Series | How my ulcerative colitis impacted my recreational activities

This is part of a series about how my ulcerative colitis impacted different parts of my life. This is not my usual type of post. There are no tips, learnings, or useful bits of IBD information.

These are simply the raw and honest thoughts that I have when I’m feeling a bit annoyed with my life. Times when the fatigue gets too much, I’m stuck indoors, or I’m laid awake at night. I’m sharing this with you simply because I want you to know that you are not alone.

I can’t help but wonder what my life might have been like if I didn’t have ulcerative colitis. I think about all of the things that would have been different, and then I wonder how much different, or better my life would be now.

When I was diagnosed with UC

I was 19 when I was diagnosed with UC. I worked all week, went to the pub on a Friday when I finished work with the girls from work, and went out drinking and dancing with friends on the weekend.

Once I’d recovered, I was just trying to get my head around living with a stoma. I had leaks frequently, and my skin was burnt and sore because of it. Bags wouldn’t adhere to my skin properly because it was weeping so much. I had zero confidence.

I didn’t want people to see the bag through my clothes, so I bought the baggiest things I could find. I can’t even begin to explain how much I wish the online community had existed at the time.

Stuggles with a stoma and lost friends

I felt like the only person in the world going through it. I felt like life wasn’t fair. I tried to keep going with my life, but I felt so different. I was too conscious of my body and the bag, and I was scared of public leaks, so I ended up just stuck at home.

I thought having a j-pouch would fix everything. For a short while, it did, but I’d pretty much got no friends by then. We had all drifted apart during my two years with a stoma.

I managed to go to festivals and on nights out to watch bands. Both of which were things I’d never done before, and I realized I really liked! It was a good job I had my mum to do these things with, or I’d still have been stuck indoors!

Living between remission and pouchitis

My j-pouch didn’t work well. For years I was constantly flicking between brief periods of remission and pouchitis. Whenever I was well, I’d go and see live music whenever I could.

When I was flaring, I’d just work and rest. I managed to lose a few more friends during that time. It’s so hard to explain to people that you can be well and doing things for weeks at a time, and then suddenly need to rest for two months because of your next flare.

There were people that made me feel like they didn’t believe me, and others that just seemed to get fed up with asking how I was because the answer was never “Brilliant, let’s do something.”

Treatment or surgery does not always lead to improvements

Plus, people often assume that you start treatment and then you get better quickly when the reality with IBD is that we’re just having to suck it and see. I even had people make me feel like I had to explain my monetary situation when I said I couldn’t afford to do something!

I lived alone and only worked part-time because it was all my health would allow, so most of my wages covered the bills. Plus, I was always trying to save for my next festival!

Raising awareness about how IBD impacted my life

I found what felt like “my people” online, which was good because I didn’t even have to get dressed and leave the house to chat with them. Life slowed down a lot, which did me a favor, and I had an outlet to talk about how IBD was impacting my life with people who actually understood. My spare time was spent raising awareness and supporting others, and it felt like a very worthwhile thing to do with my time – still does!

I had another period of being well when I had my j-pouch disconnected, and it even lasted for a little while after it was connected back up. By that time, I’d settled into the slower pace of life, so when I started dating again, I liked that we just went to the cinema and out for food. I still always had festivals in mind though...

The flare that came after my j-pouch had been reconnected was my final one. I cycled through multiple treatments for around 18 months – giving each one 2-3 months to work. Progressively getting worse, and doing less and less of the cinema and eating out, until finally, I did none of it. I was utterly miserable.

Regaining my quality of life with a stoma

Then came a decision I never thought I would make. I didn’t want to move on to a clinical trial to save my pouch. I wanted it gone, and ASAP. I wanted some quality of life back. I wanted a permanent stoma.

I’d thought about all of the things that I was missing out on, and what a stoma would allow me to do again, and that was my light at the end of a very long tunnel. It took time, as I had to be referred back to the only surgeon I trusted at a different hospital, and then I had surgery canceled because he’d had an injury.

Improvements in my life that happened with improvements to UC

Finally, it happened. I woke up after the surgery and it was like the dark cloud that was hanging over me had just dissipated. Yes, recovery was tough, as always, but I held on to the thoughts of what I would soon be able to do.

The first year of being well again was filled with holidays, day trips, going to the Zoo, and theme parks! It. Was. Amazing! Even just being able to meet people for a chat over coffee was something I hadn’t been able to do while flaring! My relationships have improved, and so has my mood and attitude.

Finding hope as I move forward with life

2020 has sucked a lot, so the festival I finally booked didn’t happen! Still, I have a lot of hope for the rest of my life going forward. My recreational activities have changed a lot throughout my journey, and I do miss having the energy to go out dancing every weekend, but I am enjoying my slower-paced life. On top of that, this year has helped me find yoga and more things I can do at home like crafting.

I have missed so much of my life! I have lost so many people – I’m not fretting about that because real friends would have stuck with me.

So many festivals and holidays and stuff that I could have been doing if only I hadn’t been so set on keeping the pouch... I’m really annoyed with myself for that, but I cannot change it. I honestly wish I hadn’t had it reconnected in 2014, but hindsight is a wonderful, and pointless thing!