I try to not let my illnesses take over my life. In fact, I try very hard to not let them define me as a person. I am all for the ‘being the person before the illness’ rhetoric, and if anyone else describes me solely by that ‘defining’ feature, they often get a long and very grumpy lecture on my other wonderful and much more worthy characteristics. On a personal level however, sometimes I succeed and other times I don’t, often coming out with the phrases ‘I have Crohns‘ or ‘I’m a depressive’ as an answer to seemingly anything. I often regret this mental narrative as it usually feels like I’ve given in to my illness, and subsequently let it take over.
However, this last year has been an experience in acceptance. I have realised that sometimes, you must be that person who stands and says ‘no, actually, I can’t do that because I have this‘. It’s not easy, but let me tell you the story of how I came to learn. Continue reading
I was diagnosed with Polycystic Ovarian Syndrome about 9 months ago. Officially. Funnily enough, an ultrasound nurse told me this when I was 14, and yet my doctors at the time disregarded this and basically told me to come back when I wanted to have children. It all started when I was 12. I went through puberty even though I was told that my Crohns may interfere. I had my first period (bloody hell literally) and I remember being super excited (even though I was in stupid pain). I remember getting the obligatory joke(?) text from my friend saying ‘WOOHOO you’re officially a woman!’, and I remember being somewhat proud of the whole debacle. I wasn’t worried when I didn’t have one the next month, or the month after that, because it’s often stressed to you that you’re never regular at the beginning.
Two years later I admitted to my mum that I hadn’t had a period since. I asked if it was normal. She booked me an appointment at the GPs. We went together and explained what had happened and they originally told me that some people don’t start to late. I didn’t pique their interest until I told them I had started two years ago, and just never…carried on. Continue reading
I have flare ups reasonably regularly, but from the outside you can’t really tell. Unless you’re privy to my bathroom routine, have super hearing for the grumblings of my stomach, and document how much I have eaten that day, then from the outside I don’t look ill. And that’s why my illness is invisible. There are many invisible illnesses out there, and it basically means you cannot tell someone has a disease or disorder just by looking at them; they could look entirely ‘normal’ and healthy externally, but internally, their body and/or mind is waging war on itself. Internally, they may be very sick indeed. My illnesses are not obvious to those around me, and so it can make certain situations sometimes difficult to deal with.
Food can sometimes make me feel awkward.
Like a normal person, I have to eat things. Unlike a normal person, I have IBD. Continue reading
Welcome to part 3. Sorry for the wait, I’ve been training for my new job and thus not been around enough, or awake enough, to do another post. But in these 5 minutes of quiet, let’s carry on this story. So in this one, I’m going to talk about where I am now with my illness, and from then you’re up to speed!
Also, this is quite an apt time as we are slap bang in the middle of Crohns and Colitis Awareness Week here in the UK (1st-7th December), so here is me raising awareness of what it’s been like living with Greg!
Since my diagnosis and NG tube 11 years ago, Greg has never been that serious since. Thankfully Pentasa seemed to do the job, and helped to keep him in check. Don’t get me wrong, I had my ups and downs and it took a while Continue reading
Welcome to part 2. Like I said before, this second bit is going to be a bit more personal. This part is about when I was first diagnosed, and my initial experience (again, this ended up being split up as it got too long for any sensible person to want to read). I’ll try to give you an idea of what that’s like. This is my personal experience, and it is infinitely different for everyone suffering with the disease, just like for anything else. Sometimes things will be similar, but just like in every day life, let’s not paint everyone with the same brush.
Right then, to get super personal with me about this, I’ll tell you his name. My indeterminate colitis is called Greg. That’s how I’ll refer to him from now on. I call him that, my family call him that, and even my partner has always referred to him as Greg. The story behind it is that I watched a documentary of a little girl with cancer who named her tumours as that made them less scary. I latched onto this idea and the first name that popped into my head was Greg, and so from that moment on, he was Greg. Continue reading
Originally, this blog was going to be solely based on raising awareness about crohns and indeterminate colitis, through blunt stories, a little bit of swearing, and some cynical insights. It was an idea suggested by my counsellor at the time, to create a place for me to get my thoughts out about something I would be living with for the rest of my life, raise awareness of a somewhat less sexy disease, and perhaps create a space for others out there to come together, either with the disease, or those wanting to know more.
I decided to split this up into two sections as it started to get very long. ‘Part 1’ is the biology bit, and ‘Part 2’ will be more of a personal account of my experience. Let the biology lesson begin, are you sitting comfortably?
As I have previously mentioned, I am part of the ‘indeterminate colitis’ label, edging towards ‘crohns’. Simply, I am the owner of a gastrointestinal system that literally hates itself. Unintentionally. Continue reading