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ulcerative colitis: what it feels like
11 minute read
'people don't realize what i've lost. i've lost out on two incredible careers,' says adam polak
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when adam polak sat on the toilet and all that came out was blood, he describes it as “the most horrific moment of his life.” it had been years of spending awkward amounts of time in the washroom during his shifts as a flight attendant, shrugging off relentless abdominal pain and sudden unexpected bowel movements. this time, polak couldn’t ignore that his body was telling him that something was wrong.
ulcerative colitis is an inflammatory bowel disease (ibd) that primarily affects the large intestine and colon. there is no proven cause for ibd, but recent research points to the possibility that the immune system attacks the lining of the intestines (either as an autoimmune condition or as a by-product of an infection or illness) according to the mayo clinic. in 2018, 270,000 people were living with ibd, including 7,000 children.
people with colitis have inflammation, and often ulcers, in the lining of the large intestine. symptoms include abdominal pain and cramping, as well as sudden bowel movements (often with blood and pus). there is no cure, although some individuals may enter periods of remission after a course of treatment.
battling stigma
feelings of shame and experiences of stigmatization around discussing bowel movements and other bodily functions has been shown to negatively impact the quality of life and mental health of people living with ibd — stigma that often causes patients to express feelings of isolation that prevents them from seeking, and adhering to, treatment.
healthing.ca spoke to polak, an advocate for colitis and a passionate horticulturist, about his path to being diagnosed, what it’s like to live with colitis and why it’s so important that people talk to their doctor about their symptoms.
interview has been edited for length and clarity.
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you lived with symptoms for years. what was it that finally made you seek help from a doctor?
i was diagnosed in april of 2016, but 2012 is when i really started to experience symptoms that impacted my life — even though i’d had them for years before that in their mildest form.
i was a flight attendant for a canadian airline, and i was having occasional bouts of what i used to call bowel sensitivity. we would do a long-haul flight and the whole cabin crew would get together once we got to our hotel for a beverage, and a bite to eat. i would find that if i had something like a beer, i’d have to leave the table and go to the washroom. the same thing would happen at home — my neighbour and i would get together for a beer and i would have to excuse myself to use the washroom.
that’s a little bit of the insidious nature of the disease: its progression is so slow that you tend to put it at the back of your mind and learn to live with the symptoms. i started to have more incidents while i was at work on an airplane — i would have to excuse myself from service and be in the lavatory at the worst possible times.
when i started to see blood in my stool, that’s when the alarm bells went off. i would say to myself, ‘it’s fine, it’s fine. it’s going to go away.’ you’re scared because you’re seeing blood in the toilet — but it’s ridiculous what you’ll do to disguise your disease. i would literally take a cup of hot water with me into the lavatory to splash out the metal bowl because there would be blood that wouldn’t disappear when i flushed. i was terrified that one of my co-workers or a passenger would see blood in the toilet and say, ‘oh my god, is something wrong with somebody?’
this is where my anxiety kind of comes into play. i ended up having to take time off from work because of a severe anxiety episode — i had a panic attack in my car on the way to pearson airport.
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when i went back to work, my first flight in probably 13 months was really brief: a 12 hour layover in montreal and then a flight back to toronto the next day. i had already had gut problems the day before, so i told myself that i was going to fly this one day and just not eat anything. i was in so much pain by the time that we got to montreal that all i could do was sit on the toilet and pass blood. it was just blood that came out — it was the most horrific moment of my life. that was the last time that i flew.
i saw my doctor and he sent me home with one of those colon cancer screening tests. it was terrifying because i was 30 something years old and i thought, ‘oh my freaking god, i might have colon cancer.’ then, i got a call saying i needed a colonoscopy.
i was still thinking that it was something minor, despite the fact that i was scared to death. i thought they were going to just cauterize some bleeding hemorrhoids and i would be good to go.
it was one of those scopes where you are completely out. when i came to, my gi doctor sat down with me and she handed my mother and i a pamphlet. at the bottom of it, she had circled colitis. so, i’m sitting there in the recovery room, reading about colitis — an inflammatory bowel disease (ibd) that doesn’t have a cure.
this sounds like a life-changing diagnosis.
[right before i was diagnosed] i had been hired by a local retail and wholesale garden nursery here in london. horticulture is my deepest and purest obsession on the planet and i was determined to make that side of my life come true while i was off work.
i had to inform the nursery that i would not be able to be join because i had been diagnosed with a chronic disease that we didn’t even have a treatment plan for at that point. having to bail on this horticulture career that i wanted to do my whole life…
people don’t realize what i’ve lost. i’ve lost out on two incredible careers. i loved being a flight attendant, i loved flying around. i had plans for the route that i wanted to fly to europe and where i was going to live in southern ontario; i had been flying for 15 years when i was diagnosed. i also wanted to join the horticulture world. all of it came to a screeching halt and now none of it is possible because i can’t work.
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you also live in chronic pain.
through an mri, we found three bulging discs in my lumbar spine, which is an injury that’s related to the constant bearing down when you’re in the washroom. when your ibd flares up, you’re going to the washroom 10, 20, 30 times in a day. your body thinks that it’s trying to get rid of something, but there’s nothing, it’s inflammation. you feel like you’re giving birth to a planet, you’re seeing this horror show in the toilet, your abdomen is contracting so hard — and you’re doing it multiple times a day.
these bulging discs push mostly on the left branch of the nerve that goes into my legs which causes chronic pain that extends through my toes and my ankle. i’m not the only person who has lumbar spine damage from this unfortunate circumstance, and the worst thing is that none of these things are going to go away.
how is colitis treated?
at first, i was in a clinical trial with a drug that’s on the market already as an infusion. the new trial was using the drug as an injection. instead of getting an infusion of the drug every eight weeks, the patient injects the drug into their belly every two weeks. it was really exciting, except it was a massive failure for me — i just kept getting sicker and sicker.
i ended up going on the regular formulation of that drug and although i responded to it, i still had a lot of symptoms and inflammation that i couldn’t get rid of. the drug that i’m using now is still in phase three trials for use with colitis. whether or not it’s going to be long term for me is unknown because i continue to have a number of problems.
endoscopically, things look pretty good, but it took a long time to get to that point. an endoscopy (which is when a lighted tube is inserted into the anus to examine the colon and rectum) was required at 56 weeks on the drug to see at what point i was at for inflammation and it looked like my upper two thirds of my colon were in remission, but my lower third still had mild inflammation all the way down. recently, most of the inflammation was gone except for one trouble zone further toward the bottom. it’s going to be interesting to see how long it takes for that to disappear, if ever.
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are there any special considerations you have to take in your daily life?
i have to always be near a washroom. if i need to go out, which is pretty rare, like if i’m going to the pharmacy or going to see my study team at the hospital or going to fulfill my horticultural addiction, i will take a small pile of pills to get me through the day. those are generally antispasmodic medications and anti-diarrheals like imodium that will at least allow me to get into my car and drive around the city.
if i want to do a little road trip, i have to take enormous amounts of precautions because accidents happen. that’s one of the worst and nearly dehumanizing aspects of this disease. when you have a cramp and your colon says, ‘we’re going,’ if you’re in your car, you need to have pulled over and run into the shrubberies five minutes ago, because it’s going to happen and there’s no way to stop it.
i know a lot of ibd patients who have had an accident in public, or they’ve had to tear off the road and run into a store. it’s a horrifying moment.
i also get constant, chronic pain from the bulging discs in my spine, which means i always have a bit of limp when i’m walking and i can’t stand for any great length of time. if i’m going to be walking, i usually take a narcotic drug to help get me through. driving hurts — i get a lot of pain from sitting, which is unfortunate because driving is one of my favourite pastimes.
do you think people understand your condition?
i’ve received a lot of unwanted advice. there are plenty of people who — you know that they’re reaching out from a place of love — but they says things like, ‘if you just eat this type of food, you can cure your illness.’ they don’t realize that they are kind of low-key blaming you for creating your own illness. i have gotten a lot of that over the years, but i just tend to not associate with those people anymore.
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clearly, there are significant emotional issues around living with colitis. how do you take care of your mental health?
i found an outlet for my stress — horticulture. i can’t do a great deal of physical activity, but being around plants and spending time in my garden is really good therapy.
talking about my illness also helps, but there are times when you don’t want to talk about it because you’re sick of being sick. then you just snooze certain facebook groups for 30 days because you’re tired of being reminded that you’re sick every day.
keeping company with good friends and those who have chronic illnesses also helps. one of my closest friends has multiple sclerosis. she’s very similar to me and our careers came to an end around the same time. we’ve stayed very, very good friends and prop each other up.
i’m also very fortunate that i have an incredibly supportive family. my parents have been great and my cousin is a nurse — her mom has rheumatoid arthritis, so she really gets what i am going through. my family understands that i will need to leave almost every family gathering early. when you see me, i’m either going to jam on you or i’m going to be medicated — that’s life with multiple chronic illnesses.
this is a topic that a lot of people are uncomfortable talking about. what drives you to be so open about your symptoms?
somebody has to stand up and say something, because people are so embarrassed. i was embarrassed. i went how many years avoiding a diagnosis because i was embarrassed? it had to do with a part of my body that nobody wants to talk about.
we’re prudes. north americans don’t like to talk about things that have to do with the toilet and pooping and diarrhea. people are so afraid to talk about it. we get embarrassed and then we’re shameful, but this causes too many people go undiagnosed.
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people don’t realize that you can die because of complications that come from ibd, and the cancers that can happen if you don’t have your inflammation checked.
so what’s next for you?
taking part in drug studies is a key focus of my advocacy. i’m not working — my flight attendant career is over and i’m on long-term disability. i ask myself, ‘how can i be a productive member of society?’ it’s a little bit of an existential thing — to be a part of something that can hopefully change the lives of other people.
if you or someone you care about is living with ulcerative colitis, connecting with a support network can help to not only learn ways to better manage their health, but also share experiences with others. information, resources and patient support groups can be found at crohn’s and colitis canada and gutsy support.
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