Series Wrap-Up | How My Ulcerative Colitis Impacted My Life

This is the final part of a series about how my ulcerative colitis impacted different parts of my life.

The series has focused on 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’ve shared these thoughts with you simply because I want you to know that you are not alone if you ever think the same kind of thing.

I have written about how my ulcerative colitis has impacted my education, career, family planning, friendships, mental health, romantic relationships, recreational activities, and physical activity.

Writing about the impact of my UC

This series has been pretty hard to write. Sharing my feelings of anger and regret, and rifling through memories of times that I’d much rather forget. Some days I have come away feeling sad, and hard done by. Other times, I have felt proud of all of the things I have overcome.

Now, I basically wanted to sum up the impact, and what the overarching feelings have been throughout my journey.

I AM happy with where my life is now. Sure, I’d love to have more energy and less pain, but it is better than it’s been so often in the past. Writing this series has definitely highlighted that.

Pain, UC diagnosis, and surgery

I experience pain on a daily basis due to Fibromyalgia, which is thought to also be a consequence of my UC journey, and the surgeries that have been required because of it. Of course, that is annoying and is a constant reminder of what I have been through.

I often say that I don’t regret anything in my life because it has ultimately led me to where I am today. A place that I like. But, the reality is, that so many areas of my life have been put on hold over and over again because of my health.

I believe much of that to be my fault. Initially, I didn’t accept how chronic my illness was, even when I’d been through a pretty traumatic diagnosis and surgery the week after. I had no colon, yet I was still expecting to go back to the normal I knew pre-diagnosis.

The impact of choosing a j-pouch

I tried to, but I felt like my stoma stopped me because of constant leaks and how conscious I was of it all of the time. I went with the j-pouch surgery because I thought it was my only way out. Yes, I felt like I needed a way out. I felt trapped in a life and a body that I didn’t want to be in.

The reason I think my constant stop/starting in life is my fault is that I made that choice to have the j-pouch. If I hadn’t, I wouldn’t have had to deal with the constant pouchitis, and my life would never have had to pause.

My fertility would not have been impacted. But I know, deep in my soul, that at the time, it didn’t feel like a choice. It felt like the ONLY thing to do.

Always waiting to go back to normal

For years, and through multiple surgeries, I was expecting to go back to my old normal. I always thought that the next medication or the next surgery would put it all right. That is why it took so long to accept that my disease was chronic.

I think I was just clinging on to hope. You’ve heard the term that some people are eternally optimistic, right? Well, I consider myself to be eternally hopeful.

Even now, having accepted that my health will never go back to how it was pre-disease, I remain eternally hopeful, in many other areas of my life.

Sometimes my j-pouch feels like a regret

The j-pouch decision ends up being something I constantly think about. It feels like a regret. It’s something I even feel a little bit ashamed of having done.

Knowing what I know now, I could have had people to talk to online that understood. Then all of the issues I had with that first ostomy could have been fixed. I could have been living life. I could have a family by now. I wouldn’t have fibromyalgia.

But there’s part of me that also remembers that I DID need to do things the way that I did them. I needed to reach acceptance, and that can only ever happen in your own time. I needed to get there before I could talk about it, which is when I became active in the online IBD community.

Becoming active in the IBD community

That is what helped me when I needed a stoma again, because I saw how other people were managing, even though I had a huge amount of fear because of my first experience.

I also really don’t know if I would ever have reached a point of acceptance with that first stoma. If I hadn’t, I probably wouldn’t have talked to anyone else about it, and then I would not have coped. I probably wouldn’t even be here today.

The "should haves" of my UC journey

There are lots of things I regret.

I probably wouldn’t have stayed in a relationship I was incredibly unhappy in if I hadn’t been so lacking in confidence. The same can be said with jobs I have stayed in. I would probably have been better educated. I would probably have a family.

And these things do cause jealousy when I look at other people's lives. When I see people online or in the street that I went to school with, with their kids, and their cars, and the home that they own...

So, as you can see, my feelings are very conflicting.

I've found purpose in my ulcerative colitis

Everything I have been through has led to my now. To this day. Where I am sat in front of my laptop, with a dog on my lap, working as a freelance IBD and ostomy blogger at home. Where I work with healthcare companies to better understand the patient journey of people with UC, in the hope that one day, it will lead to better care.

I have a great bunch of people I call friends that I have met only because I have IBD. I advocate for those with inflammatory bowel disease. I provide support, a safe place to talk and raise awareness with a bunch of the aforementioned friends via IBDSuperHeroes.

What I do matters. What I do is worthwhile. I feel like I have a purpose, and I might never have felt that way in a UC-free life!

I don’t know where I would be if I hadn’t been diagnosed with ulcerative colitis. I don’t know if it would have been better or worse.

I DO know, that I am grateful for my now.