Diagnosed in 2007, from the UK, 28. I was in the first year of University in 2006 when I started with abdominal pains and passing blood/mucus. Did the typically male thing (I think it’s just males who are dumb, right?) and ignored it for a stupidly long time. I continued drinking in abundance, eating take away meals and drank multiple creamy coffees almost daily to recover/wake up from the previous night’s drinking. So, as you can imagine, my symptoms grew gradually worse/more impressive – however you want to look at it! :-)
I didn’t tell anyone what was happening and kept it all to myself, embarrassed about what people would think, I suppose. Then one day I had a nice milky, sugary, porridge for breakfast and it wasn’t long before I was in agony with my symptoms, I’m talking fetal position in my bed with cramps, between bouts of painful restroom sessions. It was like I had consumed a bowl of lava! Anyway, I went to the hospital the next day and was sent for the all the usual tests. I was then officially diagnosed with UC.
Jed’s Colitis Symptoms:
Currently experiencing my longest flare since I was diagnosed back in 2007. ‘The usual’ started in the second week of March and I thought it would just get better on its own as I had just moved cities and started a new job (also include in that a change in diet/getting used to new foods), so I ignored it for 6 weeks hoping it would get better, before I realized that I should probably go to the doctor and request some stronger medication. He put me on steroids, which improved the symptoms slightly, but over here they seem to reduce the dose pretty quickly (just kept me on them for 1 month). So, still experiencing moderate symptoms and decided it was time to get myself an online outlet, henceforth…
Jed’s UC Story:
I ignored my UC for a very long time and thought that the medication was THE solution, at first. In all honesty, it took me a few years to really accept that I had a condition that was going to require a lifestyle change. Truly – I still don’t do half the things that I should and that is no doubt why I am sat here typing this stuff out in a coffee shop today.
Living in South Korea, a country where drinking and spicy food are a solid part of being social, is a little awkward for me sometimes. Being an English conversation facilitator, I have to squirm around kind offers of ‘dinner’ or ‘drinks’ from my students. I have lost interest in drinking these days because of the after effects it has and dinner generally goes hand in hand with drinking. Dinner also usually includes Koreans trying to make me eat spicy foods, just kindness of course, but so awkward when you have to adamantly refuse – I’m sure you can imagine. So these days, I just suggest a tea in a coffee shop at a later date (when I’d feel my symptoms are under control and I don’t have to make continued trips to the bathroom) and I just say I have plans or that I am busy if they insist.
That’s the biggest change I suppose, as I used to be a fairly social person and I also enjoyed a drink or two. I don’t mind the fact that I can’t do the drinks anymore, it just takes a little getting used to I suppose.
In a flare, the fact that I (we) have to be near a toilet is obviously very limiting to us all. That is something that also took a little getting used to for me personally. I caught myself just staying in my apartment and wasting my days off doing nothing because of the fear of being ‘caught out’ with a ‘no-toilet-situation’ in public, or indeed a ‘full-cubicles’ situation as well, almost worse – so close, yet so far! The sense of urgency compounded by the sense of fear is something that I like to avoid as much as is humanly possible. Again, it’s something I have tried, tested and learned to cope with.
Here in South Korea the doctors (or at least the one I’m currently seeing) don’t like the idea of putting someone on steroids for longer than a month, due to ‘steroid dependency’ – is that the norm?
I also requested to be put on immunosuppressants because I don’t want it to become a problem at my new job – he asked me to think about it. So; Has anyone used these? Were they effective? Would you recommend them for a short while just to get back on track? Or would you try a diet change before going so extreme with meds?
I know the latter questions depend on how bad the symptoms are and how much trouble the symptoms are causing at work etc, but I’m mainly curious about people’s experiences with immunosuppressants and the possible side effects I may encounter.
I also cannot have diary products, especially milk, I have to avoid coke in a flare, but I’m pretty sure that usually it’s okay. I’ve been reading a lot over these past couple of days and I’m now trying yogurt out, so we’ll see how that goes.
Looking forward to getting into the chat forums and hopefully learning some new things that will help me gain more control over my condition and therefore, my life. Chat soon!
Where I’d Like to be in 1 year: