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Oral steroids don't seem to be helping my flare - need some opinions?

Posted , 5 users are following.

steph789
steph789

I was diagnosed with UC in September 2016 after having a colonoscopy. I was given IV steroids in hospital for 5 days and then went onto oral steroids (prednisolone). I was meant to taper down every week from 40mg but it wasn't working so I had to taper down every two weeks.

About a month ago, I started feeling more urgency to go to the toilet and diarrhoea symptoms so called my GI nurse who said it sounded like a flare and told me to take 40mg pred and reduce weekly. I also done a blood test and stool sample. A week later, I had my regular outpatients appt and I told the doctor I wasn't feeling much better and had to call in sick to work some days. He advised me to stay on 40mg for another week. My blood tests came back normal and so did my stool. A week later I phoned the GI nurse as I was feeling worse and he mentioned going in for a sigmoidoscopy to see what's really happening.

My worry is that I am just flaring and it will just take a while for the prednisolone to kick in. Although I've been on 40mg almost every day for 3 weeks now. I don't really want to be an  inconvenience to the doctors.  Most part of the day I feel ok but recently I've been passing bloody brown/yellow mucus. I'm having mostly formed stools though as well, like thin long stool but sometimes it's mushy stools with ragged edges (sorry for TMI - we're all used to it 😂wink. I've got a bit of tenesmus too, and generally feel worse than I did 3 weeks ago. My doctor said I might have to go into hospital for IV steroids to kick it off, but I don't feel like I'm unwell enough to be admitted.

Do you think I should wait it out or just go in for a sigmoidoscopy and know for sure? Has anyone had experiences with oral steroids where you've still had bad symptoms after a while?

0 likes, 13 replies

13 Replies

  • kirbsj55
    kirbsj55 steph789

    Posted

    Hi, 

    I know exactly how you feel, but if theres been one thing i have learnt over my time being with UC is to never feel like i am wasting their time and just to wait, chase everything up. Honestly i would personally go in get a sigmoidoscopy and receive IV of steroids if they are offering. For me steroids didnt work for 3 months after tapering on and off but i was admitted into hospital for a week after losing too much blood, put on IV steroids and whilst was on them felt great. (Unfortunately didnt last too long) but definitely worth a try! 

    • steph789
      steph789 kirbsj55

      Posted

      Thank you for your good advice! I have my regular outpatients appointment on Thursday so I will just be honest with them and see what they say. It feels like I'm going backwards with my symptoms and there's more blood now than there was 3 weeks ago before I started on the steroids! Hope your treatment is working well now. x

  • Shal75
    Shal75 steph789

    Posted

    Hi...

    Are you using any kind of enema ? What I found was whilst using oral steroids enemas are also good to use. Either steroid enema or the Pentasa enema.

    Like you steroids didn't work after a while and I was put on infusions but that didn't work after several months so I opted for a ileostomy but everything is worth a try before it gets to that stage . X

    • steph789
      steph789 Shal75

      Posted

      I had mesalamine enemas when I first flared but I found it really difficult to hold them sad I might try them again though, I have some left over from last time! Thanks for your advice! x
    • carrie303
      carrie303 steph789

      Posted

      I cannot hold these in either.  When i first started to flare i used Pentasa suppositories and this did help at first but then took a turn for the worst.  Might be worth a try if you are not flaring too badly. x
  • carrie303
    carrie303 steph789

    Posted

    Hi Steph,

    I think you should take the hospital option.  You may think you cant justify going to hospital because you don't feel unwell enough but sometimes the IV steroids is what you need. 

    A couple of weeks ago i was waiting to see if i needed to be admitted to hospital because the steroids were not working for me, but then they came good after about 2 weeks.  I appreciate this is not always the case for people. 

    You should have a sigmoidoscopy ASAP as i always find that by the time they do it i am almost back to normal so seems pointless then.  Its one of those things that need to be done quickly i think. 

    Strange that your bloods and stools both came back normal. 

    I really hope you feel better soon.  It's just an awful feeling. 

    I've been on this dose of steroids for 5 weeks... 4 to go. :-( 

    Good luck.  Carrie x

    • steph789
      steph789 carrie303

      Posted

      Hi Carrie, thanks so much for your advice. That's true, I wish I could just go in for the daily IV steroids and not be hospitalised! I know, everything came back looking healthy. I wasn't flaring much when I took the tests, just some urgency but no blood... I'm not sure if it might be different now as my symptoms are worse. The doctor said some people's inflammation show in their blood and some don't... but it showed in my blood last time?! Very strange. Good luck with your steroid course... really hope it gets you into remission smile x

  • bustergut1
    bustergut1 steph789

    Posted

    Hi steph sorry that you're still unwell. No body wants to go into hospital- I know! look at the facts. The oral steriods don't appear to be stopping the bleeding etc. I'm assuming when you had them by IV your symptoms ceased or were controlled. The other thing they will check via blood tests is if your deficient in anything. My potassium levels were low. I also need hydrating. They won't keep you in hospital any longer than needed. I would want to get it checked out. B

    • steph789
      steph789 bustergut1

      Posted

      Hi there, thanks so much for your message and advice. You're right, the matter of fact is that I'm just not getting better. I was only diagnosed last September so it's all still a bit new but I was admitted straight after a colonoscopy and put on IV steroids which immediately made me feel better. My GI doctor said himself that some people just need IV steroids to start so that seems like it's the case. I have an appointment on Thursday but I think I will give them a phone, there's no point in dragging it out! x 

    • bustergut1
      bustergut1 steph789

      Posted

      Hi steph I would phone them for a chat at least. Then if you keep appointment Thursday they'll may have a plan in place. uc is different for every person- only thing the same is that your bowel is inflamed! Some people have uc for years & control with meds, some people have inflamed bowel that persistently  flares from onset  & doesn't respond to meds.  There's no bog standard (excuse the pun) .  You've got to do what's appropriate for Your disease. B

  • steph789
    steph789

    Posted

    Thanks everyone for your really helpful advice. Just thought I'd give an update in case it'll help anyone in the future! 

    I went to see my GI doctor at my usual outpatients appointment and went through my symptoms and the fact I was going to the toilet about 10-12 times a day. He admitted me later that day (Thursday) and put me on IV steroids. My bloods were still showing a normal CPR so they booked me in for a flexible sigmoidoscopy on the Monday. My results showed active inflammation and although it looked like it was trying to heal, the fact was that I had been on a high dose for 4 weeks now and it was still active. So I got transferred to a big city hospital where the GI surgeons are based and they approved me for biologics!! I had my first infusion of Infliximab (Remicade) two days ago and I'm feeling better already! I'm really hoping it works for me! 

    • carrie303
      carrie303 steph789

      Posted

      That’s great news. Thanks for the update steph. Hope up continue to get better quickly. xxx
  • bustergut1
    bustergut1 steph789

    Posted

    HI Steph I’m so glad you kept your appointment. I can tell from your more upbeat post that your feeling better already. It really can get you down. 🤞🏻This the answer now. X

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