Crohn's disease

[adrian1]

Have just been told by pediatrician that our nine year old probably has Crohn's disease. Due to have colonoscopy in a few weeks. We're rather distressed. I'm new to Mumsnet but would love to hear any advice/experiences anybody wishes to share, particularly about ways to help child cope, developmental implications, diet, etc

Adrian

sorry i can't help specifically, but didn't want you to think you were being ignored.
my mother in law has Crohn's disease and has had bits of her bowel removed over the last 25 years. it has caused her hospital stays several times. because so much of her bowel has been removed she doesn't get much nutritional value from her food (this is from the gut removal not from the Crohns itself). she sometimes has to rush to the toilet 12 times a day. BUT she is also one of the cheeriest and contended people i know, she gets a lot of pleasure out of life, she is meant to have a restricted diet (low fibre etc...the opposite of mine!) but she often cheats and it doesn't seem to damage her that badly, she is an art teacher and has had 3 children.
i say all this just to let you know she has had a normal life, with above average happiness!! she has had Crohns for 25 years, and says the worst bit was before she was diagnosed.
there is a national association of Crohns and Colitis (is the NACC? do a google search!) and i think they have helpful leaflets and stuff.
best of luck!

Hi adrian, sorry to hear about your bad news. What have they based the diagnoisis on if your 9yo has not yet had a colonoscopy? It is quite hard to diagnose crohn's, other things mimic it that are self-resolving for eg. Without evidence of GI tract ulceration I wouldn't have thought they should be speculating like this! What are the symptoms? And why do you have to wait for a few weeks?!

I have had crohn's for nearly 20 years. I was terribly ill when I first had it and was hospitalised for nearly a month, even then it took them most of that time to diagnose.

To be honest it is pretty awful while they are diagnosing and getting the medication right. It can be very painful and undignifed. If it is Crohn's then steriods would be the probably first port of call coupled with a sulfa drug like asacol or salazopyrine (I am allergic to these but am on immunosurpressants instead). The steroids have horrid side effects like weight gain, your face gets very fat and your hair can fall out. However once it is under control they tail these off and hopefully if the patient responds well to the drugs they can remain steroid free.

I have had about 5 or 6 acute episodes of it requiring steroid treatment in 20 years, most of those in the first 5 years. TBH it does not effect my day to day life other than when it is acute (other than having to avoid a few very high fibre foods). Some people are unlucky and have it more seriously and have to be operated on and have bits of intestine removed but a lot are like me and can get through with drugs.

The NACC are very good for info. Also I was lucky enough to be in hospital next to someone else with it, I think first hand info from a sufferer is very helpful
Pls feel free to email me countessdrac at gmail dot com

x

Thanks very much to both of you. No, they haven't confirmed it - pediaetrician has just said that's what looks most likely. Symptoms have included bleeding stools, stomach pains, headaches, photophobia, itchiness, alternating constipation and diarrhea, and a very bad liver. Also very vulnerable to colds, and has stunted growth (in the lowest 3% for her age - two years ago was in the bottom 50%) They can't do the colonoscopy - well, we couldn't actually get in to see the surgeon until beginning of October - we're in Australia - when you're on the public health, it seems you have to wait a long while. Should happen within a week or two of seeing him. In the meantime, we are treating her symptoms as best we can.

Thank you both so much - good to hear people lead normal lives with it. Am checking out relevany associations now. Best wishes. Adrian

My cousin was diagnosed with Crohns when he was about 12 - before that it was put down to food intolerance/allergies (he was lactose intolerant as a baby but is fine now). He is now 24 has never had to have surgury, it is controlled by diet and he leads a normal life. He works as a chef so finds some of the food restrictions frustrating but if he cheats or has something with a food he reacts to in it he suffers so he has learn't to live with it. I think each persons trigger foods can be different, with my cousin it is certain fruit and veges e.g. Onions are a real problem for him.
He certainly doesn't let it stop him enjoying life and cooking etc...
I also have a friend who has crohns who is now 27 and hasn't had to have surgery she also controls it via diet.
HTH good luck with the little one.

Thanks very much Lyndag. That's encouraging. We're still in a state of nervous limbo at present, and our little girl is quite unwell most days, but every little bit of advice helps.

Best wishes

Adrian