IBD AND ME

I wanted to take a moment with this post to write about something that really has turned into a huge part of my life, even more so since I graduated last July.
During my final year of university I was diagnosed with Ulcerative Colitis.
For those unfamiliar to what Colitis is, it is a form of Inflammatory Bowel Disease which affects your large bowel/intestine.

With UC, ulcers develop on the surface of the lining and can bleed heavily and/or produce mucus. As a result it ends in some nasty bowel movements, uncontrollable urgency, extreme pain, fatigue and malnourishment.
There isn't a specific cause of the disease. It can be brought on through stress, lifestyle changes, diet or even as a hereditary gene.
As of yet, there's no cure. However every year new drugs and treatments are being trialled and developed to help manage symptoms and get patients into a place of remission.
UC is a chronic illness which means it is ongoing and lifelong but when you're in a period of remission life can feel pretty normal again!
Unfortunately for me I have been suffering from a pretty nasty relapse/flare since June 2018.

My colitis was being managed with Mesalazine for a good 8 months until one day this simply stopped working for me.
After finishing university, taking time out to travel and starting my first grad job, all within the space of a few weeks, I had really pushed my body to its limit doing the most! I'd not taken any time out for myself to rest and just catch up on life. It was all go, go go.

Within a week of starting my new job I was heading into full flare. I was rushing to the bathroom, passing a lot of blood, in extreme agony with stomach cramps and struggling to eat and digest meals.
I continued to power through work not realising the extent of how bad things can get with colitis if you don't take care of yourself quickly.
I was in such pain working on an event out in Lisbon it was almost unbearable and I knew as soon as I landed back in the UK I was going to have to get myself down to A&E.

And that's when things really went downhill. July 2018 saw the first of many hospital admissions for me trying to get my colitis under control and managed with steroids and biologics.

Biologics are a great way of treating auto-immune diseases (...when they work).
The best way my IBD nurse described things to me with biologics is that they work to block a protein produced by the body that causes inflammation and works to reduce this.
If you want a better understanding of them for yourself the best site to read about them is here.

Depending on your body's immune system and how well your body adapts to new medications sometimes the first biologic you try when suffering IBD can work wonders for you and help get you in a place of remission for months, even years to come. Unfortunately for me after trying Humira injections and Infliximab infusions I saw no improvement and remission still seemed a long way off.

Jump forward to November 2018 I went back into hospital for the 4th time and I was ready to just see an end to this all and have my large bowel removed. I had gone through 4 months of hell by this point with sleepless nights, extreme pain, extreme fatigue, uncontrollable bowel movements and my mental health was being pushed to new levels. I had gone from being the most bubbly, independent, energetic, positive individual to a complete recluse. I couldn't leave the house without having a panic attack, I cried non-stop almost all day every day and some days I couldn't find the energy or motivation to get up out of bed or out from my pyjamas. Having colitis really does drain the life from you.

At the same time I was feeling very heavily under pressure from work. It got to a point where I was feeling more harassed than supported by the HR team and my colleagues hadn't spoken to me properly in weeks. On top of everything I was feeling let down, disappointed and like a failure myself. I was sick of being pumped full of steroids, constantly stressing, worrying and getting very little sleep. All I wanted by this point was just to be happy again and get my life back.
It was then that I made the decision to quit my grad job. I decided I needed to take a complete time out and just focus on me and getting back to feeling like myself again.

Work can always wait. Taking time out for your health is the most important and valuable lesson I have ever learnt in life. I have learnt that when the time is right, new opportunities much more suited to you will be sure to come your way.

However, as desperate as I was to just jump straight back into work and pick up where I left off, this just wasn't feasible. Getting over a bad flare with colitis takes time and a whole lot of patience! Not to mention some serious drugs and great support networks but we'll get to that shortly...

Earlier this year I finally weaned off my steroids. These really are nasty, nasty drugs. I was on a make called Prednisolone. Don't get me wrong they do wonders for sorting things out downstairs pretty darn quickly but they come with a whole load of side effects.
- My least favourite being the classic moonface, where water retention just builds up and you literally find yourself feeling like a balloon for weeks on end. I like to refer to this look as 'Prednisolone Barbie'.

Steroids can also cause insomnia, anxiety, hair loss, weight gain and depression.
I managed about a month or two free from steroids and had a great time with my energy levels feeling back to normal I was able to get out and about for a full day without worrying. But it wasn't long before things flared back up and here I am back on 40mg of Pred again. We're still in a trial and error phase with my latest biologic infusion - Vedolizumab. We're not quite sure if it's working on its own just yet but only time will tell as it can take a while to build up in your body.

I have been lucky with timings as a new drug, in tablet form, Tofacitinib, has just been approved by NICE. So I have ONE more option waiting in the wings before surgery if this doesn't work. I've had meetings with my IBD nurses and surgeon about this but I'm hoping I can keep this away for as long as possible.

Despite being pumped full of steroids and in a bit of a limbo about whether my infusions are working I am finally feeling pretty great in myself. Don't get me wrong anti-depressants are probably helping me out a lot here but I haven't felt this relaxed, content and at peace in such a long time.
I have had a seriously incredible support network through these last 8 months of pure hell. My parents, sister, auntie, uncle, cousins, friends, old colleagues, GP and IBD nurses have been AMAZING.

My parents have been so calm through everything, helping me to get my confidence back. Treating me to little things here and there, driving me to and from hospital appointments and never once pushing me to do anything I wasn't able to manage or cope with. My mum has been even better with helping to manage my new gluten-free, low-fodmap diet and she is so conscious about what we're cooking and what we buy. She's also been there to check things for me when I really haven't been in the right frame of mind.

After my family, I have no words to describe how incredible my friends have been. They've been there through it all, to listen to the trauma at all hours of the day and night, laugh with me when needs must, visit me at home, in the hospital and just be there for a catch up over numerous cups of tea. Best part being able to fill me in with the gossip from the outside world when I was feeling my least connected to it all.

It sounds silly but a serious achievement for me this year has been getting outside on some gorgeous wintery walks with the girls. Where I spent months in my own bed and hospital beds and feeling like a total indoor hermit crab I panicked a lot about making it out for an hour walk outside or even straying too far from home. At the start of this year some of my closest friends got me out EVERY single day.
We wrapped up in as many layers as possible and took to the woods, the seafront and the South Downs. It was great. We walked, we talked and we put the world to rights. Its amazing what a bit of a fresh air can do for the mind!

Now Spring is here I've been throwing myself into yoga classes with mum, still keeping up my walks and catch ups with friends and keeping myself busy. Best part being I finally feel ready to get back to working and pick up where I left off! It's been a long time coming but now being able to reflect on it all, I feel hopeful and ready to keep powering on with this dreaded disease. I'm not going to let it get my down in the future anymore!

For anyone struggling with IBD and colitis in particular, I really don't know it all, and I do know everyone goes through different experiences but if you need to speak to someone who is in a similar position and/or you can relate to any of the rubbish I've babbled on about above, feel free to comment and I'll always be happy to talk about anything!

Thanks for taking the time to read this,
Izzie x