Saleem Juma was 14 when he was diagnosed with ulcerative colitis, a variation of Crohn’s Disease. Now 24, he’s lost 4.5 of his digestive organs to the aggressive condition, in combination with volvulus (intestinal twisting and necrosis of the bowel). He’s been hospitalised 60+ times and survived several surgeries, but continues to hold down work as a model, reality TV show co-producer, and blogger. Did we mention he also nabbed the Mr Washington State title for 2017? Here Saleem talks Sarah through his story, and what it’s like to live with a largely hidden disability.

When were you first diagnosed with ulcerative colitis, and how does the disease actually present in your body?
I started getting sick when I was 14 and… I started bleeding from the rear end. It took me years to be able to say, but one can understand why I hid it until I was 16. I even completed six months and graduated from a military school with no medication – didn’t even tell anyone about the disease. I was going to the restroom maybe 15-17 times a day, somehow I just kept being able to hide it. My teachers at high school just thought I was a loser who was going nowhere in life, skipping class, but in reality I was in the restroom. Too ashamed to say what was really going on.

We’re taught in our society – especially this day and age as teenagers – that beauty is such a narrow view. Someone who’s bleeding out of their bum could never be beautiful, or so I thought. It’s a big reason I started doing the advocacy work that I do.

How did you cope with it emotionally, growing up?
Denial mostly. Even when I was diagnosed I didn’t do any research or anything like that. So it’s not like I even understood it was a lifelong concern. The way I looked at it, I was going to take my medication and the nightmare would finally be over. Unfortunately for me life doesn’t work like that. I was never popular enough in high school to get invited to parties or anything like that, so instead I fell in with a pretty rough crowd. I started drinking and partying with them, then when I hit my senior year, despite never being in the in crowd, a group of older guys who had grown up in a different area kinda threw an arm around me and introduced me to the party scene. Taught me how to assimilate and how to be “cool” I guess. I ended up using a ton of booze – to control my disease to an extent, or at least the pain of the disease.

I still remember, I was at a fraternity party at UW when I was 19 and it was when I was literally going to the bathroom everyday 25-30 times – literally had to empty my bowels using coffee and a 7-8 mile run every morning plus cigarettes and not eat anything throughout the entire day – yet I was still in pain. I still managed to work a full time job at 24 Hour Fitness, plus full time college. I was smart and went twice a week for the entire day, and did my classes in the late afternoon/evening to get the full time credits without really risking getting too sick, oh and I also worked about 20 hours a week for my dad learning real estate and helping him out with his stuff.

Anyway I was at this party and I had a particularly hard time in the bathroom – just a lot of stomach pain, wasn’t on the toilet but was basically doubled over in pain for a bit, told the drunk frat guys who wandered in that I was the “King of Shots” and had drunk 20+ shots and just needed some time alone, they wouldn’t have understood my pain. But I came outside and one of my best friends at the time, Lisa saw me and I guess the expression on my face was just easy to read. She asked me what was wrong and I just couldn’t stop the tears from starting to well up. I turned away and tried to hide it, but my friends took me aside and I told them I thought I was gonna die, that’s literally how I felt everyday.

I was drinking literally every night, may or may not have been getting into some other stuff. I was getting in fights literally all the time – picking them when I went out at night because I just wanted to hurt, and be hurt in return. I couldn’t be a bully since I grew up on the fringes of being an outsider all my life, so instead of bullying those weaker than me I would pick fights with groups of guys who were just as big as me or bigger, hoping they’d kick the shit out of me. Not only did I get myself into trouble, I managed to pull my friends into it as well, which sucks now that I look back on it.

You were a teenager when you had your intestines removed. What was that like for you, particularly then going on to college?
I want to say it was hard, but I still remember the feeling when I woke up from the 18-hour surgery where they first removed my intestines. That feeling was incredible. For the first time in my life I wasn’t sick, it was the most amazing thing. I had a poop bag attached to my stomach and I just remember how happy I was. It was April when I had that surgery, my 20th birthday was in May. I was still in recovery and all my friends had come to visit me in hospital, and kept coming to my house. I remember telling them that even though I couldn’t go out with them – they wanted to celebrate with me, obviously – I still had the best birthday present ever.

I say that, but the novelty eventually wears off. As I started going to parties again – I didn’t start my modelling and advocacy work full time until about two years ago – I didn’t tell anyone about my bag. Rarely did I ever mention it other than when I was in the hospital for another surgery or something. I wasn’t scared, but I’ll admit that I was ashamed. School was tough, I had a hard time talking to girls – or anyone really, a massive increase in my already bad social anxiety – I kept getting sick and ending up in hospital. Got so bad I’m 24 years old and still four classes away from my associate’s. A product of my resilience honestly, a normal person might have said screw it a long time ago.

I’ve had a lot of support though, not only from my family but my friends as well. That’s been pretty helpful, I was able to get as far as I have in school due to their support. I even dated a few girls from school and that started to build my confidence back up.

You’ve commented on the hidden nature of your disability, and the fact that people can be very unforgiving – and straight-up rude, for example in situations where you urgently need to use a toilet. Can you describe some of your experiences and how they’ve affected you?
I’ve been let go from a fair few jobs, including my position as a data analyst where I was doing 600+ Document ticks a day. The average was 175 after 3 months of working there, I hit 600 after a month. No matter how good I was, the hospital stays were too much for my employers to deal with. I’ve had quite a few girls say they could not be attracted to me specifically because of my bag. I’m sure there’s plenty more who vanished because of it but didn’t say anything, but stopped texting me when they found out. It’s again part of why I started doing my modelling and advocacy work; to fight the social taboo that unfortunately exists against invisible illnesses. I had to conquer my social anxiety to do it, but this is more important than my fear, so I learnt to have courage, and to fight the endless war against myself.

“No matter how good I was, the hospital stays were too much for my employers to deal with.”

Most times when you tell people at a store or something that you have a disability, they’ll let you use the toilet, even if it’s not open to the public. I think I’ve had 7-8 instances when they didn’t, even when I showed them my bag. I’m not going to lie, the first time I was so angry I may or may not have “ahem, accidentally” emptied my bag on his shop. Gross, I know. I say that because people need to understand that while we may not be entitled to use the restroom; it can be a huge issue and extremely embarrassing when you have an almost overflowing pouch and someone won’t let you use the restroom. I was on a date at the time and it was… actually the girl’s idea to do what I did. Ha! I ended up dating that girl. Another one I ended up dating was this insanely smart and beautiful girl who actually held the flashlight while we were at the park at 3am and I had to empty my pouch.

I read an article about a girl with Crohn’s who needed to use the restroom in a department store and the manager wouldn’t let her use it, she ended up shitting her pants. I can’t imagine how incredibly humiliating it was for her and the family is now suing the store. How easy would it have been to just let the girl use the restroom? The entire situation could have been avoided.

You’re a full time model. What sort of work do you mostly do, and does your colitis or bag ever get in the way of that, so to speak?
Oh most definitely, I didn’t even start getting back into modelling until about two years ago. I was dating this girl when I was 18 and I went to one of her runway shows as moral support, her agent liked me and gave me my first gig. I ended up making $200 in 1.5 hours, and as I couldn’t hold a steady job it became my way of paying my bills, which were piling up since I was always in the hospital.

After my most recent surgery, where I lost 9cm of my small intestine and almost died yet again – the docs told me if I’d come in two hours later I’d have been a dead man – while I was in the hospital I decided I wanted to leave a damn legacy behind so that if I didn’t make it people would remember me. I started writing and blogging; my articles got some attention as “unorthodox”, but it wasn’t enough, nobody was paying attention. Then I remembered this blog I used to read before when I was about to get surgery about this lingerie model in Canada who had an ostomy; I remember thinking she was totally my dream girl – not just because of the ostomy, but more because she was attractive as all hell and had a ridiculous amount of courage to be one of the first of us to come out in public and do what she was doing.

“I used that to start building more awareness about the disease and invisible illnesses in general, as well as mental health issues and advocacy.”

Anyway I used my old modelling connections and jumped back into it and posted the photos online. Not only did I start making a good amount of money again, people started paying attention. My kid sister told me “I utterly HAD to have a Twitter and Instagram these days”, so she made me both of them and now I have 85K followers on Twitter and 20.7K on Instagram as well as 5000 something likes on my Facebook Fitness Modelling page. I ended up somehow making Mr Washington State and being in the running for Mr USA 2017, don’t ask me how. But I used that to start building more awareness about the disease and invisible illnesses in general, as well as mental health issues and advocacy. Sadly I ended up in the ER the night of my flight to compete in the Mr USA Pageant, but I’m happy I’m alive and I’ll continue to fight the good fight until the day that I die.

The bag can certainly be an issue with certain outfits, but I’ve learned to hide it when I need to and show it when it’s possible. There’s very few parts that it’s stopped me from taking.

Can you tell us a bit about the show you produced on Amazon Prime? The show itself, and also how you came to work on it?
Yes! The Show is called Single Combat. I actually applied to be a fighter first, however Medical wouldn’t clear me to fight, despite my 6.5 years of Mixed Martial Arts experience. However the Executive Producer liked me so much and appreciated how I carried myself, as well as my networking connections and resourcefulness he made me a Co-Producer. Even got us business cards with my nickname on the show Saleem “Swag” Juma. Try explaining that one when you hand it out at a Professional Networking Conference or something, thanks Coach!

The show itself is about the violence in America today, we sought to counter it by giving the Right and the Left an outlet for their views as well as reminding them that they should both have the honor to take each other on in Single Combat instead of jumping each other in the streets and flaming each other behind computer screens. We gave the participants five weeks of the best boxing training money can buy, then put them in a debate studio to each pair up over a certain issue that the Right and Left differ heavily on. After they debated we had them take each other on – Washington is a mutual combat state.

The most important part of this, besides the entertainment value, is that they got up after the fight, and shook hands despite having differing opinions. They showed us that, regardless of how you feel about the current political situation, in the end we are all brothers and sisters. We are all countrymen and we must try to understand each other. If brawling in the ring to take that aggression out is what works to understand, who are we to judge? We do what works.

Why do you think there needs to be more awareness of disability, and what could people do to make life less challenging for you and others with similar conditions?
When I tell someone I have an ostomy they have no idea what I’m talking about, or they just know “colostomy” as something their Grandmother or Grandfather had. Every TV show I’ve ever watched has made some huge joke of it or made it a negative, including one of my favs, Psych, not a bad thing, humor is good. However I want to show people that they can still be “hot” and have a disability. It makes no difference, it’s simply your dedication to style and fitness, but more importantly how you carry yourself and your confidence.

“I know exactly who I am and where I stand, nobody is going to make me feel small ever again.”

I walk outside and I know exactly who I am and where I stand, nobody is going to make me feel small ever again. As I raise awareness about my disease and what I’ve gone through I want to make it so nobody like me ever has to feel small again either. People can simply help by being more understanding of invisible illnesses. just because you don’t see it doesn’t mean we’re not suffering.

We also need to make more room for motivational speakers who have diseases and disabilities. I really feel like they can inspire others in ways that people without these things may not have the capability to do, not because they’re any worse of a speaker or any less inspiring, but sometimes people simply identify with the challenges they’ve faced, like mine. Much love to everyone out there suffering right now, I know how hard it is.

Saleem Juma is a model and disabilities advocate from Seattle. Find him on Twitter.

Sarah Illingworth is a freelance journalist and Editor at Impolitikal. She has an MSc in Poverty & Development from the University of Manchester. Read more by Sarah.