Kate Montgomery: Living a reverse bucket list, with Crohn's Disease and an ileostomy

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.

Kate Montgomery has Crohn's Disease, but isn't letting it define her life. Photo / Michael Craig

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.

John, Claudia, Peter and Kate Montgomery at the launch of Peter Montgomery's book in 2015. Photo / Norrie Montgomery

Montgomery was "heartbroken and devastated" at the prospect.

"But I didn't want to die, so it was a very straightforward choice for me."

The day before her surgery she wrote a list titled, 'Things I'm going to do if I don't die.' It included learning to surf in Hawaii, climbing Rangitoto Island and learning to sail.

After the surgery came the low point. The counting to four, over and over, and being bedridden. "I was 42kg with this bag on my stomach. I hated everything about my body. I felt like it had failed me. I was thinking of my body as a separate entity as my brain and I'd say that was my lowest point. That was awful, I cried a lot."

Getting home, she retreated into recovery and was "relatively happy" watching television in bed, drinking cups of tea.

"But I knew it couldn't last forever. I got bored of being ashamed."

She saw a therapist weekly and began pushing herself out of her comfort zone, and tackling that reverse bucket list. As her physical health and fitness improved, so did her mental health. She began going to the gym and weight lifting.

Her pain went away and although she has to be careful about what she eats and needs to be aware of where bathrooms are much of the time, most of her previous Crohn's symptoms have gone. Looking forward, having children could be tricky but Montgomery says she will cross that bridge when she comes to it.

Describing her recovery, Montgomery says although she grieved, she also realised she was coping. "Even though I could acknowledge how awful it all was, I thought I would just be a write-off mentally. I thought that was it, you know?
"But actually, as I healed, I was like, okay, I can do this. I think because it was permanent as well, I just forced myself to do stuff I wouldn't have done last time."

Kate's Instagram shows her living life to the full, despite her illness.

A turning point was donning a bikini for the first time in four years and going for a swim in the Bay of Islands with two friends, who flanked her sides in a secluded part of the beach. The bag coped fine, and Montgomery was overjoyed by being in the water.

She is no longer embarrassed to admit there are some things she can't do - sailing can be tricky if there's no toilet on board - but when she began relinquishing the uncomfortable details, Montgomery let go of her shame.

"I realised how much of my shame came from hiding and feeling like I was hiding something," she said.

"As soon as I started talking about it and kind of being public about it, so much of that shame dissipated. So much of the shame I had inside of my head, didn't exist outside of me. It's a nice thing to find out, really."

View this post on Instagram

Sometimes I get really frustrated with all the health-related things I have still have to deal with. • I still have active Crohn’s disease. I still have so much healing to do. I still get exhausted easily. I can’t do all the things my friends can. I have to be incredibly careful about my diet. And I sure as heck don’t love that bag attached to my stomach - that I’ve had to work so hard to accept and not apologise for. • So sometimes it’s really helpful to stop, breathe, and remember how far I’ve come. Because I’d take this version of my life - with all its trials and frustrations - over my old life, any day. • #crohns #crohnsdisease #crohnslife #ileostomy #ostomy #ostomate #ibd #ibdwarrior #gameofcrohns #chronicillness #chronicallymotivated

A post shared by Kate (@thesemicolonclub) on Jan 4, 2018 at 10:10pm PST

On New Year's day Montgomery launched "thesemicolon club" on Instagram. Describing herself as an "ileostomate", she features herself in bikini shots with a difference - a barely visible ileostomy bag on her right side peeking out from the top of her bikini bottoms as well as tributes to her To Do list - surfing and weight lifting shots. ("I wish I'd put dead lift 100kg on there because I've checked that off," she says.)

The page is in keeping with Montgomery's sense of humour. She's the first to make jokes about her illness ("It's a shitty situation, sorry about the pun," she says, laughing, at one point).

Posting the pictures is another battle won for Montgomery, who said her self esteem was "shredded" by her first surgery. In hospital, surrounded by women in their 60s or 70s having the same surgery, they told Montgomery they felt sorry for her being so young.

"It's really hard in your 20s and 30s because ... you're still so conscious of your image. I've got a lot less like that - I've had to - but it's a really tough time. I have two really close male friends who have the same as me, one of them I grew up with, and he once said to me, 'Oh, it's so much worse if you're a woman and you have to get one.' [Whereas] his friends were calling him the bionic man."

She suspects men and women's self esteem issues aren't that far apart and she hopes her open discussion about ileostomy and Crohn's will help anyone with chronic illness.

View this post on Instagram

I started lifting weights 6 months after my surgery, because taking prednisone every day for 2+ years had messed with my bone density. I’d never done it before that - to me the gym meant cardio machines, or classes, and just trying to be as skinny as possible. . But after spending 4 years weighing 42kgs and being far skinnier than I ever hoped, my brain stopped being so obsessed with thinness. What my brain did have, however, was a massive case of medically-induced clinical anxiety, and the gnarliest panic attacks that would come from nowhere. Plus a seriously shredded sense of self esteem thanks to my new ileostomy. . I thought I would maybe fix my bones and four-times-sliced ab muscles. And I did. But what I didn’t anticipate was that lifting weights would make me feel - and BE - so strong. That it would make me proud of what my body could do, and start learning to like how it looks. And that it would help me manage my anxiety so well - I haven’t had a panic attack since the day I started lifting. . My progress has been slow. In August 2015, I started out deadlifting 20kg. In the second video, from July 2016, I lifted 80kg twice with sloppy form, using all of my strength. Now I can bust out reps of 70kg with perfect form like a BOSS. . Much like dealing with chronic illness, I’ve learnt progress in the gym is incremental and often exhausting. But every ounce of effort is worth it. . #gameofcrohns #crohnsdisease #crohnscolitisnz #IBD #inflammatoryboweldisease #ileostomy #ileostomate #ostomy #ostomate #fitspo #crohns #girlswholift #chronicallyill #chronicallymotivated #nocolonstillrollin

A post shared by Kate (@thesemicolonclub) on Feb 6, 2018 at 12:27am PST

"The idea is that I will just talk about stuff that affects me and hope it helps other people. My physical recovery after the surgery was pretty linear, I got steadily better as I healed and I went to rehab.

"But it's the mental stuff living with ileostomy, or the day-to-day programme that's always running in my mind. There's always a part of my brain dedicated to where is the nearest bathroom? Or, is my bag leaking, or how full is it?

"I don't really have leaks or anything like that but there is always a small part of my brain that has to concentrate on that in a way that people who are healthy just don't have to consider.

"I'd like to think that people get something from it, or they see something and go, oh I could do that differently, or there is just someone else that gets it. When I was first diagnosed and even when I had my surgery I just didn't have anyone. There was no one [publicly talking about Crohn's]."

Former Bachelor contestant Viarni Bright is going to a six-night camp for kids and teens with Crohns disease. Photo / Greg Bowker

Former Bachelor season three winner Viarni Bright has also spoken publicly about being diagnosed with Crohn's Disease when she was 19. She previously told the Herald talking about Crohn's "is not the easiest thing to talk about sometimes - it can be embarrassing".

Ostomy New Zealand ambassador Kallia Patching says Montgomery's story was "absolutely" important to share with others.

"More and more people are getting diagnosed. Most people don't know what an ostomy is and I think there's a stigma that goes with it."

After being diagnosed with Crohn's, Patching had to have emergency surgery in 2001, aged 22, after she began bleeding uncontrollably. She woke up with an ostomy pouch.

"I've had lots of people turn around and say I would much rather die than have a bag, and I just look at them and go, 'No way, my life is so much more worth living'."

In January Montgomery attended Camp Purple Live for children with Inflammatory Bowel Disease. One of the young participants reluctantly admitted to her he had an ostomy bag. Montgomery responded with an upbeat "same" before lifting her shirt to reveal her bag.

His eyes lit up with surprise, she says.

"He said, 'What? I can't even tell. You do all this stuff.' It was really cool to talk to him."

As she showed a group how to incorporate waterproof material into her bag, he said, "I want to be like you one day. To do it and just not care.

"I thought, that's so cool to hear, and that's what I want."