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Saturday, 21 February 2015

I Can't Believe It's Been A Year // My IBD Journey

After completing University and graduating in November 2013, I was going to and from the GP and working two jobs. I was very stressed, not eating properly and becoming really thin. After more tests I was told that I was to attend and emergency hospital appointment that started me on the route of my diagnosis. I saw a specialist that put me on steroids because my large bowel was so inflamed. I then was referred to a specialist that was going to perform my Colonoscopy. I have a post about that experience here

A year ago today, I got the biopsy results that concluded I have Ulcerative Colitis. Over the year I've had a few ups and down, it's pretty much unpredictable and although I have achieved moments of control it doesn't last as long as I'd like. 
You now many be thinking what is the purpose of this post? Well I am going to be list off some things I've learnt about living with a Chronic Illness in the last year.

A Depressive State

I have always been known as having a happy, positive and goofy outlook and trying to make a joke of things. I actually came out on my Colonoscopy saying "pfft, 20 minutes on my back and it wasn't a good experience". I have never had a serious streak of depression in which I needed medication or a form of counselling but I have had moments where; I was not sleeping, I couldn't control negative or upsetting thoughts, I was irritable and short tempered and generally felt like I was hopeless and couldn't do anything right. This is where I say I experienced A Depressive State in which I knew it and was trying to look on the positive side but in some moments just couldn't control it. I then realised that it's going to happen now and again and I wouldn't say I needed medication or counselling for this because at the same time I've come to learn it's a natural experience when being newly diagnosed with something you are going to have to live with.
As a disclaimer: Depression is a serious illness and I am in no way making light of it or even saying that is what it is. I am only interpreting what I have felt and from explanations of what others have felt in a way that seems somewhat logically fitting.

Anxiety & Eating

This is something that I am currently tackling. Since I have been diagnosed I have missed birthdays, celebratory nights out/gatherings, new years eve parties and I have had to reschedule appointments and interviews because I have been so scared of my Colitis getting me. If you don't know a lot about Ulcerative Colitis it basically leaves you with no or very little control of your bowel movements. I will be getting ready to go out, then it'll hit me and then I panic, what if it happens again? The last one was so sudden and there's always a line for the toilets in a pub/club. I don't want to be caught short and everyone see. Those thoughts go round and round in my head and that's it, full blown panic mode to the extent of having a panic attack. This goes for travelling as well, being stuck in a car/bus/taxi with no bathrooms around = full blown panic attack. I am not alone in experiencing this but it does make it harder to trust in going out. In a week I will go out to the supermarket, maybe see a friend or family member and I may be out for an appointment/interview. I would say that collectively that's around 10 hours or so in a week. That means I spend around 158 hours at home too scared/untrusting of what will happen. In that I also don't eat, if I have an appointment at 12:00 I won't eat until I know I'm home and safe and I know a lot of other people do the same because food affects us differently each time. 


I have 100% realised who I can rely on and who is there to support me. I don't look for instant realisation as it can be confusing, it's a lot of information at once and some things can change. I just want someone to try and not berate me because I couldn't make that meeting or that night out, It's not like I can help it. If I said I will go, it's because I want to, if I say I'm not going to be able to, it's because it's out of my control and I am sorry about that, but what can I do? As I stated earlier I spend a lot of time at home and I rely on those who pop round for a cup of tea, to have a catch up and just be in company with. Those friends (they know who they are) are the ones I know will be around.


This part is a little "heart on the sleeve" but it's something I've learnt and something I have seen friends with IBD go through. Telling someone what you have is embarrassing enough...telling someone you find attractive, even harder. You have to though and it doesn't have to be the first date but there are a couple of reasons why you have to tell them earlier into it.
Firstly, If they aren't going to understand it then they shouldn't be around. Simple as, if you are realising who your friends are then why make the rules different for someone because they're attractive?
Secondly, they could understand it but it's not what they want in a partner. Yes that's hard to hear and deal with but I know a lovely guy who I never even tried to explain if we could be something because he loves to travel. He'll always ask me how I am and he'll go on about where he's off to next but with my anxiety when it comes to travelling I knew I couldn't go along even when he's said we'd have to go here and there because I would love to go too. That was my choice in that situation but it could be his/hers and it can be something you understand or again something you say, well then who needs you?
Thirdly, in some cases, women with IBD can't have or will have difficulty with conceiving and having children. It's not something that every woman with IBD will experience, just some with very extreme cases. If you know then they'll have to know too. Most men want marriage and children and again it's going to be so hard to hear but then it can be understandable.
At the end of the day with finding someone you need to be what they want in their life as well as what you want in yours and that goes with any relationship whether you have a form of IBD, diabetes or even a neurodegenerative disease. 

That's not everything I have learnt but a lot of it interlinks so I put the main points. I have this for the rest of my life and I am going to learn a lot more so I may post as I go along or I may do them yearly.

Before I finish this post I want to say a massive thank you to my mum. She has been the biggest support this past year, been to all my hospital and GP appointments, dragged me out of the house more and settled me when I have had panic attacks. I love you.

As always, thanks for reading...

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