Questions and Answers with Crohn's Disease Patient Ruth Nugent

By Clara Caslin

Ruth Nugent studied Geomatics (surveying and mapping) in the Dublin Institute of Technology in Dublin. She graduated in 2016 with a second class honours BSc, which she says was one of her best achievements to date. She was in one of her worst flare up of her Crohn's at the time. Ruth left university qualified in land surveying. She currently works for ESB Networks where she is following a career in mapping. She also competes in motorsport in her spare time.

Ruth Nugent

When did Crohn's symptoms start for you?  

My Crohn's Disease symptoms started when I was around 14/15 years old but during the years of 18 to 20 years old, they got progressively worse. I had a vitamin B12 deficiency and some food intolerances from the age of 15 but it wasn't until I was in college that things started to get worse. That was when I decided to start seeing a gastroenterologist for tests to see if there was anything wrong. 

How old were you when you were diagnosed?  

I had just turned 21 and was in my third year in college when I was diagnosed with Crohn's Disease. I had never heard of it before and was terrified. I was put on a course of steroids and wasn't given any more information so it was a tough time trying to come to terms with the diagnosis. I joined the ISCC (Irish Society for Colitis and Crohns Disease) and met other patients and IBD nurses through meet ups and that was when I started to see that there were so many other young people and younger as well as older that had Crohn's or Colitis. 

I met people who had Crohn's since they were a baby, some who had colostomy bags, some who were newly diagnosed like me and even family members who wanted to learn more about the disease. The ISCC helped me a lot with coming to terms with living with Crohn's and I'll always be incredibly grateful for them. I also had huge support from my parents who were willing to go anywhere and do anything to help me physically and mentally. 

What were your symptoms?

My symptoms vary but at my worst stages in the disease my most common and debilitating symptoms included needing the toilet between 4-8 times a day including loss of blood, severe stomach pain, extreme fatigue, mouth ulcers, very bad acid reflux and a variety of other symptoms linked to malabsorption issues. 

How active has the disease been since you were diagnosed?  

I had a few bad flare ups but during 2018, it seemed to get worse very fast. It was my first year in motor racing and I had a few other big things going on in my life so it may have been triggered by stress. I had been trying to manage it through diet and the odd course of steroids until late 2018. I was put on a harsh course of steroids because I was too sick and they made no change whatsoever to the symptoms. This was when my consultant decided to back track through all my blood tests and colonoscopy results over the previous three years to decide a proactive route of treatment. 

It was around this point that it was starting to affect my daily life. I was losing my appetite, limited to what I could eat, losing blood daily and fed up of being in pain and exhausted all the time. I was missing more days in work and found myself more self conscious around people and worst of all trying to explain to anyone what was going on with me.  

What is it like living with Crohn's?

I can't really remember what it's like to not live with Crohn's Disease even though it's only been a few years. The diagnosis completely changed my perspective on a lot of things and changed my outlook on life a little, as dramatic as that sounds! Every day, I deal with one symptom if not a few. On very bad days it can be hard not to let it mess with my mood and sometimes feel a little "why me?".  I have had to have the odd cry, I don't think there's any shame in admitting it. Sometimes, I celebrate achieving things in every day life that may seem small to others because I would have had to push myself to get through it whether it's marshalling at a race, going out on the bike, racing the car when I'm unwell or sometimes simply going to work and getting through the day. 

It can be extremely tough mentally, as well as physically, because all I want to do is keep going and to stay busy and happy but sometimes my body can't keep up. I have learned a lot from other patients lives and following some badass people living with Crohns on social media who are living their best lives! The support my family and friends or even strangers online have given me has influenced me to keep pushing to live as normal as a life as I can and most of the time it is just that. Just add in the mini pharmacy on me everywhere I go and the mental map of where every toilet is at every venue!

What would you say to someone who has just been diagnosed? 

Your diagnosis/illness DOES NOT DEFINE YOU. This is what I firstly had to learn because automatically I felt I was going to be labelled the girl with Crohn's and to some I may be! To me, Crohn's is just a small element of my life that I've learned to use to shape me for the better. I would say not to panic, that there are so many treatments available, not to be embarrassed - you have NOTHING to be embarrassed about. You're a bad ass person who yes, has a bowel disease but you are still you. Find your own way of describing Crohn's disease so you're comfortable to tell whoever you may need or want to tell. Sometimes words like "bowel" or "disease" may make even you cringe so you can always use other words like "digestive illness" or "autoimmune or chronic illness". Please, please, please talk to people about how you're feeling. The diagnosis can be very daunting and you're allowed to feel confused, scared, lonely or absolutely anything you want to feel!

Have you had surgery? 

No, I have been one of the very lucky Crohn's patients who has not had to have surgery yet and hopefully never will. I am friends with a good few patients who have however had surgery and thanks to them, if I was to every face that road, I feel like I could face it with knowledge and support. Everyone I know who has had surgery has said it has either changed their lives for the better or in fact saved their lives so I definitely don't see it as a negative thing!

Have you had to change treatment because it stopped working?

Yes, I stopped responding to any form of steroid treatment so I am now on biologic therapy, which I receive every eight weeks through infusions. It is an artificial antibody drug that is used to treat autoimmune diseases. I'm now four months on this treatment and I'm the closest to feeling "normal" than I've ever been in about eight years!