When I was told that ulcerative colitis was a lifelong condition that could be “managed”, I had no real idea what the specialists meant. And specialists, I have come to realise, are very very short on information. Admittedly the NHS is stretched beyond belief, and my life is not in danger, but I’ve seen four different specialists now and many of the basics have not been explained to me. I’ve had to get them from that fount of all knowledge – the internet.
And the way my condition responds to my actions and triggers is different from everyone else’s. There are very few generalities with colitis, and the ones that can be quoted with confidence are so broad they’re pretty much useless in practice. But I have noticed, over the last two years, some basic principles. I’m writing them down more as note to me than anything else – since everyone is different, I doubt it will be of any use to anyone else with colitis.
So – in no particular order:
If I take my meds properly, it tends to be better. Well duh. But in my current lifestyle of megacommuting, it’s tough to remember to take all my meds with me all the time. Or my toothbrush, makeup and deodorant, come to that. Buy when I get there is a frequent occurrence…
My actual digestive system doesn’t show any symptoms until my other symptoms are actually quite bad. Which is weird. I get arthritis in my fingers and feet, ulcers in my mouth, runny nose, sore throat and weepy eyes long before my appetite goes wafty, I start feeling sick or my tummy starts to hurt. (Not my actual stomach of course, but I guess my bowel. Difficult to tell since it’s all so deep inside). Colitis is just the name for the main usual symptom of this syndrome, which seems to be actually some kind of breakdown of certain mucous membranes, thus the eyes, nose, mouth problems.
When I’m having a minor flareup, I get exhausted. Sleepy, lead-bum, lacking in motivation, unable to get out of bed knackered. I have to force myself to put one foot in front of the other. I always thought that was something to do with my depression, but now I’m not so sure – today, I’m having an exhausted day, physically, but I’m in a fairly good, happy, contented, strong mood. Even though Wales are currently losing to England rather embarrassingly in the 6 Nations Rugby…
When I’m having a flareup, my diet goes out the window. I feel sick as soon as I get hungry, but wander round the shops or cupboard with no clue at all of what I want to eat. I often end up eating bread or toast, which makes me put weight on really quickly. I’m the size of a small house right now and all of the weight I lost on the Cambridge Diet has gone back on. Luckily for me, the four years of sporadically listening to Paul McKenna telling me he can Make Me Thin have worked – I doubt I’ll ever be thin, but I’m convinced I’m beautiful anyway. Or at least that I scrub up quite nicely for a middle-aged fat bird:-)
I get headaches too. I think it’s possible that these are to do with my sinuses playing up, and that they play up because of the colitis. That’s a vicious circle. All painkillers are contraindicated for people with inflammatory bowel diseases, but I can’t cope with the headaches and go to work, so I take the painkillers and then the other bits of my colitis play up.
A nice long walk in the fresh air usually does me a lot of good – but I find it so very hard to get motivated to do that when I’m feeling exhausted.
None of this affects my brain or my ability to work. I can happily sit in front of a laptop working on powerpoint no matter how bad the flareup is. Well, happy and powerpoint don’t really go together, but I don’t get any more frustrated with it than usual, and seem to be able to produce decent work in good time.
Stress and lack of sleep have a bad effect on the colitis. So – no doubt about it, I’m in the wrong job. Commuting nearly 1000 miles a week, often on an overnight bus, is not doing me any favours except for the money. And the job satisfaction. If I could have this job within easy driving distance of my home, that would be ideal. One of the benefits of being a contractor though is that the end of the current contract is always within sight. The benefits of this current role definitely outweigh the drawbacks, but I’ll put down the location and commute to ‘seemed like a good idea at the time’…
It’s not so much management then, as juggling. Or keeping plates spinning. Being selfish in a way, to ensure that I do the necessary maintenance work on myself, and accepting that if I don’t, or if my body decides to flare up anyway, I will become exhausted and have a certain amount of pain.
And happily, chocolate has no detrimental effect whatsoever on my colitis. I have no evidence so far that it’s actually curative, but I’m working on it:-)