Help - how would I go about getting admitted to hospital? (UK)

[Ian]

I’ve been on Humira for about a month and a half. Either it hasn't kicked in yet, or it's not working. Anyway, Monday I started taking 40mg of Pred and saw great improvement Tues-Thurs (to the point that I only went to the toilet once on Thurs), but things declined again yesterday and this morning. After the blood reduced to very little with each b/m, it's gone back to the larger amounts I was getting before (including me having b/ms that are pretty much just blood).

I have a GI appointment on Friday and I can see myself getting a sigmoidoscopy and ultimately an admission to hospital afterwards (this happened last year, although I felt very ill that time and I don’t at all this time), so I can be put on hydrocortisone to try and stop the bleeding (and if it doesn't work I guess we'll be talking surgery in the near future ). However, I'm not sure if I should wait until Friday because if things get worse over the week, it's only going to reduce the chances of medication working for me.

So how would I go about it if I decided I needed to go in? If I go to A&E I'm not sure if I'll be taken very seriously - I'm totally well in myself except for the blood coming out of my bum lol - no pain, no nausea/vomiting, no fever, no weight loss. I wouldn't get seen for HOURS. And when I did, what would happen? What ward would I go on and what medication would I receive without my specialists around to consult? Would there even be any point?

The other option is to call the GI department on Monday and explain the situation - they might ask me to come in earlier rather than Friday, I don't know. I think the problem is I'm not actually all that unwell - the bleeding isn't life-threatening. It's like... inconvenient at best. I'm not even anaemic because I'm taking iron! So technically, unless things get worse, I can wait. But what if that week makes all the difference in the long run, in terms of whether or not I have to have surgery etc...
I may just be being dramatic here, or jumping the gun, but I’ve been caught out in the past with the wait-and-see approach so I’d like to be prepared. Any advice/knowledge people in the UK could offer would be greatly appreciated .

p.s. if anyone can recommend a good pay-as-you-go internet dongle for my laptop in case I get admitted, that would be awesome too haha. Last time was SO boring…

 

[beth]

Well, if it's not an emergency you should either contact your GI consultant if you have an out of hours phone number. Or contact your GP out of hours service who can then contact the consultant if needed/etc.

As for internet dongle, try giffgaf

 

[Astra]

Hiya Ian

I would wait, only cos they DONT take you seriously in A&E, with the best will in the world, these people aren't specialists in IBD, they're there for Accidents and Emergencies, you say you're quite well, so why sit there for up to 6 hours?
If, on the other hand, you start vomiting, fever etc, this would be a high alert call to A&E.

I have a dongle from 3, you top it up at the Co-op or anywhere that has a PayPoint such as Spar or most newsagents, and £15 lasts for ages!

Good luck with appt.
xxx

 

[Ian]

Thanks both of you,

Well I'm sure I can go the weekend at the very least, maybe drop my GI a line on the Monday to explain what's happening and see if they want to see me any earlier. Provided I don't start to feel unwell, I won't bother with A&E.

If I do go into hospital though, I really don't want to get admitted on a Friday evening like last time... there were no specialists around until the Monday (obviously) so my course of treatment was decided by a newly qualified non-specialist Doctor who probably wasn't much older than me. Anyway, she prescribed one shot of hydrocortisone per day instead of FOUR. By Sunday I'd gotten worse and it doubled the amount of time I ended up staying in hospital for. Would it be better to come back and be admitted on the Monday morning? Do I even have a say in the matter? I have no idea how any of this works, I've only had one experience as an in-patient in my life.

And thanks for the dongle suggestions, might try and buy one tomorrow. If I get lucky and don't have to stay in hospital, I can use it on the train back to Bournemouth instead

 

[Astra]

Hiya Ian

yeah I think you're right, the weekends here are chaos! Friday and Saturdays are usually full of alcohol related incidents.
Wait til Monday if you're feeling poorly, unless it really is an emergency tho
xxx

 

[Mark63]

Hi Ian,

Based on past experience I would try and hold out to Monday. If you do pass the A&E hurdle, you would have to be very lucky to find any of the senior people from your team on-call at the weekend.

Speaking to the consultant's PA is usually a good place to start, but if they don't offer any help ask to speak to the on-call Reg. Everywhere operates in a slightly different way, so it's just as well to ask the team what you should do in case you hit a serious problem. I'm lucky in one respect, in that I now see the Surgeons and the Medics at the same Hospital. The Medics have two specialist IBD Nurses who are great and call pull the Surgeons chain if necessary.

If it gets worse over the weekend, don't be a hero, go and get help!

Mark

 

[Grumbletum]

I wonder if it's worth calling NHS 24, or whatever that number is you call in the UK without actually dialling 999? Sorry, Ian, I'm pretty new here and to these type of problems, but it just sounds to me that you are pretty worried if you actually want to get in to hospital.
Not sure how it works elsewhere, as I'm on a remote Scottish island and we only have a very small hospital - folks get airlifted if it's really serious. But from what I can gather, if the paramedics do come out, they will then assess your situation and consult your GP to see if a hospital admission is recommended.
Just a suggestion. I know it's lousy having to hang on for an appointment knowing that things might be deteriorating while your waiting :-( Whatever you do, I hope your are feeling a lot better soon. Take care.

 

[rygon]

If its only blood then i'd wait and ring your GI monday. If the pain gets too bad, or you feel dizzy, sick, weak etc then go to A&E.

 

[Rebecca85]

Grumbletum- you mean NHS direct? To be honest I don't recommend calling them for Crohn's related stuff. They're lovely people, but they have a script to follow and anything out of the ordinary just throws them! I phoned up once with a throat infection, which I was taking OTC cocodamol (tylenol 1) for, and was told 'well just take some paracetamol'. She didn't even know that cocodamol has paracetamol in! Luckily I always read the packet, else I could have damaged my liver.

 

[Grumbletum]

Yes, that's the one I meant Rebecca and I kind of suspected they might be of limited use :redface: Just wondered if there was a remote possibility that it might be better than a wasted trip to A & E.
I was at a friend's house recently when her husband took a funny turn and she phoned them. I was a bit shocked cos she thought he might have had a heart attack and they spent ages on the phone asking all sorts of questions before they would actually come out.

 

[Welsh-bird]

Hi Ian. Hope you're feeling a bit better today. I'd also advise to stay away from A&E unless you really are dying! I spent 9 hrs there in Dec and was then admitted to an assessment ward and spent 4 nights on a trolley. Had I phoned my gastro then would have bypassed it all and got a bed straight away on the ward!
Hope you can wait until you speak with your team on Monday, but if it does get too much you do need to contact your out of hours gp for advice. Hang on in there.

 

[Ian]

Thanks everyone!

Took your advice and steered well clear of A&E. I felt fine all day but had a rather unpleasant bathroom experience just before bed, because I produced a rather alarming amount of blood... I really don't understand how I can feel well in general when this is happening?! So weird.

Anyway, didn't sleep well what with all the potential scary scenarios/outcomes going round in my head (I am seriously my own worst enemy!), but the blood has lessened today so I've calmed down and am happy to wait until tomorrow to start making calls. I won't get too excited about the blood-loss receding because this has happened before; it tends to come back with a vengeance the next day or soon after

I assume they'll want to do a sigmoidoscopy which will be interesting. The only inflammation I can 'feel' is near the rectum (I can feel pressure there and it hurts a little bit when I go to the toilet). I'd assume with the amount of blood I'm seeing sometimes that there will be more inflammation than this, but I have no abdominal pain and feel so normal... I think my body is tricking itself into feeling more well than it is! I really hope a course of Hydrocortisone can sort me out but I'm not holding my breath; it didn't really work last time. Infliximab worked, but I'm on Humira at the moment. Would they even try whipping me off one biologic and putting me straight on another? My instincts tell me this seemingly minor flare is going to be the one that has serious consequences. Not really sure why, it's just a feeling...

 

[robbo87]

Both times i got admitted into hospital i started in a and e, but both times i was very sick and full of a fever etc and the second time they literally whizzed me straight into the resus area which was a bit scary.

Since then though if ive started to have problems ive contacted my ibd nurse and usually get things sorted out before i get to the point where i need to go to hospital.