If you were fed through a nasal tube, when and how how did they wean you off it?
This sounds weird, but at first I didn't realise that the thing stuck to my nose was a feeding tube., because in my dreams it was something else.
When they wanted to remove it, I was given pureed meals and thickened drinks that I found so disgusting that I insisted on having ordinary food and drink against all advice. 3 hospitals later ì saw roommates being given what looked like much nicer soft foods,. I envied them. But when I first saw someone being given nasal feeds, just the sight of the purple plastic bottle tops and syringes was so triggering i had to ask for the curtains to be drawn around my bed so i couldn't see. The bleeping noises that signals the feed bottle is empty was very unpleasant for me too, and I was forever pressing my buzzer to tell the staff that there was an alarm going off.. One fellow patient who was supposed to be on thickened drinks started sneakily drinking water straight from the jug. I silently cheered them on, and did not press the bell to tell tales.(they didn't choke. If they had started choking I would have buzzed, I'm not inhuman)
And after another move the sight of a box of purple plastic food bottles in a cupboard gave me the shivers, and the speech and language therapist who brought a pot of drink thickened to my room and wanted to assess my swallowing got an earful.
Surely it must be possible to produce microwaveable soft food that actually tastes nice. Surely??? Would any famous chef take up the challenge??? Or even a not yet famous cook?
I
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Kit10
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I was fed through a nasal tube for what seems a long, long time, in ICU. Only when my tracheostomy was removed was I allowed yoghurt.Then when I was stepped down to the heart and lung ward I was still on the nasal tube. I complained a lot that I was real food, and they said they would bring me small meals.
When I could eat half of the small meals they would take out the nasal tube.
Well, it took a hard time to eat half of the small meals. My body was so battered that the energy needed to process food would make my heart pound like I was running a marathon.
Finally I was taken off the nasal feeding tube.
The meals were ok, as I needed only soft stuff, mashed potatoes, baked beans, etc, that I could swallow easily, in case it either got stuck in my throat, or went down the wrong tube into my lungs.
Hospitals aren’t very good at thinking about recovery holistically - each department does its thing - some better, some worse.
The dietitian insisted that I had a high protein diet - that carried through 15 days in ICU ( 75 days I was either unconscious or nasal fed) & 30 days in rehab wards. The kitchen would arbitrarily decide to give me what the dietitian recommended or not.
The thickeners were disgusting as was ensure drinks.
Food really needs to improve - why save you from drowning if they are going to kick you to death on the beach
I used to be called ‘difficult’ because I refused to drink the diet supplements, they tasted vile. I used to ask staff if they had tasted them, and when predictably they said no, I replied that I wasn’t having them either. The dietitian agreed with me and as I was on feeds via my PIC line, I was let off from that torture! I apparently pulled my NG tube out in ICU (definitely difficult!) but was not mentally present at that time. Has anyone else had a change of taste? I used to hate drinking just water and having been a water jug drinker in hospital, I now love it. I now hate broccoli and asparagus but loved them pre illness!
Gosh, yes! I’d never in my life drunk plain water, really disliking the taste. Post hosp discharge, there’s no fluid I like better than a glass of ice cold plain water. Strange, isn’t it.
I went into ICU just before Christmas ‘19 and had a nasal feeding tube from then. I also had a trachy. When I came round in February I was being fed 1500 calories over 24 hour period.. some of my drugs were not in liquid form and had to be crushed and given through the tube. Amongst other things I had no swallow and part of my vocal chords (I think) were damaged. Once my trachy was removed I was started on exercises with crushed ice which I wasn’t allowed to swallow. When I stepped down to to the coronary ward I was still on the same calories but I asked to be fed over night. At least that way I could be disconnected from my friend during the day which certainly made walking easier. They tried thickening stuff which was vile but I was gradually allowed to have water and then squash. There was a problem with me pulling the tube out, it was a difficult exercise to get it back in, it had to be X-rayed each time and in the end they fitted a bridle to my nose which was like a magnetic anchor. Also every day they had to take a sample of fluid in my stomach to make sure the end of the tube was in the right place.On 11/3/20 I was transferred to my local hospital. I managed to persuade my discharging hospital to let me take 2 bags of food but the receiving hospital wouldn’t let me have it because they hadn’t prescribed it!!! On the 12th I was tested with a yogurt and banana and later on baby food. The next day I was discharged and my tube pulled out. When I say pulled out only after I explained to them how to remove the bridle.
I found a couple of suppliers that provide ready made food (slop)(and I’m being polite there) I think one was called Wiltshire Farm food which did have a taste. Over the next 3 to6 months I gradually changed the consistency of the food and some did taste better than others. But these micro wave meals were convenient and reasonably presented.
Don’t forget your taste buds may be rubbish after icu.
There are still some foods I can’t eat (swallow) lettuce, brown rice (white rice ok) sponge like textures and I must have a. Drink available when eating. A pint of wine is not advisable.
The other reality is that changing from liquid food to any form of solid food buggers up your stomach and it took me an age for my poo to settle down I will leave that to your imagination
I hated the feeding tube. When I was still dazed and coming round I pulled it out and they made me put it back in, while conscious. That was a pretty horrible experience. I didn't take it back out after that.
I was desperate to get onto solid food. Apart from anything, once the catheter was out and I needed to go for a wee, I had to stop the feeding machine myself so I could get out of bed to go the the toilet. Either that or take the whole thing with me.
It took a while to convince them to take it out. I had to have yoghurt and other similar stuff, which I didn't really enjoy, plus biscuits and very dry cakes, which I could eat while being monitored. They were pretty awful.
The day I got my first meal was a good one; some overcooked pasta with dried up salmon which was wonderful. Normally I would have been critical but it was another of those big steps to recovery, like the day I got the catheter out, or the day I had a shower standing up.
For me it was the fact I could see progress that made me decide that I could just put up with it. Plus it was nice getting my mind back again compared with the nightmare that went before.
I had a feeding tube for a week or so in my first stay in ICU. Initially I was no fluids as well so I was permanently thirsty, only relieved by these small sponges on a stick that could be rubbed around my mouth.I was eventually allowed some solid food but supplemented by a flavour 'ensure' drink. I had to have this to balance my intake as had diabetes and ckd and my body was short of essential minerals like potassium.
The second stay in ICU with Covid, I had a feeding tube all the time until I was moved to the community hospital some weeks later. Once I came round in ICU after being on a ventilator, I was allowed solid food as well as having the tube still inserted. The tube only became uncomfortable once and was repositioned.
My gut was in a mess and my bowel function did not recover until I was in the carehome for my final rehab and had 3 decent meals a day.
It was a good way to lose weight. I lost about 6 stone.
I too refused the supplement drinks. I think the only way to make them drinkable would be to add a measure of gin, tonic, ice and a slice. Unfortunately, the nurses would not do that for me!
Some of the nicer food I saw roommates given included pureed fruit, and scrambled egg mixed with a bit of tomato juice. I'd have loved to have scrambled egg.
Some nurses allowed jelly or ice cream, others insisted that both become liquids in your mouth so cannot be given to someone on thickened drinks.
Question ... would it be possible to add thickener to either when making them? Mind you, wallpaper-paste-flavoured ice cream might be vile anyway.
Some of the prepackaged meals the only way I'd eat them was if I'd been in a plane crash and the only alternative ... well I believe there's a film about it..... and even then, I'd think twice.
My voice was definitely damaged, presumably by ventilator tubes. Some sessions with a speech and language therapist helped, when I finally got her to stop trying to assess my swallow.
I remember the vanilla flavoured drink being OK. I just necked it back. I did at one point convince someone to bring me a cup of tea - "yeah I'm allowed tea...." - I wasn't, and was told off, but it was nice to have one.
Losing 6 stone is impressive. I think I'd be skin and bones if I lost that much.
I have lost weight that I can’t put back on. Friends are so complimentary and ask which diet I was on. I say ‘ oh it’s the sepsis diet, but I don’t recommend it!’
Depending how long ago you had Sepsis, I found it took a few months to start putting weight back on. When in hospital it was a struggle to find anything to eat. Once in the final 4 weeks in a carehome as part of my rehab the food was great and I ate 3 meals a day. Once home I just ate as I would have done before I was ill, basically one meal a day. I have put on most of the weight lost.
When I first started eating I had to really concentrate on chewing and swallowing every mouthful, and the inside of my mouth was hypersensitive and easily tickled, so I often coughed and I had to fight off staff worrying that I was choking and trying to put me back on thickeners.
I am glad to say that both have gradually improved without any intervention, and I can eat and drink without coughing, and chew and swallow without thinking about it.
For all this time I have seldom felt hungry. However in the last week or so I have felt hungry a few times.
I am the sort of person who reads the ingredients of food packaging. I managed to get a list of the ingredients of the nasal tube feed. It's a long list, but not as unwholesome as I had feared. I guess if you don't have to care what food looks or tastes like you can cut out all the artificial colours and flavours.
It looks like I was quite lucky, I had a feeding tube when woken and was fed once through it, the morning after I ate some toast then a choice of what meals were on at lunch. I'd spent 10 days intubated so I don't know if that makes a differance of how they restart your food. My mouth was sore for about 2 weeks after and my gums would feel split.
I hated the feel of the temperature change in my head as the food went down the tube. I was so aware of how after having died clinically that I was really lucky to have made it I was totally compliant with everything. But as the time came for the tube to come out a dietician agreed it could come out if I would drink large quantities of milk. I am not that keen on milk but it was better than the feeding tube. The only thing that I had any dispute over was the nutritional value of the food that Inwas getting at the start of convaleseence. At home I have a seriously good diet thanks to my wife and the food that I was getting in hospital at this stage would not have sustained me at home never mind when I needed to rebuild a broken frame. My surgeon happened to be stood behind the dietician while I was having this discussion and I could see him egging me on. Not sure whether it was because he agreed with me or because he was pleased to see me having a bit of fight in me after all I had been through.
I remember the milk. At the time it seemed a relief to get something fresh and cold.....but too much did not have a good result...Unfortunately the food in ICU was not good, and I could only manage the sausage and mash. It was not until my last 4 weeks rehabilitation in a care home did I begin to eat properly.....3 meals a day, and all very good. It finally settled my stomach down and I put on some weight I had lost.
i survived on jelly and ice cream no solids 110 days then pureed then soft diet only semi solid after 125 days no probs loads of ensures protein drinks made them into milkshakes still on after 13 months HAPPY TO BE ALIVE STILL SWALLOWING ISSUES AND BREATHING BUT IMPROVING SLOWLY
I have no memory whatsoever of food in ICU but I remember vividly that which followed my “step down” to the cardiac ward. I was still rather confused but remember so well the horribly overwhelming smell of fish & vinegar (C-19 distortion of smell). I was being fed via naso-gastric tube and was horribly nauseous at the sight & imagined smell of tinned liquidised Spanish pilchards hanging on that drip stand. God, how I hated even the writing on that tin. SPANISH PILCHARDS. Ugh! I also remember vividly the hit of cold water entering my stomach as it was flushed through the tubing before and after feeds/medication. I would make the nurses shudder I’m sure when I insisted on them double & triple checking the tubes position as I thought it might have moved into my lung whilst coughing (once a nurse, always a nurse)! There was no possibility of a dietician assessing my swallow for several days, as they were run off their feet and in short supply. I became so desperate to get that NG tube removed so I could begin to eat normal food again and I fortunately had a sensible, very experienced RN who agreed that the NG feeding was interfering with my recovery. So, over 24 hrs she introduced delicious ice cream, yoghurt, custard and gorgeous banana flavoured Ensure meal supplements thinned down with milk. Oh, it really was heaven on earth. On day 2 of being on that cardiac ward, said nurse had assessed me as being able to safely swallow and had removed ng tube. There was no stopping me after this. Things I’d not previously liked eg porridge, baked beans, rice pudding etc suddenly became an appetising means to build up strength in order to bring closer a discharge date. As for the Ensure, I continued enjoying it for weeks to come, always mixed with a portion of vanilla ice cream. In fact I was most disappointed when it was no longer deemed necessary. Couldn’t understand for the life of me why patients had almost always rejected it as being unpalatable when I’d been nursing them. So, other than the nauseating ng feeds, my experience of hospital food was a rather positive one.
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