Kate Montgomery was diagnosed with Crohn’s disease 11 years ago. She spent most of her 20s exhausted, researching and testing any possible cure – then coping with the outcome of having to wear an ostomy bag for the rest of her life.
What is Crohn’s, and how long have you known that you’ve had it?
I was told by a doctor that it’s your body attacking the good bacteria in your gut. My body thinks everything that passes through my gut is bad, and it attacks the lining – anywhere from my mouth to my rectum. It’s your whole gastrointestinal tract. For me, it’s mostly been centered in my colon, which is why they had to remove it, because the inflammation and attacking went on for so long that I developed a hole in it.
I was diagnosed when I was 23. I was really lucky in a way because I went to the doctor when I started having symptoms, and she said, we need you to have a colonoscopy, and they took biopsies and diagnosed me with Crohn’s. That was the process of my diagnosis. It takes a lot of people years to know what the issue is. I’ve had it for 11 years now, in fact almost exactly 11 years, because I was diagnosed on the 12th of May.
How have those years been?
Apart from the last two, pretty sucky actually. I didn’t realize until I had this surgery how crappy my 20s were, in terms of my health. I thought I was doing ok, but with how I feel now I know that I was surviving. There were so many things that I thought I just didn’t like, or wasn’t interested in, or wasn’t fun enough to be into, and it was actually that I was quite sick. Especially from about 24 to 28 wasn’t great, but from 28 to 32 was awful. I did a little bit of work, so I’d leave the house occasionally, but I was constantly exhausted, and I had lost a lot of weight. I weighed between 42 and 45kgs for those four years – the last year I weighed 42. It was a celebration when I got up to 42.5. I was really trying to avoid having the ostomy surgery through those four years – because I’d had it before.
For the first few years of having Crohn’s I’d sort of limped along. Then I went to the doctor one day because I could feel this lump in my stomach, and basically my intestines had gotten so inflamed and perforated that they’d stuck together in their little tracks, moving through all those bits. That’s the first time I had to cut it out. 10 days later they had to open me up again because I had an infection. They had to give me an ostomy for the second time. I had that for eight months. I hated it. I would go to work and I would go home and I would cry. My flatmates knew about it and they were so great, but I didn’t like to leave the house – I didn’t talk to guys, I didn’t go out to bars. I was constantly mortified. It was also located in quite an awkward place, and it would leak all the time. It leaked at work one day and got on my clothes, so I had to go home and change in the middle of the day. It was just atrocious, I wouldn’t wish that on anybody.
“They had to give me an ostomy for the second time. I had that for eight months. I hated it. I would go to work and I would go home and I would cry.”
They reversed the surgery eight months later. I was fine for about six months, and then I got really stressed with work and I started getting sick again. Stress doesn’t cause Crohn’s, but it makes it a hell of a lot worse. That was 2011. I spent three-and-a-half years trying to find therapies that would let me avoid having surgery, because my first experience with having the ostomy bag was so horrific that I didn’t want to have to do it again. I took all the medicines my doctors told me to, but none of them worked. Once they gave me too much Prednisone and it essentially broke my brain and I started having panic attacks. I’d never had them before. It took me years to stop having them, even after the Prednisone was out of my body.
I tried everything medical, but also supplements and acupuncture and meditation and yoga – if there was some sort of science on it I would try it. I made some dietary changes but I think I got there too late. In January, 2015 I had these horrific fevers, 40 degrees. Went into hospital and they did a scan and showed that I had this abscess in my stomach, it was quite big. So they drained that. Even then, I was still determined that I wasn’t going to have ostomy surgery, because they couldn’t guarantee that the abscess came from a hole in my bowel. I was so desperate to not have the surgery. Then one day stuff came out into my drain that made it obvious that it was coming from my bowel.
How did it go when you finally had the surgery? Was it as bad as the first time?
It was really tough to start with, but I’d already started seeing my therapist by then. Without her, I never would have coped the way that I have now. If you told me of two years ago that I would be like I am now – putting my story on the internet, and wanting people to know about it, to help them, I just wouldn’t have believed that that could be me. My therapist has enabled it, but I’ve done the work. It took me a long time to not be like, you’re a freak, no one’s going to ever be attracted to you. I hope you liked having sex in your 20s because it’s never going to happen again! It was really hard having my self-esteem so flattened.
The two things that I did differently this time were the therapy, and I went to the gym a lot – because all the Prednisone had ruined up my bone density. Going to the gym and feeling strong was something that I had never experienced before. I had never lifted weights before. The shape of my body has changed, and I like it. But just feeling strong when I used to feel so weak is a really amazing thing. Also, since the day I started lifting weights I haven’t had a panic attack.
Why do you think that is? Is it partly to do with feeling physically strong, or do you think there’s a physical reason?
I think it’s the brain chemistry – something to do with endorphins, or just that I’m using my nervous energy in a different way. But definitely, when I exercise, everything’s easier to handle. It doesn’t make my anxiety go away, it doesn’t stop me ever feeling depressed, but it makes everything easier to handle. Nothing ever feels too big, or too awful in the same way that it used to. And I’ve learnt to rely on my friends more. When you’re an anxious person your brain tells you that no one wants to hear it. That you’re a burden to your friends or your family. I’ve learnt that that’s not how it works. Your friends don’t care.
Also, I’ve stopped thinking of Crohn’s as part of me. I think of Crohn’s almost like a separate entity that happens to my body, versus my body attacking itself. That’s how I used to explain it – oh, my body’s attacking itself – and then I constantly felt at war with my body. I was trying to fix something, versus it being me as a whole entity fighting Crohn’s. Which was this alien invader that had happened to me. The more I thought of my body being at fault, I couldn’t think nice things about it. And then add something like an ostomy, which marks you as not normal anyway.
“I’ve stopped thinking of Crohn’s as part of me. I think of Crohn’s almost like a separate entity that happens to my body, versus my body attacking itself.”
It’s changed my mentality around it, and made it a lot easier to look after myself. To eat like I give a crap about myself. To take my supplements all the time, and bother to do that, and bother to go to the gym, and bother to go to therapy and bother about all the self-care things that I need to do. Which are really hard when you’re exhausted anyway. If you had been hit by a car you’d still have to do similar rehab to what I have to do, but you wouldn’t be blaming your body for letting you down. I realized how often I spent in that really negative headspace of telling my body, essentially, that it had f*cked me over.
I guess it’s learning to see your body as an ally again, rather than an enemy. It makes a lot of sense that that affects your ability to be well.
It’s not some woo-woo thing to me either. To me it makes perfect sense that if you’re not spending this time hating yourself – the conditions were just there for it to work. And now I’m putting pictures of myself in a bikini, showing my stomach on the internet, and being like: have you seen my abs?
I have. They’re very impressive.
That’s the one good thing about having to do so much core rehab, is that abs are unavoidable in that instance, which is great.
How does all that exercise actually work with having an ostomy bag?
I don’t know if it’s the position that mine’s in – or if it’s because I’d lost so much weight that my gym journey was to put on muscle everywhere, and get stronger everywhere. I was literally starting from scratch. I know there are people that have ostomies that have to wear supportive belts, or it gets in the way with certain things, or their scar tissue does, but it hasn’t actually prevented me – I mean, I wear high-waisted knickers and all the leggings I wear to the gym are high-waisted. But that’s the only support that I need, so maybe I’ve been really lucky.
I even do quite a bit of rock climbing now, and the harness doesn’t hit me anywhere where it’s a problem. There were things I had to work up to being able to do because I wasn’t strong enough, like planks at the start I couldn’t do. That really hurt my scar, and now I can. I couldn’t squat when I started and now I can. I couldn’t deadlift and now I can deadlift 100kgs. It was just overall muscle development, versus any particular issues with the bag. I know that there’s lots of workarounds anyway. I don’t think it should let anyone stop them.
How has it affected your overall self-esteem? In terms of confidence with other people and in relationships?
Honestly, the number of times people have said something like, “trust your gut” around me that I barely even know, and I’ll be like, “I don’t have one”… mostly I’m cool with it. The idea of dating new people is always harder than new friends, obviously. But I feel so much better than I ever imagined I could. Also, I let it be a symbol of how much I’ve gone through and how strong I am, versus something that I should be ashamed of.
The other cool thing about it is it’s quite a good early warning system. Because me telling someone I have a bag tells them one thing about me, but their reaction tells me everything I need to know about them. I’ve worked really hard on my self-esteem, but also it wasn’t a lot of affirmations and shit. So much of it was purposefully neutral. I would catch myself being like, you’re such a freak, or no one would like you, and I would just tell my brain that I don’t think like that anymore. I wouldn’t even go, oh no but you’re so beautiful, because that’s not the sort of thing that you can fake until you make.
“The other cool thing about it is it’s quite a good early warning system. Because me telling someone I have a bag tells them one thing about me, but their reaction tells me everything I need to know about them.”
It’s weird how feeling strong makes you feel better about your body, even though some of the strength has no impact on how I look. Just feeling strong makes me feel better. I used to think my arms were way too big compared to other girls’. I used to swim, and now I’m just like, they’re good. Also, I can do push-ups, proper ones. And I’ve worked on it. That’s the other thing, it’s constant work to feel good about myself. But it’s also the same amount of effort to feel bad about myself.
It’s a choice. Learning how to change your brain, and that you can tell yourself, no I don’t think like that anymore, or catch yourself before you drop into an unhelpful train of thought, is like a form of muscle development as well.
That’s such a good way to put it. It’s just that constant practice that makes you better at it. I think the two lies that I was sold before were that self-confidence and self-esteem were constant, and you either had them or you didn’t. I’ve learnt through this that that’s not true, and also that the more work you put in the better it will be, and all of that work is worth it. Even if it gets you halfway to where you want to be, it’s still halfway better than you were before.
One of my friends once said to me when I was getting frustrated with how long things were taking: slow motion’s better than no motion, and I was like, I want that on a t-shirt. When things aren’t instantly happening, it’s easy to feel like nothing’s happening. And it’s like, no it’s a little bit better every single day. I constantly have to work on it. But now that I know how good it can feel, I don’t mind doing the work either.
This article originally appeared June 14, 2017 on Impolitikal and was reprinted with permission.