NG Feeding & Swimming & sweets permitted

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Leed2713

Leed2713

Joined
Jul 13, 2015
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109
Hi I'm new to the forum my son has just been diagnosed last week with Crohn's disease. He has had nasogastric tube fitted and will be on modulen for the next eight weeks. We are going on holiday in few weeks and was wondering if anyone else who has experienced this knows if he would be able to go swimming. Also at home he is allowed a small variety of things such as ribena sprite and 7 up. He is also allowed pear picking porky ice lollies and fox's glacier mints. Does any one know any american brand boiled sweets he would be allowed or ice lollies.
 
Dum dum lollipops are free of any protiens ( just sugar ) some Gi allow them in the U.S.
Sprite/7-up would be the same
Popsicle brand Popsicles or Rita's Italian ice are frozen mostly sugar treats
 
Thank u mr chicken that is really helpful. He is just coming to terms with the whole thing and the NG tube is still irritating him. So was hoping if had some idea of other varieties for him to try on holiday it would be great.
 
We were allowed popsicles and freezies as well but not chocolate. We were also allowed gummy candies and clear Lifesaver candies (again, no chocolate, caramel, etc.).

As long as he keeps his head (tube) above the water, I'm sure he'd be okay. The only concern would be if the tube is accidently pulled out while playing?? How old is your son? Something to consider would be if your son would be comfortable inserting/removing the tube?? My son was 16 when he used the NG tube and he quickly learned how to insert/remove daily. He ingested the formula overnight while sleeping, so would insert before bed, remove in the morning. Once he learned, it literally took seconds to do.
 
Thank u tesscorm. That is brilliant he is 12. The tube he has in lasts 3 months but he was sick and it came out so nurse had to replace it. They are going to show me how to insert it if it happens again. He is feeding at 300mls four times a day on modulen each feed takes an hour with the pump. I had red about night feeds and am going to ask the doctor tomorrow if that is possible as that might be better for him. He likes to dive so I think that would be it ruled out. Though he could have a little paddle. The rides at the parks should be ok. He is a little weak at times though so I might hire a wheelchair just for when he gets tired. Thank u so much for the foods I want him to try other things as well and not feel totally restricted.
 
That's great that you all are keeping your holiday plans. My 12-year-old daughter had an NG-tube for 10 weeks this spring. It was really uncomfortable for her for the first 2 or 3 days, but after that she hardly noticed it anymore. She kept her tube in all the time during that 10 weeks, but when she needed to do additional supplemental feeding this summer, she decided to try putting in the tube herself each night. This youtube video taught her how to do it, and gave her the confidence to try it:

https://www.youtube.com/watch?v=YJIFOCbPTjo

The first night took a few tries, but like Tesscorm's son, she could do it in seconds after a few days.

Hope the modulen helps your son get his strength back.
 
If you're going to speak to your GI, you might also ask about broth and jello (gelatin). My son was also allowed these. As he took in all his formula overnight, he wasn't at all hungry in the morning but would take broth to 'eat' at lunch with friends (and school kept freezies for him). His dinner was broth again... it's not much but it's a savoury flavour so 'similar' to real food.

At 12, your son might be old enough to manage the insertion of the tube himself?? There's a youtube video of a young girl demonstrating an NG tube insertion... she does a great job in the demo, only thing I found is she is so precise, it seems like a long process. Once my son did it a few times (less than a week), he was inserting the tube in seconds (and removal is even quicker). Would give your son the flexibility to swim, etc. during the day without worrying about the tube.

Make sure you request a thin tube - my son's size was 6Fr. This is supposedly 'infant' size but my son was 5'10", 150 lbs when using it and there were no issues.

I'm going to tag Jmrogers and Clash - I'm pretty sure both their sons learned to insert the tube as well.

However, just know that some people have a tougher time - there are quite a few kids here as well who just weren't able to insert the tube on their own.

If you look under the Diet subforum (here in the parents forum), there's a thread on EEN - there's lots of info there as well.
 
Hi pdx thank you so much for the link I am going to check it out and watch it with my son. He isn't very open to the idea of removing and inserting the tube. But this may give him the confidence to give it a try. Hi tesscorm I definitely will ask about the broth and jello. That might ease the pain. He is obsessing about food at the moment and is googling food constantly. He is saying that once he can eat again he is going to try things that he never would have before bless him. Thanks also for the tip on the diet forum een thread. I must check it out here now.
 
My son was the same way... suddenly started watching the Food Network shows! :eek: Would break my heart!

He's always been a very picky eater... I would joke with him that the 'reintro' of food (following exclusive EN weeks) was going to be my second chance at introducing healthy foods to him! :) Alas, he came out as picky as he went him. :ywow:

If he tries to insert the tube himself, have him try both nostrils. My son could only insert the tube into his left. My son didn't have a problem using only the left side - after his six weeks of formula only, he continued with suppmental EN for two years, using the tube overnight - always on the left side.
 
Oh tesscorm my son is the same that's why I'm so shocked. The pickiest of eater ever and now suddenly so open to all sorts of food. Though I'm sure it will be a different story when the time arrives. It would be great if he could cope with having the tube taken out and put in again but I'm not going to force the issue he has been through so much over the last four weeks and was suffering for long time before that. I told him I won't have any pizza again until he can eat one too. It's his favourite food so he will be looking forward to that first slice 😃
 
Don't give up hope if he doesn't want to try putting the tube in now. My daughter wouldn't even consider trying it for the first few months. But then she got more and more comfortable with the tube, both with how it felt, and with all the logistics of setting up the pump and connecting and disconnecting the tube. I think all of that made it easier for her when she was finally ready to try it. By then, she knew exactly how it should feel when it was placed correctly, which made the insertion easier for her.
 
Fingers crossed that will be the same for him pdx 🙏. He is pretty down at the minute with the while thing and the modulen hasn't started working his magic yet so still getting the stomach cramps and diahorrea. He will be more open to the idea soon at the moment he is even thinking that he doesn't want to go on holidays but we will see how the next week goes.
 
I hope you start to see some improvement. It's so hard to watch your child struggle. :ghug:
 
It really is a roller coaster at the moment. But positive thoughts things are going to get better and I know after finding this forum that we are not alone 😘
 
My daughter also learned to insert an NG tube. She'd put it in before bed, do the feed at night and take it out in the morning before school. She was very nervous about learning how to insert it, but it was actually easier than she expected. It took about 2-3 days to get used to the feeling of the tube, and another week maybe to get really good at inserting it.

Like Tesscorm's son, for whatever reason she could only insert it in her left nostril. We also used a very small tube - 6Fr and that made a difference. It was much more comfortable than the bigger size (8Fr) which we also tried.

Right now she has an NJ tube which cannot be taken out (has to be placed by radiology since it goes to her small bowel, past her stomach). We've discovered that tegaderm and duoderm tape work best for swimming. She uses different tape for every day - Hypafix tape but it doesn't hold very well in the water. She tries to keep her head above water but it doesn't always work. We always take extra tape just in case it comes off, but so far it hasn't been a problem and she's had fun swimming.

Good luck!
 
My daughter had nausea and cramping her first week on the tube. She needed to switch to a new formula, and a lower flow rate, and then she really started feeling good--no abdominal symptoms and more energy. If you get the OK to try night feeds, you might experiment with a constant and low flow rate (something between 70 and 110 ml/hour), rather than the bolus feeds, to see if that helps. If that doesn't help, then you can think about trying a different formula.
 
Sorry no tube her, my son drank the formula for the 8 weeks. My son was allowed Otter Pops, a few pieces of hard candy (like jolly ranchers). But I'm with Tesscorm if he can learn to insert then swimming should not be in issue.
He was also obsessed with food while on EEN, he did end up trying and liking one new food after it was over. Believe it or not he did not like mashed potatoes but like the last day or so of EEN I made mashed potatoes for the rest of the family (I tried to make foods I know he did like while he was on it) and he said they smelled amazing could he try a spoonfull. We cheated and I let him have a little and he really liked them maybe it was because it was the first thing he was able to eat. So at 14 years old I finally got him to eat potatoes of course he went right back to being just as picky as he was before.
Hope your holiday goes well and you are all able to enjoy yourself.
 
Hi maya142 thank you for your recommendation about the tube inserting also. I am definitely going to suggest it soon. The nurse here in the hospital isn't too keen on it. But I think it might be a really good thing and a lot of you feel it wasn't as difficult or daunting as it at first may seem. Thank u also for the tips on tube sizes and also the tape I will certainly try different tape. Yeah pdx I think it is going to take little longer than the doc anticipated. It will only be a week in 3 days time. He has had a little fresh blood which he hadnt before but think that may be due to over wiping. He has also complained a little from chest pain going to mention it tomorrow also. I am going to tell doc also about lowering dosage and what other formula is available if he may need to change. Hi jmrodgers that you for the tips on the jolly ranchers and otter pops. My little boy is the same he doesn't like potatoes but is considering it for after. I am going to get the family to eat foods that he doesn't like when we get home which will be potatoes and veg and salads. I just wish I could take the pain for him and I could be the one to sacrifice food for the 8 weeks but it's not possible. He is really weak and needing pushed around in a wheelchair at the minute as he feels faint with even a little walking. Has anyone else experienced that ? He will be starting a medication called azathioprine in a weeks time also. So hopefully it will help him to regain energy as well. Thank u everyone I really do appreciate your replies
 
My daughter was also very weak at the beginning of tube feeds. She wasn't in a wheelchair but wasn't lasting a full day in school and basically spent most of the day in bed or on the couch because she was so exhausted. She lost a total of 23 lbs and was very malnourished and very underweight (she was hospitalized 3 separate times for being underweight!).

8 weeks of NJ tube feeds later, she has gained 13 lbs and has WAY more energy. She is now getting 2400 calories - eating 1200 and getting 1200 via the tube. She can swim, she can spend the whole day with friends and when she's home, she's barely ever in bed. It will get better. It just takes time.

Hang in there!
 
Chest pain? May be from all the fluid. When my daughter was on EEN (formula and water only so no sugar treats or broth darn it), she was also placed on a PPI because of how rough the formula can be.

I think it is fantastic that you are keeping up with the vacation. My daughter was also very weak and fainted a lot at dx. It does get better. A little at a time. The first week is the hardest but when they start to feel better that is all the motivation they need to keep it up.

Good Luck and have fun on your trip!
 
My son has lost 21 lb so in hoping to see weight gain too maya142 and thank u for sharing your experience with me as it helps greatly to know it will get better. Yeah crohnsinct I was thinking fluid might be the cause but going to check it out just to be on the safe side. He is such a pale colour too. The first week was always going to be the hardest is right. I look forward to seeing him feeling better and giving him the motivation to keep this up. Thanks again everyone ur advice and tips are much appreciated
 
Good that he's starting the Aza, it can take a while to start working and reach theraputic levels. The hope is that the modulen can knock out the inflammation and by the time he is finished with it the Aza is working to keep it under control.
Oh yeah we've dealt with the pale fatigued child here. Did they check his iron levels? I know we fought with anemia as well in the beginning.
 
Yes, anemia here too at dx. My son was also fatigued at diagnosis but, he noticably improved after only two to three weeks on the formula - not quite back to normal but a definite improvement. :)
 
Yeah he actually was being treated for anaemia when we first went to the doctors. He hasn't been given any iron though since being in hospital. So that's another thing I must ask today. Hopefully in a few weeks there will be a good improvement in the wee man 😀
 
I am late to this thread but have had NG and NJ tubes many times/for long durations and have swum with them with no problems…not far, just mooching around but even putting my head under water was ok.
 
Oh that would be great. When he goes into the pool he doesn't even really swim. He just goes under the water. Seems such a shame he won't be able to do that. Though who knows in a few weeks he might be more open to the idea of drinking the modulen or even reinserting the tube at nights
 
Hi Leeds2713

We are UK based but my parents are from Belfast!

My son was 12 at diagnosis and drank his shakes as he didn't want the tube - also meant he could swim etc too. He also wanted to eat anything! He is now 16 and we still are trying to get the right regime - things have worked then changed etc but the on e standard thing throughout has been his EN shakes if he feels rough or just calm things down. So it may be worth him learning to drink them. We used Fortisip. Good luck
 
Hi positivemum

I love your name positive thoughts all the way 😃. The specialist fekt the tube was the only way for him as he was throwing everything up even when we tried him with the modulen with strawberry crusha added. He had gotten fortisips before the treatment started and fortijuice and they were just coming straight back up too. I Am hoping to try him again at some point and am going to make the modulen into ice lollies to see if that would help. At the moment his point blank refusing to even try it again. But with time hopefully he will be more open to the idea. It really is such a long process and definitely trial and error basis. I will probably be asking you for more tips as time goes on positivemum as we are on the start of our journey
 
If you freeze or heat the formula
The nutrition is no longer there
You can freeze it as something to chew but don't count it as part of his daily calories
 

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