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.

I’m so pleased to read you are now being looked after properly. Wishing you a speedy recovery 💐

OP I’m so so sorry you are going through this. I’m so pleased you’re being taken seriously now.

Are you at RSCH? I honestly wouldn’t be surprised…

Thank goodness 🙏 I bet dh is relieved too. And your mum.
I hope you have a good sleep tonight.

super glad to read your update op

So pleased you’re getting the right support OP, have wondered about you through today. Everything crossed you get the right care now x

I was so worried for you this morning. Wonderful to read you are receiving sympathetic treatment now. Keep us updated OP and I hope you manage to get some sleep and rest. Enjoy the jacket potato!

I’m so so sorry for what you are going through, I wonder if it might be worth highlighting some of what you are going through on social media, and publicly shame them, might give them the kick up the arse that they need. Otherwise I agree with the PP who said show them this post and the photos if you haven’t already done so. I hope you find the right person to help you. 💐

Hi @tiredandgrumpyy

I'm so glad you've finally been listened to and are now being taken care of properly.

When you feel strong enough it would definitely be good to get in touch with PALS and tell them what has happened. You've been treated appallingly.

OP please contact PALS first thing in the morning - Patient advice and liaison service. They are there to advocate for patients and absolutely will help. They will be kind and sensitive to your situation.
Don’t give up OP, if for nothing else, keep going for your son. I had years of bowel issues and it is awful. The first Doctor I saw said I had piles and it was actually Crohns. I know it might not seem like it now but you will get better xx

So relieved to read your update, OP. I can think of few things more anxiety inducing than knowing that there is something very wrong with you, and that the medics aren't taking it seriously. I think you should still complain though, if only in the hope that no-one else gets such appalling treatment.

I know being in hospital is grim, but you need to be there. I wish you the quickest possible recovery!

Came straight onto NM’s when I got home from work to check for updates from you. I‘m so pleased someone has finally listened to you. Hope you get sorted and back home very soon.
Much love ❤️

I’m so glad to read a slightly more positive update OP - I’ll cross everything for a better few days for you.

That food doesn’t look too bad at all for a hospital. I visited a friend in Liverpool earlier in the year and had a really bad fall on a night out. I was admitted to the new hospital and it’s really lovely - no wards, everyone is in a single en-suite room! The food though…. 🤢 the only thing was that edible was the scouse. The rest was absolutely appalling. Worth it for a private room though 🤣

And for those of us that had to google that :-)

Scouse is a type of stew typically made from chunks of meat, usually beef or lamb, with potatoes, carrots and onion. It is particularly associated with the port of Liverpool, which is why the inhabitants of that city are often referred to as "scousers". The word comes from lobscouse, a stew commonly eaten by sailors throughout northern Europe in the past, and surviving in different forms there today.

So glad you’re finally being taken seriously.

Please complain.

Consider putting down in writing a bullet point timeline of what happened - the bald facts are harder for anyone to dismiss or wave off and they’re horrific enough on their own. And then you can add the additional non-timeline but objective elements e.g that this drive you to a mental health crisis and suicidal thoughts. Put names and wards. Hard facts are hard to dismiss.

Copy your MP, and ask them to send your letter for a response from the Health Secretary. This is better than writing direct to the Health Secretary. I am a civil servant. Letters written from a member of public to a minister tend to get a response from an official, usually quite a junior one; it’s likely no one above a middle manager will even see the contents. Letters written from an MP to a minister, enclosing a letter from a member of the public, must get a ministerial response. Women presenting with serious health conditions being disregarded is something Ministers must pay attention to, as is the reality of the crumbling NHS.

This will help someone else - the poor service needs to be pulled up, there are goodies in the NHS and they’re working hard under immense pressure but you’ve been treated appallingly and it can’t be allowed.

The fact you’re doing this with a DS with complex needs too - god I really can’t imagine what you’ve been through physically and mentally.

All the best @tiredandgrumpyy

Apologies been at work all day. Sounds a better plan. Can be difficult with IBD can sometimes fall between specialities but Gastro ward is what you need and a plan to get you in to remission.

Great update and I hope you enjoyed your dinner 🥘

@tiredandgrumpyy I don’t want to out myself but I have a very close family member who is a surgeon. I also previously worked in clinical negligence (not suggesting you’ve necessarily be subjected to that).

As tough as this is going to sound, you need to dig deep for some confidence and really over egg it. People will not agree with me saying this but in my experience, and certainly with my family member, things only truly get taken seriously (unless obvious) when a real fuss is kicked up and the list of symptoms keeps growing.. even if not strictly the case. You’re feeling sick, you’ve got severe abdominal pain, you feel dizzy and you’ve pain coming and going in your forehead… on repeat. Especially with abdominal pain. If you keep getting too upset they will write you off as over the top but you also must show you are very unhappy and worried.

Sorry if this sounds harsh but you need to not leave there tonight and you need to calmly list these symptoms are say you know something is wrong and you can’t keep coming back to a and e. On repeat.

glad theyre taking yous eriuously now op-them nurses are disgusting-so are only old people are allowed to be ill to get seen

I am pleased to hear you have been listened to but am not convinced you won't simply be discharged in the next day or so and be back to where you were. Do not leave the hospital without having been seen by senior consultant/specialist and having a clear treatment plan with timings in place. Just do not leave.

In addition:
Still speak to PALS - your experience has been appalling
Ask to speak to the Matron and complain formally about the nurses in A and E. Their behaviour towards you was shockingly unprofessional and uncaring and way below any acceptable standards.

My bet is they think they have calmed you down and dodged a complaint.

I agree.

Good morning @tiredandgrumpyy hope you're waking up feeling much more comfortable and rested this morning. Lots of good advice on this thread, I hope you'll feel strong enough to make a formal complaint, if only to help others in your situation not to be treated in the appalling way you were. PALS will be able to help you.

Very best wishes to you and your family.. x

So glad to see a more positive update @tiredandgrumpyy and that jacket looks surprisingly yummy for hospital food!
You have done such an amazing job advocating for yourself and I really hope you manage to sustain the strength to keep pushing to get it sorted.

I often have a jacket pot and beans before going home! Yum 😋

This isn’t true and you could be in an ambulance for 24 hours preventing them going to other emergencies. OP has already been admitted to ED anyway.

What condition has she been diagnosed with? I didn’t see the post.

edit: Just seen UC