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woman at the top of a rollercoaster made of intestines before the drop

From Healthy to Ulcerative Colitis

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 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 is so common 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 24hour 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-ones listening or taking you seriously. Sometimes even beginning to believe that maybe it is all in your head.

Connecting with others 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…

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • mjwright196944
    2 weeks ago

    Sounds exactly like my experience and diagnosis, to a T! Minus the surgery. I still have my colon and have since been diagnosed with Crohn’s disease. Good luck and health to you

  • crystal.harper moderator
    2 weeks ago

    Welcome to the team!! I’m fairly new on here too and just wanted to say thanks for sharing your story. I’m looking forward to reading about the rest of your journey.

    Best, Crystal

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