Coping with Ulcerative Colitis - My Tips!

Living with a chronic inflammatory disease can be really debilitating and hard to deal with. I was diagnosed with Ulcerative Colitis back in August 2016 and since then I’ve had a lot of time to reflect and learn how to cope with it. This condition can affect people in so many different ways, but I thought perhaps sharing my own ways of dealing with it might help a handful of people. If it does then it’s a job well done in my book, so if you think any of these things could help you, then please do give it a try!

1) Take it seriously.

Now I don’t mean this in a condescending way, it’s just based off of my own personal experience. I know when I was first diagnosed I thought it was going to be a few weeks of medication and I’d be right as rain again. Until I realised it was lifelong, with treatment my whole life and that I needed to make lifestyle changes to suit it. It’s so important that you take your medication no matter how unpleasant it may be (I even take medication up my bottom). I have to admit there was a time where I just didn’t bother with my medication because I didn’t feel like my illness was that bad until my health quickly went downhill. As much as I hate it, I know it makes me feel better. Equally, if I need to rest one day, I take the day to do whatever I need to do to feel myself again. It’s important to stick to all of your regular hospital appointments too. It can sometimes feel like a “job” because of all the time it takes up, but it’s necessary for your health.

2) Be 100% honest with your GI Doctor.

When I say 100%, I actually mean 110%. Tell them absolutely everything and get right down to the nitty-gritty. You might not think it’s something they need to know but it could turn out really useful. Talking about poo, blood, and accidents are nothing to be embarrassed or ashamed about, and it’s something they hear regularly since they’re specialists in the field. Tell them exactly how you feel about your symptoms too, because you might also benefit from therapy and other kinds of support. It all helps them decide on the right treatment plan for you, to improve your health and day to day life. I even started taking in photographs of inside the toilet so my GI could see exactly how much blood I was talking about, since amounts can be hard to judge, and that led to my medication being bumped up. It could be helpful for you too.

3) Plan and prepare.

This is something I do every single day and I feel like this is the most useful one for me. I prepare myself for the worst-case scenario so I’m still able to go out and enjoy myself. I always carry baby wipes (you never know if you’ll be caught short with no toilet roll!), a change of underwear, my radar key, "can’t wait" toilet card and extra medication. When I’m going somewhere I always look into where the nearest toilets are. Most places, like shopping centres, have maps with all the toilets on it, and I familiarise myself with it. The same as if I’m going for a meal with friends, the first thing I eye up is where the nearest toilet is, just so I’m ready to go if I need it. I don’t like to let this illness stop me from living my day to day life, and this really helps me feel like I can still do normal things during the day.

4) Involve your friends, family and colleagues.

I can’t stress enough how much this helped me. I’m a very open person already, so I guess it might have been a bit easier for me, but I tell everyone, well… everything. I tell my family and friends exactly what it feels like, what happens, what my worst days are like and what could happen in the future – including things like hospitalisation and surgery, just so they are aware of how serious it can be. I feel like this just helps with understanding what I have to live with, and if I need to cancel our meetup, then they know it’s not just for the sake of it. It also means when I ask for help, they have a bit of a better idea of what to do and what I’m going through.

5) Don’t let it ruin your life.

Probably the most important point, don’t let it stop you from doing what you want to do. I personally cope a lot with humour and I make light of the darkness in my life. I’m generally a jokey person anyway so I don’t mind joking about pooing myself or how often I’m at the toilet, it sometimes makes me feel a bit more human. I like to enjoy my good health days and try to be productive on them. But even if I don’t feel productive, or if I’m having a poor health day – I make sure I look after myself. In my eyes, a rest day, even if you’re just watching TV all day, is never a wasted day when it’s for the good of your health, mental or physical. If I need the time to recuperate, I take it. If I need to cancel a meal, I cancel it. If I want to watch The Office US in bed all day and eat chocolate, I do just that. I also started making career changes and went back to college because my old job was a bit too difficult to deal with, with my health condition on top of it. Instead of quitting and doing nothing, going back to college to study and do different things with my life means I’m moving forward and not letting this illness get the better of me.

I hope this post helps at least one person. I just want to reiterate that I understand everyone is different, and we all cope differently. These are all just ways that I cope with my own situation, that other people might find useful. Since I was diagnosed I’ve made so many life changing decisions that have led me to where I am today… I went to back to college, changed my career, it got me into blogging and YouTube, and found me new, wonderful friends. While this illness can be difficult and draining at times, it’s brought me so many other things that I’m grateful for. My illness doesn’t define me, it just took me down a new path in my life. 

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