"It all started with a swollen knee!" - Zara's Story

In this blog, we had the pleasure of chatting with one of our wonderful supporters, Zara, who has been living with symptoms of Crohn's Disease since the age of 17. Zara didn't experience what you may call 'typical symptoms' of Crohn's at first. Instead, her first indication that something was amiss came when she woke up one morning to find her knee swollen. Initially, she wondered if she had somehow injured it in her sleep, but the intensity of the pain left her puzzled, unable to pinpoint any other explanation.

Read on to find out more about Zara's journey to diagnosis, and how an X-ray prompted her to investigate further into what might be causing her symptoms.

My names Zara, I'm 25 years old and I love to cook! I used to be a chef and have always had a passion for food. I am a big gamer and enjoying streaming on twitch also.

My previous job was in recruitment however due to my recent surgeries, I left my role to focus on my recovery. Now, I am focusing on my twitch career and creating new videos to spread more awareness of Crohn's Disease and stomas.

My diagnosis journey began when I was awoken one morning to find my knee incredibly swollen. I genuinely thought I had broke my knee in my sleep! It was so strange. It was incredibly painful and the swelling was so severe I struggled to bend my knee whatsoever. I didn’t know what was going on. Due to the discomfort I was experiencing, I knew I needed to get myself to A&E to try and figure out what was going on. 

When I arrived at A&E, the doctors sent me to have an initial X-ray done on my knee to see if they could solve what was causing the swelling. The doctor told me it was a build up of fluid and it would need to be drained. I was puzzled as this had never happened to me before, and I had no explanation of why it just randomly happened that day. Upon further discussions with the doctor, he told me he thought it could be something underlying and referred me to both gastrointestinal and rheumatology. 

Honestly, I wasn’t sure what was going on! My mind was running through everything that had happened on the run up to that morning, trying to figure out if there was anything else that could help the doctors determine what was going on. I realised in the month running up to noticing my knee, I had felt very lethargic and fatigued all the time.

I had visited the GP and explained these symptoms at appointments and they weren’t too sure either. I started developing tummy cramps and the GP thought it could have been Coeliac disease as my Dad has it. But I tried removing gluten from my diet and that didn't help. It wasn’t gluten that was causing my sore tummy cramps. Coincidently, a cousin of mine also has Crohn’s Disease. I spoke to him to see if my symptoms were similar to his. We did share some symptoms, so I started to get more tests with the hospital to investigate further.

After multiple tests and scans over the next few months, I finally received my diagnosis of Crohn's Disease.

The news was a big shock for me. To be honest, I had never heard of Crohn’s Disease really before I was diagnosed. I wasn’t 100% sure what it was. I was surprised but also relieved to finally get diagnosed so I could start treatment. My IBD nurse was super helpful in the hospital, and gave me so much information on the condition. I was 17 at the time, so I immediately went to social media to read other people's stories and see if I could relate to them.


Living with Crohn's Disease

I tried a lot of different treatment options when I was first diagnosed. I was on around 12-16 tablets a day! After a while, it was reduced and I started a tablet called Azathioprine. However this didn’t last too long as immediately after I starting taking the tablet, I was throwing up. After this, I was started on Humira, the first biological. This worked for me for nearly 2 years, however I gained antibodies to the medication and had to start a new biological called Sterela. Unfortunately, this didn’t work for me, so I was then put onto Veto and referred to the surgery team as my Crohn’s was getting worse. 

Upon meeting with the surgery team last August, we decided it was the best course of action for me to have an operation. The original plan was to remove a section of my small bowel and reconnect it there and then. However, because my condition continued to get worse, I had no other option except to get emergency surgery and I woke up with a temporary stoma.

It was a complete shock. When I first woke up from the surgery, I’m going to be honest, I hated it. It’s not something I ever wanted and I couldn’t come to terms with it. It affected my mental health massively. It was a huge life change that I needed to adapt to fast. 

Since getting my stoma, I have experienced 2 blockages which hasn't helped. I thought getting the stoma would help me live a better life, but because I was so anxious about blockages and what to eat, I felt my condition was still holding me back. After the second surgery, they found my bowel had twisted around itself, and that's what was causing the blockages. It wasn’t anything I was eating which was a relief. After that things started to get better. I felt better, I could eat better, go out again and feel good. 

After the second surgery, they found my bowel had twisted around itself, and that's what was causing the blockages. It wasn’t anything I was eating which was a relief. After that things started to get better. I felt better, I could eat better, go out again and feel good. 

To someone who may not have heard of Crohn's Disease, I'd describe it as a number of factors. It isn’t just you eat something and then you run to the toilet. It affects your joints, eyes, skin and many other parts of the body, and I don't think many people realise that. It’s not a case of you eat something that doesn’t agree with you, you learn you need to stay clear of it and now you’re okay. There are times when I eat stuff perfectly fine and the next day I can’t touch it.

I have found it really difficult to come to terms with my stoma and my new body, but I continue to be a massive advocate for those living with Inflammatory Bowel Disease. I shout as much as I can about the conditions to raise awareness. 

I have recently started a YouTube channel and created a TikTok profile where I share my experience and story to help others living with a stoma and/or Crohn's. I hope this helps other people so they don't feel alone in their progress. My dream is to build this content to help more and more people struggling with this disease. I have been inspired by so many people on social media and it has helped me a lot to be more confident with a stoma.

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