independent

Monday 18 June 2018

Unbreakable Clara's quest

Clara Caslin talks to John Manning about her journey from being given last rites as a teen to being a passionate advocate for Crohn's patients

IBD patient Clara Caslin from Rolestown, Specialist IBD Nurse Angela Mullen and IBD patient Aoife Mulhall
IBD patient Clara Caslin from Rolestown, Specialist IBD Nurse Angela Mullen and IBD patient Aoife Mulhall

Clara Caslin from Rolestown was at death's door twice as a teenager and had the surreal experience of having a priest give her the last rites in an A&E room at Beaumont Hospital but now as she approaches her 25th birthday, she is healthier than she has ever been and fighting for the rights of her fellow Crohn's disease patients who are desperately in need of more specialist IBD (Irritable Bowel Disease) nurses.

The first indications Clara had that something was wrong, came in pretty dramatic fashion for the then 12-year-old girl.

Now close to her 25th birthday, Clara remembers: 'I was 12 when I first developed symptoms. It was a lot of bleeding and when I'd go to the toilet, I'd bleed from the bowel. It was crazy for a 12-year-old to see that and I said to myself: 'What's going on here?'.

'But I never really said anything about it. I think I mentioned it once and I was taken to the doctor but it wasn't too bad at that stage and he said it's fine and just kind of bypassed the issue. That was really the only symptom I had from 12 to 17.'

It was something that came and went and Clara decided if the doctor did not worry about it then neither should she.

But around the age of 17, things took a turn for the worse. Clara said: 'I started to develop other symptoms like abdominal cramping, fatigue and weight loss - I went from 57 kilos to 43 kilos. I was 6 stone, 7lbs but 5ft 7" so I was very underweight. I couldn't eat anything. I was eating literally a quarter of a piece of toast a day.'

She continued: 'The June after my Leaving Certificate, I was 18 then. I would feel very bloated and I wouldn't eat and I kind of ignored that as well but if I pushed in on my stomach I would get this jumping reaction, it was so painful.

'I still ignored it even though everyone was asking me what was wrong with me. They thought I was depressed or anorexic, but I wasn't depressed and I love my food. I think a lot of people put it down to exam stress.'

But then something happened that even Clara, could no long ignore. She explained: 'I got a perianal abscess which is basically an abscess on your bum cheek so I couldn't avoid the doctor anymore. I went to the doctor on the 19th of December and they gave me two antibiotics because I didn't want to go to the hospital.

'The antibiotics didn't work at all so I had to go back to the doctor on the 23rd and at that stage, I was very ill.

'So I had to go to the hospital that day and was immediately prepared for surgery.'

The surgery came just in time, according to Clara: 'I went to the theatre and they drained 100mls of poison out of me and told me I would have died on Christmas Day if I hadn't come in.

'They told me I would have got septicaemia and the poison would have ran through my bloodstream and I would be gone. I was just so sick at the time, I didn't really react at all. I just thought well I'm alive now, I didn't die.'

Explaining her fear of hospital that made her ignore her developing symptoms, Clara said: 'I lost my dad when I was 15. I was so afraid of the doctor and so was my dad and I was scared of being told I was going to die. I associated the white coats with death. You would think I would want to go in early when something was wrong with me but I was just in complete denial.'

She left hospital on Christmas Day but it would not be for long and a second brush with death awaited the then teenager.

Clara remembered: 'It was the following March that I had to go back to the doctor again because I was really sick. My temperature was nearly up to 40, it was that bad. And this time I was walking with a limp because there was an abscess on my psoas muscle so I had to go to the hospital again. They did a scan on me and I couldn't put my legs straight, that's how sore my legs were. I got the scans done and they found an abscess the size of a melon that was basically blocking all of my organs on this side.

'A priest had already given me the last rites in A&E which is crazy. I was like: 'What's going on?' I didn't actually realise what it was at the time.

'I was put into another little room and the surgeon who had done my surgery in December came in and a Registrar who I knew, and he said there was three options for me and he said he didn't know if any of them would work. I asked him if I was going to live, and he said: 'I don't know'.'

By this time, Clara had gotten over her fear of hospitals and knew that when it comes to a matter of life and death, she was in the right place. She said she now chose 'fight rather than flight'.

And fight she had to because doctors discovered two intense strains of infection in her body that resulted in 15cm of her bowel being removed. Doctors also found a fistula near the site of her previous surgery, which Clara explained is essentially 'an abnormal connection between two organs'.

The unbreakable Clara Caslin recovered again, slowly but surely and it was only after that crisis subsided that doctors made a firm diagnosis of her underlying problem, Crohn's disease.

That was just after her 19th birthday. It had been mentioned as a possibility before so Clara had educated herself on the disease and set about dealing with her new found reality but at least now, she could put a name on what she was facing and her health, and her life started to finally hit an upward curve.

A crucial element in those early days of dealing with her diagnosis was being introduced to her IBD (Irritable Bowel Disease) nurse. These kind of nurses specialise in supporting patients with Crohn's and colitis. There are only 14 in the country right now and since last year, Clara has played an active part in a campaign to double their number to 28.

She said: 'I met the IBD nurse then and she talked me through the medication I would have to take and gave me information about the medication and told me I would have to have regular blood tests.

'I was on the medication for five years but I'm off it now since last July. I'm in remission but they still keep an eye on it and I have to manage my diet a bit.

'I try to stay away from very fatty foods, greasy foods, spicy foods and creamy foods. I still eat thought - it's about clean and fresh foods. You can still have your roast dinner but just don't pour a ton of gravy over it'

Asked why she decided to put herself out in the public eye to support the ISCC campaign to double up on the number of IBD nurses in the country, Clara said: 'I've never been shy in talking about it. I think I just got over all that very quickly and I think it's something that shocks people - how open I am about it.

'If me talking can give someone a bit of useful information then I'm fine with that. There is still a 'poo taboo' and people definitely don't like to talk about their bowels or going to the toilet. People just pretend it doesn't happen.'

Talking about how important her IBD nurse is in her own life, Clara said: 'My Crohn's nurse is so important because if I have an issue or question or I'm worried or a little bit anxious about something, or I need a blood test sheet, she saves me going into the clinic.

'It can also save you from going into A&E where you are sitting among people who are sick and might give you an infection because most of us are immuno suppressed so we're susceptible to picking up these things. So I just can't imagine being without an IBD nurse.

Clara called on the Minister for Health to make to deliver 14 new IBD nurses across the country and she does not think that is too much to ask.

She said: 'The ISCC met with Simon Harris in November so it's been six months now and he had said he didn't see any reason why there shouldn't be 28 IBD nurses but nothing has been done about it.'

Clara added: 'I'd ask him why these nurses haven't been hired. Why are all these people who need nurses and they are going though all this unnecessary anxiety.'

You can read more about Clara on her blog at ClaraCaslin.blogspot.ie

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