Newly diagnosed. Looking for advice

[Raerae2781]

Good morning. I've sadly recently been diagnosed with ulcerative colitis. I was suffering 5 years ago with calprotectin score 450 and had a urgent colonoscopy that found polyps and piles which were removed biopsied/ banded. Continued to have on off blood in stools for a few years each time I was blaming piles. However in January this year I had the worst plantar fascitis ever and fast found all my joints painful and the bleeding, diarrhea was worse so went to the GP wanting surgery to finally rid me of the issue. Stool calprotectin was in 150 with crp and esr raised. A positive fit test and I had a colonoscopy at the start of May. Where I saw the state of my colon the ulcerated parts and healthy parts the contrast was staggering. It was recorded as mayo score 2 which I read is moderate disease. I've been started on mesalasine 800 mg three times a day and have been taking for 2 weeks. I haven't seen any improvement. I'm on the waiting list for gastroenterology but in my area it's approximately 18 weeks wait. I'm a bit unsure what to do in the meantime. Just thought I'd reach out for support from wise people a few years down the line. Is 2 weeks long enough to see a difference? Should I push GP for more medication? Thanks

[Brian1977]

I would be pushing for steroids at the moment while you wait sorry for the short reply not having a great day 😞

[Raerae2781 in reply to Brian1977]

Thanks Brian1977 sorry to hear it's a bad day. Hope you feel better soon.

[Susiiscute]

I agree with Brian1977, Mesalazine will hopefully work in the long run, but a short course of steroids should stop the flare up. Your GP can prescribe the steroids. I had a five day course, from my GP, which wasn’t quite enough, so my GP prescribed another five day course and that stopped the flare up.

[Dalebury]

Hi there

Sorry to hear you are unwell , it can be quite depressing suffering as you are as well as extremely tiring. Like others have said I'm surprised you haven't been prescribed steroids which in my experience can work well, do talk to your GP about this.You will adapt to your condition and learn how to manage it as time goes on. Don't overdo things, get plenty of rest and things will improve

Take care and God BlessYou

[Jameshuh]

Hi, sorry to hear about your flare. It takes some time for mesalazine to work. You could try steroids or salofalk/budenoside enemas (after checking with your doc of course) 18 weeks is too long to wait if you are rushing off to the loo all the time I'd definitely push for something to help control the flare. Another thing to try is diet i.e. avoiding alcohol, sugar, spicy food etc experiment with stuff that minimises issues. Good luck and I hope you get the flare under control pronto.

[Raerae2781]

Thank you all. I've made massive changes to my diet. Hoping it will make a difference. I will message the GP for advice on steroids to help get me feeling better faster. 👍

[Howlinwolf999]

Seems to me meds like mesalazine/asacol/salofalk are long term treatments and meant to keep milder UC stable. We are all different, but in my experience when I had a significant flare the only thing to get me back to stable was steroids. As a long term sufferer (circa 40 years) prednisolone worked for me, usually 40mg for the first week then slowly reducing over the following weeks, under medical guidance. There may be more modern meds available without the prednisolone side effects. Speak to your GP first and try and push to escalate your gastroenterology appointment. I don't know which country or county you are in but I think you cannot afford to be passive and wait, you have to push to get what you need.