Matt from Christchurch New Z-land:
I have been diagnosed with Ulcerative Colitis (pancolitis) since May 2009 but had symptoms before that for about a year or so on and off. Just started remicade.
Some more about me:
From New Zealand (which is that odd looking set of Islands east of Australia). Into sports, movies, books, music etc. etc.
I just thought I would post an update on what happened to me with my treatment and give a positive story that hopefully gives a few people hope.
I am now 26 and diagnosed at 22.
I posted previously about my situation here: https://ihaveuc.com/remicade-and-questions-about-my-treatment-so-far/ but to those who haven’t read it I will give a summary:
I got sick in 2009, put on steroids for a couple months followed with Pentasa which got me into clinical remission (no symptoms but still inflammation), flared again in mid- 2010 and didn’t get better despite everything I tried. A long hard few years, especially the last one, I couldn’t work, couldn’t take care of myself had to move back home (which is all kinds of humiliating) and social life…what was that? Basically couldn’t leave the house in the last year as they tried different medications. I was put on Remicade in mid December 2012 along with Azathioprine and in mid March something amazing happened…I actually started getting better. Looking back I had given up that that would happen or would ever happen.
The following month the Azathioprine started kicking in which further improved my symptoms. I have basically just a bit of a gassy, gurgling gut at the moment which is slowly improving but the inflammation is down to normal levels (if the higher end of normal) and the gut is healing slowly, (which is too be expected since its been scarred and inflamed since 2009) but the best part is the fact that I now only have to go to the toilet on average around twice a day, maximum is about three unless I do something stupid like eat chocolate (rips through me for some odd reason). Without a doubt this has been the healthiest winter I have had since 2008 and the bes t I have been since June 2010, before I relapsed. I imagine there will be the odd bump in the road ahead but as it is heading into spring down here in New Zealand I expect I will only continue to improve so not to toot my own horn here but yay for me!!!
(Sorry if that last part was undignified but honestly with UC didn’t we leave dignity behind a long time ago?!)
Not surprisingly I have been in quite an ecstatic mood the past couple months! I have now got a job, moved out again, am starting to rebuild some sort of social life and for the first time in years am actually starting to seriously consider my future, which is hard, but considering the lack of one I had a few months ago? Bring it on.
I realise I won’t be able to be on Remicade forever, but considering the amount of drugs currently hitting and expected to hit the market in the next decade my doctor and I have some confidence I will be okay.
So I hope that gives some hope to some people suffering out there, I know it might feel like your never going to get better and there is nothing in your future except horrible drugs and the toilet…but maybe, just maybe, you will.
On an related subject I just want to know how people deal with friends & family who have let you down while you have been sick. I have lost so many friends while I have been ill, some were expected as they weren’t close but some were almost family and left me alone in the hardest year of my life, how do you deal with that? Do you forgive and put it off to people not understanding and having their own lives to deal with? Or do you write them off and move on without them? What about family members?
Medications I be a doing:
Azathioprine, Remicade, Pentasa.
written by Matt
submitted in the colitis venting area