Hello, i'm new here. :)

Hello, i'm a 16 year old boy and i'm in hospital at the moment. The doctors have just told me i have crohns disease, i have been researching crohns disease but i was wondering if anyone could tell me there experiences of crohns through life, does it get any better? Can i still eat things like KFC and fish and chips? The dietrician have made me take a liquid only diet, sadly i keep throwing up and now i have to have a feeding tube put in to try and help me. Thanks!

hi Aaron,

i hope they don't put the naso-gastric tube up the nose, cos if you're sick, the tube is mighty uncomfortable. i used to have one now though i have a PEG thats the tube that goes in through the abdomen and feeds in that way.

there are loads of people, like me, that do have liquid diet, but everyone is supportive. the best thing though is you have found this site and with it hundreds of people around the world offering understanding, advice and the all important moral support that we don't always get from others.

so a very big welcome, and btw, i'd have fish and chips occasionally, but expect a bad result, lol.

best wishes,
Diane

Oh god i really hope i don't throw up They said they're definitely putting the tube in tonight. I'm glad i have also found this sight, it seems really good and i hope to get support. This is the first time i have ever heard about crohns disease so i'm quite worried about it. :S Aha i was expecting there to be a bad outcome, my mum says that when i'm released from hospital i will get a massive treat and i'm hoping for chips and gravy, i'm sure i can deal with the pain just once. Thank you for replying so fast!
Aaron

You need to give the medications time to help you feel better. I would generally try to avoid greasy fried foods.

Take good care of yourself. Work with the dieticians to figure out what foods are best for you. Keep a food journal once you start eating again, and work with your doctors.

Feel better soon.

WOW Aaron! KFC!? No way would I touch that stuff. I tried hard to enjoy many of the foods that are now only a fond memory.. What you are dealing with is a life changing event. Giving up some of your favorite foods is merely the beginning.

Sometimes, I would cut off my pinky if it meant I could eat a nice salad, or a big greasy burger! Truth is, I have to enjoy it vicariously through my wife... Not to say that you will have to walk the same path, as it has been mentioned, we all walk a different road with CD, and all that it has to offer. Why I have heard of people who manage with aciphex, or mesalamine; so who knows?? Only time, and your tummy will tell you what's good.

You do need to give your body some time, especially if you are in the hospital. Also, take the time to keep a journal of what you eat, when you eat it, and how you feel from day to day. Soon you will see a pattern emerge of what is, and what isn't good for you. Like the sticky in this forum states, we all have our own battle to fight, and what works for me, or Lydia (for example) may not work for you.

Good luck with your fight! I hope the best for you!!

Hi Aaron and welcome. I'm so sorry you're having to go through all of this *hugs* to you bud.

I'm confident your doctors WILL help you get into remission. Remission is when you don't have any signs or symptoms of the disease. Most people get there through medication and help stay there through dietary and lifestyle changes. Some people enter remission reasonably quickly and stay there for a long time. Others struggle to achieve it. So yes, there will be change and yes, there's probably going to be some hardships. How much will depend on a lot of factors such as the severity of your disease and how well you respond to the medications.

I wish you nothing but the best and we're here for you anytime

big hugs to you aaron, don't worry about the nasal tube, i had it for a year and you do get used to the feeling of it, if you are sick it is just simply taken out and put back in again.

hope you're feeling better soon!

...as for diet, there are many different opinions, personally i have always eaten what i like includng greasy food (the calories may do you good). you may notice over time certain foods making your symptoms worse, i would avoid these once you know what they are, but if you can eat kfc etc. without much change in your symptoms, i would say they're fine in moderation.

things will get better! it just takes time finding the right medication.
hope you're feeling better soon and stay strong.
hannah.

Aaron, welcome to the club, not the club anyone wants to join. I'm sorry to hear you are ill, as far as the NG tube I have had multiple NG tubes and they are not painful, but they are unconfortable. I read where you are glad you found this forum. I have only been a member for a vary short time I have been ill for so many years and I'm just now reaching out I wish I would have reached out when I was first diganosed. You will find so many people with so many years of knowleage concerning crohns. I don't post a lot but I read a lot and I see whats working for people and whats not. I wish you the best and hope they find the right meds to get you under control. David said it best you are going to have high and lows and you will have so many changes in your life and health. If you need help or just need to yell about whats going on this is the place to do it we all have been there and can feel the pain and suffering that you are going through and we understand and will not take it personally. Be safe and I wish you the best let the Dr. do their vodoo. Eric

I haven't given up any foods for good. I may limit certain types of food while I'm in a flare, but I can eat whatever I want while in remission. And even during a flare, if I'm really craving something, I'll go ahead and eat it, but know that my symptoms will worsen temporarily. It's usually worth it.

What meds are they putting you on?

Hey Aaron,

My son was 16 when he was diagnosed in May. He had the NG tube and liquid diet for six weeks. Once the six weeks were up, he gradually reintroduced all foods but is on 'maintenance' - still has 1/2 the dosage of formula, 5 nights per week. He honestly hasn't found that the tube is too big a deal! He inserts it each night and removes it in the morning. He was pretty comfortable inserting the tube within just a few days (hardest part is getting over that 'gag' reflex - just try to visualize just how tiny that tube really is as you swallow). Some people choose not to remove it and that is an option (I think you can keep it in for most of the six weeks...???) As far as the discomfort, my son said the sensation of having the tube in annoyed him for the first few days, then he just got used to it. The only other thing that really bothered him at the beginning was the sound of the pump while he was trying to sleep :angry-banghead: (but, again, after a week or two, he wasn't even noticing it). The formula ran for 10 hours per night during the initial six weeks but, ask if you can adjust the speed of the pump. My son was allowed to make small adjustments and could speed it up so that it ran for only 8 hours - this allowed him to work it in after a later night out :hockey: and still be done in time for school.

Of course, he would prefer to not have to deal with it but, he really has an easy time of it now. It literally takes him just seconds to insert it before bed. I recently asked him if, given a choice, he'd prefer to drink a 'shake' (as there are some drinkable versions available in the US and the UK but,he said if it didn't taste good, he'd rather use the tube. Actually, he's going for an MRI in a few weeks and is planning on taking his tube, pump, etc. as he'd rather take in the prep liquid by tube rather than drinking it (not sure if he'll be allowed to do this but we'll ask...:tongue.

As far as his diet, after the reintro phase, he has been lucky that he has been able to eat pretty much anything. HOWEVER, he has made some small adjustments - he's cut back on very fatty food and some fast food (but still makes the odd trip to McDonalds), will often order baked potato instead of fries, grilled chicken sandwich instead of hamburger... not always, but keeps the 'bad' food in moderation. There are other diet concerns (i.e. less fibre, etc.), but I'm sure your dietitien will advise you. So far, keeping the 'bad' food in moderation has worked for him BUT everyone's different. Follow the instructions you're given and 'test' slowly when you reintro food. As someone else suggested, keep a log of what you eat, your activities (i.e. if you are especially tired one day...) and you may start to find some clues as to what doesn't work for you.

As for the 'rest' of his life, he'd lost tons of weight but has regained all of it, has had very minor symptoms since he's started his treatment, is back to school, hockey and all his other activities. :emot-dance: The six weeks of no food was tough but it's taken him back to his old life with no side effects. You just have to find a treatment that works for you (may be the tube feeding or maybe something else but just be patient:ycool.

Good luck, feel free to ask any questions as there are lots of people who can help you here!

Everyone thank you so much! This is the second night with the feeding tube and i've gotten used to it, but yes the pump is extremely annoying and i barely get any sleep at all They make me sit right up aswell which makes it harder to fall asleep. I have spoken to the dietrician and she says the feeding tube is only going to be in for a very short time luckily! As for the food i've come to an agreement that i won't jump straight into KFC, I'll eat soft foods and like most of you have said, i'm going to keep a'journal to see what agrees with me and what doesn't Thanks for all advice!

hi Aaron, yes, those feeding pumps can be like dripping tap torture. i had mine changed recently and i've got a quieter one. its still there though, lol. so if the crohns wasn't classed as torture the pump is! you do get used to it.

good luck with recovery

Hey Aaron -- I'm doing what you talked about doing too, keeping a journal regarding the foods that agree with you and the ones that don't. Another thing that might be nice for you to do... keep a list of the foods that you desperately want while you're in the hospital and on a restricted diet, that way when you go into remission, you'll have a handy-dandy list of all the stuff you wanted to eat when you couldn't! Then you can go over it and see what foods you can work back into your diet once you're in remission! I've been doing that, it's been keeping my hopes up!

I hope you recover quickly and get some sleep! Hospitals are like the least restful place to be ever!

Hi from Australia Aaron
First mate things will get better, it just takes time for meds to start working.

Like Stephanie (chrisnsteph1022) I to limit types of food while in a flare up.
Crohn's is a lifestyle change but you sound like a smart guy, you will get there.

Feel better soon and all the best.CJ