An invisible illness: how other people react

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

Let’s talk Indeterminate Colitis: Now [Part 3]

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

Let’s talk Indeterminate Colitis: Diagnosis [Part 2]

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

Let’s talk Indeterminate Colitis: What is it? [Part 1]

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