here. My sister has crohns, she bleeds and rarely pain, I have Crohns and never bleed(knock on wood) and have pain on an off and started symptoms at 15years old. You need to get your daughter to an experienced Gi, hopefully a pediatric one if she is under the age limit. Constipation is a sign that could mean she is obstructed or narrowed, or looping somewhere. I hope she gets out of pain soon, it really hurts. Like having a stomach virus and constipated at the same time. Good luck, glad you found us, hope you let us help you as best we can! Hope you are ok too!

 

[reidyjo81]

Totally agree with all that has been said.

Just wanted to say welcome. xxx

 

[DougUte]

I was just diagnosed, but I am sure I have had symptoms since my early 30's. I did not start this in infancy.