to not know how to help my 15yr old daughter make a choice

[aimingforthesky]

She has eaten NOTHING for 36 hours.

She was diagnosed with Crohn's disease on thursday after months of nasty tests and investigations. Had the choice of having 8 weeks of high dose steroids- with all the side effects - or 6-8 weeks liquid meal replacement. She decided to give the liquid a go and had a taste test to chose strawberry/ chocolate flavour.

She was meant to start yesterday but had a few sips and said she felt sick and refused to consider trying again. I completely understand how difficult all this is for her and how she does not want to have either choice but cant let her carry on eating nothing-- any suggestions??

So sorry sounds very tough. I heard of Crohns disease just the other day and did not realise what it was all about. Perhaps try

www.crohnsforum.com

I am sure you and your daughter would find some help there, it may help her to chat with other sufferers. Sorry couldnt be more help and good luck.

How awful for her and you having to watch her go through this.

I suggest that you call the Consultant and ask what to do? Obviously you cannot force her to drink the liquid, but this is going to be like one big vicious circle if not sorted out as quickly as possible.

Can I suggest this website for the forum

My DH suffered with Colitis for many many years (he has since had two ops) and has made a full recovery.

Our friends son has Crohn's and has just done the liqiud meals after a flare up. I know that this causes huge arguments in the family as he does not look after himself properly (he is 19 and obviously he knows best!!!)

Thank you handsoffmycake - I just found that site last night, it is useful but DD is refusing to talk about her condition and I havent been able to suggest she looks at it.

Forgot to say, my DH talks to people for the Colitis organisation - they may have been newly diagnosed, be pre/post op and are unsure of what is going to happen etc. I would think that Crohns have something very similar.

Thank bellavita- I think I will have to ring the consultant on monday. I am just so frustrated that she finally has a diagnosis and a possible treatment but she can't take it.

It is a lot to take in though for you and her and as difficult as it is, this thing has taken over her body and it must be distressing for a young girl who should be out enjoying herself.

I would think, if she is not careful, they will admit her into hospital and do this intravenously.

As she had to miss a lot of school?

I have heard that if you mix up the liquid drinks and freeze them to a sort of ice-cream consistency, or even ice pop, they are not as bad...? Perhaps you could try something like that.

She is distressed! But internalising everything and has taken to her room since 3pm yesterday.

I almost hope she does get admitted because she does not want to listen to me. She is an intelligent clever girl and has listened to all the advice so far but I think she feels tired of it all and wantsit to just go away (as do I )

She has missed odd days here and there but has managed to keep at school until now- high achiever and wants to do medicine at uni so very motivated.

Can you try vanilla instead? Or any other flavour? Is she drinking water at least? Good luck.

PickleFish I havent tried that yet -I had read it could be frozen into lollies but didnt think of it like icecream.

I wil see what she wants to do today and if she just wans to eat her normal stuff today that's fine with me. I will talk to dietician and consultant tomorrow

Thank you everyone - it has helped to write these things down.

I have Crohns disease. It's horrid. Life consuming, thought consuming and embarrassing. Diagnosed finally at 20 after years of symptoms. It is really hard getting a diagnosis. It's final. There is no cure for Crohns and you know from that second on that you'll be on drugs your whole life, that you'll miss out on lots cos you can't go anywhere where there isn't a loo right by there (!)

You think what man would want me? I have permenant poo troubles it's hardly romantic!

4 years later and I'm engaged, my medication has things pretty good and life is oh so much better emotionally.

It's common for people not to eat (I didn't) as a 'side effect' of eating is pooing. Your daughter may be like me, if she's empty is makes the symptoms so much better.

If the steroids is just for 8 weeks I'd chose that. I was on steroids for a Year. But I don't remember the side effects coming after only 8 weeks (and I had a high dose) so I think shed be fine. And they are amazing drugs I felt AMAZING on themlike I was cured. Shame you can't take them longterm!!

Love to your daughterand remember that emotionally it's a tough fucking ride for her right now

Poor kid.

I know there will be better qualified people to talk about this.

But just s thought to try.

If she is a high achiever and wants to do medicine. What about asking GP / consultant for some help. Ask them if they would talk to her about her condition as if explaining it to a new med student. She may find it easier to "pretend" that it is happening to someone else. Like this is me and my chrons in a serperate entertiy. I know this help with my Goddaughter when se was diagnosed with nasty condition.

also what about a family friend, aunty, big sister type person is they anyone she can off load to? May be easier than talking to mum as I am sure you are worried about her future and the effects of the condition for her and family at large. Which maybe worry her in talking to you as she does not want to make you more worried.

Finnally I live on high dose steriods for asthama, have takend them for over 12 months before. I assume she is worried mostly about the bloating but PLEASE reassure her that would be very rare in a 8 week dose, and IF it does happen will go with time after she is off the steriods.

I know there are several "femal role models" in the public eye that have chrons. The first one I can think of was a singing coach on that one were the singers lived in a big house kind of big brother meet pop idol. But there are some more.

I also second the idea of see if there is a "newly diagnosed" support group I have been involved with 2 in my life one of brittle Asthma and one of epliepsy and it can really help talking to someone that has had the condition for a long time and has been there done it got the tshirt. I used to get the oddest questions. relating to side effects, drug ratios, what do you do about holidays, how will I cope with my boyfriend, when do I tell my friends. etc people (particullaryl girls) worry about asking dr "embrassing questions" and felt it much easier to ask a buddy. We were also there for crisis time, so if someone was having a sver asthma attack they could call us, we would call the ambulance, talk to them, get them into the right positions to breath, chat away about the weather to keep them calm. We also offered family support etc, and many of us trained as conselers (sp) to be able to help out with the tougher issues.

So give her support, and try to get some outside help.

Good luck and remember this is not a death sentance and will in no time just be part of ordinary life.

It is hard intailly to and everyone with a chronic condition thinks that life will never be the same, and it won´t be but it will be as good as it was befor, and sometime with control (medication, diet changes etc) it can be even better

Sorry just another thought. A lot of people diagnosed with chronic conditions feel that there life is totally outside of there controll. In these cases a lot of people use food as a form of control. eg. I can do nothing to controll x but I can not eat. This I assume is doubly bad, as the condition she has there is a direct result in not eating.

BUT you make no mention of her doing this befor diagnosis.

So her is another thought, the shock of diagnosis could be pushing her into temporary depressive state and the only controll she feels she has is to not eat.

Please, try and find someone for her to talk to.

I personally don't know what things she can have as I have no knowledge of crohns. But, I know flavored water is good (volvic is the nicest tasting stuff, you can get it with sugar or sugar free) when you are hungry or want to work up to eating something. I'd also suggest yoghurts like muller light, and perhaps fruit smoothies? V8 do vegetable and fruit juices that are extremely good for you, so I'd recommend them as well.

Hugs and best of luck to both you and your daughter.

Gosh thank you everyone who has posted.

An update- lovely DD woke this morning and has decided she will try again today!! Had a 'milkshake' before church where the talk was all about food and associations we have and its importance in the story of Jesus and the passover meal so was able to have a bit of a giggle thru that.

So far has managed 750mls and has asked to have a 'reward' for each week she manages (I had offered this as incentive yesterday) So will have cheap DVD for managing 48hrs, and choice of any CD/DVD for every week she completes and thorpe park or alton towers in 8 weeks when able to have normal food. (broke at moment as DH out of work past 2 months but will find it from somewhere)

aimingforthesky if you buy anything from whs smiths they will give you half
price vouchers for alton towers we
went last week with them .

Sorry I have no advice other than she will talk abou it in her own time she probably needs a few days to come to terms with it herself
really hope she feels better soon x

talk about it in her own time

Sorry stupid iPhone messed up post

Aimingforthesky My sister is the same age with Crohns, she was diagnosed at 10. After years of steriods they stopped working for her, the horrible milkshake became her only option (it really is horrible, have you tasted it? Yuck!!!) she felt completely unable to drink the liquid due to the taste.
We tried adding everything to it - milkshake powders and syrups but it didn't help.
My sister was able to be tube fed the liquid during the night as she was sleeping, we learned from the hospital how to insert the tube through her nose and test to make sure it was in the right place and set up the machine. She was very lucky and took to it really well, we could insert the tube at night and in the morning she would pull it out herself to go to school.
This may be an option for your DD, I know it sounds horrible but it worked wonders for our family.
I hope she can open up to you soon, if she has any questions send her my way I'm sure my sister would be more than happy to help. :)

Aiming, I've had Crohns for 10+ years now, and I can really understand how your DD feels. It's a truly horrid disease, and she has some tough times ahead of her while she comes to terms with it.

Really good that she's agreed to try the liquid meals again, they will make a difference to the way she feels both physically and mentally. See if you can get other liquids into her too, if you can? At this point, you need to try and forget everything you know about the right way to feed your kids, and just get some calories into her.

So...any kind of milkshake that she can tolerate (McD's are shockingly fattening!), soup as long as there are absolutely no bits in it, basically anything that she just has to swallow. She doesn't need to stick to just the liquid replacements if she can tolerate other things - I went through phases of drinking masses of Bovril, for example.

I've never said this, but please PM me if you want some ideas/help? It's a miserable thing to have, and took me a long while to adjust to the idea that it was forever. I can't imagine how I'd have coped at your DD's age.

There are all sorts of simple things you can do to minimise risk of accidents, and basically live 'normally', but I hit on them by trial and error. Very happy to help if I can.