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Sophie’s Young Diagnosis Story: Age 11

Diagnosis: Crohn’s Disease

Year of Diagnosis: 2005

Age at Diagnosis: 11

Place of Diagnosis: Birmingham Children’s Hospital

Hi there my fellow IBD’ers, I’m Sophie but everyone simply calls me Soph. I’m 25. I grew up in a small village in Worcestershire, which I still call home, along with my fiancé and our dog, Rex.

I had quite the journey to get my Crohn’s Disease diagnosis. Diagnosed at age 11, I do not remember much from this time as I was wiped out with pain. Nevertheless, I do remember how traumatic this time was for me, being so young.

For over 12 months I battled with stomach cramps, sickness, diarrhea and fatigue. I will be completely honest and say that my mood was also wholly affected. If you caught me on a bad day (usually linked with my pain levels), I was not the best to be around. I would cut many family and friend events short because of my mood. How is an 11 year old supposed to deal with and explain the type of pain I felt?

My doctors at the time were not very helpful. Passed from pillar to post, seen by many doctors and nurses, they tried to assess exactly what the cause of my symptoms were. I was turned away from appointments told I had viral infections, appendicitis, gastroenteritis – it even got to the point where one doctor questioned my honesty about my pain. They were convinced that I was ‘just having a hard time at school, perhaps being bullied, and looking for a way out’. So bad right?

Finally, I saw a new doctor. I will call him Dr A. He listened to my symptoms and examined my stomach. At that moment, I could almost see a light bulb switch on in his mind. He mumbled ‘I think this is Crohn’s’. After that appointment, it felt like a whirlwind. I was referred to a consultant at the Birmingham Children’s Hospital, put through lots of tests from endoscopy, colonoscopy, and a barium x-ray. Doctor A was correct, and he knew from the very first appointment that I was affected by Crohn’s Disease.

For so long I doubted myself, I could not comprehend what was happening. My emotions were everywhere. At 11, I was faced with a diagnosis of an illness I really did not understand. I was scared. Although I felt alone, I took it all in my stride, I didn’t let it get me down. I battled on.

I spent a lot of time in the Birmingham Children’s Hospital, prescribed Azathioprine, Prednisone and Infliximab infusions. In all of this, my biggest challenge was fitting back into school. I had a lot of anxiety about what others would think of me, would they accept me back in. Was I going to have the same friendships? Thankfully, my friends and school teachers were supportive. My team of consultants also introduced me to the Crohn’s and Colitis UK charity, which gave me a lot of helpful information and helped me to explain my condition to others. I settled back into normal life quickly.

14 years ago, I did not have access to support groups, I did not have social media and I was left to navigate my condition by myself. These days, we have support in abundance. There are lots of us bloggers and Instagrammer’s who are sharing experiences, tips and tricks. If I had this in the early stages of my diagnosis I truly believe it would have made such a positive difference.

If I could change anything about the process of my diagnosis, it would be that it happened much quicker. But, wouldn’t everyone like that? If I am to give advice to anyone who is in the process of being diagnosed, it would be to keep pushing. Be tenacious and make sure you are fully open in describing your suffering in every area – keep a diary, note everything down.

Use your social media to get support from others who are on a similar journey, find inspiration from various accounts. I have met and spoken to so many inspirational people, all whom I can relate to. I truly believe it opens your mind to think differently about what beautiful means. It has given me such a boost for my body confidence. If you are worried about posting your journey, worried about what your family and friends may think, set up a secondary account for your journey. Talking and posting about IBD is our super power, we can spread awareness, you never know just how much of a positive impact you may have on someone.

Last but not least, don’t give up. We are in this together.

Top tips:

  1. Ask for support and let those close to you know how you want to be supported.
  2. Keep going. If your diagnosis is taking a long time, keep pushing your doctors and nurses.
  3. Be open to learn. Read up on IBD, use resources online as this will go some way to help feel in control.
  4. Social media. Use your platforms to raise awareness and to build an online community of support. There are lots of us on this journey with you.
  5. Positive mind-set. You are a fighter and you have a lot to give. Don’t give up.

Soph x

Crohnswithme.com

@crohnswithme

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