I have been sh*tting blood for over a month.

[bluedonuts]

It’s personal and I hate posting on here for advice about it but it’s 10:45pm, I have nobody to call and people on here seem to be straight-forward and honest.

I have ulcerative colitis, have had my large intestine removed five years ago. Have had non-stop problems on and off but the past two months it has been quite bad.

I am struggling massively. Working mum with a six month old baby.

Most nights I am spending around 3-5 hours on the toilet with bad diarrhoea, I think I am suffering a prolapse and I am bleeding most times. Every other night for the last few weeks I have been up all night and then falling asleep throughout the day and feeling like a crap mum for it.

Last month I noticed heavy bleeding with large blood clots so I went to A&E who said I needed to see my consultant as I was flaring, and prescribed me steroids. I tried to get an appointment with my consultant but they didn’t have any. Over the next few weeks I was just deteriorating with constant diarrhoea and bleeding and fatigue. After a particularly bad night last Thursday I went to the GP the next morning who took my observations and said they were bad (high pulse around 120 and low blood pressure & low grade fever) and that he wanted me to go to the hospital. He sent me straight to the surgical team.

After a couple fingers up the butt, a couple of assessments and 6 hours of waiting, I was told the consultants wouldn’t be able to see me. But that I needed urgent investigations and they would be in touch on Monday. I asked whether it would be possible to have some steroids or enamas to tide me over and they said they didn’t want me to have anything as they preferred I stay in this condition so as not to mask any symptoms. But they would definitely be in touch Monday.

The weekend was hell and I have heard nothing until today in the form of a letter saying that I have an appointment with my consultant on 2 November.

Last night I was up until 9am with a bad stomach and today I’m bleeding heavily again.

There is absolutely no point going to the hospital, but does anyone know how I can speed things up or at least get any other help in the meantime? It’s really affecting my mental health and I’m just feeling like a shit mum right now.

Thank you x

[Morporkia]

Also 💐💐💐and if you manage to get a direct number call it today, leave a message about what’s been going on and the severity of your symptoms....and remember to leave your phone number. I always forget then have to make a second call sounding like a twat!

[Morporkia]

www.crohnsandcolitis.org.uk/support/find-an-ibd-nurse-specialist
I used this when my husband was in much the same position as you. Got IBD nurses direct mobile number and it has helped so much

[MsKeats]

Pals

[Thomasina79]

I would second the advice about ringing the specialist gastro nurses, the CNS people are usually brilliant at getting results

[KormaKormaChameleon]

You don't need a referral to or advice from medics you need admission under medics. You can look up NICE guidelines for acute flare ulcerative colitis for an example of what your treatment should probably be. I can tell you it's not 'outpatient review in 6 weeks time' or whatever has happened and neither is it 'sole surgical review'. It's admission and IV medication and support. Get thee to A&E!

[gretagreengrapes]

Do you have contact details for the IBD specialist nurses? If not look them up on your local hospital website, or call the hospital switchboard and ask to be put through to them (often it's a voicemail and they call you back). My friend with UC did this when she moved cities and got seen by them pretty much straight away via this route, so worth a try!

[Thomasina79]

Yes, all the above is good advice.

Another route is that your GP can obtain advice using the electronic system all GPS and hospital use which is called e referrals. They can use the route called advice and guidance in the e referral system. This is a way they can communicate directly with the doctors at the hospital. I work on the system in my job and quite often a reply is received within a couple of days.

You sound in a very bad way and must be exhausted. I hope you get the help you need soon.

[AnnaMagnani]

You need admission under medics.

After that they can decide if it's surgery or not. and do everything else. But no medics is going to turn you down for an admission or start fussing about specific named surgeons or any BS like that

[5willmakeyougetdownnow]

I am totally shocked that you have been sent home like that twice. You urgently need to be admitted for Iv steroids. I am currently in hospital with a severe flare of Uc according to them. I was in the loo 17 times a day with small amount of blood no clots. I was admitted on Friday the consultant came and met me in emergency. I have been put on IV steroids and am reduced to 7 times a day already. If left you risk more surgeries or worse outcomes. I’m am disgusted with the treatment you have received. I would urge you to please go back to Emergency and fight and advocate for yourself. I know how hard this is when you are on the floor utterly exhausted. I hope you get this sorted soon.

[Mimishimi]

Specific carbohydrate diet - Elaine Gotschall is the only thing that has worked for my husband.

[WhatWouldYouDoWhatWouldJesusDo]

Go to a different / better hospital and present at A&E when you flare ........that's how my sister finally got my niece's epilepsy diagnosed. She booked a hotel and when my niece had yet another seizure that were being dismissed as febrile convulsions and 'Autistic behaviours ' at our hospital she took her into Alder Hey........had to travel 300 miles and spend a fortune on hotel rooms but it was worth it. Just ridiculous that was what she had to do to be listened to.

[SuzieQQQ]

Wow that’s shocking OP. How awful for you. You must be exhausted. Like someone else mentioned, I’d pay to be seen privately. Good luck

[bluedonuts]

I keep being told I need to be referred to gastro but it never happens. My consultant is a surgeon, however it’s not the surgeon who did my surgery - sadly he left and he was amazing. I’m going to call the GP on Monday morning and also my consultant’s secretary. I’ll look for his direct email too and if no luck contact PALS.

[PastMyBestBeforeDate]

To be fair, gastro is in free fall where I live. I was referred as urgent (I have UC) in 2018. I am still waiting for that appointment. I'm supposed to be on annual checks but I haven't seen anyone in 4 years.
So on balance November is great.

[minnie465]

Another IBD sufferer here. Please please go straight to A+E. You need inpatient treatment

[HardJustGotHarder]

Private care may not see her as she has recently been at a NHS hospital, due to infection control

Is private healthcare even happening again yet?

[Twigletfairy]

Go back to a+e.

You don't need to lie like someone suggested upthread. A simple Full blood count can be a good indicator of blood loss. If they think you're lying or exaggerating, they won't take you seriously

[KormaKormaChameleon]

I obviously don't know the whole picture but I wouldn't necessarily think a private consultant appointment would be that helpful. It sounds like you need urgent care which is NHS based, the private consultant would most likely say that and you'd be referred back to hospital but a few hundred pounds lighter

[Domino20]

My suggestion is grim but I think you should (after protecting matress) lose blood on your bed then call ambulance and say you passed out due to blood loss. Can't stand without collapse and then make sure when ambulance attends that they see the blood on bed.

[KormaKormaChameleon]

Yes you have an underlying chronic condition but you are having an acute flare and the only destination is hospital admission and treatment now/immediately/urgently.
GP will refer you hopefully straight to medics but you might have to end up going via A&E, you could just got to A&E and be admitted under (likely Gastro) that way.
There has been some failure somewhere to recognise the seriousness and urgency of the current state of your IBD. You don't need an outpatient review in November you need an inpatient review now.
Don't stop till you get it!

[cloudylemonade13]

Another option might be to ask your GP to get a phone consultation with a consultant asap.
I know processes differ widely across NHS trusts but I recently had a flare up and my GP arranged a phone appointment with a gastro (not surgeon) consultant the next day. Rather than wait for a traditional face-to-face appointment it might just speed things up a bit if a specialist can hear how severe your symptoms are by doing a quick assessment over the phone and hopefully move things along in sorting out an investigation or treatment. As someone else said, November isn't an option.

Your also likely to be very dehydrated as well as anaemic so that needs urgent attention too. Really hope you can get this sorted, it's such a horrible condition.

[colouringindoors]

You poor thing. Based on my experience with my son who has a chronic condition, go back to the hospital and refuse to leave until you have an outcome you're happy with. Best wishes.

[AutumnSummersBuffysCousin]

I have no advice, but god love you, Thats fucking awful. You deserve some help.

[Batshitbeautycosmeticsltd]

@GoldfishParade

I'm sorry but the NHS needs to he completely overhauled. This is a fucking joke. I cant believe you need to wait until 2 November, it's a disgrace. I'm so sorry you are dealing with this, but I would go to A&E

That will simply never happen. Ever. What little of it that is left is going, going, gone. It's been systematically dismantled.

[Dustballs]

"Go and see a private consultant. You do not need health insurance. Phone local private hospital and say you are self funded. The consultant will cost£100-£150 to see you. This is what you need to do."

This is another option. If you see a consultant and they work out what's wrong (sorry it's late and I can't think of the medical term) you then can go back to the NHS to be treated. You don't have to continue with private treatment. But doing it this way you will bypass the waiting.