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Sunday, 25 March 2018

Four Year Update // My IBD Journey

I am now going into my fourth year of having Ulcerative Colitis and a lot of things have changed from the day of my diagnosis to now. I have included some updates with my UC in my Goodbye 2017, Hello 2018 post so I'll try not to repeat myself.
Along with my other content I do write these posts like a diary for myself, so I completely understand if this is something you choose not to read or find it to be too much information.

Flare Up

I hit a flare up in February of last year and it was the toughest one I've experienced. I also found out I suffer from Proximal Constipation, something that you can have with Ulcerative Colitis or Crohn's Disease. I was continuously running to the bathroom in a lot of pain, it became difficult to work as my bowels were uncontrollable and I again became housebound for a couple of weeks at various periods of time over the year.

More Medication

I was put on steroids and it was excruciating to be on them for so long. Prednisolone is mostly used as a short term solution but I found myself on a high dose for months before being weaned onto a short does for a month. I've always said Prednisolone is like making a deal with the devil as the side effects of it can cause a lot of problems. 
You put on weight, not matter how healthy you eat and how strict you are you still gain. You become hungry all the time. I could sit and eat a roast dinner the size you'd get at Christmas and I could still eat another plate full straight after. The pain it creates in your joints makes sleeping difficult and I'd find myself being woke up with legs cramps and pains every night. The worst thing it can affect is your mental health. You become emotional, depressed, anxious and you feel useless for it. As this was my worst flare and with the high dose of steroids I was on, thinking back to my mental state, I find myself surprised at how much I still accomplished during that time. I was working 40-hour weeks, I went to Spain to see my granddad, I was still blogging and was trying my best to get out the house. It wasn't always achievable, but I tried. 

When I was finally off the steroids it was taking time for my change in medication to kick in, so I again went into a state like I would endure with a flare up just not as bad. That was when I started a routine of being at work or being at home there was no venturing out the house unless needed. Online shopping has made life easier for a lot of people, but I loved going shopping, trying on clothes, new styles, new makeup...etc and I have said before that I know I won't ever be the person I was before having Ulcerative Colitis, but it struck me hard. This last year made me realise that I hate losing that little bit more of myself with each bad patch I go through.

Proximal Constipation

Being told I have Proximal Constipation means I am constantly changing my diet, I cut out red meat and sugary drinks and whilst that made a difference for a while it isn't a permanent solution. It will be something I live with alongside Ulcerative Colitis. It does add to the never knowing how I'd be when I wake up from day to day and that can make booking things in advance a maybe rather than definitely. 

Going into my fourth year I find myself going from having hope to knowing that this disease is unknowable. Medication can help but I don't think I’ll ever see answers as to why it begins, why it happens and how it can be better managed or fixed. Every 30 minutes someone is diagnosed with IBD and 1 in 4 of those are under 16. It's a shame that there aren’t many people speaking about this issue because it's seen as embarrassing. The ones that do, do an amazing job and I hope that my little diary type posts help someone understand that they are not alone, and it doesn't have to be as awkward or embarrassing to talk about it.

As always, thanks for reading...

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