From Healthy to Ulcerative Colitis
Last updated: February 2023
First of all, I would like to give a big warm welcome to ME! I am really excited to be part of the amazing community advocates team at inflammatoryboweldisease.net!
I thought a good place to start would be at the beginning, so I wanted to talk a little bit about diagnosis.
The start of ulcerative colitis symptoms and pain
My diagnosis journey was very short. I remember the first day of my symptoms very well, as I was actually on a 3-mile walk that I only did a once a year to an annual Agricultural show. There were no toilets on route, so the walk was brisk rather than leisurely!
Over the next few days, I had experienced some mild abdominal cramps and more frequent bowel movements, which increased gradually up until day 6 of symptoms, when I'd had to leave work early to be close to the toilet. The next day I went to a GP who instantly diagnosed me with IBS and sent me on my way with some antispasmodics.
The pain increased to a point where I no longer wanted to eat, because I thought it made the pain worse. I slept all of the time and only woke up when the stabbing pain in my left side made me. That was my cue to run to the bathroom, where blood and mucus poured out of me into the toilet bowl. The pain made me literally sweat, so I would return to bed, lay in front of the fan and go back to sleep until the next wave of cramps got me again.
By day 13, I had lost 11lbs. I called the GP again and arranged a home visit. When they arrived, I struggled to even get down the stairs to open the door because my body was so weak and tired. I was prescribed some herbal tablets and told to call again in a week if there had been no improvement. I never got a chance to make that call, or to start the medication.
A diagnosis of ulcerative colitis
After hearing me get up and down all night again, my mum got up in the morning and asked our neighbour to drive us to the hospital. I was seen very quickly, and I nearly fainted when my first ever cannula was inserted; I needed fluid for the dehydration. Shortly after, I was taken for a colonoscopy, and not long after that I was told I had Ulcerative Colitis.
I was given Asacol (mesalazine), IV Hydrocortisone, and a booklet about ulcerative colitis. The booklet basically told me that with the right medication, and possibly a few diet changes, I should be able to live an ordinary life. Relief washed over me, because I had a diagnosis, and because I was going to get better!
I didn't get better, and less than a week later I had emergency surgery, my colon and rectum removed, and a stoma. I'll leave the story there for now.
Misdiagnosis with ulcerative colitis
I frequently hear from other patients about their long hard journey to diagnosis, and so part of me feels very lucky to have been diagnosed so fast. I know people who went undiagnosed for years, sometimes into double figures. Some misdiagnosed with IBS or food intolerances. Some, even being accused of making it up, or having an eating disorder.
Don't get me wrong, my diagnosis was very traumatic for me. I had never had more than a cold or a 24-hour bug before I had ulcerative colitis, and I had very little time to process having a life-long, chronic illness before being whisked off for surgery. That said, I know how traumatic it's been for other patients to suffer for many years, feeling like no one's listening or taking you seriously. Sometimes even beginning to believe that maybe it is all in your head.
Connecting with others in the IBD community online
I consider myself very lucky to be able to find and connect with other patients online. I love hearing about their journeys and learning from their experiences.
When I was diagnosed, I didn't have the internet, and I had no will to discuss bowel habits with anyone. How times change...
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