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.

@tiredandgrumpyy That sounds so frightening. I really hope you get the help and treatment you need.

How is your partner balancing work, toddler son and your health situation Op?

@escapethemaze DP is here with me, DS is with my mum (she ended up being surprisingly helpful), and my DP does not work, he is primary carer for our DS who is autistic with complex needs. I’m the one who works as I have my own business. My mum and my sister are helping with DS today and dropping him home later.

@Mumtobabyhavoc Thank you for posting the link for How to complain
For @tiredandgrumpyy and others, I would welcome some advice (@MsAmerica this may belong on the Health Board, but has relevance to 'our' patient @tiredandgrumpyy whose care we care about:

Some elements on the linked page

• Complaints should normally be made within 12 months of an incident or of it coming to your attention.
• Everyone who provides an NHS service in England must have their own complaints procedure.
• Every ICB (Integrated Care Board) will have its own complaints procedure, which is often displayed on its website.

The 'Not Invented Here' assumed exceptionalism seems almost designed to make it difficult to get national support/advocacy to help with complaints.

For those of us without medical qualifications or informal access to those 'on the inside', complaining in other walks of life is something that we do when we have all the facts. Where it takes years for us to make progress toward the right department/consultant, it's hard to say that the wrong tests were run or results/symptoms ignored until we have a definitive diagnosis - is it realistic to complain before we know this, or can we raise issues about elements of care without being tarred as vexatious troublemakers?

On a related note, I see today (https://www.theguardian.com/society/2023/dec/13/public-confused-over-physician-associates-working-in-nhs-research-finds) that a majority of the public haven't heard/don't understand who Physician Associates are - personally, on the one hand I have direct experience of a PA describing himself as 'a Physician', on the other, I made no progress and had repeated emergency in-patient admissions before a very thorough Advanced Nurse Practitioner (ANP) - self-described as a 'Clinical Practitioner' got to the heart of the matter and joined up the dots of symptoms, previously deemed to belong to different specialisms that in fact were the province of a different area of medicine altogether.

So sorry. Had some horrible medical experiences with a different type of problem.

Write down the key points and a time line.

Write down any questions you need answers to.

See if PALS can help while you are there. Show them what you wrote here, the other post too and the pictures: https://www.nhs.uk/service-search/other-health-services/patient-advice-and-liaison-services-pals

Any update OP, Im so sorry that you are going through this. 💐💐💐

Do you have any self employed sickness insurance that you can claim on?

Apart from if actual surgery is needed, think medical admission will serve you better. Usiwhst gapie s is surgeons might rv but pass on case to medics. The ambiguity is because bright red PR bleeding is usually a surgical admission, but in the case of IBD, more often goes medical sometimes with surgical rv.

' usually what happens is'

It is never not often that I think about a thread once I leave MN, but I have with yours @tiredandgrumpyy - I really hope you get some answers today and people listen to you x

Not read the full thread so I really hope this is resolved by now but I’m just horrified for OP and how this NHS is so hard pressed to help her.

I would echo pp and will remember this example of patient care at elections. 13 years of Tory underfunding the NHS, time for someone else to take over.
If this were me (I have no medical expertise) I’d pack a bag for a few days and call the GP and ask them to make me a hospital referral to urgent care to A&E on the same day saying what you have said on here. Good luck OP.

I have read your threads and I am so sorry that things have not improved. I just want to send best wishes and I really hope that they finally can sort it out once and for all and that you can feel better soon.

Oh my lovely, I feel your pain completely. I have Crohn’s disease and wasn’t diagnosed or taken seriously until I developed sepsis from an infection in my bowel, liver and spleen. You need to make a complaint to PALS. Ask for an advocate to be sent to speak to you or for contact details for them. I’m in Derby, if you’re local to me and you need someone to speak for you, bring you anything or hold your hand please let me know. Sending you my love x

Firstly please dont even think of apologising for being on here! What on earth are they thinking? I am so glad you will be seen today .Lets hope all is sorted soon if nor already.Many years of Tory government have seen problems in hospitals ,sending all good wishes and love to you xx

For general MN info, please please do not follow this advice!

@Mum2jenny no, ambulance referrals do not get seen quicker or taken more seriously. This was confirmed by a call handler recently and part of her advice on not blocking the ambulance service.

Ambulance if you need one, obviously, but not as a tactic.

OP this sounds very difficult, frightening and unpleasant and I hope there is a resolution soon.

How is funding the reason for the experience OP went through. Money wouldn't of solved her problem. Its the Doctors who refused to listen to OP and do what they should have done.

How can they mark an appointment as non urgent whilst knowing what OP has. That isn't a funding issue.

@tiredandgrumpyy maybe write down everything you want to say whilst you are still just awake enough. Then you won't forget anything plus you can try to get some rest. Also doesn't hurt to ask how long the doctors will be. You kind of have to make a nuisance of yourself in hospital.

I'm so sorry 💔😭

@tiredandgrumpyy
I second that get in touch with NHS PALS website A.s.a.p ...

Sorry you’re still not comfortable but I’m hoping someone will provide proper diagnosis and treatment soon.

Thinking about you OP fingers crossed you will have something positive to post soon. Please stand firm.

Hope you have some luck with the medics OP 💐

Surely you should be on some kind of fluid replacement or blood transfusion given how much you've lost? Anyway, fingers crossed someone sees you soon and gets you sorted.

Hi OP

Sorry you are in such an awful situation, i've been there, hospital stay in 2012 with severe UC, 2013 colectomy and permanent ileostomy at age 25.

Can you explain what "work" you've have done? Do you have a Jpouch?

Just sending some good wishes your way. What an absolutely nightmarish situation. xxx