By: Kelly Dennett
Video: Kate Montgomery talks about living with Crohn’s disease. / Video by Michael Craig
Kate Montgomery recalls her lowest point in more than a decade of dealing with Crohn’s Disease was immediately after ileostomy surgery where parts of her intestine were removed. The pain was so bad she was counting in four-second blocks.
Afterward Montgomery, then 32, had to come to terms with the fact a small bag attached to her abdomen through an ostomy – an opening in her abdomen – now functioned as her bowel. In her own words, it was the worst possible thing that could have happened to her, and she struggled to leave the house.
“For the first few months I was like, I’m a freak with a bag,” Montgomery says. “And it took me a really long time to get over that.”
Now, in a time distinct for women publicly celebrating their bodies, warts and all, Montgomery is baring her ostomy bag on an Instagram account launched this year in the hopes of normalising the effects and surgeries that can be associated with Crohn’s Disease.
Crohn’s is a chronic inflammatory disease of the bowel that can cause symptoms ranging from lethargy, nausea and vomiting, to weight loss, bone loss and malnutrition. It’s an autoimmune disease, where the body attacks its own good bacteria.
Those with more serious symptoms who can’t be treated with medication can have colostomy or ileostomy surgery where an ostomy connects to an exterior pouch to collect waste.
There are estimated to be 5000 people in New Zealand with an ostomy and Montgomery, now 35, has a message for them, particularly people who are just getting used to having an ostomy bag. Life is just beginning.
The psychology student is a part-time Royal New Zealand Yacht Squadron staffer, and the daughter of prominent yachting commentator Peter Montgomery. She was diagnosed with Crohn’s at 23, but her condition worsened while working on superyachts in France and the Caribbean.
She was losing a lot of weight, putting it down to homesickness, but one morning woke up with purple, swollen joints. She returned home, was “pumped full of steroids” and underwent blood transfusions. Her weight plummeted to 46kg and for the next several years she was in poor health.
“I wasn’t great, but I got through days. I was in a lot of stomach pain- always in agony or exhausted. Then one day, I could feel this lump in my gut.”
Parts of her intestine had stuck to each other because it was so inflamed, culminating in her first surgery in 2010. When she got an infection less than two weeks later she had a temporary ileostomy surgery where parts of her intestine were removed and her small intestine was reconnected to an opening in her abdomen called a stoma. Waste passes into the bag, which has to be regularly emptied.
“I had that for eight months and I went to work, and I went home, and I cried,” Montgomery says.
“I didn’t want to meet new people. I told about three friends about it. I was just so mortified and so ashamed. And the bag was in a particularly bad position so it leaked and I had to go home and change my clothes which was just mortifying. It was a horrific experience.”
After it was removed she spent “a really long time trying to get better” to avoid ever having another bag, let alone a permanent one. She tried acupuncture, medication, dieting and sought help from a leading gastroenterologist in Sydney. None of it worked.
In 2015 doctors found a hole in her bowel that was leaking fluid into her stomach, essentially poisoning her. The situation was life or death and having a permanent ileostomy was the only solution.