Has anyone got any experience of this illness?

I am interested in whether anyone belives that following a certain diet would help?

Two of my friends have got Crohns and dairy products definately affect them so they both try to avoid these. They are ok with everything else as far as I am aware.

I have Crohn's disease, i find sugary foods do it for me,  no more nicking my 4 year old nieces sweets :-p

I could be wrong, but i'm sure Astarte has this so you could ask her when she comes on - sure its something stomach or bowel wise. Sorry if I've got it wrong though :(

I am a nurse and have been for many years now (worked in various areas) so have seen a number of crohn's disease cases.
It is often recommended to go on a form of elimination diet for a while to calm the symptoms down and then to add foods back gradually to see what causes flair ups.  Dairy often crops up as a flair up food.  But I have known sucrose to have bad affects as well.

It is really down to the individual, but try to only add one thing at a time so you know exactly which foods or ingredients are right for you.

Emma

Edited to say to killickchick - Yep you are in the right area.  It is a condition that causes inflammation of the gastrointestinal tract but can be right from the gullet (throat) to the large intestine.

Feel free to pm me for any info on Chron's :)

I have recently just had a flare up :( and as Malibu has said you go on a form of elimination diet, it tends to be very bland foods to start with :( . It can be very painful and a debilitating disease. But you can go sometime before another flare up.

Best wishes Hayley

Thanks for the advice :-)

My younger brother has been very ill for quite a while and he has been formally diagnosed with Crohns about 6 months ago. He has got holes (I know they are called something else) in his bowels which have been leading to his waste leaking into his bloodstream and he has been on so many tablets and had a hospital stay. He has baffled all the doctors and even a specialist that has written about Crohns has said he has the most complicated case he has seen :-(

He is only 19 years old and is probably going to need surgery and they have said he will have to be opened from his heart to his navel and it will be quite a big surgery :-(
He will probably need a colostomy (sp) bag aswell but they hope that it would be reversable in about 6 months. We have been really lucky that he has been seen by so many good doctors very quickly but this is only because my mum pursued it after he was told by his gp that nothing was wrong :-( Its a good job she did or we were told that without the treatment he has been having he probably would not be here now :-( :-(

I have spoken to a friend who is a nutritionalist who says they belive there are lots of things you can do with your diet and supplements that can aid this horrible illness but the specialists won't recommend he tries a specific diet as from their ponit of view it isn't "medically" proven.....

I want to try and help him any way that I can as it has been really hard for him, he is very very thin and is unable to work due to pains down his back and leg (caused by the leaking)

I am so sorry to hear about your brother how awful for him, i will pm you

So sorry to hear that and at such a young age.  But once he has had his op he should be at least be more pain free.

Good on your mum for not giving up at the first gp's answer.

Emma

I've also got it and when people told me what you ate could affect it I didn't believe them but it really seems to work. I've about got it sussed now but had a flare up so something must have slipped through the net.:-(

My six year old daughter has a bowel condition which is almost identical to Crohns but means she has contant flare ups. she struggles to eat anything without severe pain and has to be tube fed over night to keep up her calories.

She is also on a dairy, egg, wheat, and soya free diet as her consultant said these often cause flare ups in patients with inflamatory bowel diseases.

Ah that must be awful for your poor girl, and so young.

I'm really sorry for your daughter that must be really hard on all of you :-(

Thankfully children are really resilient, and can handle almost anything life throws at them. They cope much better than we would as adults. She has had it since birth (she was diagnosed at 1) so doesn't really know any different.

She never complains and doesn't let it stop her from doing anything she wants to. She has older brothers who don't wrap her in cotton wool so she has to be quite tough.
She is such a lovely sunny little girl with a permanent smile and we feel blessed to have her in our lives.

Bless her, it must be tough. :-(

I know what you mean about children being resilient though. My daughter has been very poorly recently and in hospital and must have felt like a pin cushion the amount of needles she has had but has never once complained. I've been in pieces and she has just taken everything in her stride.

yes i do! its horrible and my consultant has just decided that i need surgery! don;t worry though, very happy about it actually :)

to the op, i find that there are specfic foods that do kick me off but everyone is different depending on the area of bowel effected, level or activity of the disease etc. personally i have probs with most things now but my illium is badly strictured (narrowed because of swelling and scar tissue) so if it flares up more i can't 'pass' anything through (which it does fairly often :(). mainly for me its roughage though, so avoiding things like beans, grains etc. i've also got a friend with it as well who has gone vegan and is much better now. essentially its an exclusion diet till you find what works :(

is it for you or someone you know?

> He has got holes (I know they are called something else) in his bowels which have been leading to his waste leaking into his bloodstream

fistual? i think (i don;t have that particular bit)

> he has been on so many tablets and had a hospital stay

he has my sympathy, its a nightmare, and most people just don't get how awful it is till they see it. i had a huge flare up over christmas and my sis saw how ill i was for the first time and was so shocked- folk just think its a tummy ache :( i was only diagnosed just before christmas though turns out i've had it for years. at 19 he;s the average age for it starting (i'm 23 and as i say have had for a while), though his sounds very advanced.

> he will have to be opened from his heart to his navel and it will be quite a big surgery :-(
> He will probably need a colostomy (sp) bag aswell but they hope that it would be reversable in about 6 months

they are pretty good with the surgery now apparently, i'm going in soon! and he'll feel so much better afterward. please remember though that it can come back so he must keep an eye out for symptoms.

> he was told by his gp that nothing was wrong

hm. tell me about it- 2 years i was chasing about mine. well done your mum for persevering! as to the diet thing, they probably won;t offer help with that :( during my last hosp stay i begged for the whole week to see a dietician, both to try and control it and help me lose weight incase i needed surgery (which i do!) and none ever showed.

have you been on the national association of crohns and colitis website? they have loads of helpful info, esp on getting benefits if you can't work. there is also an 18-30 year olds sufferers forum where he can chat to others with it.

big massive hugs to you and your family esp your brother.

your poor wee girl, hope she improves a bit soon

I know how exactly you feel about having surgery.

My daughter is having another surgery in two weeks and we almost look forward to it as it will provide some temporary relief for her.
Also the only time she is completely pain free is when she is in hospital having surgery and intravenously fed.

I hope you op goes well and improves things for you.

> I know what you mean about children being resilient though. My daughter has been very poorly recently and in hospital and must have felt like a pin cushion the amount of needles she has had but has never once complained. I've been in pieces and she has just taken everything in her stride.

Sorry to hear your daughter has been unwell. It's a worrying time isn't it.

I hope she is on the road to recovery now.

thank you very much, same to your wee girl.

it's my first op so nervous but just looking forward to after it! likely to have more in future :(

what i don't get is that bowel conditions are so wide spread but there is so little publicity about them, i don't think many people realise how serious they are till they are told. while they are definately not glamourous, in fact pretty yuck, it would be nice to get a bit more public support for the study of how they occur etc to figure out how to cure these things

Well he went to the hospital to see his consultant and they all agree that he has to have the surgery :-(

I know that alot of people say that they feel better after surgery and to be honest he is now bedridden again due to the pain in his legs so I guess it should be looked on in a positive light but I am really worried about him. Over here our hospital is beautiful and the cleanist place I have ever seen but back in the UK his hospital is not what I would really call clean and bless him he is really worried about the op and the worry of mrsa :-(

So sad for him and I feel so far away :-(

please don't worry yourself, i'm sure he'll be fine. i take it they won't be waiting long to do it? from everyone i've spoken to and all the research that i've done the surgery genuinely seems to make you feel so much better. i was on such a high the day my doc told me i was getting it as while there are concerns i just want days where i don't constantly feel ill, the pain, the fatigue, the nausea and vomiting, the toilet trips, i'm just so sick and tired of constantly being sick and tired! i'm sure your bro feels even more that way than i do. he's young, he'll pull through it fine and get a normal life again without pain or illness :)

about the bag btw, i was in a taxi once speaking to mum about my probs and when i got of the phone the driver said "sorry for evesdropping..." and started speaking to me about the op he'd had for ulcerative colitis and had a bag, says its no bother at all and was so so so worth the mild annoyance as he was well again :) really encouraged me so i hope that story helps you and your family to :)

I had my surgery late last year with similar to you astarte stricture problems, i had to take laxatives to go, not good for someone with a sensitive gut! feel loads better now though.

> what i don't get is that bowel conditions are so wide spread but there is so little publicity about them, i don't think many people realise how serious they are till they are told. while they are definately not glamourous, in fact pretty yuck, it would be nice to get a bit more public support for the study of how they occur etc to figure out how to cure these things

I completely agree. When my daughter was first diagnosed I was told by her gastroenterologist at GOSH to simly tell people she has Great Ormond street disease, as no-one will understand it.
People often under estimate my daughters disease as she hides her pain well and visually looks like everyone else, but she has to have one to one support at school to deal with her feeding problems, medication, and pain. The year before last she was off school for a total of 21 weeks and in hospital for 18 of those.

I shall be thinking about all of you facing surgery. Try not to be too nervous, it can be life changing if only in the short term.

thats nice to hear, glad your doing better from it.

thankfully no laxatives for me...i just vomit a lot if i get blocked :(

poor thing, she sounds like shes coping well though. i hope they figure out something that helps her.

ta, will keep the chin up!

Well he had his surgery and is now in hospital recovering, he hasn't had to have a bag which he is really happy about but he is in alot of pain! :-(

Hi Angels2, that is good news about the bag, and i am glad his surgery is done and hopefully he will make a speedy recovery, What a brave young man :)

Best wishes
Hayley x

Thanks. They have said that its obviously not a cure but it should help him with his pain. He has got to stay in hospital for the next week and then fingers crossed he can go home

You can live with this disease although not nice, and you can have long periods of remission :) helping him find out what can trigger episodes, could keep it at bay.
I wish him all the best for the future :)

thats good news! (appart from the pain obviously), i do hope it works well for him. hopefully you'll have him home soon.

Thanks all :-)