Because I’m(Catherine) trying not to let UC define my life, I’ll start with some other things about me. I live in Canberra, Australia with my husband and a foundling kitten. I’m a lawyer, and my passions in life are karate and poker. I teach karate (3 times a week) and train 1 or 2 times a week with a couple of other people or by myself. I try to ride my bike to work fairly often (not so easy during flares) and go the gym as well.
I’ve been healthy all my life (28 years) but was a bit prone to food poisoning as a kid.
My UC started June last year – I remember the day I realised there was problem because my karate instructor was visiting and my stomach had not stopped hurting for 2 days. I got a diagnosis about 5 months later.
I’m currently on mesalamine (3 x 1.5g granules a day) and azotheoprine (125mg a day). I’m on SCD and I take fish oil and folate (to make up for the lack of grains).
I have been on prednisone (doses from 75mg to 12.5mg and back again), mesalamine enemas and foam, and had 3 doses of inflixmab (remicade).
Before starting the pred the first time, I lost 12kg from V and D and just not eating. I ended up in hospital after fainting on an escalator at work (and still have the scars on my back).
The infliximab finally got everything under control and I successfully weaned off the pred on my 4th attempt.
I had my first flare since my ulcerative colitis got under control a couple of weeks ago. It was nothing big and came on gradually, some pain, some blood, more frequent BMs.
I’d been on SCD for 6 months (almost to the day) and set about looking at whether I should be cutting out some more advanced foods. I discovered more info on the intro diet than I had come across before, and decided to start the whole thing again from scratch. The first time I started, I was on pred which worked like a dream, so I could have eaten anything and wouldn’t have had symptoms and rushed the whole intro bit. This time through, I’m looking forward to the prospect of getting reactions, so I know if there are things I should stay away from.
Anyway, in the process of looking for more SCD info, I found this site. I started reading a few stories and burt into tears. I hadn’t realised until then how much this pretty small flare had been getting to me. It’s really good to know you are not alone. My family care and are supportive but they don’t really understand.
My mum just seems to want to blame herself (‘dad was always worried about how much milk I let you drink when you were 2’, ‘maybe I let you have too much sugar’) which really gets to me. I feel like I have to hide how bad it is from her, so that she won’t blame herself.
Work has been great – only in the public service can you take 5 weeks of sick leave and no-one bats an eyelid. Apart from asking for my work to be reallocated and the occasional call or email to see how I was doing, I heard nothing. Bliss.
3 days on the SCD intro diet and I’m feeling pretty good, exhausted but pain free. So really I don’t have much to complain about right now. But it’s nice to know that there is somewhere to go to offload without doing it at someone. I know I’ve been pretty awful to people at times (a nurse, my husband, my mum) and it happens when I’ve been bottling it up for a while.
I guess I’m feeling pretty positive despite the recent setback – this wasn’t nearly as much of a whinge as I expected it to be. (Hence the title of this post – for those non-Simpsons freaks out there “Yes! ‘Crisitunity!'” is Homer’s response when Lisa informs him that the Chinese use “the same word for ‘crisis’ as they do for ‘opportunity.’)
and here a link to fish oil
(Thanks for this awesome story Catherine in Australia!)