15-year-old male with Crohn's disease

[hm_uk]

Hi everyone, great to see such an active forum of people I can relate to.

I have had an escalating problem with stomach cramps, diarrhea and vomiting for 18 months. It has peaked in the last two months or so, and it was almost three weeks ago (on a Monday) that I was so tired I couldn't speak and barely managed to get dressed. I was admitted to hospital, and over a period of two weeks was given varying amounts of parenteral nutrition, steroids, antibiotics are various other drugs, being introduced to a modulen diet a little more than a week after admittance. I was let out two weeks and a bit later, on a Tuesday, on a diet of 2700ml of Modulen a day.

Currently, I cannot have anything but modulen (which I flavour with chocolate Crusha), boiled sweets, chewing gum and water. I have been on modulen for about a week and a half. I am also taking 35mg of prednisolone a day (which will go down to 30mg this Sunday, and down by 5mg every week), two Adcal-D3 tablets and one Omeprazole. I am not feeling any adverse effects from the steroids, and have not felt stomach cramps since being admitted to hospital. I am feeling pretty good at the moment, although...

Being a teenager, I find it difficult sometimes to cope with the temptation of eating normal food. There is SO much that I miss, including pasta, chinese food, KFC, sandwiches, chicken and generally anything that isn't a liquid. My dietician had said that I could probably try a chicken sandwich at the end of the six weeks as part of the re-introduction to food, which I am really, REALLY looking forward to.

I consider myself lucky, however, after seeing that most of the problems people address on these forums are quite bad, compared to merely not being to eat normal food. I quite easily get through the full volume of modulen a day without the help of my nasogastric tube (which the doctors have left it, although I will ask for its removal). However, I'm sure you all know what I mean about the temptations when on a liquid-only diet. (ESPECIALLY KFC)

I will admit that the treatment has worked wonders for me, everyone is saying that I'm a completely changed person, and I've only done 1 1/2 weeks out of the necessary 6-8. It's just a matter of dealing with the modulen and trying to distract myself. At the moment, I am getting through a worryingly large quantity of boiled sweets and chewing gum, which I hope won't affect the outcome of my treatment. But overall, I think my story so far has been pretty good, I'll just have to see whether I have a relapse or (hopefully) permanent remission after the re-introduction

-Henry

 

[vickyhunter]

Oh god, I had a feeding tube when I was younger! when I was having a bad flare I drank these elemental drinks for a month with no food, but as I was feeling very ill, didn't do very well drinking them! so I had the tube put in and couldn't eat solid food for another 2 months. I used to make my family sandwiches all the time just to pretend like I was having a real meal time! Thinking back that's slightly strange haha.
Hope you're handling it all okay
xxxxxxx

 

[xJillx]

Hi Henry and welcome! I know it stinks that you can't enjoy your favorite foods right now, but if you are responding so well to treatment and continue to be strict until you get everything under control, you will get to enjoy the pleasures of eating once again. You may have to eat things in moderation and you may have to cross certain things off the list, but I am sure you'll be able to find things you love to eat that won't cause you to suffer. I suggest keeping a food diary to record what you eat and how it affected you. It helps to pin down safe foods and no-no foods.

I hope you continue to feel better and better and can enjoy a chicken sandwich soon!

 

[sparkles]

Hi Henry! I was 12 when I had to do my 8 weeks of Modulen, then when I was 14 I had to do another 6 months of only modulen, so I know exactly what you mean- it's so difficult, and all I wanted was McDonalds fries! haha
Good luck with your illness and all, and youve come to the right place if you need any advice or just want to rant

 

[ameslouise]

Hi Henry and welcome!

Glad the modulen is working well for you so far! I hope you can make it through successly to the end and find remission. Be careful when you reintroduce foods and for god's sake, stay away from the KFC! That stuff will kill even a healthy person!

Good luck - keep us posted on your progress!

-Amy

 

[hm_uk]

Haha, to be honest, I hardly ever eat fast food, but I've had all sorts of crazy cravings since being off food.
Thanks for all the support!

 

[vickie_x]

Hey
I can totally relate with the cravings and my liquid diet is no where near as limited! I've been vegetarian for years but the even the smell of meat has been appetizing recently, mainly because it's off-limits. But I'm glad you are seeing the benefits of Modulen and I really hope it manages to induce remission.
x

 

[ameslouise]

I hear ya.... I haven't had a salad in six months and believe it or not, I actually crave lettuce! Crazy!

 

[David]

Welcome Henry, I'm glad you found your way here. I TOO have troubles with cravings and sometimes give into it. I wish I had a good answer for you thee, but I certainly relate!

One thing I wanted to let you know is that we have a private forum JUST for teens found here. If you'd like access, send me a PM

 

[Charlotteee]

Hi, I am also 15 and I started modulen a week ago. My story is actually pretty much the same as yours, I am stuffing myself with fox glacier mints & fruits and craving pretty much any food I see. Getting really depressed and keep on crying but the modulen really works well, I have found my energy levels have shot up and haven't had a stomach ache since I started it.

The only thing that is still getting to me is the diarrhoea which is happening more frequently than before, just can't wait for the modulen to work that out. Do you feel sometimes that no one understands you and what you're going through because no one else in your family or none of your friends have given up food for 6 weeks? I do, I know no one with crohn's so it's quite nice to find this site.

Did you have any health problems before you got crohn's? I had major spinal surgery last year but before that I was normal, so now getting this I feel pretty unlucky! The thing that most is upsetting right now though is food! I miss it soooo much, do you find the modulen doesn't always fill you up? Also- I add nesquik chocolate milk flavouring to mine, would be interested in trying out the one you use, gotta make the most out of what we can have eh?

 

[hm_uk]

Hi, I am also 15 and I started modulen a week ago. My story is actually pretty much the same as yours, I am stuffing myself with fox glacier mints & fruits and craving pretty much any food I see. Getting really depressed and keep on crying but the modulen really works well, I have found my energy levels have shot up and haven't had a stomach ache since I started it.

The only thing that is still getting to me is the diarrhoea which is happening more frequently than before, just can't wait for the modulen to work that out. Do you feel sometimes that no one understands you and what you're going through because no one else in your family or none of your friends have given up food for 6 weeks? I do, I know no one with crohn's so it's quite nice to find this site.

Did you have any health problems before you got crohn's? I had major spinal surgery last year but before that I was normal, so now getting this I feel pretty unlucky! The thing that most is upsetting right now though is food! I miss it soooo much, do you find the modulen doesn't always fill you up? Also- I add nesquik chocolate milk flavouring to mine, would be interested in trying out the one you use, gotta make the most out of what we can have eh?

Haha, I am getting worried about how much money is being spent on packets of fox's glacier fruits and chewing gum at the moment, since I am getting through them alarmingly quickly! I have found people generally to be quite understanding actually, my family and my mum especially, and people often ask me if they'd rather I ate in a different room, but I don't let them - I have sort of forgotten what food tastes like anyway, only the accidental smell reminds me.
At the moment I use mostly chocolate Crusha with a bit of Vanilla Crusha as well - I think this tastes the best because chocolate was too bland and vanilla by itself was too sweet.
Yes, I do find I get really hungry on modulen despite the fact it is providing nutrition. Last night I found it really hard to sleep because my mind was racing with thoughts of all my favourite foods. Today I'm trying to go for 3.7 litres rather than the 2.7 which my dietician told me to get through, just to see if it'll keep me full.

As for my condition, I agree with the energy levels, mine have improved massively. It's frustrating because I feel like I should be eating food already now that I feel so much better. I'm on prednisolone also, and haven't seen any severe side effects, other than I think I have mild mood swings. But otherwise I am quite fortunate.
I know what you mean about depression though. Now that I'm out of hospital I'm feeling a hundred times better, but I remember feeling horribly depressed in hospital, it was a combination of the boredom and the lack of food. Plus, I hardly got any sleep while in hospital, the IV stand kept buzzing and clicking and beeping... messed up my sleeping patterns. (I was on parenteral nutrition)

 

[Charlotteee]

Haha, I am getting worried about how much money is being spent on packets of fox's glacier fruits and chewing gum at the moment, since I am getting through them alarmingly quickly! I have found people generally to be quite understanding actually, my family and my mum especially, and people often ask me if they'd rather I ate in a different room, but I don't let them - I have sort of forgotten what food tastes like anyway, only the accidental smell reminds me.
At the moment I use mostly chocolate Crusha with a bit of Vanilla Crusha as well - I think this tastes the best because chocolate was too bland and vanilla by itself was too sweet.
Yes, I do find I get really hungry on modulen despite the fact it is providing nutrition. Last night I found it really hard to sleep because my mind was racing with thoughts of all my favourite foods. Today I'm trying to go for 3.7 litres rather than the 2.7 which my dietician told me to get through, just to see if it'll keep me full.

As for my condition, I agree with the energy levels, mine have improved massively. It's frustrating because I feel like I should be eating food already now that I feel so much better. I'm on prednisolone also, and haven't seen any severe side effects, other than I think I have mild mood swings. But otherwise I am quite fortunate.
I know what you mean about depression though. Now that I'm out of hospital I'm feeling a hundred times better, but I remember feeling horribly depressed in hospital, it was a combination of the boredom and the lack of food. Plus, I hardly got any sleep while in hospital, the IV stand kept buzzing and clicking and beeping... messed up my sleeping patterns. (I was on parenteral nutrition)

Oh, yeah I don't think I was as bad as that, they just had me hooked up on a water drip before my colonoscopy because I wasn't allowed to drink, and I only had to stay in so I got used to the modulen. Thankfully when I am depressed it doesn't last too long, my family and friends are very supportive too and I at first kept away from them when they ate, and they tried not too be too up front about eating in front of me but I miss meal times now so I sit at the other end of the table so I don't smell the food but can still join in with the conversation :L. The only drugs I'm on right now is an anti acid (I think it's called) omeprozol and 1950ml of modulen a day, did you have a lot of weight loss? I think overall I have probably lost almost a stone, you can see it because my arms and legs have just lost all the muscles and my face has thinned out a bit too (which tbh I don't really mind) but I always had quite skinny legs anyway.

Does the modulen make you bloated? My stomach is sticking out like a pregnant woman :L sorry I'm asking so many questions but I haven't really spoken to anyone who is on the modulen treatment so I just wanted to compare notes

 

[hm_uk]

Yes, it does make me bloated sometimes. I got bloated quite a lot before I went on the modulen as well. It never really bothered me, although I have to say it does make me look really weird :s
I had a lot of weight loss, although it was spread over a period of about 18 months. I was down at 35 kg at my lowest 4 weeks ago, but now I'm coming up to 50 kg, so I have regained a lot of weight. And I too have extremely skinny arms and legs, which makes me look horribly disproportioned sometimes. But I am regaining weight very quickly...

 

[Charlotteee]

Oh my weight loss started 4/5 months ago I think so didn't get too out of hand. When I left hospital on monday I think I was 35.5 , I've been meaning to weigh myself to see if I have put on weight, fingers crossed

 

[Jennjenn]

Welcome

I feel bad that you have to go through a modulen therapy route. I hope it works well for you and that it brings you remission.

 

[CatLDN]

Modulen sucks, hey?!

Henry, Charlotte: Really inspiring you guys...you're so much younger than me (I'm 28) and the hunger pangs and temptations are winding me up something chronic, 3 weeks into a 10 week Modulen stint.

I can't believe one guy on here had to do 6 months of the stuff! Way to go *round of applause*

You've kinda cheered me up - the not eating is really hard. I think I'm a 'texture' person, so I miss the sensation of food actually in my mouth. If my eyes could kill, those who bring dominos into the office would be hospitalised!! Of course, i don't even care for dominos usually, but the smell is intoxicating.

I've had days where I change the consistency of the modulen to thicken it a bit, or (god, it's sad) i've sucked the lumpy bits of powder, like it was white chocolate buttons *the shame*

I did try the strawberry flavouring but I found it tasted more powdery... I've also been told to stave off everything that isn't water or modulen. I'm surprised you guys can have the boiled sweets. How does that work? Isn't it extra calories? My dietician said to leave off the herbal teas too.

I'm so tasteless and boring right now.

I wondered if anyone could help me with a couple of questions
1) I wake up SUPER early. I kinda like this because before I was diagnosed I was constantly tired and didn't understand why so I understand it's a good indication of me getting better, but I'm at work 9-6 and I get in and I'm shattered, so I end up asleep by 9.30pm. This morning my body woke at 4.25am - so it's got to now (2.30pm) and I can feel myself CRAVING more modulen (on top of the fact that I think my period is due - normally I get higher sugar cravings) Is this because I'm tired, and/or due?

I feel out-of-sorts but not in an ill way :s

*sigh* help. any advice much appreciated x

 

[hm_uk]

Wow, I think we're the same when it comes to being 'texture' people. Texture is more important than taste for me. I can't eat tomatoes themselves, but I love tomato sauce and pizza. I just can't stand the texture of the fruit.
I think boiled sweets are essentially just sugar and water, so my dietician said they were okay. I get through way too many though. Chewing gum, as well.

I can't help you with the sleeping patterns, because mine are pretty messed up too. I wake up every single night to go to the toilet, plus I usually go to bed late (usually on the computer) and wake up early (usually due to noise and light getting in, I think I'm a terrible light sleeper).

At the moment, I have been on modulen for three weeks. I may not have to do a full 6 weeks as my dietician is considering bringing the re-introduction forward because of my GCSEs in summer. I really hope he does. :/

 

[CatLDN]

Me too. I'm going to the Monaco GP, so I keep reminding myself she'll reintroduce so long as I'm good

I'm brushing my teeth after every drink cause I hated the furry white tongue - yikes! looked mouldy :/

with the hunger stuff, i try to drink at least one more glass of water, before i reach for the yellow tin.

good luck with your GCSEs! what are your subjects?
x

 

[Misty-Eyed]

Hi Henry,

Glad it's working for you so far. I have never been on modulen but have been on liquid diets before starting from when I was 12 for months on end. I had a feeding tube at the time as I couldn't handle drinking it all, although the times I've had it since, I've just drunk the cartons.

Yes, it is so hard not to eat. Not just for the taste of things and chewing but the social aspect of it. It wasn't honestly good for my mental state and unluckily didn't get me into remission.

Just remember that it's not forever and once you've finished, you can be proud that you managed to go that long without eating. You have amazing will power!

Totally with you ont he eating things just because they are off limits. I'm not allowed high fibre stuff and bran flakes have never looked so tempting. I mean.. bran flakes of all things!

I hope your GCSEs go well!

 

[hm_uk]

The furry white tongue? Is it a sort of white-green colour right at the back? I get that too! Will brushing your teeth more make it go away?
Thanks for the support, Misty-Eyed. I have to admit it has got easier as time has gone on, which was the sort of the opposite to what I had initially expected.
As for GCSEs, this year I am taking triple science, English lit. and language, history, art, geography, German, Greek and classical civilisation.

 

[Misty-Eyed]

You're welcome! Is your sense of smell now really good? I once got into my mum's car and it smelt of carrots. I told her and she said she's had a bag of carrots in there earlier on in the day. Weird.

Didn't even know people learnt Greek at school! You planning on doing A-levels after?

 

[CatLDN]

Misty-eyed, I think my sense of smell has improved too!

I pretty much did exactly the same GCSEs, except the Greek and Classics You'll ace it - it's difficult to concentrate when your body isn't playing fair but the end goal is worth it.

Yeah, with the white/green thing - brush your tongue - treat yourself to one of those dead expensive toothbrushes with the tongue thing on the head

 

[hm_uk]

Update - also need advice

It's been a long time since I last posted here. I was re-introduced to food last Wednesday and have had no problems whatsoever with it. Currently, I am on 10mg on Prednisolone, going onto 5mg tomorrow, then stopping it completely next Sunday.
I've had a few problems, however. Around the middle of this week, I started having stomach troubles. Nothing painful, at the very most slightly uncomfortable. Thursday, I had 2000ml of Modulen, two good meals (chicken, rice & minced lamb and mashed potato), as well as some extra chicken legs, and was feeling really good. Then on Friday, I woke up feeling really, really awful. Very tired, and had completely lost my appetite. All the previous days I had felt great and had managed to eat loads. I also got stomach cramps - much less frequent, but about the same amount of pain. Now I'm feeling better, but still feeling a bit tired, and my appetite hasn't come back. However, I have just had some diarrhoea, which shows a return of the symptons.
Could this be a reaction to stress? I have been taking work home most of this week - my school starts at 8 am and ends at 8 pm, then I usually finish my homework about 9:30 pm - I think it's possible because my doctor doesn't think it's a reaction to food. Also, I read about something called the 'rebound effect', is this possible too? I have tried to contact my dietician but he hasn't got back to me yet. Any ideas?

 

[CatLDN]

You have my sympathy!

Hey Henry,

It could well be stress. 8am-8pm with homework til 9.30pm is ridiculous, particularly for someone so ill. I can't empathise with your food situ, as I'm still on the Modulen (reintro doesn't start til the end of this week, but your chicken had my mouth watering )

However, I can sympathise with the stress thing. I'm pretty OCD. In school, I was always pushing myself to try and be the best, get the best grades (never did get them, but the effort was there), as an adult, I'm constantly wanting the apartment to look like a show home and be immaculate and do a 9-6 job with a 3-hr round trip commute every day, and keep up to date with ALL my hobbies, etc and the short of it is: it's just not possible.

Here's the trick, you have to teach yourself that you do as much as you can manage. You don't worry about the consequences, because really, I promise you they will be whatever they will be. I can't put my wise(r) head on your shoulders, suffice to say that GCSEs are not the be all and end all. In fact, if you managed 5 Cs (scraping through to give you the 'opportunity' to go to uni - i'm not saying you will, or you should, i'm just saying as to keep the door open), you'd have accomplished more than anyone else would have expected to, in your condition, coping with what your condition as you are. And if you don't, honestly, it won't be for want of trying, so you'll find that another door will open.

Psychologically the food thing is horrible, it makes you feel sad and weird and then you don't feel like studying, even though you may have the time. Don't beat yourself up about it. Tell yourself you're doing a great job. Because it's the truth. Focus on the subjects you're good at (or those you think will help you pursue the kind of job you want to do).

For the record, I did similar exams to you, to go onto Law and Japanese at uni, none of which I use now and will not get me into my dream career as a motorsport journalist. Go figure!!

For your languages, you may find www dot livemocha dot com useful (or not).

Keep us updated. x

 

[Lawk]

(ESPECIALLY KFC)

You seem to be a fan. You should totally watch the South Park episode on KFC Hope you get better and can fully or atleast sometimes enjoy the foods you want.

 

[Dogluv]

Hi! I too am a teen with crohns and after 1 dose if remicade I decided it wasn't for me. The side effects and risk of cancer were to scary so my doctor suggested an elemental diet as an alternative treatment. I told him I'd try it so I'll be starting it in about a week. Was it hard? And did you still have energy?

 

[guest837]

i too, am a teen with crohns!! already spoken to Henry on my thread, but it's nice to talk to others in the same boat! in reply to your earlier conversation - i also have a newly discovered amazing sense of smell - i figure it must be from the crohns or treatments!

 

[hm_uk]

A lot has happened since I last posted in this thread...
I have gained so much weight. When I went into hospital I must have been around 35 - 36 kg, now I am about 54 kg. I have so much more energy and am looking much more healthy. I am currently allowed to eat chicken, rice, lamb and potatoes, but on Friday I get to start other things, including pasta! Chicken and rice are definitely my favourite, and I am eating 2 square meals a day: chicken and rice with salt and pepper (I find potatoes much too bland), alongside 2 litres of modulen. My weight increase has slowed a lot, but I am still aiming for 60 kg.
In answer to your question Dogluv, no, I didn't find it hard. I have about 98% chocolate Crusha flavouring, 2% vanilla flavouring (the vanilla is very strong), and this combination is okay. After a while, you get extremely used to the taste of modulen and you forget what normal food tastes like. And I find, even though I am able to eat some normal food, I am still able to drink plenty of modulen.
My only problem is the facial swelling - mine isn't that prominent, but I just find it annoying. Does anyone know how quickly it goes away once you stop taking Prednisolone?

Also, I am about halfway through my gcses now. No problems with those so far. I am thinking of doing Biology, Chemistry, German, Maths and Further Maths for AS, then dropping German and Further Maths in Year 13.

 

[vickie_x]

It's good to hear you have gained weight and that you are on the slow process of reintroducing food... Don't be disheartened by weight gain slowing; slow and steady wins the race As for the facial swelling, I can't say how quickly it goes after stopping the steroids as I'm still on them but I have noticed every time I taper my face doesn't seem quite as swollen so hopefully it won't stick around long after getting off the prednisolone completely.

Good luck in the rest of your GCSEs too x