Hi, I'm new here and recently diagnosed with Crohn's disease and I need support

[_Sarah_]

Hi I'm new on this forum and i'm recently diagnosed with Crohn's disease. I had been having diarrhea for 2 months and lost 20 pounds so my parents took me to the hospital (I'm 15 btw), I had a gastroscopy and a colonoscopy etc. and they diagnosed me

I'm on a Modulen ibd liquid diet now, and on Pentasa, antibiotics and antiacids. I'm soooo depressed right now my life completely dropped I mean I have an incurable disease, I'm on meds and on this Modulen diet T___T I know it could be worse don't tell me that but you know...

I wanna know if anyone out there had a similar treatment with the Modulen and if so, do you have any tips to drink it and to keep your head high? Cause right now I honestly feel like giving up and I don't always take my pills, not that I dont want to but I completely forget so I end up taking 1 or 2 doses instead of 3 a day.

Anyway so any tips that can cheer me up a bit or just to help me get through that would be very welcome :sign0144:

Sarah, 15

 

[Catherine]

Hi Sarah, my Sarah was dx with in late january. I can't believe how far she has come in the last 4 months. I 'm sitting at a swimming meet waiting to watch her swim. Have you got a pill box, it doses make remember all meds easer.

 

[Clash]

Welcome to the forum, Sarah! My son is 15 and was diagnosed this year too. He is on remicade and we have no experience with modulen. Just wanted to agree with Catherine that a pill pox might help you remember.
You might want to check out the teen sub forum on this site as they may give you some insight on how they dealt with the overload of info.
I hope your meds and treatment bring you quick remission!:ycool:

 

[changeiscertain]

Hi Sarah, I don't have experience with Modulen but I can tell you that when I'm at my sickest in a flare it feels like things will never get better and life will always just be that way but I promise you, it will get better. Make taking your meds a priority. You can set an alarm on your phone maybe. If your meds don't help you get better then your doctor will try something different until the right combination for you is discovered. Hang in there, I know it's really tough but you can make it through this flare and there is hope beyond it.

 

[Tesscorm]

Hi Sarah,

I'm so sorry you have to deal with this... It's certainly a lot to take in and learn to deal with... but, things will turn around, you will feel better and the liquid diet isn't forever (I know, easy for me to say :blush.

My son also did the diet for six weeks (when did you start?). But, instead of drinking the shakes, he ingested the formula overnight through an NG (naso-gastric) tube. It was very easy for him to learn and only takes seconds for him to do (he removes it in the morning). Are you allowed any other fluids? He was allowed clear fluids - broth, freezies, gatorade, clear juices, jello, lifesaver-type candies, etc. This helped him during the day as he 'ate' only overnight. He began to feel better fairly quickly after beginning the diet. After the six weeks, he gradually added back all foods.

If you're finding it hard to drink all the shakes, I have heard of some people freezing them/making popsicles. If you're interested in trying the NG tube, you could try having half the quantity during the day as shakes and having the rest overnight through the tube??

My son also went through 'waves' of food cravings... so, if one day or week seem a bit tougher, try to hang on... the next day/week may not be so bad :ghug:

As for the medications - do you have a phone with a calendar? If yes, enter in appointments/reminders for your meds. I have to take some medications too and also forget :yrolleyes: I have a message pop up on my computer screen to remind me :blush: But take take the meds right away!... if I close the pop up without taking my meds, I tend to forget AGAIN! :ybatty:

Have you had a look through the teen forum? I'm sure you will find others, your age, who have done the diet and can probably give you more tips!

Also, have a look in the Parents of kids with IBD forum, there's a thread there called Kids on EN - there are some success stories just about EN which might help you when your feeling the diet is a bit tough... :ghug:

And there's an Enteral Nutrition forum under Treatments - again, you may find others who have done the diet and can help offer you suggestions and support!

Good luck, I hope you're able to get through this as easily as possible! It's a safe treatment (no side effects!) and has as good a success rate at inducing remission as steroids (I'm sure you've heard this from your GI :blush.

:ghug:

 

[ChickensRule!!]

Hi, welcome to the forum, I know it's probably not where you want to be but it is a great place for support I am 13 and was recently diagnosed in may, and am also on an ensure liquid diet( similar to modulen)so I know how you feel. It can seem really hard at times but you have to remember it will get better! I am also a bit depressed, but if I just think, hey it's only 2 more weeks( been on it for four) so I think I can do it! You are strong, and I know you can do it! Also to help you remember to take your pills maybe set an alarm on your phone or write it on your hand if not! Good luck! Also, for the modulen, make sure they are really cold, they taste a bit better, and then just chug them back!

 

[simon47]

Hi Sarah and welcome . When i read about another young person being diagnosed with CD, I have two thoughts. First it SUCKS at any age to have this problem, and it seems like your whole life ahead is screwed...it isnt. You are actually lucky to have been diagnosed so that you can get the treatment you need. I've have CD since my mid teens, but it was misdiagnosed for 30 years..so I had no meds to help, and it was my quiet shame. Diagnosed three years ago..surgery and meds and I am now in remission. And I tell anyone who will listen about Crohn's Disease. Feel free to ask as many questions as you want..lots of friends here on this site

 

[Angrybird]

Hello Sarah and welcome to the forum, I am sorry to hear about the diagnosis I myself was on Modulen last year and found that popping it in the fridge so it was cold when I drank it really helped. Also were you given a choice of flavouring powders? I went for strawberry and banana and these tasted a lot better than the other shakes I have had to have in the past.

I know there is a lot to take in when first diagnosed but please do try to take all the meds as prescribed, as mentioned a pill box may help or a reminder on your phone? Missing doses will always mean that the med can't do it's job properly and therefore can delay improvement for you.

You have definetly come to the right place for lots of helpful info and support and please do check out the teen forum

AB
xx

 

[Aura]

Hi Sarah

And welcome to the forum - it's great that you have found us all here - I am sure you will meet some great mates here.

I put all my pills is a pill box - I have three x weekly pill boxes for breakfast, lunch and dinner.

Crohns does suck and does mean that you have to take on more responsibility for your health than you would like to at times, such as taking your medication regularly.
Keeping the drinks cold is great advice - I found them easier to drink.

To pick myself up I do something that I like to do that makes me feel good - I like to bake and cook and I keep telling myself that "I am a good cook". What do you like to do? Do you like music? or reading? Give yourself time to wallow in things that make you feel good about you or that you enjoy doing and celebrate it.

 

[Adil]

Hey Sarah, im soooo surprised at ur story, its exactly like mine Im 15, got diagnosed with Crohn's 6 weeks and JUST finished my modulen diet and i'm also on Pentasa and other things like Omeprazole . I know how u feel but it gets WAAAAY better after a few weeks into it and you'll grow to get used to Modulen, i know it sounds crazy but trust me u will =P (try it with a straw, it helps keeps ur nose away from that nasty smell and flavourings really help too,banana flavour's really good :lol. Always take ur meds, i keep alarms on my phone which helps a lot. Keep going and stay strong