Some advice please

Posted , 8 users are following.

Good morning all, I have been undergoing investigation for the last 7 months as I had lost a considerable amount of weight and 7 inches of my waist, included has been the constant fatigue and also pain in the adomen and also lots of blood and muscus loss with constant visit to the loo. well last week we finally got to a diagnosis that I have UC so far they have me taking 4000 mg of Pentasa a day, then on Thursday I ended up back in hospital again as the pain had got worse and the blood and mucus loss had become a lot more frequent with a lot more loss, they investgated me and decided to put me on 40mg of Prednisolone. they had me take 8 on the night and then 8 each morning, i was pleased when i got up the first morning and blood had stopped and no pain, how ever 3 days later the pain and blood has come back, they have told me to go back if this happens however i dont want to just in case this is a relapse and that if i continue will it help or should i go back like they say

many thanks for lisening

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17 Replies

  • Posted

    Hi johnc7524 please go back! If you're poorly over the weekend then that's what A&E is for! You seemed to respond to the steroids in as much as your symptons seemed to settle for a while. It may be you need a stronger dosage & that's what they need to know. Get the blood loss etc gone & then the anti inflammatories will calm the bowel. They'll probably gradually reduce your steroids over time to see whether your condition can be held ok without them. Don't leave the job half done. Keep drinking plenty water & eat healthily. You May put on a little weight with the steroids but you've lost so much don't worry about that. Good luck let us all know how you get on.
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    • Posted

      Hi bustergut1 thanks for your reply, just getting fed up with the backwards and forwards to hospitals and doctors i do appreciate the work they do and help but gets me down, as i just want to get out further and longer from my front door, i have just taken todays dose so will see if that calms it down if not then i will go in and let you know

      many thanks

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  • Posted

    John,

    Definitely go back. For me diet has played a huge part in my recovery, even though doctors say diet has nothing to do with UC I found the opposite to be true. Steroids will do damage as well as good, I found it very hard when I was on them.

    Check out scd diet and FODMAP diets, it different for everyone and diet may do nothing for you, but sounds like me at the time you have nothing to lose. Get dietitian / doctors advice first though, especially if you have lost weight cause it can be dangerous.

    I wish you luck and recovery.

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  • Posted

    You need to follow the advice of the specialists John.  The purpose of the prednisone is to reduce the inflammation which is raging in your colon.   It may be that they try you on something else if your symptoms seem to show an adverse reaction to prednisone. But you need to let the specialists know what's happening.  It's just not worth taking risks with such a serious condition.

    Take care

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  • Posted

    John mate,

    It is possible to get septic shock from the bleeding. This is a serious condition. It can happen fast. Septic shock causes organs to fail. Death is not uncommon.

    I am one of the lucky ones. I survived septic shock in January I still feel ill now.

    So I know the feeling of having to go to hospital but you must.

    Go now.

    I will pray for you

    Bob.

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    • Posted

      Hi Bob, thanks for putting some clarity on this I ofcourse will go and see them down A & E as i am getting some pain and even though the blood has eased up due to resting i am causing my family some concern

      many thanks

      John

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    • Posted

      Septic shock has pole axed me big time. I first realised I was ill when I got shakes that hurt and I couldn't stop.

      I then because of dementia started threatening hospital staff. I took a swing at a doctor.

      So they put me in a coma to control me.

      The shock causes dementia.

      My wife saved my life by getting medical help fast.

      I don't want to overstate the dangers but getting down to A and E is best.

      You need a hug and support.

      Regards

      Bob.

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  • Posted

    Hi John sorry to hear you're so poorly, I'm just getting over the worst flare I've had since being diagnosed- ended up in hospital for 2 weeks, the doc had tried me on prednisolone week before I was admitted but it was too far gone so when I got to hosp I was on hydracortisone for first 6 days then changed to 40mg prednisolone and finally got on the mend 😊 now on reducing dose and doing well, so as with everyone else I'd advise going back. Previous to this flare I got into remission on Diet for a good 8 months feeling great - only ended up with a flare due to picking up a rotten stomach bug which really messed me up! Diet sounds a bit impossible at first but if you're struggling and not getting relief with the drugs it's worth a shot. Wish u a speedy recovery and feel better soon xx
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    • Posted

      Hi Laura

      many thanks for your kind words, I have only been on these steroids a few days and was so excited that they appeared to work after i took the first 40mg and yet today I had a flareup and this panic me but will see how it progresses

      Many thanks

      John

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    • Posted

      I am very careful with what I eat. I don't eat take aways. Everything is cooked well. I graze during the day till 6pm then eat nothing till 11 am. I boil dish clothes etc.

      I am maintaining my weight at 14 stone 5ft 11 inchez male. This gives me room to manunover. I can safely lose a stone by reducing food if I get a flare up of pain and cramps. I dropped to 10 stone once and felt so tired

      Good luck bob

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  • Posted

    I would like to personally thank everyone for the kind words and advice, I am watching how things progressed as the pain has subsided since starting this discussion. I would also like to say that it is really great to speak to people who have or finding out that they are in the same position as i and I thank you for taking the time in reading this and responding to my question I hope all have a nice sunday

    Best wishes

    john

     

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    • Posted

      Hi John, I have written lots as my son was very ill with UC, I have written about what went on under UC in the forums. In retrospect we would have been better to go to a more specialist hospital from the beginning as this disease tends to have a picture of flares and recovery so as soon as you think you have it beaten and go on a reducing doseage it rears up again. I would advise a specialist hosp such as St Marks London or John Radcliffe Oxford. I bet if you asked your GP where he would go if he had IBD he would go to these.

      My son had a huge flare up and was told he would need to come back in to hosp to go on IV drugs if no better in 14 days and he made it to 10 but went into A&E with his body shutting down and v v ill. He went down to 8 st 10lbs, at your height, it was a difficult time. Dont take risks, listen to your body and do take extra vitamins as your body is not absorbing properly.

      Also watch out for DVT as people with UC and Crohns are more prone to this, we found out the hard way.

      Take care.

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    • Posted

      Hi Sheila

      Many thanks for your message, i feel for you with your son. I have severe flare ups, Mucus dark sticky motions and blood loss, and the feeling tired etc. this had been going on for 7 months and they investigated me for possible bowel cancer and found that I have UC.

      They have placed me on 4 Grams of Pentasa and I have been up and down on steriods. started at 30mg then 40 mg and then 60mg then back to 40mg and this has been like this for some weeks i think this is the part that pulls me down and it is frustrating, however I have been into hospital every week due to pain and blood loss and all that happens is they increase.

      I am hoping to see consultant this week and are looking into dietry ways.

      I will keep every one advised on the hospital visit

      once again many thanks and hope things get better for your Lad

      John

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