So You’ve Been Diagnosed With A Chronic Disease…

I was diagnosed with Ulcerative Colitis just over 6 weeks ago. In fact, I was diagnosed just 2 days before my trip to New York. I had to have a blood transfusion in early March because my haemoglobin was dangerously low, despite the fact that I felt fine. Something I’ve come to realise about my body this year is that it doesn’t like to tell me when something’s wrong. When I got to the hospital for my transfusion, they were surprised that I hadn’t already collapsed but in the end it was put down to my having an iron deficiency. So transfusion done and iron supplements in hand, off I went to carry on as normal. Now, I’ve suffered with stomach pain for years and I’ve seen all sorts of specialists including a gynecologist and a gastroenterologist and had all sorts of scans done as well as an colonoscopy and two laporoscopy’s and we’ve never found a problem. But seeing as I was home from University recovering from my transfusion, I decided to go to my doctors with another problem I’d discovered. I was going to the toilet a lot more frequently than usual and more often than not, there was blood. Now, in hindsight, needing the transfusion made sense because I was losing blood, but I didn’t want to speak up, mainly because I was scared of the answer. Anyway, my doctor sent me back to see a different gastroenterologist, who was lovely, and he decided I needed to have another colonoscopy. While I wasn’t happy about it, I knew it needed to be done and the earliest available slot he could fit me into was 2 days before my trip to New York, and thinking everything would come up normal like it usually did, I told him I’d be there.

So the day rolled around and I was a bit nervous but ultimately fine, things like this have never really freaked me out. Honestly, the worst bit of the whole day was when they couldn’t find a vain to put a cannula in to give me the sedation, so after being poked and prodded for a while, they had to call in an anesthetist who managed to get it done on the first try, but I knew I’d be covered in bruises! Anywho, I woke up when the sedation wore off thinking I’d be off on my jolly way without a care in the world but I was wrong. The nurse came over, sat on my bed and handed me some paper work. She told me, they hadn’t been able to fully complete the colonoscopy because of the amount of discomfort I had been in and then handed me a prescription form. From what my doctor had been able to see, I had severe ulcerative colitis. And that was it, she told me to get the prescription filled, to make a follow up appointment and then I could be on my way. And that’s exactly what I did. I didn’t really stop to think about it, just sort of immediately accepted it and carried on. Whether that was because of the shock or the fact that that was the sort of person I was, I don’t know. What I did know was that I knew what was wrong, I had a method of treating it and I had a worried sick mum in the next room waiting for me to come and tell her everything was okay.

Fast forward two days and I’m on my way to the airport, these new steroids tucked securely in my bag, having no idea how my body was going to react to them, and a mum who is extremely anxious about letting me go to New York for 10 days with a bunch of my friends. I assured her again and again that I was going to be fine, and that my friends knew what had happened and would look out for me but I was determined not to let this opportunity go to waste. I can be very stubborn sometimes. Luckily the steroids didn’t seem to really affect me until after I came home. The only thing that really happened was that I would need the toilet very shortly after I took them at breakfast, I quickly found out if I didn’t take them with food I’d feel pretty sick for a few hours, and I’d have to pop to the loo a few times throughout the day. Now, ‘a few times’ was a godsend to me, considering I had been going at least 6 or 7 times throughout the day beforehand, so I would happily take only having to make the trip a few times and very quickly resigned myself to the fact that I would be spending more time than I wanted to in the public toilets, something I had tried to avoid at all costs before.

Now move to 4 weeks down the line and the steroids have really started to take affect. I was eating a lot more, starting to put on some of the weight I had lost, I’d become more irritable and my skin was awful. And in terms of everything downstairs? I’d been going to the toilet more frequently, not as much as before, but enough to feel like it was a bit of a step back and a few times I’d noticed blood, plus I was struggling to sleep through the night because the urge to go would wake me up every few hours. Luckily I had my follow up appointment that week. He was happy with the progress I’d made but we knew that steroids were not a permanent answer so he decided to put me on these long-release granules as well. My skin hasn’t got better and I seem to be hungry all the time, but I can quite confidently say I will go to the toilet once when I wake up, sometimes once during the day and once late evening and I’m sleeping through the night.

Slowly I’m starting to feel like my old self again, I’m not as exhausted, I don’t worry about going out and not being able to find a toilet in time or going out and subconsciously clocking where all the bathrooms were. Before I couldn’t be out for longer than a few hours without having the overwhelming urge to go home and use the toilet and now I can happily spend the whole day out knowing I’ll be fine. Why am I telling you this?

Because I know there are people out there who might be going through the same things as I was. And no, I’m not going to act as if I know everything about everything because christ, I’ve not even been living with it for longer than 2 months but I do know this. It can feel sucky. Really really sucky. And that’s okay. There are going to be days where your body decides it doesn’t want to play ball and you’ll struggle just to get out of bed. When you get diagnosed with a chronic disease, it’s just another way of them telling you that you have something that’s incurable. As in, sorry but you’re going to have to live with this for the rest of your life. But you know what? That’s okay too. Yes your life isn’t amazing right now, it isn’t as great as before but that doesn’t mean it won’t be someday. You’re just going to have to work to get there. Eventually, it’s going to get to the point where this, you’re life right now, is just a ‘new’ normal. That doesn’t mean it’s any worse than the normal you had before, it just means it’s different and as long as you’re healthy, different is okay. Right now, I see it that I’m in the transitional stage between how my life used to be and how my life is going to be. I’m in the middle of tests and finding the right medication for me but eventually everything will settle down and there will come a point where this will feel like how my life has always been and it’ll feel normal.

I wasn’t going to post this here, or anywhere for that matter, but I recently watched a video of Hank Green talking about his views on having Ulcerative Colitis and how he’s found his ‘new’ normal and it made me think that in the midst of this thing that can throw us completely off course, it’s nice to know there are people out there who understand that, while it isn’t something you can see as being wrong, some days are harder than others and sometimes it’s hard to even comprehend that this is what our lives are now. But it is and knowing you’re not having to feel like that alone, truly is a wonderful thing.

 

Featured Image – brinkofbedlam

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