Monday 22 April 2019

Woman with Crohn's disease (32): 'I lived in constant pain and couldn't put on weight'

After a decade of distressing symptoms, Rachel Casserly was finally diagnosed with Crohn's disease. She's one of 40,000 Irish who's had to cope with Inflammatory Bowel Disease

Rachel Casserly has learned to manage Crohn’s disease. Photo: Andrew Downes, XPOSURE
Rachel Casserly has learned to manage Crohn’s disease. Photo: Andrew Downes, XPOSURE
Inflammatory bowel disease

Arlene Harris

We've all suffered from stomach pains, cramps and diarrhoea at some point in our lives - but up to 40,000 people in Ireland deal with it every single day as a result of Inflammatory Bowel Disease (IBD) in the form of either ulcerative colitis or Crohn's disease.

Both conditions cause ulceration of the digestive tract and are life-long diseases in which people will experience bouts of remission when symptoms are less active and periods of relapse when the condition flares up, explains Professor Colm Ó'Moráin, who is Dean of the Faculty of Health Sciences at Trinity College. "Both conditions cause symptoms like urgent and persistent diarrhoea, vomiting, severe stomach pain and extreme fatigue."

They're symptoms that are all too familiar to Rachel Casserly, who was diagnosed with Crohn's at the age of 26 but suffered for over a decade believing that she had Irritable Bowel Syndrome (IBS) and trying to change her diet and lead a less stressful life.

Now 32, the Galway native says she was very angry when she was first diagnosed as she had spent so much of her life in unnecessary pain.

"Ever since I was a teenager I suffered from almost constant stomach pain," Rachel says. "I would also have had very regular bouts of diarrhoea and just couldn't put on any weight. I was totally malnourished and every time I went to see a doctor, I was told that I must have IBS and should look after myself better.

"I was so thin, in so much pain and was also very low on B12 and iron while getting constant infections. I also vomited a lot which isn't necessarily a symptom of Crohn's and I think that is one of the reasons why they were so reluctant to test me for it."

Her teenage years were blighted with the pain and discomfort of the condition and Rachel says it made life very difficult.

"Having Crohn's disease totally impacted on my life in a very negative way," she says. "I was always in pain, particularly after eating, and when doctors pointed out that I needed to eat more, I had to keep reiterating the fact that it caused me too much discomfort. I was both physically and emotionally damaged after years of pain.

"I was underweight and undernourished for most of my life, I was weak, in pain and was totally consumed by the fact that I would never know when the really bad pains would start or stop - so the unpredictability of it, combined with the fact that no one knew what it was, caused me a lot of stress."

Eventually, Rachel, who works as a café manager, collapsed and was rushed to hospital, where she was finally diagnosed with IBD.

"Six years ago the pain came to a head and I was literally screaming with the intensity of it," she says. "My stomach was totally bloated and I looked like I was pregnant - it was so frightening and I was taken into the emergency room where an X-ray was done on my stomach, followed by a CAT scan and an MRI. The doctor said straight away that it was suspected Crohn's as my whole small intestine was severely damaged and there was a massive blockage there.

"They couldn't do a colonoscopy there and then as I was too sick but they were pretty sure, and when they finally managed to do it, Crohn's was confirmed. And it was such a relief to finally have a name for the excruciating pain which had marred my life for such a long time."

After diagnosis, Rachel remained in hospital for over a fortnight, as she was put on medication and doctors tried to help her to gain some weight.

"I spent 15 days on the ward where I was put on steroids and antibiotics and as I was so weak and malnourished, they had to do all they could to try and get some weight on me," she says. "Afterwards I had to take seven weeks off work before I was fit enough to be back on my feet and at that point I was in the best health I had been in years - maybe my whole life."

Now on regular medication and keeping a careful eye on her diet, Rachel says it is important for people to be aware of IBD and to persist in getting examined until they are satisfied with their diagnosis.

"I've been through a lot over the years but I am feeling so much better these days and while I'm not on a particularly special diet, I do know that too much fibre, or anything which is difficult to digest, is a trigger for me," she says.

"I have thought about giving up the medication and eliminating things like gluten and dairy from my diet, but I did try that last year and, to be honest, it's playing with fire.

"I don't really think I can live without medication and my diet is limited enough already without cutting other things out, so I think I will just keep on as I am.

"My friends, family and boyfriend have been an amazing support and I feel incredibly lucky to have been diagnosed and to be able to get on with a normal life, but in reality I shouldn't have had to wait so long to get proper treatment.

"So my advice to anyone else who thinks they might have something like this would be to keep fighting, change doctors if you don't feel they are listening - we all know our own bodies better than anyone else.

"It's important not to give up hope and to keep talking about IBD, it's not something to be ashamed of and the more open we are about it, the easier it will be to get help."

Lyndsey Cusack, operations manager for the Irish Society for Colitis and Crohn's Disease (ISCC), says that while every case is different, there is plenty of help available to most people with IBD.

"Remission can be achieved in most cases and can last for anything from weeks to years," she says. "No two cases are the same and no one treatment will work for everyone. You cannot therefore predict the course of your disease, nor can you compare your treatment or outcome to that of another person.

"The ISCC offers telephone support, information leaflets and lobbies on behalf of IBD patients and we organise public meetings throughout the year for patients, their families and friends, with the opportunity for them to interact with healthcare professionals in an informal setting."

A new campaign from the ISCC hopes to highlight the plight of IBD sufferers and make the public aware of the need to recognise their 'No Waiting' bathroom passes and allow them rapid access to public facilities as for some sufferers this can be a very real and very stressful aspect of their condition.

"My advice would be always be prepared as possible - find out about available bathrooms before you visit somewhere and check out menus before you eat as some foods can trigger cramps for people," says Cusack.

"And if you need the toilet, be as honest as you can. Generally, the reason to be declined the use of a bathroom is due to a lack of understanding from business owners. So by being honest about our conditions we are actually raising awareness and education others too."

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What you need to know about crohn's disease & colitis

Inflammatory bowel disease

• Crohn's disease and ulcerative colitis fall under the umbrella term of Inflammatory Bowel Disease (IBD).

• About 40,000 people suffer from IBD in Ireland.

• Both diseases can be progressive with complicated presentations that can lead to successive radical surgeries. Surgery often involves the removal of some or all of the small/large intestine and/or rectum, and can lead to the use of a stoma appliance.

• The peak incidence of these diseases is between the ages of 15 to 35, with a second peak incidence between the 50s and 70s.

• There has been a 90pc increase of childhood IBD in Ireland between 2002 and 2012.

• Symptoms include abdominal pain, frequent diarrhoea and weight loss, extreme tiredness, vomiting, fever and anaemia due to blood loss.

•There is currently no known cause or cure for IBD, so early diagnosis and active and early treatment can help to decrease the risk.

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