Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Hi, I’m New Here to IHAVEUC

Hi,
I’m new to this site, I was diagnosed with Ulcerative Colitis in November 2008 and the colitis was all the way round to my small intestine.

Approximately 1 year before this I was in a car accident which I now have a chronic rib cartilage condition, so unable to work and then I got uc.  Oh the joys of life…

I have been on various cocktails of medications: AZA, Asacol, Pentasa, Rabeprazole, Cyclosporine and now on Tioguanine which seems to be working at the moment.  I have been seen by two gastro doctors the 2nd being a Dr. Ansari who apparently has spent nearly 10 years researching the affects of certain meds on UC. He told me that if I had seen another gastro I would have had to have had surgery which I did not want.  It has been a long battle to get to this stage and I feel a different person to who I was 1 year ago. I got very low and depressed which every one near me noticed, but these last 6 months it seems I have turned a corner.  I’m finally getting physically and mentally better.

I have been on prednesolone for so long it was starting to affect my bones so i had to have a infusion to coat my bones to stop them from getting any worse.

I have been on Tioguanine for approx 1 month and I feel so much more confident going out.  The one thing i do find is that my concentration levels and memory has changed its not as good as it was before I had all these medications, the worse thing is when someone asks you a question and you know it ,but you just can`t get it out which frustrates you and the person who asked the question.

Ulcerative Colitis Medications so Far:

meds i have been on
asacol 800mg
rabeprozle 20mg
azathioprine 200mg
allopurinol 100mg
Pentasa 3000mg
prednesolone 80mg which i am still on 3 courses tapering since 08 now on 1mg
cyclosporine 600mg tapering 1st dose in hospital by iv (Not good, my vein collapsed during the 2nd dose)
tioguanine 40mg half in morning half in the evening
and some i can`t remember

 

 

Thanks for reading,

Steve aka “The Colonator”

Submitted in the COLITIS VENTING AREA




2 Responses to Hi, I’m New Here to IHAVEUC

  1. OrdinaryWorldWhereRU November 1, 2011 at 3:52 pm #

    May I ask why is the doctor using a cancer drug and anti-rejection medications?

    • ordinaryWorldWhereRu November 4, 2011 at 2:42 pm #

      Hi ,
      the meds i am on now are Tioguanine 40 mg and Pentasa 3000 mg, i am only one of 10 % of the patients on this drug so i understand.He has researched this drug for over 10 years and to be honest it has changed things for me. He also has another patient on this Tiogunaine and he does not need to attend any more visits to see him ore the IBD nurse.
      The Cyclosporine i cam off months ago.
      I hope this helps.
      Steve

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