Just diagnosed - 2.3.2012

[Emzdad]

Hi all, not exactly sure what to say but my 12 yr old daughter Emilee got diagnosed with Crohns disease yesterday and I am feeling next to useless having to stand around and watch all the doctors poke and prod her, and seeing her so stressed and not being able to make it all go away.

Shes has always complained of stomach aches, which we always dismissed as growing pains, always had eczema and the occassional spotty rash, and would occassionally get an unexplainable infection ie she got a sore on her head that eventually went away after 2 months of antibiotics, and a swollen lip for the past 4 months. In an attempt to solve her skin problems and infections we gave up on the doctors and went to a naturopath who told us she was allergic to most of the things we were feeding her and we need to get her on a very basic diet. We did this and things improved a bit. Next time she saw the skin specialist they told us we were being neglectful by sticking her on such a strict diet and if we didnt reintroduce most of the things we would be in serious danger of her ending up in hospital.

About a month or so ago now she started complaining about a sore stomach more then usual and was loosing her appetite. It was around the same time she started her first year at highschool ( yr8 ) so once again we dismissed it as stressing about starting highschool. But a fortnight ago she fainted on the way to school and was taken to the doctors. The doctor told us we needed to fatten her up by adding butter to every meal and that she just needed rest, however my wife insisted on her having a scan done, Luckily she did because an hour after the scan the doctor rang her up and told her to come into hospital immediately because they suspected Crohns and she has been in the hospital since.

They want to do a colonoscopy and endoscopy but she is apparently too malnourished for that and so she will be on a liquid diet ( Modulin? ) for the next 8 weeks to try and get her stomach to start absorbing stuff again. After telling her all week she didnt need the tube she could just drink the stuff they then turned around yesterday and said no, she needed the gastro tube done. Holding her down whilst she screamed at us to stop hurting her and that she wanted to die instead of having the tube would have to been about the lowest point of my life. I know she didnt mean it but it doesnt make it any easier to hear. Anyway she had an MRI yesterday afternoon and it confirmed Crohns, so she is now laying in the hospital bed, barely moving or saying anything and looking like her life is over.

So here I am feeling completely helpless, not being able to 'fix' her like every dad should be able to. Sorry about the long winded post, after a bit of a click around I like what I have seen of this site and will try to encourage my daughter to sign up, as it will be easier for her to chat about it on the net then it will face to face with a stranger.

Cheers

 

[Catherine]

Welcome

We are new to crohn's too my 16 year old daughter was dx 5 weeks ago

 

[DustyKat]

Hi Emzdad and :welcome:

I'm am so very sorry to hear about your daughter...:hug:

Having this disease at any age is burdensome enough but having it as a child/teenager is especially cruel.

My daughter was diagnosed at 14, during emergency surgery, and she too had a lengthy period of time of no answers, or wrong ones, from doctors. I also know only too well how easy it is to find other reasons as to why they might be feeling as they are.

We have an Enteral Nutrition forum here...http://www.crohnsforum.com/forumdisplay.php?f=161...that you might to look and have other parents on here that have teenage children on tube feeds now and some that have done them in the past. There are also members that have done EN via the oral route only. Why did they change their minds about the method of delivery?
EN can be very successful at inducing remission as well as providing nutrition so at least they are on the right track there.

I know how hard this is mate, we all do and we are here for you. Any questions you have please don't hesitate to ask and we will do our best to answer. Also pop by the parents forum and have a look around, we would love to see you there...http://www.crohnsforum.com/forumdisplay.php?f=49...Things will get better Dad, I have been through this twice and believe me, it does.

Good luck and welcome aboard!

Dusty. xxx

 

[NadineDredge]

Hi. I am sorry to hear what happened to your daughter. I cannot imagine what that must be like for a parent. In October 2011 I had an allergic reaction to the Crohn's medication and came close to dying. I remember the sad look on my Dad's face as he came every day to visit me.
Crohn's Disease is very tricky and, unfortunately, it's all trial and error until you can find what works. Once you know what foods are bothersome and which medication works best, it's a bit easier to move forward.
I really hope she gets better soon.

 

[Emzdad]

Thanks for the replies. They always wanted to tube feed her due to her being very malnourished but I think they underestimated her stubbornness when she really doesnt want to do something. They started her out on 700ml of drink for the first day, they tried to tube her on day 2 but she freaked out and convulsed it back up, so they relented and said she would have to start drinking 1500ml per day which she promised to do. And she was doing it and doing really well, but with her stomach now having so much going in at certain intervals she was getting stomach aches, bloating again. They came back a couple days later and said she would need to be on around 3000ml per day ( to get her weight and nutrition levels up to 'normal' ) and they felt it would be better for her if she was tubed, getting a gradual feed over 24hrs instead of a big drink every hour or so.

Yer being a parent sucks some days, but shes a tough kid and we now atleast have a direction to head in, I just hate seeing her like this.

 

[DustyKat]

Okay, that all makes sense, she tried her way but it didn't work out, poor love.

I hear you Dad. I have seen those same frustrations and fear in my own children and it is so bloody hard sitting there hour after hour watching your child suffer and endure things that we have never had to endure ourselves. I know you know she loves you and she is so very thankful that you are there with her, at times like this they don't always say it but we know, it doesn't have to said.

She is a tough kid and that's what will get her through, and she will get through it and she will never cease to amaze you!

Do you know where your daughter's Crohn's is located?

Dusty. xxx

 

[Catherine]

Glad to hear that she moving in right direction. my daughter is having ensure once daily and we have had tears and screaming fits over that. It does get easier when the pain starts to go away and they can see it is working.

 

[BrunofromCroatia]

Hey..

Hello. Im 17 years old and i know how hard is to deal with all that. Everything's fine and suddenly one day you just get diagnosed with incurable disease. Especially in these teenage years when its all about having fun, no stress, living the life. It's hard to deal with, because your daughter is still so young. I am too. But, it depends how you look on it. With Crohns we CAN live, we WONT die. Just stick to what doctors say and pray. I had to go through all that, colonoscopy, gastroscopy, digital rectal examination, abdominal ultrasound, blood tests, urine tests. Colonoscopy i dont know how is done in Australia, but here i've done it under anesthesia so its not painful or anything. Gastroscopy could be done under anesthesia or without it. Ive done it under and it didnt hurt, just after when i woke up i felt pain in my throat. But a lot of my friends that i met in hospital went through gastroscopy without aneshesia and they all survived it. It hurts, it makes you wanna throw up but you can't coz you didnt eat anything. I've seen that you said something about Modulen. DO IT! IT'S A LIFE SAVIOR! Trust me, i was on modulen for 10 weeks without any food, just water. And the results after were amazing. 90% remission. I loved it. I still drink it cause its good for bowels. I didnt have and still dont have any problems with drinking it, like flavour is good and it doesnt smell to me. First day was kinda hard because it was new to me. But after, i just god used to it and it saved me. Don't take any cortico steroids cause i had an option to take them but i've chosen modulen cause its better and healthier, doesnt have any side effects. So talk with your daughter, tell her that she must be strong now, she has to drink it cause it will maker her better. Really!!! I recommend Modulen to all the people here. Now i eat normal and when i want i drink modulen ( 250ml per day) its good for my bowels so... Modulen diet lasts 6-8 weeks, you have to drink 2500 mililiters per day. You heat water then you leave it to cool down. It cant be cold or too hot, it has to be warm. Then you read the instructions on the bottle. It's one can of modulen for 1740 militers water. Then you mix it with mixer for about 3 minutes and its done. You can put it in a fridge or leave it on a room temperature ( it depends what she'll like better, cooler or warmer ). Then you drink it, BUT you dont drink it too fast because you can get diarrhea. You pour it in a cup and you drink it sip by sip slowly so all the good ingredients could stay in your organism.

Have faith. Be strong. Send greetings to your daughter. If she will drink it she'll get better soon.

 

[Emzdad]

She is in a better mood today, getting use to the tube and talking more, she also had some friends from school come and visit which went well. Based on the MRI she has inflammation in both the small and large intestine, hopefully in around 6 weeks that has gone down some and they can do a colonoscopy for a bit better picture.

 

[BrunofromCroatia]

I have Crohns disease of esophagus, colon and small intestine + chronic gastritis. So, lots of support for her is needed, friends, family, whoever! She's not alone in this. Have a nice day! Good luck with Modulen. :hug: