Expectations After Diagnosis
Last updated: October 2022
Being diagnosed with ulcerative colitis can be a really long journey. I often hear diagnosis stories from other people with inflammatory bowel disease and think that I was very lucky to be diagnosed so quickly.
My ulcerative colitis diagnosis was a relief
I wasn’t lucky that my UC progressed within a matter of weeks, leading to the loss of my colon, but I am definitely glad I didn’t have years fighting to be heard! I have since experienced being ignored and getting to a point where I started to think “Is it all in my head?”, but that is a story for another day!
Diagnosis is often a relief after a long battle of trying to be heard. For me, it was a huge relief because I had gone from being well to suddenly so sick that I couldn’t stand, leave the house, or eat! So, there it was, a name for what had popped up and thoroughly kicked my ass!
So, what’s next?
Assuming that life would resume to normal after diagnosis
I assumed that once you knew what you were dealing with, you took a pill, you went home, and you got better – an assumption backed up by the information booklet I had been given in the hospital. My first hospital stay actually resulted in emergency surgeries, an ileostomy, a stint on TPN and then finally being released 7 weeks after going in.
However, I still expected to leave the hospital, recover and feel like I had before (minus a colon, obviously). No-one had told me otherwise. The information booklet I’d had focussed solely on the intestine. So “back to normal” did not seem unrealistic in any way.
Are you newly diagnosed or do you have any advice for someone newly diagnosed?
A shift in mindset and perspective after diagnosis
There was definitely a change in my head because I had experienced so much in just 2 months; getting sick, getting diagnosed, a colonoscopy, two surgeries, a stoma, sepsis, and very dramatic weight and muscle loss, and there was a point that I thought I wasn’t going to recover. So, I was feeling both weak and strong at the same time, and very aware that life is short. That shifted my mindset and made me want to focus only on the good things and working towards where I wanted to be.
I was unaware that fatigue was a symptom of UC
I had initially thought that the fatigue I was experiencing was due to recovering from surgery, but months later, after I had recovered, was eating well and had returned to work, I was still very aware that my energy levels were not the same as they had been before. I think that was the first time that I actually looked for the information myself. That is when I found out that fatigue is actually a symptom of IBD.
I tried to continue with life as normal but ultimately ended up dropping my hours at work because I just couldn’t keep up. My UC having that kind of impact on my life had not been expected!
Additional health issues as a result of UC
As time passed, more and more health issues popped up that were related to my UC, such as anemia, psoriasis, joint inflammation, and depression.
Each time, I tried to adapt to fit what my health needed, and I think overall I have done quite a good job at still ending up in a place where I am happy and content, despite what my health has dealt me. Nevertheless, I cannot ignore the fact that where I am is a very long way from where I imagined I would be, way back before diagnosis – some of it for the better, and some of it for the worse.
When I was diagnosed, I really could not have imagined the impact that having UC would have on my life in the long term. I expected to be back to normal real soon, and my head tells me that’s not fair.
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