Series | How my Ulcerative Colitis impacted my Mental Health

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.

I don’t think my mental health had even been a consideration when I was a teenager. I’d been through all of the usual teenage angst. I’d dealt with being bullied at school and had felt pretty crap about it. I’d had my heart broken and felt pretty crap about that too.

I had wondered if there was something wrong with me, and I’d had huge meltdowns over a few spots on my face. I had dabbled in drink, drugs, and sex with people I barely knew. I’m guessing that’s most teens, right? Maybe not...

Looking back, I’m not proud of many of my actions, but, I’ve spent time picking apart the drivers behind them and I have come to the conclusion that they were pretty normal responses. You live and learn, and I think that’s kind of the point of life. Still, some learn faster than others, and some never learn...

A change in priorities with a UC diagnosis

I definitely think that my ulcerative colitis diagnosis made me grow up. Nearly dying made me look at my life and re-evaluate what was important. I felt like I could see more clearly. I knew what my priorities were. I was very aware that life is short. I wanted to practice being grateful for every day, and everything I had.

However, life with a stoma was really difficult for me. My stoma nurse was rubbish, so I had constant leaks and burnt skin. Fatigue was something that I wasn’t prepared for either.

I just felt a little lost, and I didn’t really like my life. I didn’t feel like me. I thought a j-pouch would rectify that, but then the bombshell about fertility issues following the surgery was dropped on me.

Instead of accepting a life with no child, I tried for a baby. I conceived and lost it and then decided that I wasn’t strong enough to go through it again any time soon. So, I went ahead with the j-pouch surgery. The baby loss and fertility stuff stuck with me though, for a long time. I saw a counselor, which did help a little.

I didn’t consider myself to be depressed at any time. I just thought that I was understandably miserable, due to circumstances.

Pouchitis, scars, and needing to use the toilet often

My j-pouch didn’t work well, so I was constantly having Prednisone for pouchitis. My relationship fell apart and I moved out. Rather than feeling down about it, I just felt a huge relief.

I got my life back, started socializing again, and going out for drinks with friends. I felt pretty much back to normal, other than the scars and needing the toilet so frequently. My friends commented that I was acting more like my old self and seemed happy again.

I’d never realized that I hadn’t seemed happy, and to be honest, I was annoyed that no-one had said anything to me. I thought that if it had been the other way around, as someone that cared, I would have...

Frustrating comments from others while in a flare

The stress of moving and drinking finally caught up with me and a flare began. I’d been flare-free for 10 months, which was a good run for me!

I had no choice but to slow down. I began taking Prednisone again. I went to work all week and just came home to rest. On Friday, I’d meet my mum in the pub for a few hours, where I'd drink soft drinks, then I’d rest all weekend too, apart from minimal housework.

I got so mad about the constant comments about the way I chose to live my life.

“You can’t be that sick if you’re going to work.”

“Why come to the pub if you’re not even drinking?”

“If you were that unwell you wouldn’t be going to the pub.”

Realizing the impact of UC on my mental health

Those comments led to my first social media post in which I openly talked about inflammatory bowel disease, and the impact it had on my life. The post was shared far and wide. I didn’t just get involved with the online IBD community, I built one around me.

It was only then that I realized how much having UC had impacted my mental health. The relief of being able to talk about it with people that understood was huge. So much so, that I didn’t even feel stressed when I needed emergency surgery again. I felt able to cope with what was coming when I ended up with a stoma, which would not have been the case 6 months earlier!

Looking back on my struggles with UC

When I look back, I can see how much I struggled, even though I didn’t recognize it at the time. It took many years for me to even accept that the disease and the subsequent surgeries were going to impact the rest of my life.

That last course of Prednisone had nearly tipped me over the edge. I'd thought about taking my own life, to the extent of planning it, and being comfortable with it. I'd been emersed in the IBD community at just the right time, to save me.

My latest flare felt like it lasted forever. I cycled through the same old treatments, waiting for one to work. I still went to work, but I didn’t have the energy to clean the house anymore. I didn’t have the energy to look after myself.

I don’t think it helped that I didn’t like my job, so that took a lot out of me mentally every day. I didn’t go online to talk to the community because I felt so negative, and I think that might actually have been the one thing that could have pulled me out of it. The GP said I was so fatigued because I was depressed. I was certain I was depressed because I was so fatigued. All I knew for certain is that I was utterly miserable, and tired of my life.

The cloud only lifted after surgery. It was literally like someone had flicked a switch and I had hope again. I was looking forward to feeling better and being able to get out of the job I didn’t like.

Thinking about how much of my life I’ve missed because of my disease is overwhelming. I feel robbed. I see people I went to school with that own their house, and are married with kids, and I just feel so left behind. I feel like my life isn’t quite as it should be.