I was initially diagnosed with irritable bowel syndrome (IBS) when I was a child as I always had stomach aches and severe bloating. Then, in my last year of university the bleeding and incontinence started. This is when an emergency colonoscopy was arranged.
I was diagnosed with Ulcerative Colitis right there on the table while they looked at my bowel and I remember how bad my intestine looked on the screen. It was surprising to me how much damage was being done inside my body. The only obvious sign that I was ill on the outside of my body was my pale skin and tired eyes.
No one could see the intense fatigue and weight loss, or the damage to my wellbeing I felt on top of damage to the body.
Indigo
Living with Colitis
It was both a relief and a shock when I was diagnosed. I always knew something was wrong, but specialists couldn’t quite figure out what it was. Mostly I was just glad that I finally knew what was wrong, even if I knew that the journey to remission was going to be difficult.
I isolated myself from friends because I was terrified of having an accident if I left the house, and I quit my master’s degree course part way through. I wasn't able to stay awake during lectures, and I had to constantly leave to run to the bathroom. It left me with no drive and no focus.
On a positive note, I was very lucky to be in a supportive relationship which has stood the trials and tribulations of my condition.
Eventually I realised that I was unhappy with my quality of life and elected to have stoma surgery.
I was pleased to have it done as I knew it would improve things for me, but the recovery was really difficult.
Looking back, I initially pushed myself too far and too quickly, which resulted in a slower recovery. Those close to me helped with my shopping and housework so I could rest as much as possible, but I found this hard too.
I didn’t like giving up some of my independence to allow my body to heal, but I’m so grateful for the help I received. Having a great support network like mine is invaluable, and once I began my career I got this in the workplace too.
Having been through so much with my condition, I decided to start sharing my experiences with others.
Reading other people’s stories is what helped me at my darkest times, so I wanted to give back.
One of the most difficult parts of living with Crohn’s or Colitis is nobody being able to see the internal damage that the disease causes. This means it feels great when we find others who understand and are going through it too.
Sharing our experiences is a chance to make others see what we go through. It has been overwhelmingly positive for me. People appreciate my openness and my refusal to filter my experiences. And I benefit from being able to help others.
When sharing information, I want it to be as accessible as possible, so I turn to Crohn’s & Colitis UK.
The website is full of easy-to-understand information, and it really helps with the overwhelming experience of being newly diagnosed.
Visit our information pages
We have information about stomas, surgery, and many other topics relating to Crohn's and Colitis.
