Today marks the end of Crohn’s and Coilitis awareness week, it is also just over 1 year since I left out of hospital after my initial diagnosis, and severe acute flare up, of Ulcerative Colitis.
So I figured I should do a post of things i’ve encountered in that year, in trying to deal with recovery and treatment of the illness.
I covered the first 6 months in my previous post so I won’t rehash too much.
After the initial 6 months of getting back on my feet, and going back to work full time, you face a different set of challenges – because people just assume you are better, because you look better, and are back in your normal routine, it is a lifelong invisible illness.
The reality is that it takes all your effort to be back to normal, it’s all you can manage – and going to work takes all your energy so you spend the rest of your time zapped at home. And if you can’t go out, then you don’t see anyone.
There were 6 weeks across April and May where the only people I saw outside of work hours were my Mum and Dad, and that’s one of the main non medical side effects of this illness, it is isolating.
I’d feel well enough that I want to be sociable and see my friends, but not really up to travelling, or wary of, once I went out, not feeling great, and then either trying to push through it, or having to cut it short and the challenge of getting home again.
Another contributor to that is you thinking you are better than you are. You want to believe you are well and up for leaving the house, then being brought back down to earth when you try to do something and it’s obvious that you’re not.
So instead you stay at home.
Being a lot more cautious is another part of the illness that becomes ingrained in the way you live your life.
You are cautious about what you eat, when you eat, what you drink, where you go, being around anyone with germs, and especially any slight pain or resurfacing of any symptoms.
I’m being treated with immunosuppressant drugs, so any slight sniff, cough or sore throat causes a slight panic, I am now a religious carrier of anti-bac.
Having regular blood tests to keep an eye on my body can be tiresome, and I’m sure my arms would like a break, but they’ve picked up a couple of occasions when my liver function was off.
On another occasion the tests showed I had become vitamin D deficient, a side effect after increasing the dosage on my treatment – which means adding another 2 tablets a day to the ever increasing pile!
Low immune system also means illnesses hit me, hard.
When everyone else was passing a ‘summer cold’ round work and having a day or two off, I felt like I had flu. I couldn’t get out of bed for a week, had to have several extra blood tests due to the nature of my treatment, and I didn’t feel fully better for 5 weeks.
Obviously having to cancel plans to see friends because you’re not well makes you feel worse, because it’s not just you, you’re letting them down, and in turn this adds to the isolated feeling you were trying to overcome by making the plans.
It’s been odd cos in some ways it seems like a really long year – lots has happened, and as a person i’ve changed in many ways. But in some ways it feels like yesterday, cos I can remember so clearly everything that happened and how I felt.
Hopefully I can get another clear year under my belt, with as little change as possible now I’m used to my treatment dosages and routines.
Another year will also help with things like the cost of my travel insurance – which is higher if your condition has hospitalised you within 2 years of any travelling.
Crohn’s and Colitis UK
Crohn’s and Colitis UK are a charity doing amazing things making people more aware of IBD, especially their ‘Not Every Disability Is Visible’ campaign. Their website and twitter are full of useful information about the diseases, and they produce great infographics like the one below.