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.)

mrsbyers thank you. They are quite insistent that they should be taken in the morning, so I'll follow up if there's really a good reason why.

Got Complan but didn't keep it down. Did however get a small bowl of soup in and it stayed (tmi: and went though) but woke in the middle of the night throwing up mainly water and bile.

Definitely dehydrated and my stomach muscles are sore and definitely strained and that's probably not helping.

Given the ideas on here I'm going to try very small amounts of watered down Lucozade all day and see where things go.

Dp doesnt have crohns but has recurrent gastro issues where he starts being sick and cant stop. After about a week, maybe less of this, and he is usually pretty dehydrated. It takes a bit of pushing but when he presents to a and e, he gets admitted due to the dehydration, but also as he has extreme stomach pain that needs medicated in order to stop the vomiting, in order to stop the dehydrating.

Do you have any stomach pain or is it just the nausea and vomiting? I think you need to be a bit more forceful at a and e, which is difficult i know. Is there anyone who could go with you and advocate for you?

I once had the worse gastric bug in my life. I vomited so much I ended up in hospital dehydrated. Eventually it became clear my body had got stuck in a cycle, my stomach had become sensitive so anything that went in came back out including water. I was given an anti vomiting medicine and it was like magic, within 24 hours I was able to eat again.

I'm sorry that I can't remember the name but it began with an O.

Get your dc to buy you some Zero tablets from Boots, Halfords, Holland and Barrett or amazon. They are electrolytes, you drop them in water and they fizz.

Can someone go to a pharmacy for you and get Buccastem? It's an anti emetic, over the counter and dissolves in your mouth, so seeps into your system. Its helpful.
My DS has Crohns. Are you being admitted for your infusion? Demand help from whatever GI team member might be there. Vomiting would make me worry about a bowel stricture which needs surgery. IV fluids is the minimum of what you should be getting I'd say.

And in the mean time keep to v v plain white food, toast, rice. Avoid dairy. Tiny sips of rehydration solution. Some of it will still get in despite the vomiting.

i think you need to put a complaint into PALS about the nurses and also speak to your GP using a complaints procedure if needs be.

Yes to pain, feels like a need to pass wind/diarrhea, and when I can't I'm usually vomiting within the half hour.
No one to kick up or advocate, and I'm bad at it as hate fuss and drama and am easily shut down at any suggestion of attention seeking or being a burden or a nuisance.

I did try showing them that when I pinch my sagging wrinkled skin it stays as a ridge, but I think they are seeing as age not dehydration.

I pushed for and extra phone appointment to try to get something of GP to stop vomiting the steroids back up, but they translated it into thinking I was asking should I be stopping the steroids and took over the call with that.Maybe my fault, I don't know.

Really grateful to hear there are anti emetics you can buy! I didn't know, and the electrolyte tablets sound good.

Not being admitted for infusion.

I don't know how normal my experiences of hospital are, but there isn't really anyone to get involved when you go for treatments. It's very much a factory line up of watch the screen for name and number, move forward at correct slot, nurses applying treatment, ensuring things done correctly, and moving patients on so the next person can be done on schedule.
Attempts at any conversation are discouraged because Covid and trying to ask things are rebuffed. It's not their fault, you can see how strained everything is.

A phlebotomist shouted at me from behind a curtain for not getting a few yards fast enough because they had to 'get draws up to X per hour'. (tbf when she shot out for a 2nd go, she was mortified when she realized I was weak white and self propelling a wheelchair.)
Same visit I was close to the front of the hospital pharmacy queue when I had to beg for a sick bowl. Not their issue, it was left to the queue to provide a carrier bag, and my prescription was placed in my lap while I threw up over a toddlers half eaten lunch (thank you kind dad!) and everyone moved round me until I could wheel myself out of the way and bin the bag.

Am very much trying to do the plain white food.

Sadly in my experience of the NHS this all sounds horribly familiar. They are not good with chronic conditions and am sure Covid has made it worse. However if it becomes critical they'll be great, but that is not helpful for you at all.
Keep calling the nursing team, can a friend help articulate your concerns? It's often easier to ask for help for someone else. I can be v demanding about DSs treatment regime, but a bit crap at dealing with my own conditions.
Abdo pain and vomiting are bad indicators for Crohns and I'd want a scan to rule out any blockage ASAP.

I'm not in the UK anymore and DSs infusion clinic is supervised by a junior GI doctor who'll call the lead consultants for advice on the ward. Can't imagine not seeing a GI team member at each one.

Is there any supportive pharmacist you know? We have one woman at our local pharmacy who's been more helpful than doctors on many occasion. Just speaking to someone who takes you seriously or can reassure/advise would be helpful (sorry i know this is obvious),, otherwise maybe a Crohns charity phone line ? Sorry OP this does sound so difficult but i believe you will get better and Im praying for you. Xx

Hi OP. How are you doing? Hope you are feeling better.

Warning TMI!
turkeyboots it's kind of you to ask. There's good news but please don't read if it's TMI!
I think you are onto something about a 'blockage.'
In the attempts to get things into me and communication issues, DC proffered half bowl of soup with electrolytes dissolved into it.
It tasted very odd, which I thought was the electrolytes but turned out they'd put three tablespoons of chili sauce in it!
Literally went straight through in minutes in a horrible explosive continuous mess, but with it went the stomach ache, gripeing, and a strange wandering pain in my side/back!
Didn't dare try anything but water for rest of the day, but it stayed down. Got a tangerine into me last night.
Woke in the night with sense of wind and nausea, passed wind and got back to sleep without being sick and had the longest continuous sleep for ages!
Successfully had coffee this morning and cornflakes this lunchtime. It feels like a corners been turned.
I'm physically very weak but feeling like it's possible to get stronger rather than everything's ebbing away if that makes sense. I have my fingers crossed and am trying to be controlled and sensible. (the temptation to stuff food into myself is huge!)

When you said you'd want a scan, can I ask what type of scan would you be asking for?

That's good, glad you are feeling better. Have you had any scopes or MRIs recently? Crohns can lead to scarring of the bowel which makes it hard to pass anything through. Keep nagging the IBD nurses to get a review and make sure nothing is lurking.

Thank you. I know I have 'cobblestoning' but that's about it. I had a CT scan in March, but can't remember what for.

Have had a bowl of (non chilli!) soup and a slice of bread and very hopeful that all is good.

God OP you sound really poorly.
I've got Crohn's and I'm lucky that my IBD nurses are great so I'm sorry to hear yours are fobbing you off. Have you got an email address you can try? I'd seriously consider contacting PALS and see if they can get things moving. Also have you got a named consultant? Call their secretary (should be able to find their number on trust website) and explain you can't get hold of the IBD nurses, that you've been taken to A&E by paramedics and fobbed off and ask if there's a cancellation so you can be seen sooner.
I'd definitely see if you can get some meal replacements. Hopefully the infusion will help too. Is that going to be your first infusion?

WombatStewForTea I have been tbh and I'm still horribly white and wobbly. (not my normal)
I was on them until Spring, then everything just stopped, (I suspect wrongly) and within a couple of months I started going downhill fast.

Sorry to hear you are so poorly.

It's definitely worth calling the IBD nurse (keep going until you get through!) - my Dad had a Colitus flare earlier in the year and they were waiting for him in A&E.

It seems like they are hoping the steriods will kick in and control the flare but you sound very poorly - IV fluids sound like they are needed asap. Please don't sit around in pain unable to eat/drink, this will only make you feel worse and recovery longer. I really think this needs to be looked into. This being untreated could lead to more serious issues. You need to be firm with the medical staff even if it makes you uncomfortable, would a neighbour be able to drop you to A&E, sometimes just having anyone there can help you fight your corner.

NotMeekNotObedient Apt name!

Yes it's very much this will fix this, just a matter of time, and a different level of concern on how much deterioration in the meantime might be harmless or harmful.

There is very visibly less of me (at least four inches from my waist according to a now buttoning old skirt) but the fact I still weigh the same seems to be being taken as 'can't really be in the trouble I have been.'

Outside of the no accompanying relatives/friends Covid rules, and security stopping most at the front entrance, I'm unfortunately already massively stretching favors just getting myself taken to the hospital entrance and picked up again.

The good news though is all stayed down last night, and all though I woke early hours nauseous, (and wind) nothing came of it and coffee has stayed this morning, so very hopeful I've turned a corner.

I am going to do my best to try and use the appointment on Friday to try and get better guidance on what systems there are and why I don't seem to be able to access help through them.
According to confirmation letter I'm an admitted patient during the infusion process, and I'm hoping that might just help me get somewhere.

I don't know anything more than the basics about Crohn's but I'm feeling very worried about you, OP. It's shocking that nobody seems even vaguely interested in how unwell you are, and from what you say you're battling on virtually alone.

You mention your age several times - how old are you? There should be absolutely no excuse for medical personnel to pass off their lack of treatment with 'oh, it's your age'. They need to investigate properly. And in the gentlest way possible, can I urge you to try and be as firm as you can? I know it's difficult when it's not your nature (I'm the same) but sadly I've realised that the people who are quiet and polite and don't draw attention to themselves usually end up being overlooked.

I'm really glad to hear that you're starting to feel a bit better.

Halsall i have reasons for not wanting to give exact age, but the key factor for them is very much that I'm "post menopause". (and I think combined with wheelchair disabled.) They do always react with suprise that I work, (I have repeatedly said being just left too ill to be unable to work is not ok) and the fact that I do work seems to very slightly elevate their responses to me.

I do feel I am very much being treated as someone coming towards a reasonable end of life date IE mid 80's, unreasonably expecting a cure for the natural processes, but I'm more than twenty years younger than that and while I know I look a bit haggard through being so unwell, and wheelchairs help nothing in other's perceptions, but even on a bad day...

Yes I've been battling things pretty much alone despite asking what I though were the appropriate people to not be left to please.
I would have been more sensible to have posted here earlier but it took getting to the point of it being deflected back as my problem to deal with that the 'cure' wasn't staying inside me.

I also think the weight thing is skewing perceptions. I'm normally seen as 'big boned,' bit of an stolid solid Ox type. The kind of woman you ask to get on the other end of something needing lifting.
Others have confirmed I now look 'shrunken' 'small', and for the first time in my life the word 'delicate' got used.

I've definitely dropped two to three waist and bra sizes, and I'm taking up less space in my chair, but that is irrelevant medically, as I still weigh exactly the same (just over 10 stonkey stone!)

You really need someone who can advocate for you if you don't feel able to do so yourself. If you feel you're wasting A&Es time by being there then that's what they're going to think too. You know you're really poorly. You need to be firm with them that X, Y and Z is happening and it's not right and that they need to help you. Do you have a friend who can come to A&E with you. I know you're not allowed visitors with you but if you have someone there in a 'carer' capacity which it sounds like you need at the moment then surely they'd let them come with you and they can help advocate.

I don't want to be a downer but I don't think you'll get much help from the infusion appointment on Friday. From what I understand the nurses won't know your case and don't do much other than administer the infusion. Please keep contacting your IBD nurses or PALs

It's just shocking, Elleherd, I'm lost for words tbh. I also sympathise because I speak as someone who was pretty stunned at having a GP ask me (in my 50s) whether I 'still worked'.

I think when you have your infusion this week (iirc) you really need to find a way to explain how ill you've been. Would writing a bullet-pointed summary be useful, do you think - then you'd have the facts at hand to show very quickly and efficiently?

10 stone isn't exactly huge, btw - I weigh more than that!

Along with othets I'm shocked. I have also been victim to the assumption I am elderly. I'm a fit active 60 year old but was very ill last year. When I wept in frustration at the pain and my inability to move a nurse said I should consider chair based exercise and perhaps I needed counselling. No I needed pain relief.
I no nothing about your condition but I do take steroids. The reason you are told to take them in the morning is because they can keep you awake. Depends on the dose. I also have a steroid letter which says in the case of vomiting I may need an injection of steroids. So perhaps you have not had the benefit of them if you couldn't keep them down? I also take them with milk as they can irritate the stomach.
I had hyperemesis in pregnancy resulting in hospitalisation. Plain boiled rice eaten lying down was all I could keep down at one point. Hopefully sounds like you've turned a corner.

Hi @Elleherd - heart thing you have been experiencing is undoubtedly palpitations or arrhythmia from having your regular electrolytes screwed up as a result of dehydration. Throwing coffee in while you’re dehydrated would exacerbate that. The cobblestoning is a result of scarring and paralysis of the bowel and unfortunately being in a wheelchair compounds that also, as our bodies are designed to move from a vertical point, and exercise helps with the bowel’s motility. There are medications that stimulate bowel contractions and you should discuss whether they are safe for you to take in these circumstances with your doctor - and describe this event in detail. It would certainly help “move things along” and help avoid getting back to this stage.