Ulcerative colitis, would you call 111?

[changednameagain1234]

Hi,

Just looking for opinions really.

I was diagnosed about 19 years ago. Over the years spent a couple of months in hospital (about a year after diagnosis). Had many long periods of remission followed by flares treated with steroids.

I am on biologics and Mezalazine.

I started with really bad tummy pain and backache about 2 weeks ago (different for me, I don’t usually get pain or backache), as it was different I didn’t think it was colitis related.

Anyway fast forward to this past week, blood in stool on Wednesday and going more often, to now. Past 3 days going about 17 times in 24 hours, all but a couple are just bright red blood, the pain is awful before i go and during.

I have about 5-10 seconds warning or it’s too late.

Spoke to ibd nurse Friday and the waiting for my stool sample from Wednesday to come back.

I am used to flare ups, but the pain is unusual for me. I am also used to blood, but there is so much and mostly just passing blood.

Can this wait until tomorrow do you think? When I can speak with an ibd nurse.

I just feel like I am going downhill fast and worried if I leave it another 24 hours it will be even worse.

What would you do?

Anyone?

Hi this happened to me, go to A and E as ut sounds like you may need IV steroids to get over this flare up. Best of luckxxx

Hi. Yes I think if this isn’t usual for you you should seek advice. You know what’s acceptable for you and a lot of blood would worry me too.

I would advise you go to A&E today as you may need admission for iv fluids and treatment.

Go to A and E, you should have your bloods checked and as a pp said, need iv steroids, along with iv fluids, possibly some imaging and a review by a gastroenterologist.

Call 111. They can sometimes get you an out of hours appointment within A&E or outpatients.

I have UC OP and have been in your situation several times; go straight to A&E!! I’m surprised your IBD nurses haven’t advised this or at least started you on prednisolone considering how many times you’re going and with blood.

Based on what you’ve said, A&E will probably admit you and start you on IV steroids / fluids and do bloods / imaging ready for Monday morning when your consultant should take over.

I was admitted in April because I was going 20+ times in 24hrs and was switched to a JAK inhibitor (as I had obviously lost response to the biologic I was on) and within 48hrs I was down to going twice a day.

DO NOT WAIT, the longer you leave it the worse it’ll get and the more likely you are to need surgery.

Thank you all.

I just think if i go I will be waiting for hours and hours and then there is the toilet issue.

I can’t face being admitted, the hospital I would go to is awful honestly

Please please go to A&E, I understand about the hospital but you know surely given the state of the NHS they would only admit you if they really needed to. Is there another hospital you could try?

You said it yourself, you feel you're going downhill fast.

You need to get help today, you know that.

My IBD nurse says 111 in your situation. It wouldn't surprise me if 111 send you to A&E but no harm done by starting with 111?
All the best.

i thought I would give an update to let you know I did ring and I have been admitted this afternoon.

Had 100 of IV steroids, X-ray and bloods and ecg and stuff x

Hope the steroids kick in quickly.

I know it's no fun OP but you've done the right thing. Hopefully the IV steroids will do the trick and you'll be out soon enough. Try your best to rest and recover till it all calms down.

@nocoolnamesleft thank you 😊, me too.

I worry about the kids and housework and work!

You’re ill! Just because it’s a long-term condition doesn’t mean you should feel bad about needing time to rest and recover. Do that for your own sake and anyone telling you differently can go boil their head!
I hope you feel better soon.

@vipersnest1 😂, boil there head 😂. That did make me smile - thank you xx

Hi,

I just thought i would say hello and that I am still here.

I also wanted to say thank you to all of you for giving me a kick up the bum and a reality check to agree to come in.

Things aren’t great. Been on 100 of iv steroids daily since i came in and just getting worse.

I thought I had turned a corner on Monday afternoon, frequency slowed down and tummy ache and blood much better, then yesterday so much worse.

I am managing 4 hours of broken sleep because I am up on the toilet, went well over 20 times yesterday, stopped counting at 20, probably nearer 30 times. Still so painful and so much blood.

Had ct scan and it showed inflammation in all my sigmoid, so at least it isn’t all the way around.

What do you think they will do if the steroids don’t work? X

Hello, i have no useful experience or knowledge but I can give you a virtual hug!
I'm glad you went in. Really sorry things haven't properly improved yet, and hope they will very very soon.

I’m so sorry you’re in this situation OP; I know how awful it is!

What biologic are you on? If the steroids work and bring your flare under control, they’ll probably send you home with prednisolone (and a whole bag of other goodies such as rectal enemas) and change your biologic which can take some time to start working (the loading dose is usually 12 weeks) which the prednisone should bridge. I started on infliximab and then went onto ustekinumab and risankizumab. Along with the biologic, they may also put you on azathioprine or mercaptopurine to support the biologic (I was on mercaptopurine when on infliximab).

If the steroids don’t work, they might try you on a JAK inhibitor which can start working within a few hours. Like I said earlier, I was admitted in April and they didn’t even bother with steroids this time; they put me straight onto upadacitinib and I noticed an improvement almost straight away and within 48hrs, I was down to going twice a day from 20+ and I was also passing just straight up blood (I also stopped counting). I’m 9 weeks down the line now and I’m going once a day with no blood or mucus and will be moving from the loading dose to the maintenance dose at week 12.

If all else fails though, then the last resort is surgery which could result in a temporary or permanent stoma but fingers crossed you won’t get to that point.

Do let me know if you need any support OP or if you have any further questions.

Disclaimer: Everything I’ve said is based on my own experience / medical history and my knowledge of the different pathways; things may well be different for you though based on your circumstances.

@ThrowAwayHooray
thank you for explaining all of that, and I am so pleased you are okay now 😊.

please could you tell me what upadacitinib is, that is news to me.

I am on adibulam (totally aware that is absolutely spelt incorrectly). I was on azathioprine for 15 years and moved onto biologics about 6 years ago with max dose of Mezalazine x

Thanks @changednameagain1234, how are you feeling today?

Upadacitinib is a medication called a Janus kinase (JAK) inhibitor. JAKs are proteins that play a part in activating your immune response which helps you to fight infections HOWEVER these proteins can also cause inflammation.

Upadacitinib works by blocking the effects of JAKs - specifically JAK1s - which reduces gut inflammation. It literally starts working in a matter of hours and is one tablet a day as opposed to infusions.

How are you doing today, any better? Are the steroids helping at all? Ideally they’d kick in and you’d move to another biologic.

@ThrowAwayHooray
Hi, I am so sorry for the delay in replying.

Thank you so much for the valuable information which is very helpful. I had no idea about JAKs.

I came home Sunday night, the nurses and doctors were struggling with changing my cannula 3 times a day. Couldn’t get a line and when they eventually did it collapsed for the next dose. The doctor said ideally they would want me to stay in, but given I am on biologics and then 100mg steroids a day and my immunity, they were uneasy as there is infection on the ward. So home with steroid tablets.

My bleeding is still there but only a tiny bit, my frequency is so much better, but I feel awful.

I have had my share of flares over the years, this one was different from the rest. The pain so much worse, and I am sure you know what I mean about when having a flare not panicking about blood, but omg, so much and just blood over and over (sorry tmi I know!).

I also have a problem with my liver and I have been told by the dietitian I need to seriously up my protein levels. I am doing this, but now I am getting a bit stuck as no fibre! Apart from carrots I cannot think what I am allowed to eat to get things moving. The no going is now starting to make my flare worse.

I don’t suppose you have any ideas do you? It’s difficult to fit in all this protein and have room for fibre and if i can fit it in what on earth do I eat every single day?!

Gosh I am jealous of people who don’t live their lives by their bowels!

Thank you again for taking the time to reply before, I just felt so weak and poorly to reply xx

No experience of Ibs so check but you can get fibre supplements fibrogel??? To drink

can you have fibre and protein containing food - beans and pulses , mushrooms

A bowl of fruit n fibre always sends me running to the loo, could you manage that? Protein from the milk and nuts too.