UC flare - what else can I do

[GrockleBocs]

I have UC at the very end of my bowel and I've been very lucky not to have had any serious trouble for a couple of years. Until now. I think it's moved up a bit :( and it currently feels like I'm in labour (I'm not) and I'm bleeding. That's been bad on and off for a week. I'm taking my prescribed steroids too. The IBD nurses answering machine just says to ring your GP. Trouble is I have another condition which complicates things out of the GP's likely knowledge.
Is there anything practical I can do? It will ease a fair bit at times but at the worst I feel terrible.
I have a hot water bottle where it's most painful but it really hurts.

I have the same thing. For me rest, plain food such as porridge and jacket pots and a hot water bottle. Easier said than done but try not to worry and look after yourself. I feel down/anxious with s flare so be kind to you. Xx

Thanks fess. It's so frustrating! And yesterday I thought I'd turned a corner but today's very bad.

How you doing, OP?
Keep pestering the GP and IBD nurses; you might need some other meds.
In the interim, hot water bottle and nice plain food. Rest. I'm afraid I have been very naughty in the past and taken loperamide to make sure I can keep going to work (Crohn's-colitis here). It just lets you have a break from the incessant loo visits and being busy takes my mind off it, even if I am knackered.
Drink as much as possible.
What meds have you got? Got any suppositories/enemas left over from a previous flare?

I'm in the same boat. Have a mutitude of illnesses. Developed awful uc overnight after antibiotics in December. Now in hospital dosed up on steroids and although 24 hour pain has improved I am still bleeding heavily and have extreme pain diarrhoea twitching in bum tummy and nether regions for hours afterwards.
It's truly awful. I'm looking at immune drugs that may manage all my issues without making things worse

Sorry I hadn't seen the 4th & 5th posts.
I ended up in A&E and was admitted for i/v steroids. I was in quite a bad way with dehydration (I had been drinking but it was coming out faster than I could get it in) and pain. Got a bit of a lecture
Anyway I am home, knackered and on oral steroids with various other meds but my guts are a million times better :) It has moved up slightly which is a nuisance though.
Kinder that sounds familiar. It's just so consuming. I hope the steroids get to work soon.

The 'roids help so much. Hammer your system and get it helping again. They do make me feel weird but they help to get back to normal.

Absolutely. It's a 7 week course before I go back on the suppositories so needs must.

I've been on iv hydro for 5 days and although not as horrific I'm still really sick and my colons bleeding every time.
For those of you real bad did any of you have it like this where it just wasn't working. I've got loads of issues, Ank Spond sjogrens neuropathy hell. They're talking enbrel which I'm not sure will cut it.
Sorry to hike thread! Absolutely soul destroying this colitis. I'm on a dementia ward so at least no one cares about the toilet noises. The shame

Oh Kinder that sounds much worse than mine was. The hydrocortisone was pretty effective for me. It was the first time I've been hospitalised so I'm not a lot of use about further meds.
Hijack away and hopefully someone will have something useful to get you home to your own loo. Hospital loos are never comfy!

I had to go steroids alongside my mesalazine, then it didn't work so they added azathioprine, then it wasn't enough so they added adalimumab. Hopefully, now I rattle like maracas with all the tablets, it will be enough! Just gotta keep attacking it! It lives with me, I do not live with it!

Thanks guys. Is adalimumab also remicade?
I've lost all dignity now but I would love my own toilet. My pains are so strong it makes alot of noise.
I only got colitis at Christmas so can't believe how violent it is so quick.

Remicade is the brand name for infliximab, which is a related biologic drug.

I had a little look at UC and AS and Remecaid seemed to be suggested.

This diet changed my life. Haven’t had a glare for over 10 years.

www.breakingtheviciouscycle.info/

*flare

Should add, drug free for all that time also and I sometimes havd a week or so eating normally (holidays etc.)

Thanks guys. I just have a feeling diet won't help me. Gone weeks before on strict elemental. Will prob have to go back to that liquid only for a while. Just the weight loss is bad. And steroids cravings.

I'm very unlucky in that I have neuropathies and have to be so careful these drugs don't worsen it. Stuck in a real shit predicament - no pun intended

Diet has never helped for me.

The annoying thing is, as the years have gone by, it has always worsened and new things are added (arthritis). It's a pain in the arse.... Badum-tish!

How are you now @Kinderegg50?

Starting remicade today. It's so uncontrolled we have to try xx

Fingers crossed for you! Hope you see some improvement. And get home! You really have been through it.

Thankyou lovely. I hope you feel better soon. It's awful dealing with this. I never thought a day would come where I didn't care about the whole world hearing me moan groan grunt and trumpet to high heaven on the toilet. I'm there !

Currently dealing with my first flare in years, have been on aza a long time and now trying and failing to taper off pred for the 4th time. I felt amazing when I was pregnant but since weaning the tot things kicked off. I’m actually just out of a colonoscopy!

I’ve had uc for years, initially proctitis but it spread.

You’d be unlikely to get infliximab as a maintenance drug, I don’t think it’s licenced for us maintenance, only crohns, however I was given it to prevent surgery during a severe flare- so they do offer it as a ‘rescue’. You’d then be bridged onto an alternative drug, like an immunosuppressant, usually azathioprine is tried first. I did really well on it for 9 years, but since having a baby I’m not holding together and they are talking about trying adilumimab ( aka humira).

Hope you feel better soon everyone x

They agree they can't wait on aziathropine for me to kick in. Have had one infusion at hospital and slight improvement. Less blood anyway. Agreed second in 2 weeks.
Doctor made point of saying I just had a 3k drug. It's disgraceful it's allowed but I will get what I need come hell or high water. I'm used to arguing with the system.
I totally feel for you ref pregnancy. It turned my life upside down from normalish to seriously chronically ill and unable to work with a collection of diseases. I believe it was always in the post so never ever feel upset about being a mum. People just don't realise what some women endure via the hormone effect

I do wonder if pregnancy set me off too. I had issues before but things went awry in my last pregnancy and diagnosis followed. My whole system has lurched from disaster to disaster since. But the babies are amazing :)
Kinder hell yes to arguing for what you need. Autoimmune patients learn to be stroppy very quickly. Glad the bleeding is less. Are you home? I'm obsessed with home
It is wrong that they guilt you about money for drugs. Do they do that to cancer patients? NICU parents? My regular meds cost 4k pa but it means I work and pay tax etc.
Anyway, I am doing OK. Having tachycardia from the steroids at times but otherwise very good :) Am willing good things to you!