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  haley
  Healthshare Member

  Hi Jane, I have also just been diagnosed with ulcerative colitis and finding it all hard to take in. My doctor has just told me to stick to a low fibre diet while I'm having a flare up but other than that just see what effects you as everyone is different.
  
  I feel for you and your family, I'm scared too as you just don't know what is going to happen. I have a 4 month old and I just want to be with him and not in hospital. Reply to this post  |  Report
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    jovi999
    Healthshare Member

    Hi Haley
    
    
    
    I just had another stint in hospital - almost two weeks. The prednisone (50 mg) was not stopping the bleeding but what actually brought me back to the hospital was I had chest pains over two nights (obviously thought I was having a heart attack or something) and it was pericarditis, which is an inflammation on the chest wall. I then found out that this goes hand in hand with the ulcerative colitis. It would have been nice to know this. I also developed pneumonia and even had a little blood clot in my lung (which thankfully cleared by itself). I was pumped with 400mg of steroids daily while in hospital (they first did it for 24 hours and then changed it to oral 60 mg. But after discovering my pneumonia etc, they changed it back to the IV steroids 400 mg (4 times daily 100mg). I am currently on 70mg steroids orally until I see my gastro doc on Thursday. What I cant believe is that I was a perfectly healthy person - working full time and going to the gym 3 times a week and to be suddenly brought down so hard, I could not believe. I guess it can happen to anyone unfortunately, no one is immune from anything. Depending on what my stools are like between now and when I see the doc, will depend on if he changes me to the infliximab (IV treatment - I call it chemo, but its not). The problem with this treatment is it brings your immune system down even further and as you can imagine all the other complications that this may bring. But above all I am hoping for a change in the better. I feel for you as you have a four month old. All children need their mums. I hope you are feeling better - let me know how you are so we can compare notes. I still have diarrhea at the moment and have lost around 7 kgs all up since being diagnosed, but my biggest drop was since last Thursday, which was about 3.5kg. I cant work out if I am still bleeding as the diarrhea is like orange coloured, so I guess there must be some blood still there but not as obvious. Take care and I look forward to hearing from you. Reply to this post  |  Report
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  Crohns & Colitis Australia
  Health Consumer Organisation

  For more than 25 years, Crohn’s & Colitis Australia™ (formerly the Australian Crohn’s and Colitis Association) has been making life more liveable for more than ... View profile

  Hello Jane
  
  
  
  Steroids are fast acting and very effective so within a few days most people see an improvement in their symptoms (e.g. bleeding, any abdominal pain & diarrhoea will lessen and then settle), however it may take longer in some individuals particularly if the colitis is extensive and involves the whole large bowel.  It’s also usually at its worst when first diagnosed, but with treatment and ongoing supervision by your gastroenterologist, you will hopefully, like most people with ulcerative colitis, respond very well to the medication.     You do not need to avoid lactose unless you are lactose intolerant – a breath test can be done to check for that (ask your GP).  Reply to this post  |  Report
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