Hi
@Cedar. My heart goes out to you both, and I hope the GI doc will get back to you soon and that you will find a dietician to help. If he needs to be admitted for testing or NG feeding and fluids, the GI doc may be able to arrange for him to be admitted straight to a single room without the need to go to the emergency room first.
I'm sharing some of my very limited experience of eating issues not because I'm suggesting your son will be able for any of this now, but in case any of it is helpful to you in the future, when he's not in such a crisis.
My eating issues did not get as bad as your son's. But as you know, I have had some eating issues. About 5 years ago, I suddenly developed intolerances to most FODMAPs after 6 months of intermittent bowel issues. That caused me to feel full of air after meals and have crampy pain, nausea and diarrhoea. So there was a period of a few months when I was not getting normal amounts of food, before we got my meals sorted.
Then a few years later, I had a 3-month period where I could eat very little and lost a lot of weight. My normal weight is only just into the normal BMI range, so I was in trouble quickly. I felt very uncomfortably full all the time, despite eating at most one-third of what I usually ate, and sometimes barely anything. I needed a medication to promote gut motility taken 30 mins before eating, and a dietician's help to put it back on.
Those two periods were very difficult for me and for my carers as we scrabbled around trying to find things I could tolerate, so I can only imagine how difficult things are for you and your son at the moment. There was a lot of trial and error, which was exhausting and frustrating for us all, but things did improve.
The basic principles the dietician taught me about maximising nutrition when intake is low were:
- first priority was protein
- second priority was fat (can be tough on stomach, but has 9 calories per gram, sauces, olive oil etc)
- carbs were here in the priority list, because they contain only 4 calories per gram
- lowest priority was fruit and veg
But when I was tolerating very little due to feeling very very full all the time, the priority was fluids and just finding something that didn't turn my stomach (e.g. nibbling a few dry cornflakes, or the inside of a baked potato with salt). My mother made a low-FODMAP broth that kept me going. Second step was trying tiny amounts of white fish or some other protein.
Ideally, I would have been on oral nutrition supplements. These come in many different forms from thin drinks to thick drinks to pudding consistency. A general practitioner can prescribe these without your son seeing a gastro or dietician if you cannot get one of those soon. Here, they all contain dairy and I don't tolerate that so I ccouldn't use them. Nor could we add cream/butter/yoghurts which is the other thing widely recommended.
We tried smoothies but I found the consistency made me feel too full, it was hard to find low-FODMAP combinations and protein powder was not constipation-friendly.
The dietician always emphasised favouring foods I liked and dumping anything I didn't like or that caused problems. Even though fruit was low priority, I found I needed a little just for taste and enjoyment. Golden kiwis are particularly good as they just melt in your mouth, you barely need to chew.
She suggested little and often rather than big meals, but I found that was too much interaction, with carers coming in too often. Having a few things that didn't need refrigeration in the bedroom that I could pick at myself was good.
Ultimately, I found nut butters helpful. High calorie but easy to eat. Peanut butter has the best protein content. I like almond butter and walnut butter too. And tahini. You can eat them just by the teaspoon - this is easy in bed, because they don't need refrigeration, so you could have a tupperware with a couple of teaspoons lined up, loaded with a nut/seed butter. Or put them on something e.g. a spoon of almond butter on each half of a very soft date. Peanut and walnut butters are the lowest in FODMAPs, so I favoured those until my tolerance of almond butter increased a bit.
My mum made little (low-FODMAP) oatballs - nice and small so they weren't overwhelming, but full of nut butters and seeds and oats.
There was a walnut and lentil spread that I really liked, but it was a bit labour-intensive for my carers so it never took off.
Edamame beans are good on protein and fat (but they do have fibre, like lentils) and easy to prepare - you can buy them frozen and boil them for 10 mins, then have them hot or cold. They could be mashed if chewing is a problem.
A boiled egg or just the egg white can be good.
Normal portions were overwhelming when I could take very little. Tiny portions were better. A bit like the other thread where it's discouraging to have to say "No".
I still get the odd bout of quite severe digestive pain and gas even when I haven't knowingly eaten FODMAPs or too much cruciferous. Strong peppermint tea helps a bit. A heatpad on belly can help too.
Hoping so much that you and your son get good help soon so that things become more manageable.
