‘I asked my surgeon if I would live and he said he didn’t know’

The first signs of Clara Caslin’s Crohn’s disease were stomach cramps

 Clara Caslin, a 23-year-old student: ‘I knew that something was seriously wrong but I tried to hide it because I was afraid of the doctor.’ Photograph: Alan Betson

Clara Caslin, a 23-year-old student: ‘I knew that something was seriously wrong but I tried to hide it because I was afraid of the doctor.’ Photograph: Alan Betson

 

In September 2011, I started suffering from extreme stomach cramps, diarrhoea and fever which, over time, continued to get worse. I knew that something was seriously wrong but I tried to hide it because I was afraid of the doctor. My symptoms of Crohn’s disease started when I was 12. I noticed that I would sometimes pass a lot of blood when going to the toilet but ignored it.

In December 2011, my weight had dropped rapidly because I couldn’t eat without suffering excruciating cramps and diarrhoea. People thought I was suffering from depression and an eating disorder because I was no longer the bubbly girl they knew.

I developed a perianal abscess and was forced to go to the doctor because I couldn’t pass anything from my bowel. I was brought to A&E on December 23rd, 2011, where I was admitted immediately and prepped for emergency surgery. The surgeons drained 100ml of poison from the abscess and told me that I would have died on Christmas Day if it had been left untreated.

I was discharged on Christmas Day but things continued to get worse. I had extremely painful dressings changed every day in the open wound from surgery for three months. I would arrive at my appointments in the hospital with a full face of make-up and put on a show for the doctors pretending that I was feeling better.

In March 2012, my weight had dropped to 43 kilos. At 5’ 7”, I was very underweight. I began to develop a limp and when I felt a large lump in my stomach I knew that I had to seek help. I was rushed to Beaumont Hospital and sent for numerous scans which showed a mass the size of a melon in my psoas muscle, blocking all of my organs. My surgeon told me that they had three options for me and there was no guarantee that any of them would be successful. I asked him if I would live and he said, “I don’t know.” Shortly after that visit I received my last rites.

A drain was fitted internally for two weeks to drain out the poison from the abscess in my abdomen. The CRP levels (which is the marker of inflammation) in my blood were over 600 and normal is between 2-10. I also had E.coli and strep G in my blood. After three weeks, I was discharged but after a few days I knew that the mass was back.

The next day, I was brought straight to the ward where I was prepared for surgery. I was put on a feed called TPN and marked up for two stoma bags. After seven hours in theatre, I was brought back to the ICU unit. It’s all a blur because I was on a morphine pump but I remember wires and tubes were coming out of my body everywhere and that the surgeon told me that I had no stoma bag. For weeks after the major surgery, which included a bowel resection, I struggled. It would take me 15 minutes to sit up and I was unable to eat, wash or walk. My mam was brilliant. My dad passed away when I was 15 so it was hard that he wasn’t around as a support for my mam, brother and me.

Then I had an adverse reaction to medication; I was vomiting non-stop and couldn’t hold anything in my bowel. My hair had started to fall out, I was 6½ stone and I wasn’t able to walk properly.

Slowly, I started eating some toast to see how my stomach would react and just when I thought that things were improving I got bad news about my white blood cells. A surgeon came around and mentioned leukemia and having to open me up again. The next day my white cells had increased slightly. After that setback, I started to improve daily and they felt that they could send me home after being in hospital for a month.

Unfortunately, I had to be re-admitted again and put in isolation because I had contracted Clostridium Difficile. However, I improved and got my appetite back, for the first time in a year.

After having an MRI scan on May 25th, 2012, my surgeon told me that I’d won the battle and could go home. Since then, I’ve had four surgeries because they found that I had a fistula. I had my final surgery in May 2014 and I haven’t been admitted to hospital since. Soon after I was released, I developed alopecia areata, which is a type of hair loss but my hair eventually grew back where the bald patches were. I have to take autoimmune suppressants every day and have days when I struggle with symptoms of inflammatory bowel disease (IBD) such as nausea, cramps, loss of appetite and diarrhoea. I also suffer with anxiety and fatigue. Living with Crohn’s can be extremely challenging but I feel blessed to be alive. I no longer have my fear of going to the doctor.

A few months ago I started personal training at the Ben Dunne gym in Northwood, Santry, with Marcus Bertels and he has helped me gain confidence in being able to exercise, which is something that I didn’t think I’d be able to do again. I’ve changed my diet by cutting out anything that I know isn’t nutritious and the benefits that I’m feeling in my body and mind are unbelievable.

It’s amazing seeing your body change before your eyes and you know it’s working when other people notice it too. After each session, I get stronger and my stamina has come on in leaps and bounds. My energy levels have also improved so much.

Every case of Crohn’s is different, some people are able to exercise and some are not but I’m so thankful that I’m able and it’s helping me tremendously.

Clara is a journalism student at Dublin City University. Follow her blog – Chatterbox Clara – at claracaslin.blogspot.ie

What is Crohn’s disease?

Crohn’s disease and ulcerative colitis affects about 20,000 people in Ireland. Men and women are equally affected and can be diagnosed at any age. The peak age of occurrence is between the ages of 15 and 35 with a smaller peak at around 50-70 years old.

Ulcerative colitis affects the large intestine and Crohn’s disease can occur in any part of the gastrointestinal tract from the mouth to the anus. The symptoms of inflammatory bowel disease (IBD) are different for each person depending on the extent and depth of inflammation and also the area of the intestine that is affected. The signs and symptoms of Crohn’s disease are abdominal pain or cramps, persistent diarrhoea, fever, vomiting, anemia and fatigue.

The exact cause of Crohn’s disease and ulcerative colitis has not yet been discovered. An unknown factor triggers the body’s immune system to produce an inflammatory reaction in the intestinal tract that continues without control which, in turn, leads to the symptoms.

It can develop after a gastrointestinal infection and there are a number of factors that may set it off including genetic, hormonal, psychological and dietary factors. Stress and depression are also known to contribute to flare-ups. IBD is treated with immunosuppressive agents, steroids, stool bulking agents, anti-inflammatory agents and, in some cases, surgery is required.

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