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.)

Try ice pops? Always worked when the kids couldn't keep anything else down.

Steroids are VERY hard on your stomach. I have to take them for an autoimmune condition and I take them once a day in the morning, but that’s because I also have to take a dose of 40mg esomeprazole (shite, spelling?) with them or I pretty much have vomiting if I’m unlucky or just stabbing pains if I am lucky, for the rest of the day; steroids will absolutely destroy your stomach.

I’m also surprised at this point that they wouldn’t give you prescription anti-emetics. I admit I don’t know much about Crohn’s. But I do know the two most popular prescription anti-emetics work opposite ways, which maybe you need to consider? Ondansetron will stop you vomiting when you have an empty stomach (and a full one), but it doesn’t “force” anything along. Whereas metoclopramide you talk if you vomit after eating; often you take it 20 minutes before eating (or right after if you get nauseous), and it “forces” your stomach to empty faster. I don’t know how that would work with Crohn’s bowel issues.

But it’s criminal that they won’t just give you anti-emetics unless I’m missing something.

I’m a nurse and worked in the gastro speciality for 7 years and dealt a lot with IBD patients. I’m really think you need properly reviewing as it sounds like you need IV steroids to get your flare up under control. The heart condition you mention, have they diagnosed what it is? I would wander if you have an electrolyte imbalance due to vomiting/diarrhoea, of course you’ll need bloods to confirm this!

I’m sorry your IBD nurses haven’t been helpful, that would’ve been my first suggestion, can you contact your consultant (phone/email their secretary and explain what’s been going on) But really a&e is your only option as you can’t continue like this!

If for any reason a&e send you away, when you have your infusion ask to speak to one of your IBD team I would be very surprised if they still won’t see you.

I really hope you get sorted and feel well again.

The feeling of passing wind but nothing coming is probably due to the flare. I have colitis and take Pentasa suppositories - they're really good.

OP I just wanted to say I hope things get better soon. Having had a chronic condition your experiences don't surprise me at all. I think it's one of those things where some people get lucky and get good care managing a chronic issue but lots are in the same boat as you and get treated like a nuisance.

If you can bear to get PALS on the case then do. I do think sometimes you get worse treatment for complaining and it isn't easy but at the end of the day it would be clear to anyone reading this that you are unwell and need more input. They should respond to complaints by giving you better care. If they're messing about with that, they're in the wrong, it's as simple as that. You deserve to be supported to be as well as possible. I had to get urgent medical attention the other day and it did sound like things were very stretched, they were doing everything they could to persuade me to stay away from the hospital (which I did and I was ok, thankfully) so Covid does make me want to cut the NHS some slack but I've no doubt your bad experiences stretch beyond this pandemic, realistically. And I'm sure you're a very lovely and perfectly polite patient, this really isn't your fault.

For now get a tape measurement and write down your waist is so if you continue to lose weight you have some objective numbers to give them. I hope the food continues to stay down. Some virtual for you

This is horrific. I'm sorry I don't know what to advise but just want add my voice to the suggestions of a bowel blockage. My mum had weeks of of not being able to eat. Could manage only tinier and tinier amounts of soup every 2 or 3 days. Eventually she started vomiting poo and was admitted as an emergency and a scan showed a bowel blockage which was operated on the following day. It was colon cancer.

2 years previously she had had her gallbladder taken out with keyhole surgery and although she recovered well, it didn't resolve her stomach problems. She had previously had pancreatitis and had awful reflux. She was in her mid 60s which is apparently the most common time to first present with bowel cancer but her gp had told her a couple of weeks into the vomiting that it was definitely ' nothing sinister'. Although she had referred her for a scan.

I think you should push for a scan to rule out a blockage.

I'm so sorry you're going through this. I hope things settle down again very quickly.

Thank you all for more useful bits and bobs here, I am trying to collate things so that I can try and get a conversation started as it were.

Unfortunately there just is no one to advocate or take with me even if I could get them past security.

I did get soup in earlier and think a fair bit got digested but unfortunately I've woken up with gunk on my lungs and throwing up so maybe more of a curve than a corner.

I have ulcerative colitis and am over 65. I am very concerned with how sick you sound OP. I am glad you have been able to keep a few things down. A flare sometimes makes me want to stop eating entirely but you are right you can't get better without nutrition.

Could you be heading for an obstruction? I know you have tried but you need to insist on help. If they haven't even taken bloods they are completely out of line in managing the flare.

Steroids are awful on the stomach. You could try splitting up the dose during the day. Also take with food or milk, even just a little.

Try the BRAT approach. Bananas, rice, applesauce, toast. Eat very low fibre. Try smoothies and milkshakes.

I find small bits of food often is better than forcing down a lot.

Please try and get someone n your healthcare system to wake up. Who prescribed the infusion? Surely they can help.

As far as I know they say steroids in the morning because they can and usually do negatively impact sleep because of the side effects of jitteriness etc. I have never heard any other reason and I have taken enough steroids in my life to kill a herd of elephants.

Please try and find someone to listen OP. Your situation is terrible. You really need some intervention and your age, weight, or mobility challenges are not reasons to neglect you.

If they are considered so heaven help us and it is time to shine a light.

Things have gone rather downhill here and of course 111 have said back to A&E, but I am at least this time going armed with a lot from here, and feeling a bit less alone with it all, so fingers crossed.

Having said that I'll probably still be here in two hours time.

Good luck @Elleherd

Let us know how you get on

Good luck OP. I really hope you get the help you need this time.

Unfortunately I ended up with vomit in my lungs last night, but the better news is I'm now in hospital, and am hopefully going to be seeing the IBD team. Lots of drips and useful stuff going in and have been scanned and x-rayed. Thank you all for having rallied with info and 'arming' me!

Elleherd. Glad you are being looked after.

I’m glad you’re finally getting treatment you need

Good luck OP.
Have you been in contact with the crohns and colitis charity?

Glad you're being looked after OP. Keep us informed.

My sister has chrons and I hate watching the suffering she goes through

Sorry to hear you aspirated, this could have all been avoided if they had admitted you

Going forward if you have problems again please contact PALS they can help far more than people realise

Now take care and get better soon

I’m so glad you’re finally getting the medical care you need. I agree with going to PALS and also ensuring that you have an action plan for once you’re better, to ensure that you can get the medical care you need quickly (if there’s a next time). Hope you feel better soon.

I am so happy you are getting help.

IBD is so debilitating when it flares, but many health professionals just don't know enough about it. There is still, sadly, a bit of stigma from the ancient views about it being due to our personality or some other lame and completely wrong ideas.

The other thing is that there is no quick fix and that is hard for doctors.

I hope you are feeling better. Don't let them discharge you until you are sure you can cope at home yourself.

I am not in the UK but Crohns and Colitis UK looks like a good organization. You might want to contact them to see about support.

Take care OP. Please keep us updated.

Just want to add my voice to the chorus of relief that you're in hospital.

Very best wishes from another randomer on MN for a speedy recovery.

I posted a few days ago, and thought you sounded in a bad way then. Sorry it took you aspirating to get some attention but glad you’re in the system now.
When you feel better (if you can) you need to escalate why you were left so long- it really isn’t ok they let you get to this stage (unmumsnetty gentle hugs from a fellow crohnie)

Thank goodness you've been admitted and are finally being treated, Elleherd, although goodness knows it should never have got to this point. I so hope you get properly assessed and start to feel much better soon

You need an antiemetic, your GP should be able to come out and give you an injection.

You can also get ones that are pills you put between your gum and cheeks and allow to dissolve.

I had gastro enteritis so things were coming out both ends but I have to take a lot of medication so they sorted me out.