I am but desperate, how do I get better if I can’t keep anything down?

[Elleherd]

Underlying issue is month long Chron’s flare that hit joints as well. (also wheelchair disabled and managed to develop a heart speed and rhythm problem on top of things)

Am now locked into a cycle of tricking my body into accepting steroids with water in the morning for long enough (1hr) they’re probably getting absorbed, but nearly all attempts at very light gentle eating and most drinking, result in vomiting, either straight back up or within three hours.
In the last seven days I’ve been pushing myself in attempting to drink especially water and eat small amounts twice daily. Have successfully kept down a piece of scrambled eggs on toast, a half bowl of soup, a slice of bread and three milky coffees in a week.

It might sound ok, but it’s two out of fourteen, and I ’m beyond debilitated, bedridden, permanently grey and exhausted, (suspect the heart issue is being created by the state of me) and the exhaustion and pain involved in throwing everything else back up isn’t helping along with the lack of nutrition.

I’m doing all I can not to swallow air, eat slowly, small amounts etc but can’t find any rhyme or reason to the success’s vs the failures.

TMI maybe: but just before vomiting, always feels like bowels are about to go, but turns to vomiting instead.

Medics don’t seem to think there’s any big deal and treat me as if I’m in my 80’s and it's all to be expected. IBD nurses aren’t responding and GP’s happy for me to continue like this for another three weeks to next appointment. I understand I’m low priority but feel I’m existing waiting to see if things just randomly get better or worse while my life falls apart.

Any experience, knowledge, ideas for getting/keeping food/nutrition into someone in this position? (lifelong vegetarian If it matters.)

I very rarely say this but I would go to A&E on the basis that you’re holding nothing down. You must be very dehydrated.
I have needed A&E three times in very similar circumstances with Crohns and been admitted each time.
Your Gastro needs to get on top of your meds or comsider referral to surgery - if you’re flaring your current treatment isn’t working.

Are you very dehydrated, OP? How much wee are you producing?
How underweight are you now?

How would you get to A&E given you're bed ridden?

That sounds horrendous, so far from normal and you need more help. Check yourself for clinical signs of dehydration and get medical attention based on that.

On the practical side, ice lollies or sugary drinks, such as still lucozade sport, stay down sometimes when water won't. Once you have a bit of sugar and water in you, food becomes a bit more manageable. But I don't have Crohn's. Best of luck to you, it sounds horrendous.

Have you tried maybe coconut water? It's supposed to be very hydrating

But I agree with PP you should go to AandE

You need urgently reviewing, if you can’t eat or drink then the steroids are going to cause all sorts of damage and may be causing a potentially fatal electrolyte imbalance which is leading to the cardiac issues

Please get seen in A and E now, you probably require IV steroids, balanced electrolytes IV etc and are not thinking clearly due to your condition

I say this as a steroid taker and retired nurse

DotBall
A&E are aware after 111 insisted on paramedics and I I turned up with heart problem, they didn't find it relevant. (though I can't help wondering.) I'm almost certain I would just spend a day there and be sent home as a nuisance.

I am being given an infusion on Friday, but to the best of my knowledge it's unlikely to stop the vomiting short term.

lijjk not much. Weirdly I way almost the same, but am visibly smaller so I suppose it's loss of muscle vs fat. I've only ended up at a&e via 111 and paramedics insisting. It's really difficult because I'm clearly not someone they want to see there, but 111 and paramedics are covering their backs.

suck sweets, I lived on fruit pastilles for many months

Tomnooktoldmeto I have been reviewed, that's why they've put me on steroids and will start infusions. (sorry I didn't make that clearer)

The heart thing started before they put me on the steroids. Obviously I'm no Dr, but I suspect it's from being so run down and trying to keep going.
GP feels it will clear up when the flare is over, as it 'self resolved' in a&e. I chased it up after I was in the 220's the other day, result is am in a queue for 24hr EKG in two and a half weeks time.
No one I'm coming into contact with medically seems to think there's any issues here, which is why I'm resorting to asking MN about the thing I can see which is I need to eat, even if they think I'm 85 and no longer need to!

Thank you for ideas on sugary drinks and fruit pastilles, I doubt I'd be able to get hold off ice lollies.

I was (happily) surprised that sugary milky coffee stayed down on the occasions it did. If anyone knows about sugar being a way to combat vomiting please tell all.

A lot of the time I'm throwing up on an empty stomach and it's just clear bile.

MySecretHistory I hope you don't mind me asking if you were eating a lot of them?

Sorry also the coconut water.

A and E. This isn't right.

Do you have a different A and E near you? I would attend a different hospital if I had the option, but whatever you need to be seen as an emergency

It sounds dangerous - the heart / steriods / vomiting. I would be worried about the strain being put on your heart by messed up electrolytes because you aren't able to eat or drink properly.

I have Crohns, and to be honest you sound very ill right now.
I think you need to be admitted, go on a drip and possibly have intravenous steroids to get the flare under control on top of maintainance meds.

I'd ask for an im steroid pulse injection in the hospital as you can't guarantee keeping pills down and some antiemetics for trying to get back to having something.

In the meantime, I'd try keeping hydrated with sugary drinks with a pinch of salt added and glucose tablets as though I were diabetic, as having low blood sugar can also make you feel sick and plain water/milky things can also make you nauseous (well, they do me). Rehydration solutions are available on Amazon, so you'd get them delivered quickly and then just have a sip at time.

Hopefully, your infusion will have a really good effect quickly. But you still need help to keep going in the meantime until it does its work on your immune system.

I don't have chrons but I've another illness which causes gastric flares and I get given liquid steriods because other wise tablets won't stay down. Would you try asking for them and maybe some nutritional drinks or yogurts. It's absolutely crazy that they are leaving you this long being so unwell.

I have IBD but I have colitis and my flare ups are just like yours. You need the hospital and now. Youre dehydrated and putting pressure on your heart. Go to A&E and they will admit you and put you on the relevant drips you need. Ring for an ambulance tell them you can’t eat or drink and you’re in a flare. They will take you in.

Do you have a direct line to a nurse specialist? You are clearly NOT alright and I’m concerned you’re slipping through the cracks

Is anyone able to advocate on your behalf? I know when I’m on steroids my thought process is affected, as a minimum you need fluids and U&E’s checked please don’t be fobbed off and become a handwringing statistic

I appreciate well meaning people are saying I will be looked after, treated, admitted, etc, if I just go to a&e, but honestly it just isn't what happens.

All the medical people involved and a&e just aren't seeing any of this as either an emergency or as important and have made that clear.I just arrive, add to the load, spend the day there and am processed out the other end as something that took up time and resources unnecessarily.

The last time they didn't even sent on the paperwork to GP that would confirm what the paramedics measured (why I was dragged down there) before things self resolved.

I know I'm not alright, but it just isn't being seen as a problem which is why I'm trying to do whatever I can for myself. I do wonder if the combination of disability and age means I'm quietly seen as just not worth treating. I'm definitely not rude or racist or any other reason people get denied treatment here.

Tomnooktoldmeto I'm embarrassed to say that the IBD nurses never get back to me and have now denied I ever rung them. I double checked my phone and found their number (outgoing) six times in three months, which was what I already knew. I've been told that a) that hasn't happened, and b) it would be unreasonable to have expected them to. (though that is what the card with their number says you should do.

@Ellehard I'm not going to deny your experience up to this point, but nobody knows what your electrolyte levels are without a blood test. You could be in serious ill health. That aside, have you tried taking 5mls of liquid every 2 minutes? Just a trickle can be better than a few mouthfuls.

Who is caring for you since your bedridden?

Lougle thank you, they have taken bloods. No I haven't, just small sips over the day, so another one to add to the list.

Hankunamatata adult dc (asd) is here first and last thing and bringing me what I ask to manage myself as best as can. I'm normally independent and self reliant.
Someone else is coming in once a day to deal with sick buckets as it's beyond dc's abilities.

OP - I am just crawling out of covid and have had major problems with vomiting and keeping food down. I tried Complan - it’s not particularly cheap but I have used it as a meal replacement for 3 days now and have kept it down. I am feeling better and have just managed an omelette. You can get Complan in the supermarket - send someone out for some. It might help.

Thank you for the recommendation.

Crohns for 20 years , I would take the steroids just before bed. In terms of getting calories into you I found soft desserts , milkshakes and toast usually ok

Oh and you can fortisip meal replacement drinks on prescription