I’m ready to give up on life because nobody is taking this seriously

[tiredandgrumpyy]

I am sorry to post again. No pictures this time, I promise.

Most of those reading will know the story, heavy rectal bleeding, prolapse and abdominal pain.

Admitted last Tuesday, discharged last Friday morning. Admitted again Saturday night.

The Sunday morning I saw a surgeon on the ward and they were really dismissive of me and I ended up sobbing. They discharged me after telling me they would fast track me to the colorectal surgeons because “no one will see you now, it’s a Sunday, do you expect a colorectal surgeon to see you now? what do you want me to do, call them up and tell them they need to get to work?” when I said I don’t feel well enough to go home he said “stay in then, I don’t know what you want me to do about it” rolling his eyes at his team, and walked off.

I stayed at home yesterday despite bleeding all day. Last night at around 2am, I woke up to go to the toilet again as it’s been non stop diarrhoea, and became so dizzy I collapsed and fell face first on the hard corner of the sofa, my nose and head is bruised.

Today has been hell. I have been on the toilet non stop, this morning it was just blood which wouldn’t stop even after going to the toilet. I don’t even know how many times I’ve been to the toilet with diarrhoea too.

I called the number for the colorectal department today and the secretary has said I’ve been referred for an appointment but it’s marked as ‘non urgent’ so it’ll be at least a 6-12 month wait to be seen. She hung up the phone when I got upset.

At 6:30pm I went to the toilet and I have bled for one hour straight. It’s dark, thick blood. I’d estimate around a mug - 1.5 of just blood, which continued in my underwear for 15 minutes after.

Today in total I would estimate about 2-2.5 mugs of blood.

I became so dizzy and couldn’t walk properly without being all over the place.

My partner has taken me to A&E, I was seen straight away and I’m waiting for bloods and I’m on a trolley. My blood pressure was high, not low, my heart rate was 125 but oxygen levels fine. Tummy is cramping and head really hurting.

Im so scared to be here. I have no one here with me as usual. My mum is very dismissive so wouldn’t come with me and my partner is at home with our DS.

I feel like a nuisance and I already want to cry because they must be sick of me by now. I don’t want to be seen as that ‘hypochondriac’ but it’s my only option because my GP always advises it’s A&E I need and not them.

Over the last two months I have lost £6,000 in monthly recurring revenue and I spend my life on the sofa or on the toilet. I am becoming so heavily depressed because I need help.

I don’t have friends nearby because I’ve recently moved. I have no one to be here to advocate for me and I become so nervous now that I struggle to talk without blubbering.

Please, I need help tonight, if anyone has any wide words on how I can best advocate myself, how I get them to listen, what I can say to make them listen, I would so appreciate it.

I am no longer coping and am at a point where I no longer want to be here.

I’m so sorry to post again. At this point it’s one of my only outlets and I don’t know where else to turn.

Apologies OP just remind me do you have UC?

Yes she does.

Fingers crossed they see you tonight

That much blood loss would be showing on your sats, the higher BP shows you’re compensating. Next time you go to the loo ask a nurse to come see!

My DMIL had a prolapsed bowel - but she was in her late 70s. Ignorant as I was, I had never realised such a condition existed - or at least the reality of it.

No advice, just posting to say I am thinking of you.

@cezannesapple yes I definitely have been in a hospital at the weekend and know services are very limited but I also know that there is critical emergency cover. For someone to be bleeding the amount OP is something is very wrong and even if it's a junior doctor or whoever that comes to see her someone from the relevant specialty should be seeing her. As an aside in the longer term (impossible in short term given existing staff shortages that would obviously worsen) the NHS really needs to staff up at weekends like it does during the week, it's incredibly inefficient (not to mention dangerous) to leave everything stacking up over the weekend.

Yes UC cases can be admitted under medics rather than surgeons unless there is a surgical problem ie needing surgery if that makes sense. Surgeons will often dismiss a case if not needing surgery. You need a gastro ward.

Ds was admitted with what turned out to be crohns in the early hours of a Sunday last year. They were still able to do a whole range of blood tests, xray, ultrasound and put him on a drip to rehydrate before things really got going on a Monday. He saw the on call gastro team and infectious diseases team in that time too.

Hospitals are quieter and less responsive at weekends but they don't shut.

I'm so sorry this is happening. I don't think it's a minority, from my (substantial ) experience. Most HCPs subconsciously divide the world into deserving patients and Death Eaters malingerers and if you get sorted into the malingerer box the scorn and derision honestly feels righteous to them. They think they are doing right by acting that way, and the only regret is if someone is mis-sorted, from time to time.

It's a hard problem that HCPs get super angry about and won't reflect on. I don't know the solution. For you, all you can do is get re-sorted somehow. Good luck. x

I couldn’t agree with your last sentence more.

My extensive experience with A&E this year is that the situation is worse than you suggest, babies and younger children are usually seen as a priority, everyone else is seen in the order they're added to the list, not according to medical need.
In June at the 'best' local hospital to me at 1am, a father with a babe in arms who had vomited 8 times in a couple of hours was told to expect a 10.5 hour wait to see a doctor, albeit by an admin person with seemingly no medical training.
When a relative waited 18 hours before becoming an emergency admission for an appendectomy, a man was dragging his wife around A&E for more than 5 hours - she had lost the use of her left arm and leg and the left side of her face had fallen.
I'm on the outskirts of London, a relative in the Midlands received excellent treatment after being delivered by ambulance, it's a postcode lottery and many of us seem to be losing.

Terrible advice unless the OP is actually legitimately suicidal. It will only strength everyone’s belief that she’s somehow mental.

Oh bless you. I remember your post. I have UC too and I cannot believe you have been treated this way. It definitely does sound like a flare up. The hospital should be starting you on steroids and ivs already . It angers me how little care is shown in some hospitals for patients with IBD. Once your partner is there ask to speak to the sister in charge and demand to see gastro, you need to be started on basics while you wait for surgery. Are you already on medication currently for the uc or with the stoma did you hit remission?

I hope you're not at worthing too. I complained to Pals and they completely ignored me. No response at all. It's awful there.

This is horrendous, I'm so sorry you are going through this on top of being so ill.

I know your DH is home looking after children but can he advocate by phone in working hours? PALs?

Absolutely insist you aren't safe to go home and need to see surgeons

I have read so many stories like this recently. I have complex disabilities and am in various health groups online and some of the stories I’ve read would literally make peoples blood turn cold. The NHS is in a complete crisis.

Refuse to leave the hospital. Do not use the loo- ask for a bedpan/commode and do not let them dispose of it. Insist on seeing a specialist Dr. Demand to speak to PALS. Do not leave the hospital. If none of this gets results- tell them you are ringing The Daily Mail .

If you are losing so much blood you became dizzy and fell at home hitting your head …no discharge could be seen as safe at the moment.
You could try throwing in phrases like ‘safe discharge’ and ‘consultation with my previous colorectal team for their opinion’

If you're bleeding this much then I take it you'll be bleeding through your clothes onto where you're sat. What have they said when you've shown them this? If you're using protection, don't! So that they can see for themselves how bad it is.

OP, please dont give up. Fingers crossed colorectal team see you soon. Pls keep us all updated. Hoping you're better soon

Absolutely refuse to be sent home until you have been seen and a proper plan made. It shouldn't be this way but it is.

That’s good news op. No advice just wanted to send sympathy. I hope they take you seriously soon.

This is an awful situation, but, excuse me, wouldn't it be better to post it in a forum about health?

These past couple of months I've been disgusted with the way medically professionals have acted and spoken to me and members of my family.

I had a nurse practitioner ask me that same thing you mention OP. "What do you want me to do?" When I said I wasn't happy with her assessment of something that was wrong with my son. I pressed and he was referred to a specialist who found he had allergies which require treatment.

I went to see another NP recently enquiring about blood tests other members of my family had been advised to have. She'd never heard of them, they weren't a thing, and she started asking what the names of these tests were. "I've got hundreds of tests on this computer, you tell me what tests your family members have had". Admittedly not my best move telling her she was the medical professional, not me, but it did lead to her cutting the appointment short and telling me to speak to my GP - who sorted it out.

Please don't give up OP. Just because you've encountered some people who don't seem very supportive doesn't mean everyone is like that. You know something is wrong so don't let them tell you there's nothing they can do.