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Original poster

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

286 replies

tiredandgrumpyy · 12/12/2023 20:36

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.

OP posts:
Vettrianofan · 12/12/2023 22:16

Echoing all others on the thread, wishing you a speedy recovery and hope you get seen as soon as possible tonight 💪🍀🤞🤞

MeMySonAnd1 · 12/12/2023 22:17

Devonshiregal · 12/12/2023 21:35

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.

I know how undignified it may sound, but I have seen time and time again this to be the only thing that works when they don’t believe you.

Mirabai · 12/12/2023 22:17

@mauvish I can’t find OP’s previous thread but afair she was discharged by the gastro ward because she needed surgery. But she wasn’t referred for emergency surgery so it was going to be a 6 month wait.

BlueGrey1 · 12/12/2023 22:19

Have someone trusted with you when meeting the medical team who can take notes on what they are saying, let them see that notes are being taken, privately record the conversations on your phone aswell,

MissIndecisive2023 · 12/12/2023 22:21

tiredandgrumpyy · 12/12/2023 21:52

I used to be under St Marks which was amazing after my operations. Best colorectal surgeons in the country. If tonight fails I might ask my GP if I can see my old consultant there. Just want my partner to hurry up before I’m seen because I just overheard a surgeon say ‘but she was discharged 2 days ago’ and the nurse confirmed they were talking about me so I’m not expecting much.

“Yes I was discharged 2 days ago, but my symptoms have worsened/changed since then. I’m now getting dizziness/unable to cope with the pain/very worried about the total blood loss/etc”.

Has your DH arrived to be with you?

Ireolu · 12/12/2023 22:21

mauvish · 12/12/2023 22:07

OP, are you person who posted more details in another thread -- your underlying diagnosis is UC, I think, is that right? And you have a rectal stump from a previous subtotal colectomy which has been repaired with an end-to-end anastomosis from your small bowel?

If so, then I'd suspect you have recurrence of the UC in your rectal stump. I'm sorry and I guess you already know this.

I used to be a GP, not a GI surgeon or medical gastroent. But I remember the sickest person I've ever seen with UC was a young woman who had not had a previous diagnosis but was bleeding like you, had been for a month, had been sent home from hospital etc etc and looked, I kid you not, as though she was close to death. I got her admitted under the medics, not the surgeons, and they were able to stabilise (and diagnose!) her UC. (I don't know what became of her longer term).

Some places refer all rectal bleeding through the surgeons and it may be that where you are does that, but I'm wondering if you would be better going under the medics at the moment, in the hope that they can stabilise the situation without any emergency cutting. Can you ask them to refer to the oncall gastroenterology team? After all, IIRC you have the diagnosis, and that diagnosis would normally be dealt with by them --

I agree with this post you need management of your IBD by a medical team and not the surgeons. What did they do with you when you were in for 4 days??

Arewethebadguys · 12/12/2023 22:23

Mum2jenny · 12/12/2023 20:43

It may be more helpful if you dial 111 and get admitted by ambulance. I think they may take you more seriously with that route of admission.

Wtaf?! Nonsense advice. Google triage and educate yourself! Ffs

PepsiCoco · 12/12/2023 22:25

I’ve got a recurring illness and I know when it’s first started 10 years ago and I went to A&E they were amazing and looked after me. Now they just leave me sat in pain for hours then send me home without treatment. It’s really concerning to see the state of the NHS

romdowa · 12/12/2023 22:27

I agree with a pp. Ask for a commode or bedpan and let them see what's coming out of you. I hope your dh can stand up to them for you. It's so hard to be tough when you are tired , frightened and in pain.

InShockHusbandLeaving · 12/12/2023 22:30

Oh you poor thing ☹️ I hope you’re getting proper treatment now. We have become an inhumane society when genuinely ill people are treated so callously. Hoping for a better update from you when you’re feeling up to it.

Murphs1 · 12/12/2023 22:31

I would absolutely involve PALS, this jus appalling treatment, and PALS are generally very helpful.

AngryBirdsNoMore · 12/12/2023 22:34

Oh OP I’ve been following your threads - I’m so sorry for what you’ve gone through. It sounds like appalling treatment.

I agree with others. Let the bleeding show. It may be undignified but it will demonstrate that you are not exaggerating.

I hope your partner has arrived?

Do you know how to contact PALS?

Rosesandstars · 12/12/2023 22:36

Devonshiregal · 12/12/2023 21:35

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.

I agree with this. It may be the only way. If the blood and mess gets everywhere then it will very much become THEIR problem to deal with rather than yours to beg them for.

watermelonsugar56 · 12/12/2023 22:36

I’m so sorry love 💐 Hope you get seen and are able to get some relief ASAP.

OhwhyOY · 12/12/2023 22:37

I agree with those saying bleed in the bed/on the seat/wherever you are so they can see. Tell them you're too exhausted from not being believed and the blood loss to move any more. Also the whole 'what do you want me to do, ring them on a Sunday?' I would respond yes, ring them on a Sunday, people get really unwell and die on Sundays as well as during the week. There's always cover of some description even if very limited.

OhwhyOY · 12/12/2023 22:38

PS I'm so sorry this is happening to you, I've had similar treatment in less severe circumstances and it's awful. No wonder your mental health has suffered so badly. We are all thinking of you

Coffeeisnecessary · 12/12/2023 22:44

I'm so sorry to read this op, I really hope someone takes you seriously soon. Just dreadful treatment. I hope your partner is there and is advocating for you.

Tacotortoise · 12/12/2023 22:44

Another one who thinks you should ask demand to see the on call gastroenterologist /IBD team when you are seen. You need to be admitted and treated.

cezannesapple · 12/12/2023 22:46

OhwhyOY · 12/12/2023 22:37

I agree with those saying bleed in the bed/on the seat/wherever you are so they can see. Tell them you're too exhausted from not being believed and the blood loss to move any more. Also the whole 'what do you want me to do, ring them on a Sunday?' I would respond yes, ring them on a Sunday, people get really unwell and die on Sundays as well as during the week. There's always cover of some description even if very limited.

I don’t know if you’ve ever been in hospital on a weekend, everything just stops. You really don’t want to be seriously ill over a weekend.

wherethewestwindblows · 12/12/2023 22:46

Mum2jenny · 12/12/2023 20:43

It may be more helpful if you dial 111 and get admitted by ambulance. I think they may take you more seriously with that route of admission.

This is a total myth; please don't advise anyone who is capable of making their own way to A&E to phone ambulances because of an incorrect belief it equates to different care at hospital. There are people waiting over 24 hours after calling 999 because there aren't enough crews to respond.

Moonwatcher1234 · 12/12/2023 22:48

This is unacceptable and I’m so sorry you’re going through it. Please escalate if they continue to fob you off - might even be worth consulting a clinical negligence lawyer because this can’t be right. Stay strong - after hardship comes ease.

Squirre · 12/12/2023 22:48

Ditto everyone else saying get a bedpan. I know this isn't dignified OP but if you can't get one I'd maybe be tempted to bleed onto the bed. Struggling to the toilet is giving them an excuse to dismiss you as ok "functioning normally - able to walk to the bathroom" that kind of awful attitude. You should not be being treated this way but there are no easy answers in the very moment. If you get rightfully upset and angry and you're already being dismissed this can be used against you as well. It's awful and cruel what you're going through. Hopefully once you're partner is there and advocating for you too this will help. Really hoping you get a positive outcome OP and please don't give up. It's a battle you shouldn't be in but you deserve help x

BETSI · 12/12/2023 22:49

I'm sorry you are being dismissed and treated badly, it's inhumane, if I'd lived close to you I would help you in a shot, you definitely wouldn't be alone, please update how you are getting on, I'm worried about you

scoobysnaxx · 12/12/2023 22:51

I'm so sorry you're experiencing this. It sounds dreadful and so so upsetting.

PLEASE PLEASE report that consultant to PALS. How degrading to speak to you like that.

user1471597558 · 12/12/2023 22:54

This is heartbreaking and also so strange. I have ulcerative colitis diagnosed two years ago.the first time I went to hospital it was because my bloods were anaemic and I'd been having diarrhoea. They phoned me to come in and stay, when I had been telling myself I was fine. The second time, I was admitted, I had again been going to the loo with bloody diarrhoea six or more times a day. But I felt well enough to walk out and get the bus there. They told me they had criteria for admission like going in the night or more than 6 to 10 times a day. I can't imagine being so much more ill and not being told you need treatment.