I am so confused

[jack's mom]

My 8 year old son was diagnosed after being hospitalized in May and then again in December. The first time, nobody could figure out why he was so sick, so I will skip to the second time. He presented with the same symptoms, stomach aches, swollen joints, mouth ulcers, fever, rash ect. Since the only thing they hadn't tested for the first time was Crohn's, thats where we started with his symptoms in December. He was diagnosed with Crohn's after two scopes, MRIs, ect. Anyway, now I am just so confused with one thing in particular...food. He has never been a kid with diarrhea, always more on the constipated side. i understand there are certain foods he was to avoid while sick (popcorn, things that would cause gas,ect) but now he seems able to (and does) eat everything without problems. Is this only because he is currently taking steroids? Does he need to avoid certain foods like dairy to help him avoid a flare up? The DR. said he is clear to eat what he wants, but from what I read, so many people have a list of "avoid" foods. Can I keep him from having a flare up by avoiding certain foods? It all seems to vary so much from person to person. I dont like the idea of him being on the meds they have prescribed him, but I plan to trust the Dr and listen to his advise for now. I just feel so lost and confused.

 

[mickey]

It is different for many, so it is a trial and error. However, follow the route that the more healthy and nutritious food you put in, the better his health advtange. Eliminate sugars, as that can help disease progress. Some times you can have a bad reaction to a food, keep it off the diet for a short time, reintroduce it and then not have an effect, unless you continue on it. Moderation is probably your best bet.

A Chinese doc recommended to me to bake apples (w/cinnamon) and other fruits (although he said bananas are fine) I would strongly suggest probiotics. Read up on natural ways to improve health and keep that in mind when addressing his diet. While he may be ok'd by doc to have anything, if he has any reaction, avoid it. You want to eliminate long term inflammation, so you can reduce disease. Again, it is different for everyone, so good luck!

 

[DustyKat]

Hi and :welcome:

I'm sorry to hear about your boy and what he has been through...:hug:...Mickey has given you great advice and please have a look through the Diet Forum. Steroids may well be the reason why he is now able to eating anything, perhaps a combination of appetite stimulant and decreased inflammation. You will also find a number of people here that don't have diarrhoea as a symptom of their Crohn's but tend toward constipation instead. This is more likely to happen when Crohn's isn't located in the large bowel.

Many doctors will say diet plays no part in IBD and some sufferers finds it doesn't but many find it does. It is a very individual thing and opinions are just as varied, I personally don't believe diet will prevent a relapse but i do believe that whilst in remission it maintains a feeling of wellness and when flaring it certainly can alleviate symptoms. Perhaps if diet does play a role in preventing flares it isn't just diet alone but the whole lifestyle that surrounds it, both physical and psychological??

What medications is your son taking?

Also have a look at the Enteral Nutrition forum.

Good luck Mum and welcome aboard!

Dusty. xxx

 

[Sascot]

Hi, I know exactly how you are feeling. I was confused when the doctors said my son was able to eat anything as "there is no scientific prove that avoiding anything particular is beneficial". It seems to me that if a condition involves inflammation of the stomach - surely foods would help or make it worse.
I have just done alot of reading of this forum and various books, etc. I think it is just trial and error but to be safe we are sticking to white bread instead of wholemeal and cereals that do not have too much fibre/wheat. He eats more oat or rice based cereals.
I have also started making sure I cook all his vegetables and peel his apples so there is nothing too hard to digest. If he has something with skins I tell him to chew it really well.
Have no idea if it is making any difference but hopefully it helps.

 

[imaboveitall]

The posters above me said it well, but I'll add that Violet's doc never restricted her diet. She has always eaten everything with no detriment linked to it.
I'd second the INDIVIDUALIZED factor; for some, diet is a HUGE player in how their disease acts. It may be so for your son, or may not be.

Yes, I know this is the MOST confounding and exasperating answer. I like definite black and whites, too.
All the variables with this is my version of hell. Sorry you're in it with me, but here's some :heart: and understanding for you from a fellow frustrated party.

 

[Johnnysmom]

Welcome to the forum. Your son's case sounds exactly like my son's. He too suffers more from constipation and seems to be able to eat anything. My G.I. said no food will cause the disease to progress but some people will definitely have reactions to certain foods. I compared it to my IBS, I do not have crohn's but certain foods upset my tummy so I just avoid them.

Because my son is 11 and went so long not eating anything I was so happy when he got his appetite back and I didn't want to restrict his eating. Now we are working toward making healthier choices slowly. I try to give him at least one drink a day that has both veggies and fruit. I try to give him high protein foods like chicken, and peanut butter. We don't avoid sugar, he is 11 years old and will have this disease his whole life at some point he may truly be unable to have any candy etc. so I am not going to take it away from him now. But we try to be reasonable about how much sugar he has. I also now buy whole milk and try to load up everything with extra calories. I do try to avoid things with preservatives because they are just harder to digest. Every once and a while he will just not want to eat something (like eggs) because it just makes him feel sick thinking about it. I tell him to listen to his body and if he doesn't want to eat it he doesn't have to.

I remind him that his body needs healing and will run better if he makes good choices about what he eats. But I do see it as a process, and ultimately as an adult he will have to decide so I want him to have some control over things now.

I hope this helps, I know it is overwhelming and we all just do the best we can. It is so nice to be able to read all the different approaches and experiences.

Tiffany

 

[Tesscorm]

Hi Jack's mom,

It is so very confusing and frustrating!! I remember feeling as confused and lost when my son was diagnosed in May! Uggh!

But, ditto to all that's been said above. Our dietitien explained it closely to how Dusty said it... our GI and dietitien also don't believe that diet will cause or prevent a flare, however, diet can help alleviate some symptoms. They also made the point that a healthy diet, in general, will make you feel better.

The only guidelines/restrictions we were given were:

-no seeds (sesame, sunflower, tomato, cucumber, etc.), popcorn or nuts (peanut butter, nutella are fine, just not 'pieces' of nuts). These were restricted as they can 'bulk' up and contribute to an obstruction if there is swelling in the intestines.
-fruit/veggie skins - not completely restricted, however, we were warned that the fibre may be more difficult to digest.

Other than these restrictions, my son eats everything. I 'try' to keep his diet relatively healthy but, as a teen, he does regularly have pizza, McDonalds, etc. while out with friends.

At the beginning, and even now with a new food, I give my son only a small amount of anything questionable (fruit, whole wheat, etc.) and, if all goes well, then will increase the amount the next time, etc.

Good luck

 

[jack's mom]

Thank you ALL for the great advise. I am a person that would like to be able just know know what the right thing to do is RIGHT NOW, but I understand it will be a trial and error process. If I hadn't seen the pictures of the scopes they did with my own eyes, I would still be skeptical of the diagnosis. I think it will take some time for me to simply accept the diagnosis. The steriods' side effects are driving me crazy! He's gained 9 pounds in a month and his cheeks look like they are about to explode. He cant sleep and his mind is going a hundred miles an hour at all times. The weaning process is taking FOREVER! 6 more weeks to wean him from 2.5 ml to 0. I am very thankful that I have found this website so I can read other people asking the same thing I am thinking. Thanks again everyone!

 

[Dexky]

The pred cheeks will disappear soon after the taper. Have they pxed any other meds?? These diet questions are certainly something we've all been through. I've found Tiffany's^^^ approach to be nearest ours. We provide wholesome foods and let him choose. We minimize but don't eliminate his sugar and candy and other junk food intake. My son still eats raw broccoli, cauliflower and carrots but I warn him to chew,chew and chew some more. He won't eat strawberries or uncooked apples. No popcorn or corn, though he has no problem with corn flour tortillas. Overall, I'd say his diet is more healthy but not drastically different from the average kid his age. He always carries his lunch to school too, I might add.

He had all those symptoms in May and chrons wasn't even considered???? Where do they find these doctors??

 

[Tesscorm]

Hey Dex, at least HALF the doctors ended up in the bottom half of the class and someone always came last! :lol: I guess when we all meet as many as we do here, we're bound to bump into a few of these!

 

[imaboveitall]

Yep, Tess, indeed, and I have known more than a few.

A joke from when I was in grad school in a related field:

Q: What do they call the guy who graduates last in his class from med school?

A: Doctor

 

[Clare82]

I have Crohns and it looks like my 11 daughter has it aswell, she's lost lots of weight, anemic, stomach cramps etc. She was referred to a paediatrician who said if there was signs of crohns in her stools then she will be sent to a childrens hospital to see a gastroenterologist. I had a phone call from the hospital to say she is being sent to the childrens hospital! It's been really hard watching her suffer the way i did. But i'm grateful that i know what foods causes me problems so can help her. I was told when i was diagnosed to avoid things with a skin/peel on them as the body can't digest them. I have to avoid pulses (beans, peas etc), nuts, high fibre, and things with seeds in them.

 

[jack's mom]

Besides tapering off the steroid, he is taking 500 mg Pentasa 3x daily, 30 mg azathioprine and a multivitamin with iron.

Today was bit of a scare, he hasn't been sleeping much because of the steroid, but today was a different story. He woke up at 6 am with a bad fever and croup-like cough. He was complaining he couldn't breathe and was weak and dizzy. I gave him a bath (hoping to open up his lungs, ect) gave him some tylenol (I read somewhere he shouldn't have ibuprofen, is that right?) and put him back to sleep. Well he slept until 2 pm!!! That was 15+ hours in one night compared to his average 10 that I have to force him to get. Well when he woke up he still had a fever and a small cough. He is also complaining he has a few sores in his mouth. I gave him some more tylenol and his meds and he seems to be doing a lot better. Fever is gone, and he seems to be breathing ok. I was hoping to just make it thru today without going to the ER and hopefully I can get him into his ped Dr. tomorrow. His GI doc is 3 hours away so I will call him first. I HOPE HOPE HOPE they don't link this illness to the tapering and try and back off the tapering. His GI Dr. made him get the flu shot last friday and I know his immune system is compromised. I am just hoping whatever he has just goes away. This whole thing has my anxiety levels all fired up again.

 

[izzi'smom]

We tapered a few times and never had an illness, and I give Tylenol and Motrin both. After a bath an open window also helps for a croupy cough (we slept with the window open for 3 nights to avoid the ER last winter...BRR!) The mouth sores may be Crohn's related. At any rate, I hope he is feeling better soon!!

 

[DustyKat]

I hope things settle again for your boy, good luck with the GI appointment and let us know how you get on...:hug:

Ibuprofen is a NSAID and they are contraindicated with IBD because of the gastro upset and bleeding they may cause, so you are right to steer clear of them.

Dusty. :heart: