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.

Try another hospital, travel if you have to and can, take a taxi, an overnight bag etc, go straight into A&E with this post.

Can your mum look after DS and your partner come and be with you? Agree about photographing everything you lose/bowel motion/asking for a bowl that sits over the toilet to capture it. This will get better I promise, the loss of blood will be making you feel horrendous. The NHS is broken and care is shit I’m sorry.

“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?”

Next time the answers to these questions are: YES I absolutely do.

Sending love OP X

Oh yes so strange when I’ve literally had my colon removed and two major bowel surgeries and have been told I will need a stoma bag again. Get off the thread if you’re going to be unhelpful @Hungrycaterpillarsmummy

OP you will get through this, and get treatment, don't give up.
As pps have said if you are comfortable saying where you are a mner may be able to help, understand if you don't want to.
Could your partner contact PALS and explain, as it must be hard for you as a patient, limited phone battery etc.

Tell anyone who will listen about the amount of blood loss and the fainting.

And I agree, ask for a chaperone. Xx

Could you have your dp take you to an a&e far away so that they have do something and keep you in for tests because you can’t just be sent home. I know that would be a difficult journey for you. It’s terrible what’s happening to you. I hope that you can get medical care asap.

Absolute number one tip would be to LET IT SHOW. Don’t try to hide the bleeding - forgo your dignity and any sanitary towels and just bleed the fuck everywhere. Then they can’t turn a blind eye. I genuinely can’t emphasise this enough - LET IT SHOW.

And if you’re not, go to a different a&e for the love of god don’t stick yourself in the same hospital as that last disgusting doctor.

YOU are not in the wrong.

please go to A&E! your situation has worsened and your life is at risk with this much blood loss. Failing that, you won’t want to, but keep asking (demand nicely and as strongly as you can) that your gp write to colorectal service to upgrade the referral to urgent. Tell them your situation has worsened majorly and needs urgent consideration. As an NHS secretary I see this a lot - Gps asking for referrals to be reconsidered etc due to worsening situation. It usually works from what I see but i didn’t work in this department.

@tiredandgrumpyy this is horrific. No advice but I feel so sorry for you. Would a private opinion be possible?

ive got loads of photos from today to show them. My mum has said she will have DS overnight so my partner is coming here and I know he will advocate for me

Yes, I agree. Its not nice but let them see the bleeding, it cannot be ignored then. I hope you're see soon.

This. Absolute nightmare that it has come to this but they cannot ignore the evidence of their own eyes. I am sorry the best suggestion is that you feel further degraded.

As an A&E sister with too much experience in the NHS I am utterly appalled at how you were treated on the ward by that surgeon. Please please complain!

As for now, you have lost a lot of blood, you have had a fall, you are dizzy, your heart rate is fast. You are highly likely anemic and as much as I wouldn't wish this for you, the best thing may be for you to have a low enough Hb to need a blood transfusion and be admitted. If not, you need to argue that this would be unsafe to discharge given your symptoms/ falls etc and you need admission to be seen by the colorectal and gastro team as an inpatient. Best of luck OP I really hope you get listened too now.

Absolutely this. They need to see the extent of the blood loss, they have no idea if you keep going to the toilet. I totally understand why you want to but I agree with this poster - you need to just bleed all over the bed for them to see the seriousness. Which is awful for it to have to come to this. So sorry op. I can’t believe this is happening to you

So sorry this is happening to you OP. That's good news that your partner is coming yo be with you. Hope they get a treatment plan sorted for you very soon x

@tiredandgrumpyy i am so very sorry this is happening to you.

I have ulcerative colitis, your symptoms sound very familiar to me.

when I developed uc the hospital I was admitted to and stayed in for 3 months (had my first child 18 months at home), were absolutely useless. I deteriorated and nearly died in there. The attitude of the staff was that there was no magic cure.

My mum got involved and got in touch with PALS, I was moved to a different hospital, they were completely different. Understood my condition, I got the correct treatment and was home about 3-4 weeks later.

I remember the surgeon coming to see me and telling me it wasn’t the first time the other hospital had done this with my condition, that he would support me in any complaint I wished to make, and if I hadn’t got there, I would have passed away within 24 hours.

Dont take no for answer. Go to a&e at a different hospital.

i don’t say any of the above to scare you, only to make you see it’s all about the consultants etc. Go to hospital but not the one you have previously been to.

Sent with luck and best wishes xx

Sending love OP - great advice on this thread and so grateful your DP is going to be with you.

Trying not to equate the state of the NHS with what you experiencing and hoping rather that it is a minority of terrible clinicians. Stay strong and fight as hard as you can - no one else will and your health is everything.

Another example of so called “angels “ in the NHS who are just horrible individuals who shouldn’t be in their jobs. Yes the NHS is near broken but thats no excuse for some individuals treating people like this. Hope you get sorted OP..lots of good advice here, though I doubt you have the energy to fight.

I’m so sorry to hear it. How can an entire GE department not know how to treat UC?! Shocking.

Are you in Worthing General? If so you have my sympathies.

Provincial hospitals aren’t great in general. I would wait to see what the response is this time. If they discharge you again and expect you to wait 6 months for surgery, ask your DP to drive you up to St George’s, Tooting tomorrow. I think you need to be in a good London teaching hospital.

I’m so sorry you’re struggling, @tiredandgrumpyy . I joe your partner manages to help you get some actual help today.

Was going to say this. They can’t see your bleeding it’s like they think you’re exaggerating. Let it show don’t cover it!!

Glad your partner is coming to support you. Sorry this is happening OP. As someone said just park your dignity and make sure the medics see for themselves how poorly you are. Please update when you can as you have lots of support here.

She doesn’t need to go that far! Royal Sussex also has good colorectal and gastro departments.

You’re not at Worthing are you OP if you’re in Sussex? If so, leave. Worthing hospital as a general entity is absolutely dire. In all honesty I would pack up and go to a different hospital because regardless of which Sussex hospital this is, they’ve been awful.

I have Crohn’s disease, nothing like the experience you’re currently going through but I have some level of understanding. I’m so sorry you’ve been left like this. When it comes to advocating for yourself, don’t worry about coming across as confrontational and rude, that’s not to say to start shouting or being aggressive, but being very firm and blunt is crucial.