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Friday, 17 March 2017

Three Year Update // My IBD Journey

I should have posted this back in February but due to my colitis playing up I haven't been well and it made it difficult to write with a clear mind. When I am at a bad point with my colitis I can either be positive or negative and although that's something that will always come with a bad situation, I didn't want to write with one outweighing the other. In a similar fashion to last years post I just wanted to write this as an update of events and break it down into similar categories.


Last time I was about 6 months into a new drug called Humira which I administer myself at home by EpiPen. Although I am having a bad patch at the moment the Humira is such a huge help for me and looking back I feel so silly for being so apprehensive about it. Over the year I was pretty much doing it on my own as contact with my IBD department was pretty poor at the time. By this I mean I'd email and never get a reply, I would call and leave messages and never hear anything back and generally just dealt with it all on my own. This is dangerous to do and although I found it easier to give up trying because of the stress of it all I wasn't getting regular blood tests to check the Humira and I could of ended up a lot worse off. Thankfully there are two new members to the IBD team who are fantastic and I feel as if I can open up to them more than I do my consultant.
Around November last year my consultant decided to take me off two medications; Octasa & Azathioprine and I was very determined to stay on them. I listened to her, ended up coming off them and it has left me in the current bad patch I'm in now. I'm due an appointment with her soon which will be interesting.


Not the most loveliest of topics to discuss but it's something you wouldn't necessarily expect to see a lot of IBD sufferers go through, so if you have IBD it is something to watch for. I recently had a huge problem with this as I genuinely thought I was doing well and I was starting to go into a remission period with the colitis. It was so upsetting to find that constipation was the cause of it all and it meant spending three weeks on laxatives, missing out on work, housebound and generally going stir crazy with the pain. This then led to finding out I was in the beginning of a flare up which means I am back on a short course of steroids but as I come off them I would have seen my consultant and hopefully got something else in place.

Flare Ups

This is where the Colitis is uncontrollable and although you could have the smallest bit of inflammation it could still have a significant impact. The thing with Flare Ups is the unpredictability as I look, sound and could be fine before I get a wave of nausea, cramps and lose control over my bowels. Accidents are probably the most upsetting thing about have IBD and it really does impact you more if you have depression or anxiety.

Depressive State / Anxiety

For me anxiety is something that I struggle with, like most people getting nervous or anxious is a normal feeling but I always played it off. As I was diagnosed and as I've gone through my journey with Ulcerative Colitis I think to myself I've felt like this before I can just brush it off, focus on something else and ultimately distract from it but I'd never solve it. Having CBT last year really helped me with that but this time round it has been harder as there are moments where it's so unexpected and strong I cannot control it. With this I was introduced to Propranolol to help. 
I still have problems driving the car, I actually have problems getting in the car with this current flare up and that does make working difficult. Since last year I've had two more jobs, working two at the same time again and I'm currently working a maternity cover in Admin. Although my anxiety and overall mental health isn't brilliant, having a management team who understand is golden which is something I've previously touched on. You do not have to tell your management if you have IBD but in my opinion it helps you destress in the long run and I am so happy and thankful mine understand that having UC and everything else with it wasn't something I chose. 

Dietitian / Weight

Since my last update there hasn't been a significant change with my dietician. The main thing we've done is eliminate and reintroduce foods to see if my tolerance to them was because of the result of a flare. With the constipation and being in a flare at the moment I've completely cut out red meat, cut back on a lot of high salt foods and increased my fibre intake.


As another birthday approaches, I look back to last years update and feel my heart on my sleeve once more. With the anxiety being at its worst the feeling of being alone as I get older increases and yes I have wonderful family and friends but when I see what I have to offer someone in their life I feel guilty that UC comes with that. I have to work on it a lot more but it does keep me up some nights and I know fellow IBD sufferers are experiencing the same thing.

I only write these update posts now and then but there are a whole load of people who dedicate their blogs to Crohns & Colitis. So Bad Ass is an amazing blogger and writer who discusses IBD in a variety of ways, professionally and socially. I would highly recommend popping over to read her posts.

As always, thanks for reading...

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