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Present Flare Up Further

Posted , 6 users are following.

carrie303
carrie303

Hi All,

I think i am quite lucky compared to some of you and only seem to have a flare up about every 12 month. 

Currently on 400mg of Pentasa a day. 

Today appears to be day 1 of a flare.  Last night i did have a super hot chilli pizza (not usually a problem).  I dont particulally fell unwell, just noticing signs of a flare today.  Bleeding when going to the toilet mainly and occasional stomach cramps. 

I have had a really bad back problem for about a week (never happened before), maybe this is one of the signs? 

Can anyone reccommend anything i could do at this stage to try and prevent me going on steroids or going into full flare.  Around this time last year i was on steroids for about 16 weeks and i would really prefer for that not to happen again if i can avoid.

I do have pentasa suppositories but in the past they have not particulaly worked - maybe i did not give them enough time. 

Any help / advise is much much appreciated. 

I hate this feeling. :-( 

Thanks Carrie xx

0 likes, 10 replies

10 Replies

  • ruari1
    ruari1 carrie303

    Posted

    Hot chilli ! !  I wud say no, no, no !
    • carrie303
      carrie303 ruari1

      Posted

      Hi Ruari1,

      I know this today. Yestday and for the last 12 months I have had no problem. It's not unusual for me to have something like that when I'm well. It just came from nowhere today.... or have new symptoms been coming which I don't recognise / associate with a flare?

      I was looking for advise which could maybe prevent it getting worse if anyone has any ideas given that it's Day 1?

      Thanks Carrie x

    • ruari1
      ruari1 carrie303

      Posted

      I'm 6 years into UC and my experience is that diet is top of my list! I have had every medication going, rarely without flare up! At the moment I am on 8 weeks steroid, reducing, and have just come off aziathropine! Trying new drug this week! I follow low fibre diet and keep a diary of everything that upsets me! It's a terrible disease, so anti social, and life is hard living with it! I just keep trying everything available! I can only suggest adjusting your diet! I wish you good luck!

  • Fluffe
    Fluffe carrie303

    Posted

    Hi Carrie... 

    If you can get in to see your doctor - he might be able to do an Xray to see if that is the possible cause is being bunged up and then he/she can go from there as a possible course of action to get it back in check and failing that, become a visiter to the emergency room.. they don't like you to keep having to go there soooooooo.  You can go like the 'wind' and still be blocked up even with spicey foods...

    For me I'm only on the second flare (after the initial startup in 2015 - 14 months for the docs to get it under control) and it was caused by penicillin but when I get bunged , it seems to make it worse and only a good 'clear' out seems to subside it to get the healing started though I did have to go in steriods but it did settle quite quickly - more quicly than the first time after they started the steriods so possibly the clear out may have been all I did need and it did hurt from upper LH rib right down to awful back pains and that crampy feeling.  Problem is, I don't spike with my bloods when I'm having a flare but now I think they've got the gist of it.. fingers crossed they have when my specialist isn't about. I also slap a low dose nicotine patch on the part that really hurts and it seems to settle the pain I have... seems odd but it works really well for me - yup bit unorthodox but I have read stuff about nicotine etc....  (Gosh, I'm going to be like Nessa from that Gavin and Stacey episode when she had then slapped all over her!).. but anyhoo... Laxido is a good starting point though the hospital did mention lactulose you can get at the pharmacy too... though I did go right to the picolax on my second hospital visit to the emergency room after the GP I saw in the surgery wouldn't give it to me... 

    I just found out that they are at the moment not making the pentasa suppositories - some problem with manufacturing but I called them more of a bandaid than anything else and they changed me to a different one called Salofalk... let me tell ya.. easier to use too and it seems worked even better than the pentasa (or was a combo of that and the steriods).  

    Like you, I can eat somewhat spicey foods on rare occasions but can't tolerate wheat and am pretty much staying gluten free as I've found that causes me problems...  I do wish you well and hopefully the doc can give you something.. just don't leave it k!  That was my problem.. I tried to manage it myself as it was only my second flare!!!

    Take care

     PS I've got severe distal colitis as a result of food poisoning - azathiroprine 150 mgs, Omerazepole 40, and over the counter high dose calcium with vitamin D (can't stand the calceos) with at the moment 15mgs steriods tapering down, 

    • carrie303
      carrie303 Fluffe

      Posted

      Hi Fluffe,

      Interesting you got Colitis from food poisioning as that is how i got it. 

      I was hospitalised for 2/3 weeks from Campylabactor and they said at the time it was so bad i could end up with UC.... and i did. :-( 

      Fingers crossed the Pentasa Suppositories seems to be doing the trick at the moment and had no cleeding for 2 days.  I say my IBD Nurse for routine appointment a month or so ago and she advised me to give the suppositores 4-8 weeks before going to them for Steroids.  I did think this seemed a long time but i never really gave them a shot before.  

      I wanted to avoid as i have been told if i need steroids within 12 months of the last occasion then i have to go onto Asaprathine which i dont want to as i dont like the side effects / weekly blood tests. 

      I am weeks away from 12 months so keeping my fingers crossed i will be able to stick with the mezalaine i am on at the moment.

      I have Sa;lofalk at home.  I don't like that at all.  I prefer the Pentasa Supps. 

      Ha ha... I love your Nessa Story.  :-)

      Stay Well and thanks for your advise.

      Carrie x

    • Fluffe
      Fluffe carrie303

      Posted

      I am so glad to hear you're on the mend!!! Yup.. I was surprised when they told me about the pentassa manufacturing problems so hopefully you'll still be able to get them.  Aza has been ok for me though I have heard people with problems.  The blood tests now are about every three months or so but it was the Octassa tablets that I had major problems with.

      My food posioning was from fish on holiday but I wish I'd fought harder at the start to get something done about it when it had started but I didn't and it just kept getting worse so that's why I now drive the A&E nuts if I'm getting nowhere now! (Smile!)

      And yes.. stress is my nemisis too....  I'd hurt myself before Christmas, then got a bad infection with penicillin needed and then stressed when the penicillin started it and just when it was sortof settling stuff went wrong in the house all at once - one thing after another, I went down hill pretty quickly.  I so hate stress!!!

      Take care of yourself and I will do a happy 'stress free' dance for you that the pentassa'll do the trick!!!

      xx

  • vicki44645
    vicki44645 carrie303

    Posted

    I am 58 and I had proctitis my whole life and then last November had major pancolitis and had to go to the hospital . I was on pred and hated it ! Then my dr. Gave me usceris a steroid that only hits the bowel area . I did get bladder infections but it was better then pred! I just got a flare last week !! Back to uceris! So now 2 bad flares in one year 
    • carrie303
      carrie303 vicki44645

      Posted

      Sorry to hear this vicki, hope you are on the better side soon. 

      Pred always works for me, i just loath taking it. :-( x

  • Lauraaliceflo
    Lauraaliceflo carrie303

    Posted

    Hi Carrie

    Sorry to hear you're at the start of a flare - that sucks.  I've been lucky of late - in remission for a year and a half, previous to that had a really bad year.  I know you want to avoid steroids if you can (I've been on horribly long courses of them too), but I found that the last flare I had, because I started treating it with steroids really early, I only had to take them for 4 weeks, started on 30mg prednisolone for 5 days then decreased by 5mg every 5 days and it went away really quickly.  If not much else helps you it might be worth a go.  For info I take 3g of pentasa every day and strong probiotics religously and that seems to be keeping me pretty healthy.  Hope you're feeling better soon xx   

  • carrie303
    carrie303

    Posted

    Hi All,

    Thank you for all your comments / advise. 

    An update a week later.... I have been taking pentasa suppositories for the last week and fingers crossed the symptoms seem to have gone down alot. 

    No bleeding now for 2 days which is a massive result.  I know this doesnt work for everyone and suprised it has for me given previous experience. 

    I firmly believe this instance (as with the others) came from stress.  When something happens that really worries me i seem to get these reoccurances. 

    I am not saying i am now cured from this flare and will continue with the suppositories for another week or so but fingers crossed i am on the better side. :-) 

    Thanks again

    Carrie x

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