Gut health advocate Amy Kelly played down painful symptoms before being diagnosed with Crohn’s disease

Amy Kelly, gut health advocate and director of the Irish Colitis and Crohn’s Society, planned her wedding around her diagnosis of Crohn’s disease because the unpredictability of the disease means campaigning preparedness has become the one of Amy’s ways to cope with her IBD – Inflammatory Bowel Disease.

Not to be confused with IBS, or irritable bowel syndrome, IBD includes Crohn’s disease and ulcerative colitis which cause chronic inflammation of the digestive tract. SSymptoms of IBD include fatigue, bowel problems, rectal bleeding, weight loss, high risk of mouth ulcers and abdominal pain that can totally derail daily life.

Amy was diagnosed in 2019, but shared that while the warning signs were there, she and medical professionals attributed her symptoms to other factors.

Amy suffered from a number of health effects including ulcers in her mouth, blisters on her eyes and abdominal pain. However, she always found ways to minimize her symptoms and move on, as many IBD sufferers do.

Ultimately, Amy ended up in hospital, as the pain in her abdomen became excruciating and she lost consciousness and passed out on her way to the emergency room.

“In the two weeks leading up to my hospitalization the pain in my stomach was so bad I couldn’t tie my shoelaces. If I was driving I could feel when I pressed the clutch or the brake I could feel it in my intestines. It was bad, I had a fever at night, I was throwing up in the morning. It really escalated in the weeks leading up to it,” she told RSVP Live.

Despite attending her GP, she was only given prescribed painkillers and not referred for testing, leading the Gutcast podcast host to question the validity of her own disease, wondering if its symptoms could be invented.

“They couldn’t give me an answer, so after having it checked I thought it was all in my head, it couldn’t be that bad, because if it was something serious , it would have been reported when I went to the GP, so I continued…the symptoms got worse and worse,” she said.

The weekend Amy received her diagnosis, she was on a weekend in Liverpool with her partner Mike, when the pain became so intense during a visit to the Beatles Museum that she could not stand and had to curl up on the ground in a corner. She tried to play it down, telling her now-fiancé she was sure she would be fine in a few minutes, but the pain continued to escalate.

“He was worried, but I kept downplaying him,” she said. However, on the boat back to Ireland later that day, the agony became unbearable.

“The pain made me scream out of the car, it was awful. We did a video doc on the way there and were told to get to A&E straight away. I don’t remember the trip at all. boat, I think I was in and out of consciousness at the time,” she said.

When they arrived at the hospital, they were told the pain was either from Crohn’s disease or appendicitis – Amy explaining that IBD pain can sometimes be mistaken for an inflamed appendix.

“I told the doctor how I felt and he looked at my blood, and the first thing he said was literally ‘oh my God, why do they (the blood tests) look like that – I mean, don’t freak out!”

“Funny enough, me and Mike didn’t panic, I think we had reached a level of exhaustion, and at this point, nothing would surprise me.” Amy had suffered a perforation in her intestine, with an abscess on either side of the hole. After waiting 24 hours, Amy was diagnosed with Crohn’s disease. Although it was a hard thing to accept, her initial feeling was relief.

“It’s a similar event for a lot of people living with IBD – that feeling of ‘Thank God it wasn’t all in my head. At first I was pretty positive because I was getting treatment, I was starting to see my energy I was coming back, the pain was going down. I could see the light at the end of the tunnel in a way,” Amy shared. However, living with Crohn’s disease is rarely a linear journey, something Amy discovered in the months after her initial diagnosis.

“I started crying everyday randomly… I was really struggling with it. It was like I was starting to realize that this was going to be with me for the rest of my life. Realizing that my health wasn’t what I thought it was, and I started having to grieve the loss of my health and then come to terms with what I had been through.”

“The doctor described me as ‘the sickest person in A&E’ that day, and yet to look at me you’d just say ‘oh, she’s just a little under the weather. You would never have known what I was really going through inside. “

As Amy looks to the future, a highlight on the horizon is her wedding day. However, she had to take her illness into account when planning her big day.

She and her partner Mike have been together for eight years, and he surprised her with a romantic proposal on the grounds of Blarney Castle during a weekend in Cork. The couple, who are based in Galway, have enjoyed picnics in some of Ireland’s scenic spots before, so Amy didn’t expect Mike to pop the question this afternoon.

“He told me to turn around while he was setting it up, then he got down on his knees and proposed. It was absolutely adorable in that moment,” she recalled.

“One thing about that weekend from a Crohn’s perspective, we went out for a nice meal that night and we drank champagne and all that nice stuff, and the next day we went to pick out our rings – he had proposed with a temporary ring, so we went and got ours, which was a great experience – and after that, between all the excitement and emotion, it completely blew me away!”

“It was the first time from Crohn’s perspective that I realized how much this was going to impact me on milestones. Even though the whole experience was so relaxing and pure bliss, it still slipped away. I needed to rest, everything had taken such a toll on my stomach.”

When it comes to planning their big day, the best way for Amy to prepare ahead of time is to enjoy the nuptials without stressing that her Crohn’s disease might flare up. However, she says he knows of victims who were forced to cancel their wedding days even after getting ready due to pushes and pain.

“A lot of people thought I was a pretty enthusiastic beaver when we got engaged, because we knew the church, we knew the venue. We got engaged on July 13 and I had everything booked in early September. Lots of people might have thought it was me who was impatient, but in fact, with my IBD, I have to book well in advance.”

“Stress is a huge factor that can cause symptoms in many people with IBD, myself included, and it’s all about planning ahead to mitigate that as much as possible. Our emotions play a big part in our gut, and our gut can’t distinguish between a positive emotion and a negative emotion, so even if I’m negatively anxious or excited, it might react the same way. really aware on the morning of the wedding, all those good emotions.”

Amy explained that although choosing a wedding dress is such an exciting and positive thing, she feels some apprehension as she likes to be comfortable in what she wears due to her illness, as restrictive clothing can be a problem.

“My first thought was, ‘How am I going to feel that day?’ Because I have a lot of bloating and stomach pain.I try to look forward to the day when we go shopping for the wedding dress, but it causes me a lot of anxiety.I hope to find a dress in which I feel comfortable and who I appreciate.”

Amy is also working with her IBD nurse to help create a plan to prevent more facial ulcers from developing as she approaches her wedding in May 2023, after an ulcer she developed over the past month left scars on her face, and to be sure she was well enough that day.

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Amy credits her incredible support network, including her loving fiancé, for helping her cope with her IBD and the emotional and physical challenges it has brought her.

“I have incredible support by my side – me and Mike have been together for eight years, he was with me when I was diagnosed. He’s been absolutely amazing. We’ve been through ‘sick and healthy’ before.”

Amy shares the stories of others living with IBD – including times of prosperity and times of struggle – on the GutCast Podcast, the premier podcast for people living with inflammatory bowel disease in Ireland, which you can find here.

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