Just out of hospital - what to expect now?
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Hi guys,
So i'm very newly diagnosed and my journey has been pretty rocky at the moment.
I first noticed problems in May/June when I wasn't having any formed stools and started to notice bloody mucus mixed in with the poos with the usual increased urgency/frequency. I went to the doctors and did various tests to rule out infections etc.
My calprotectin came back at <1800 which worried the doctor and he referred me to a GI. the GI put me on 30mg of prednisolone, tapering down 5mg a week. A few weeks later, I had a Flexi Sigmoidoscopy which showed 'mildy/moderate active UC'. The GI wasn't particularly concerned even though the prednisolone still didn't seem to be working. He told me to 'give it time'.
It took about 4/5 weeks of being on prednisolone to finally start seeing improvements in my stools. I was on my last week of pred, down to 5mg a day and I finally felt normal. I had another appointment with the same GI who started me on mesalazine (3x800mg a day).
Finally, I was off the prednisolone and just on mesalazine and I was feeling fine.. for the first 3 days. I came off the pred on a Tuesday and by Friday, things started to loosen up, i noticed blood again and all my symptoms started to come back.
I rang the IBD nurse who told me to double my mesalazine dose but this did nothing. All i noticed was the pills were just going straight through me. Once I even saw the pill with its full contents, just partially broken in my diarrhea.
Over the next 2 weeks, things progressively got worse and worse. I thought that I had experienced a flare up in my original diagnosis, but I think this was my first real flare up. This time there was blood every time i went to the toilet, mucus every time and very dark horrible diarrhoea with lots of pain while on the toilet and before a BM. I would wake up in the night with urgency and felt rough. I wouldn't classify it was a severe flare up compared to the stories i've heard of people going 20+ times a day. I was going about 6 times but had all the other nasty symptoms. After about 14 days of this, I could hardly eat anything and started vomiting. That was when I decided I needed to go to hospital.
My mum took me to the hospital, they checked my blood pressure/heart rate and admitted me for blood tests etc.
They took a CRP reading and found that my CRP level was 117, so I was admitted that night. I was put on IV steroids 3x a day. Daily, I started to notice improvements but I was still not myself. My CRP dropped a bit every day. After 2 days it went down to 64, 2 days after that it went down to 37. The GI then did another flexi Sigmoidoscopy on me and said there was moderately active UC with 'no significant ulceration' (sounded good to me!) - my stools were still loose, I still felt rough but things seemed to be getting better.
it was day 6 now and the GI said that based on my CRP results from that day, he would decide whether to move me onto prednisolone from IV steroids. My CRP came back at 14 and I was moved onto 40mg of prednisolone and to be monitored for the next 24 hours.
Things felt normal-ish again, I was going once a day, bleeding had gone, my newly acquired 1 poo a day turned into a beautiful type 5 instead of a type 7. I felt ready to leave. I was just awaiting my new CRP reading to see if the GI was happy to discharge me.
The CRP came back at 12.5 (not as low as i'd hoped 
) but at least it hadn't gone back up - and the doctor was happy to release me.
However, after being discharged, I haven't really been given much information about what to expect, what next, warning signs etc.
I am now following the medicine regime of -
40mg Prednisolone - tapering down 5mg per week
3 doses of 800mg mesalazine a day
1x lansoprazole
2x adcal (for vitamin D on the steroids)
I am so terrified that now I'm off the IV steroids and onto prednisolone, I'm about to fall straight back into how things were before. Is this common? Or should the prednisolone keep things in check.
My other fear is that after this 2 months of being off the steroids, things will just go straight back to how they were 
Do people find that after a steroid course, things revert straight back or is it positive, does the prednisolone knock things into place and keep you in remission for a while on mesalazine?
I'm hoping my relapse before was caused by not being on the mesalazine long enough when I came off the steroids - seeing as I was only on mesalazine for the last week of being on the prednisolone last time.
I feel very lost and scared. I've been out of hospital for 2 days now and today was a loose stool again and this has really scared me at the prospect that maybe the oral prednisolone isn't working
0 likes, 1 reply
bjwwil Joel53242
Posted
Morning AJ firstly glad your back home and feeling better. I have never been hospitalised with my UC but did have significant ulceration. I think you might be partially right about not being in mesalazine that long before being readmitted..I also wonder if you need a higher dose...3 x 800 doesn't seem that much. I'm on 4g a day so 4 x 1000mgs tablets so I wonder if you're needs hoping where your symptoms are so severe . Also thing with UC is, it's like a ninja......it will flare up suddenly but you can go a long long time in between. Touch wood I've not had a major flare up for a year but I radically changed.my diet. Good.luck, keep well and try and identify if there are foods which trigger you so you can avoid those.