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My boyfriend in the ICU for Crohn's fistula eating corn syrup

S

sunflowermeadow

I am the significant other of someone with Crohn's. I am in the middle of a crisis so I will have to skip the long intro and all the recent emotional issues and get right to my main question.

My boyfriend is still in the hospital due to major complications this just-diagnosed Crohn's. We thought he just had UC before and his large intestine was removed six years ago. He's been in the hospital 11 days and counting now because the j-pouch he's had for six years ulcerated, a massive fistula formed, and drained into his leg. He hasn't been able to eat or drink much the last 10 days, but his stomach bloated and swelled with bile. A few days ago they put an NG tube in his stomach so any food he eats isn't really being absorbed. Before the NG tube he only had sips of the following: Sprite, Gatorade, lemonade, and of course water.
One of my many concerns at this point is the food that is being given to him. His parents bought him Lifesavers(high fructose corn syrup) to suck on. Now today he ate four popsicle sticks from kroger (likely to have corn syrup). I am concerned because his stomach has not has food in 10 days (just IV fluids), and I fear this food may upset his crohn's more. Soon hopefully the NG tube will be taken out and I feel this may be the time to make sure his parents understand how important this is to his health. Do you think there is need for concern about a crohn's patient in ICU having corn syrup? My main struggle is getting people to listen to me about eating healthy food. I need some powerful advice, articles, or information, because coming straight from me isn't working fast enough. His family are practically advocates for junk food/fast food, they have no apparent knowledge on food nutrition. They keep talking about junk food and eating it around him while he is stuck to a hospital bed. Please help me if you can.
 
UnXmas

UnXmas

If your boyfriend is in hospital, and especially in IC, he needs to follow his doctors' advice on diet. With the situation he's in - NG tube, etc. - they may need him to follow a strict diet of liquids only, moving to pureed then soft foods, then a low fibre diet. I don't know if this is what will be recommended for your boyfriend, but it isn't uncommon for patients to follow this kind of progression back to a normal diet after going a while without much food. While he's not been eating, has he been having TPN or any kind sugar via the IV?

If his doctors don't mention anything like this, you should probably ask for their advice on diet anyway, and ask his parents to listen too.

Honestly, I don't think corn syrup will be a priority in a situation like this. Popsicles are actually a really good thing to have. Sweets to suck on make your mouth feel better when you're not able to drink much, and they're very easy on the digestive system.

What is your idea of a healthy diet for him right now? And what does your boyfriend think about it?

I'm sorry your boyfriend is going through this. Try not to worry about his nutrition. When in a situation like this, you have to leave it to the experts. If they're not helping, or you're unsure about whether they're giving good advice, I would suggest asking if there is a dietician at the hospital you can speak to, preferably one with experience of Crohn's. When your boyfriend is through this crisis, you can work with him and his parents about long term diet ideas, but at the moment it's not something that can be done without expert input.
 
valleysangel92

valleysangel92

Moderator
Staff member
Hello there,

Im sorry to hear of your boyfriends current situation, it must of all been a very nasty shock.
Diet is different for everyone, there are no set rules with Crohns and there is no evidence to suggest that any particular type of food is bad for everyone with Crohns. While it is obviously important to eat as healthily as we can, a lot of people with Crohn's actually find that eating high fibre fruit and veg can make our symptoms worse but eating sweets etc doesn't. Obviously I am not advocating living on junk food, that would be terrible for overall health, but sometimes things like Popsicles can be a good short term option if there is little else a person can tolerate.

At this point in time, the most important thing is to follow his doctors directions when it comes to reintroducing foods. Many doctors will encourage patients to start with lighter things like Popsicles but its very important to check with each individual medical team.

As for corn syrup, I don't imagine this will be a huge problem. As a coeliac on a no gluten diet, a lot of the food I eat has corn startch or syrup in it as a natural replacement for wheat and I don't find it has any impact on my symptoms.
 
valleysangel92

valleysangel92

Moderator
Staff member
Hello there,

Im sorry to hear of your boyfriends current situation, it must of all been a very nasty shock.
Diet is different for everyone, there are no set rules with Crohns and there is no evidence to suggest that any particular type of food is bad for everyone with Crohns. While it is obviously important to eat as healthily as we can, a lot of people with Crohn's actually find that eating high fibre fruit and veg can make our symptoms worse but eating sweets etc doesn't. Obviously I am not advocating living on junk food, that would be terrible for overall health, but sometimes things like Popsicles can be a good short term option if there is little else a person can tolerate.

At this point in time, the most important thing is to follow his doctors directions when it comes to reintroducing foods. Many doctors will encourage patients to start with lighter things like Popsicles but its very important to check with each individual medical team.

As for corn syrup, I don't imagine this will be a huge problem. As a coeliac on a no gluten diet, a lot of the food I eat has corn startch or syrup in it as a natural replacement for wheat and I don't find it has any impact on my symptoms.
 
L

lenny

Ironically, hospitals are not known for their healthy cuisine, but in this situation is doesn't seem like it should be the priority, since he's so sick and just needs something. But, I'm sure it would be fine if you purchased some healthier treats for him. Ask the dietitian.
 
L

lisadc1

Doesn't the hospital have him on a specific do/don't list? I would speak with them, his drs specifically, on what would be appropriate for his body at this time. When I was hospitalized back in the fall twice, not in ICU, I had a team of five drs that worked together and planned the steps to add food back to my diet and they were very particular. Not all things are bad per say, such as the popsicles. I had flavored shaved ice for example. But as others above mentioned, talk with a professional staff member, dietitian, the dr. preferrably, etc...also, try to be too hard on his family with the junk food. Some can handle it, some can't...Crohns/UC acceptance is hard on everyone.

Wishing you all the best!
 
SmellyMelly

SmellyMelly

sunflowermeadow said:
Do you think there is need for concern about a crohn's patient in ICU having corn syrup?
Click to expand...
I think there is concern for anyone eating corn syrup :eek:

http://drhyman.com/blog/2011/05/13/5-reasons-high-fructose-corn-syrup-will-kill-you/#close

Introducing popsicles after 10 days of IV fluids does not sound the most sensible plan.

But I suppose if your boyfriend is eating them and enjoying them, and going OK on them, then maybe don't cause a fuss for now.

Have a chat to his doctor (not that doctors have a friggen clue about nutrition!) and see what they say about the situation.

His family may not listen to you - but they should to a doctor if doctors are unhappy with this scenario.
 
wildbill_52280

wildbill_52280

sounds like a difficult situation.

Montmorency cherrie juice or even regular cherry juice has anti-inflammatory properties partly from anthocyanin red pigments among other molecules, and would be a much better option then life savers and soda.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1082898/


I would suggest refried beans which is a soft food or even mashed potatoes at some point when they allow more solids. fermented foods like cheese would help a little too. stay away from refined sugars and milk sugar(lactose). cheese contains very little lactose so it is well tolerated when flaring. yogurt is another option and is also a soft food. I repeat NO MILK. this advice is along the lines of the SCD diet or specific carbohydrate diet which has shown benefits for IBD.
 
UnXmas

UnXmas

I really think you have to ask his doctors what he should eat, not what any of us on this forum recommend. Once he's home, or even in hospital but having been told he can eat as he chooses, it will be different, and you can get a lot of good advice about Crohn's and diet here. But in my experiences of similar situations, doctors monitor the nutritional status of patients going without food very carefully. They are probably testing his blood daily to check for deficiencies. If he is having TPN or a sugar solution via IV, they'll be calculating what he gets from them very carefully. Don't worry about foods that websites or people online tell you are good and bad at this point. Eating the wrong thing could cause damage, but it's his doctors who will have the best idea of what "wrong" is for a patient in this state - they know the state of his digestive system. Just support your boyfriend and ask his doctors whether he is getting the nutrition he needs. If it's hard to find an opportunity to see his doctors, ask a nurse on the ward and they should be able to have a look at his notes and give you some information - ask your boyfriend first though; does he have any worries about it?
 
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P

Poppysocks

UnXmas said:
If your boyfriend is in hospital, and especially in IC, he needs to follow his doctors' advice on diet. With the situation he's in - NG tube, etc. - they may need him to follow a strict diet of liquids only, moving to pureed then soft foods, then a low fibre diet. I don't know if this is what will be recommended for your boyfriend, but it isn't uncommon for patients to follow this kind of progression back to a normal diet after going a while without much food. While he's not been eating, has he been having TPN or any kind sugar via the IV?

If his doctors don't mention anything like this, you should probably ask for their advice on diet anyway, and ask his parents to listen too.

Honestly, I don't think corn syrup will be a priority in a situation like this. Popsicles are actually a really good thing to have. Sweets to suck on make your mouth feel better when you're not able to drink much, and they're very easy on the digestive system.

What is your idea of a healthy diet for him right now? And what does your boyfriend think about it?

I'm sorry your boyfriend is going through this. Try not to worry about his nutrition. When in a situation like this, you have to leave it to the experts. If they're not helping, or you're unsure about whether they're giving good advice, I would suggest asking if there is a dietician at the hospital you can speak to, preferably one with experience of Crohn's. When your boyfriend is through this crisis, you can work with him and his parents about long term diet ideas, but at the moment it's not something that can be done without expert input.
Click to expand...
Nutrition does need to be looked at. Wht he is eating could be having a drastic effect on his condition.
 
2

24601

Location
London, UK
I know that many of us can find that diet helps but I also think it's a very tricky thing to impose on another person.

As with all treatment decisions, it's really important that the patient themself is on board and I think even more so with diet since it requires such commitment and motivation to stick to a strict diet.

Added to which, there really isn't a lot of definitive evidence about diet in Crohn's - yes, in part because studies on diet struggle to get funding but also because there are factors that will mean different diets suit different patients. Crohn's suffers may well be made up of a number of patient populations and these different populations may have a different response to each diet.

We can't know that a diet that works for one of us will work for another person with Crohn's.

And that's even without factoring in the specific environment of each person's bowel at any given time - strictures, gut flora etc.

Very few Crohn's patients have managed to control their disease with diet alone (although I think many of us have wished to and tried to).

If diet has any part in treating the disease, rather than just managing symptoms, then it is only one part of the solution for the vast majority of Crohn's patients.

It may be very difficult to persuade your boyfriend that giving up the popsicles and lifesavers is a good idea if these are the only things he gets to taste right now.

And you should be aware that you may be taking something away from him that might make no difference to his disease - and that is helping him to cope with this situation.

All you can really do is tell him about your concerns about how diet might be affecting his disease (and understand that this may well come across like you are blaming him or his family so be very careful how you approach this!) and see if he is motivated to talk to a nutritionist about dietary adjustments or to explore the various diets that Crohn's patients have tried with some success when the time is appropriate for him.

And for you to remember that what has worked for others may not work for him - and also that he may not want to adjust his diet because that's his choice too.
 
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Jmrogers4

Jmrogers4

If he has an NG tube in, Is he currently being given formula through that? My son was on EEN for 8 weeks, formula only we did not have an NG tube because he drank the formula but many of the kids use an NG tube since it doesn't taste that great. Most of the formulas are made with corn syrup and broken down proteins/nutrition so that it is easier to absorb. When my son was on EEN he was only allowed a few small pieces of hard candy like lifesavers which is just pretty much pure sugar as his system did not have to work hard to break these down.
At the time it was mostly about getting calories and nutrition in him and he was able to return to a healthier diet when things were under control, but as so many have said it's so individual as to what can set you off. My husband and son both have Crohn's and what they can/can't eat is completely different.
 
UnXmas

UnXmas

Jmrogers4 said:
If he has an NG tube in, Is he currently being given formula through that?
Click to expand...
I'm not sure if this is always the case, but when I've had NGs to drain bile and other stuff from the stomach, they couldn't use them for feed as well. (I guess because it would end up going in the wrong direction.)
 
David

David

Co-Founder
Location
Naples, Florida
Short term I don't think some lifesavers or popsicles are going to matter. If they help lift his spirits and take his mind off his situation, then I have no problem with him consuming them. They're not going to make or break the situation he is in. Once he's better, then a change in diet would be a good idea in my opinion.
 
L

Lindseyw4

I would chill on worrying about the corn syrup. There is no evidence of nutrition/diet making a difference in Crohn's. As the others stated, its not about how healthy the popsicles are--it's about him staying human and still getting something to "eat" and taste. Popsicles won't kill him.
 
T

TryingDiets

I agree that at this moment he is zonked and should not be bound to normal protocol for anything. Once he gets out of the hospital, it may be worth trying something low starch and anti-inflammatory like GAPS, Paleo, or the Specific Carbohydrate Diet.

I have had a lot of luck with both of these since my diagnosis. There are many churches of diet out there. But for IBD, I feel that SCD is worth committing to for a few months. It will be challenging for someone with no family history of preparing their own food.

That being said, the less processed, sugary, and starchy foods he sticks with will likely help. I am no physician, just someone who has been asymptomatic for nearly two years due to trying various diets which abstain from lactose, starches, grains, and sugar. You have to make all your own foods, but it is better than the alternatives which don't seem to work for most people.

When I was first diagnosed, my doctor told me: Don't worry, diet has nothing to do with this. I found that hard to believe, considering the entire disorder is rooted in the digestive system. My experience has been fairly consistent in proving that diet matters. I feel it quickly when I get dosed with something "illegal" on SCD.
 
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