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Column: 'While my friends were out enjoying a busy social life, I received my last rites'

There needs to be more awareness to help people better understand the symptoms of IBD, writes Clara Caslin.

Clara Caslin Living with IBD

MY ROUTE TO diagnosis began in September 2011. I had an extreme fear of the doctor, which made me hide the fact that I was sick.

My symptoms started when I was 12. I was suffering with extreme cramps, fever, diarrhoea, and blood would pass when I went to the bathroom. At age 18, I developed a perianal abscess and I was forced to go to the doctor because I couldn’t pass anything from my bowel.

On 23 December 2011, I was admitted to A&E and prepped for emergency surgery. The surgeons drained 100ml of poison from the abscess and I was told that I would have died on Christmas day if I had left it any longer.

Searching for a diagnosis 

In March 2012, my weight had dropped rapidly by ten kilos. I developed a limp and when I felt a large lump in my stomach I knew it was time to seek help. Following numerous scans, the doctors found a mass the size of a melon in my psoas muscle, which was blocking all my organs.

The surgeon told me that they had three options for me and that there was no guarantee any of them would be successful. I asked him if I would live and he said, “I don’t know”. While my friends were out enjoying a busy social life, I received my last rites.

Throughout the following few weeks, I was in and out of hospital, still without a diagnosis. I had a drain fitted internally for two weeks to drain out the poison from the abscess in my abdomen.

I was discharged then re-admitted when the mass returned. I was put on a feed called TPN (Total Parental Nutrition) and marked up for two stoma bags on the morning of major surgery, which included a bowel resection. After a seven-hour surgery, I was brought back to the ICU with wires and tubes coming out of my body, but thankfully no stoma bag.

Inflammatory bowel disease

The subsequent weeks were tough. It would take me fifteen minutes to sit up, and I was unable to eat, wash or walk. My hair had started to fall out and my weight continued to drop. I was six and a half stone and couldn’t walk properly.

I started to improve daily and was sent home after being in hospital for a month. It didn’t last as I returned after a few days. My temperature spiked and it was back up to 39.5. I was admitted and put into isolation as I had contracted the hospital bug Clostridium Difficile but thankfully after three weeks, I was discharged and haven’t been admitted since.

With Inflammatory Bowel Disease (IBD) you can look perfectly fine but feel like you’re dying on the inside, which can be frustrating because people think you’re being dramatic.

An invisible illness

It is an invisible illness. There needs to be more awareness to help people better understand the symptoms. It can affect your social life because you could be having a flare up and need to be constantly near a toilet.

It can make you very anxious. Fatigue can cause you to cancel plans last minute. You can feel so drained that you can’t leave your bed.

My life line throughout this experience has been my specialist IBD nurse. If I have any questions, need blood test sheets, prescriptions, a chat about something that is worrying me, my IBD nurse is a phone call away.

I would be extremely lost without her and I think that living with a chronic illness would be very different for me if she wasn’t around since diagnosis. There needs to be more awareness about IBD because I didn’t know what it was when I was diagnosed. I had never even heard of Crohn’s before.

I think that people living with IBD need to be made aware of support groups and the Irish Society for Colitis and Crohn’s (ISCC) because it provides huge comfort and support speaking to people who have gone or are going through the same things as you.

Clara Caslin is 18. Approximately 40,000 people live with IBD in Ireland. Please visit the ISCC website at iscc.ie to support the campaign and sign the petition.

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About the author:

Clara Caslin  / Living with IBD

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