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. Now I imagine to a lot of people it’s going to be very weird that I refer to a part of my body with a name, male pronouns (I’m female after all), and with a sense that he is very much someone of his volition. I’m not crazy I promise. If anything, it’s a way for me to talk about my illness to close friends and family without announcing it to the rest of the public, a code word if you will. If I’m in pain and uncomfortable (or looking to find the nearest loo), all I have to say is ‘Greg’, and my family will know. On another level, it is exactly as the little girl in the documentary described – I don’t find him scary anymore, and if anything, I’ve come to understand Greg as something who isn’t trying to hurt me on purpose. He works within me and is just a little sensitive to certain things, and as his keeper, I have to try and make his job as easy as possible; it’s a love-hate relationship. So yes, meet Greg.

Moving on, I was first diagnosed at the bonny age of 10 years old. According to my mum, I’d always been a child with ‘stomach problems’, and I’d go through phases where I would seemingly live in the bathroom. Other than that though, there weren’t any indications. But then, I turned 9. I don’t know what precisely triggered it, but it seems like my digestive system decided that that was the time that it didn’t like itself or anything else. I stopped being able to eat without having to run to the loo half an hour later. I couldn’t sleep because I would be up every other hour to go to the bathroom. I had no control over my own bowel, and I’m going to confide that there were a few too many times where I just did not make it to the nearest bathroom quick enough. After repeatedly going to the doctors and them telling me it was a stomach bug, my mum finally demanded something to be done when I could not even walk down the road without collapsing in exhaustion and my weight had become dangerously low. I was (begrudgingly) referred to a various paediatricians who tested my for many things including coeliac disease and lactose intolerance. When all these came back negative, I was booked for a endoscopy and colonoscopy as a last resort (camera down the throat, and up the butt), and was eventually diagnosed with indeterminate colitis. We breathed a sign of relief.

What happened next, I am still making up for. Now, I love my food. I love it a lot. But I couldn’t eat. My intestine had exhausted itself, and wasn’t absorbing anything. The only option was milkshakes. What’s so bad about that you ask? Milkshakes are delicious. Not these. Think the consistency of a thick protein shake, and then make it taste like chalk and regret. And that was my food source for the next 6 weeks. I tried, trust me, I did, but after about 2 days, I hands-down refused to go near the stuff; I basically made myself sicker with the stress of having to drink it. So, the next day, the district nurse was round my house and my only option was having a NG feed inserted. ‘NG’ stands for ‘Nasogastric’ and basically means you have a tube inserted via your nose into your stomach, and you are fed externally through that.  Now, if you’ve ever pushed anything too far up your nose, you know that it is bloody painful. If not, take my word for it, it hurts. A lot. So yes, I cried the whole time it was happening, and afterwards I locked myself into my room and blamed my mum for my entire existence (which is half true if you think about it).
Anyway, for the next 5 weeks, I was fed this milkshake through this tube. To be honest, it felt pretty weird at first (especially if the mixture was cold) as I could feel it run down the back of my throat and yet there was no other ‘wet’ feeling, but I soon got used to it and it became the norm and I didn’t care. My friends weren’t bothered and stood up for me on a number of occasions when other people were a little too opinionated. Don’t get me wrong, as a typical 10 year old, I did get upset about it, and any tantrum I threw usually came back to the fact that I hated my mum for ever allowing this to happen to me (she doesn’t hold it against me, thank god). After 5 weeks of watching everyone else continue to eat and passively hating on everyone for it, I ended up accidentally blocking my own tube. After every ‘feed’, the tube had to be flushed out with water (a process I got quite adept at, especially in the half asleep stage….or so I thought), and one night, the tube leaked. I got up, cleaned everything (my hair was stuck together with milkshake), and then went back to sleep. The next morning I went to do my morning feed…nothing happened. Nothing went through. I couldn’t eat. We didn’t know what had happened, because as far as we were aware, the tube was fine. Again, the district nurse came and also couldn’t work it out, so she told me the only option was pulling it out and putting another in. Much like a plaster, she took the end and gave a quick yank backwards and then suddenly there she was dangling this yellow tube in front of me. She unblocked it and prepared to insert another one back up my nose. Oh no. I was not having that, not at all. I cried and screamed and refused, and well, you can’t force someone to have something done to them they don’t want.

I supposedly had one week left, but the doctors gave in and told us that it should be fine. I had my first solid food in what had seemed like forever: a scrambled egg sandwich. Now, to many of you out there, that probably sounds bland and soggy but that was the entire point. If you hadn’t done something in a while, imagine how rusty your skills would be when you came to do it again – well, my intestine was exactly the same. Bland and soggy was perfect for Greg, and to be honest, it was perfect for my taste buds too. It was like some sort of cooking god had personally come down and cooked it for me and handed it to me on a golden platter and said ‘here, this is my own very special secret recipe’. Who cares that my mum had rustled it up in the kitchen, to me it was heaven. Giving Greg a rest was apparently the trick and my digestion returned back to ‘normal’, or at least ‘normal’ for me. There was always a threat of steroid intervention, but thankfully Pentasa was (and has almost been) enough to keep Greg in check.

I’d started highschool by this point, and honestly, that introduced a whole new load of hurdles for someone with an overactive bowel. Part 3 will be then until now, and as much has been the same for the most part, it won’t be so much of a personal history lesson. I felt the need to write my diagnosis as a separate part as it is such a huge part of someone’s life whatever that person is being diagnosed with. One minute you’re perfectly fine, and then the next minute your health has hit rock bottom and you suddenly have a lifelong disease that no one really knows how to talk about. It was difficult for me at 10 as I understood nothing of what was being said at me, but it is also terrifying for anyone in their teens, or twenties, or thirties etc. You are suddenly forced into this absolute unknown, and as it’s all based internally (until it comes flooding out of you that is), you look absolutely fine on the outside and yet are apparently destroying yourself on the inside. You suddenly have to deal with things that you were never aware of before, whether that’s organising medication, hospital tests, or even just the stigma of having an ‘invisible illness’ (I have so much to say on this particular topic that I will save it for another time). But everything changes. You learn to live with it, but everything is different and quite probably will never go back to how it was. So never take a diagnosis lightly, because heaven knows, the person who has just been given it, are not. Understand that their world has just shifted from something familiar into something unknown. And for something like IBD, it’s not sexy, it’s not clean, and it’s all to do with an area of the body that everyone pretends doesn’t fucking exist (despite the fact we all digest and thus, poop). You can feel very much like a walking taboo.

I didn’t think my diagnosis was huge at the time; I was ten and I didn’t understand. But now, I realise the impact it had on me and how it subsequently shaped my life (obviously). Whenever you had a diagnosis, whether it was 11 years ago like me or even just last week, do not distress over how you feel. It is entirely normal, from relief to fear to absolute what-the-fuck-do-I-do-now. You are not alone. You’d be surprised by how many people are out there experiencing the same thing as you. And if you ever do feel alone, then always know that Greg and I are here to try to change that.

Until next time, thank you.


4 thoughts on “Let’s talk Indeterminate Colitis: Diagnosis [Part 2]

  1. wayover50 November 27, 2016 / 8:45 am

    May sound like a stupid question, but does being in a liquid diet increase the diarrhoea?

    Hope you’re going through a better patch with Greg at the moment 🙂


    • jazzc36 November 27, 2016 / 12:30 pm

      No questions are stupid, and that’s very valid! The simple answer is yes. Liquid goes in, and liquid comes out. But then, as it is all liquid, nothing needs to be digested and it’s all easily absorbed through the intestine walls and thus Greg basically doesn’t need to work at all. The only thing passed is the stuff I didn’t need (like usual!). It does seem a little backwards but then the whole process was to make sure that Greg has a rest, rather than improving the immediate symptoms 🙂
      I cannot explain how much someone else calling him Greg made me grin! Him and I are in a state of flux at the moment, I recently started Azathioprine (an immuno-suppressant) so both he and I are getting used to that. I’ll be talking about that in my next post 🙂 I hope you are doing well too at the moment 🙂

      Liked by 1 person

      • wayover50 November 27, 2016 / 7:14 pm

        I see, I suppose that’s what I thought and why I asked. Makes sense, no solids in, so only liquid will come out! Glad you and Greg are getting along a little better at the moment, seems fair really, you gave him a rest, so he should reciprocate, good boy!

        Haha, I actually didn’t even notice that I called Greg by his name. After reading your post I just automatically used it 🙂

        Hmmmm, maybe I should give my problem a name?

        Take care, looking forward to reading more of your posts too 🙂

        Liked by 1 person

      • jazzc36 November 27, 2016 / 8:04 pm

        Exactly! He’s reciprocated quite nicely for a long while, so he very much a good boy!
        Haha, well thank you, I appreciate it a lot.
        Only what makes you feel comfortable, as we all cope in different ways. Though if you ever do, I would love to know what you choose 🙂
        Be kind to yourself too, and I look forward to your posts also 🙂

        Liked by 1 person

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