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First major flare for around 20 years

Posted: Wed Jun 28, 2017 7:09 pm
by lozy2002
I am 34 & not had a flare for as long as I can remember. I take a high dose of Asacol & use mesalamine enemas if I don't feel great & it normally works.
Since Sunday I have felt awful. Using toilet 6/8 times a day with the most awful cramps, I am totally off my food, feel quite sick too. I went to my GP today & he took bloods & gave me steroids. My consultant just phoned to advise the inflammation levels were really high & if no help with steroids by Friday/Saturday they will admit my for IV steroids. I have never had that before - that I remember.
The only other thing they want me to do is to hand a sample into my GP so they can check it's not an infection which I will try to do tomorrow.
I have been going really hot & then really shivery & I am.not sure if that is colitis related? Do any of you get that?
If I do get admitted to hospital what can I expect? I am petrified at the thought & hoping these steroids work fast.

Re: First major flare for around 20 years

Posted: Fri Jun 30, 2017 10:41 am
by Squiggle
Sorry to hear that you are feeling so poorly.

Hopefully the oral steroids will have managed to start tackling the inflammation. If you are admitted to hospital it's not the end of the world and the iv steroids are very good at stopping the flare.

I've only been admitted once for iv steroids (managed to cope with oral meds and steroid enemas on other occasions). That's a thought, if you haven't been prescribed any steroid enemas, they are very good at dealing with the affected area - I hated the idea to begin with, but after a long time I have got used to the idea and actually now prefer them to the oral meds.

The iv steroids are not dispensed continually - you usually have a canula inserted and the iv steroid is dispensed twice a day - takes about 30 mins each time, so you are free to get up and wander around otherwise. I found that the best thing was to take some loose clothes (t shirts and trackie-bottoms) so you can go off the ward if you want. Otherwise take plenty of books to read as it can be quite boring, and some nice shower gel, soap, bubble bath etc as well as the usual slippers and dressing gown.

The main downside to the iv steroids is insomnia (and it aways seems worse in hospital) so perhaps ask for a sleeping tablet to be prescribed whilst you are an in-patient, you'll be able to cope better when you are at home. The other side affects may become noticeable later.

You might also find that a major flare can make you horribly constipated - I know that this sounds like a contradiction, but the bowel seems to concentrate on emptying the last bit and forget about the rest. Hospitals will generally X-ray you to try and find out if this is the case - and then not even tell you! So, try and be aware of this yourself as I found they were very slow to actually provide any laxatives to tackle it and I had to ring my best friend and get her to bring me a large bunch of grapes!

Hope that you are feeling better soon.

Squiggle x

Re: First major flare for around 20 years

Posted: Fri Jun 30, 2017 5:11 pm
by lozy2002
Thank you so much for your reply.
The plan is if not better by tomorrow I am to admit myself via a&e. My own consultant is on call this wkend.
It's hard to tell if the tablets are working or not. The frequency is maybe down slightly to 6 or 7 times but the urgency & stomach cramps are horrific.
I literally want to stay in my bed all day as I have no energy & no appetite to eat (tho I am forcing myself even if it's toast)
I am thinking if still like this tomorrow I will need to go in?
What is a bit different for me is the pain - it feels higher up than normal but I do have active disease at different parts.

Re: First major flare for around 20 years

Posted: Sat Jul 01, 2017 12:34 am
by pastelito
Sounds like a rough time for you at the moment -- and that getting into hospital is probably the best plan for you.

None of us want to have to go to hospital, and I think it can be really easy to normalise severe symptoms once you've had them for more than a day. I know I've done this a lot in the past.

Your symptoms are: 6/7 bowel movements a day, horrific urgency & stomach cramps, no energy, no appetite. That's all really scary. Please take yourself to hospital and allow yourself to be looked after. It's not fair that you're having to deal with all of this, but the doctors and nurses at the hospital are the right people to help. In my experience, hospital nurses are exceptionally kind.

Also, Squiggle's advice for what to take with you to hospital is spot on!

Re: First major flare for around 20 years

Posted: Sat Jul 01, 2017 5:00 pm
by lozy2002
Thank you for your reply.
I went to the hospital today. Within 5 mins of arriving they had me in a room in a gown.
They done more bloods etc but my inflammation levels have reduced so they decided to let me go home.
Suggested I spk to my consultant on Monday & decide if he wants anything further to be done.
Hospital also have buscapan to try & help with the spasms as well.
Glad to be home & glad blood levels have improved but wish I didn't still feel so rotten

Re: First major flare for around 20 years

Posted: Sat Jul 01, 2017 7:51 pm
by lozy2002
The most difficult thing is having no appetite but knowing I need to make myself eat. Yet when I eat I feel ten times worse

Re: First major flare for around 20 years

Posted: Sun Jul 02, 2017 7:52 pm
by Squiggle
Glad to hear that you are home, but very sorry to hear that you are still feeling so poorly.

If it's possible try and take things easy - get plenty of rest and only eat small amounts.

Hope that your consultant is able to help and that you are feeling a bit better soon.

Squiggle x

Re: First major flare for around 20 years

Posted: Mon Jul 03, 2017 6:36 pm
by lozy2002
Thank you.
I went back to my GP today who has signed me off & advised me to speak to my consultant again.
Unfortunately my consultant is off today but they got an IBD nurse to contact me. She was quite blunt & told me she runs an advise line & isn't there to help in emergencies & if I feel that bad to go back to a&e otherwise keep going & call her in a week if no better.
I am rather upset with her reply. I only have one more day at 40mg pred left then meant to be going to 30mg but don't feel I should be reducing until I have had some relief?
No idea where to go from here. Whether it's back to GP or a&e.

Re: First major flare for around 20 years

Posted: Tue Jul 04, 2017 8:35 pm
by Squiggle
Oh dear - that doesn't sound right. I thought that the whole point of IBD Nurses was to be available to provide advice, to write prescriptions for people experiencing flares and to be alert enough to arrange for anyone with really bad symptoms to be admitted to hospital (well that's what they do at my local hospital!). I'm not surprised that you felt upset.

If the 40mg per day isn't making any difference to your symptoms you really need more help. My advice would be to try and speak to your consultant and to stress that the steroids aren't working. One of the measures used to assess the flare is whether you wake in the night from the pain or need to use the toilet - so do mention this if it's appropriate. You also need to make a note of how many times you visit the toilet during the day and how much blood you are losing.

If you can't get hold of your consultant, then try and see your GP. If the GP is inaccessible or not able to help then present yourself at A&E as a last resort as GPs can sometime bypass the admissions system and arrange for you to admitted onto a ward.

Good luck and hope that you manage to get something sorted out soon.

Re: First major flare for around 20 years

Posted: Tue Jul 04, 2017 10:37 pm
by lozy2002
Thank you so much for your reply again.
Still not much of a change. Felt very slightly better but then I had some food & the pain & nastiness has started again.
I don't know whether to reduce my steroids & see what happens or to keep at the higher dose.
My GP is very accessible so I know they will either give me an on the day appointment or call me & spk in phone if needed. Although know it's the hospital I need to speak too.
I could follow her advise & go to a&e again but realistically I think I need a few more days at 40mg & feel I don't want to waste an emergency departments time over it (although I know there is a chance I could end up admitted)
The pain & spasms are pretty high up & don't let & apart from buscapan I am too nervous to try anything else for them without advise.
Previously before I moved I had a great nurse I could call who would see me almost straight away (or within a day or two) starting to wish I had never moved now