It Takes Guts

When you first see him, Clark looks like your typical 23-year-old English Literature student at McGill University (which is to say ‘bespectacled and bearded’). He is quick to tell you about an exciting new book, or share his thoughts about some of the more colourful characters of the NBA. He’s tall, healthy-looking, with a near-constant grin, and more recently, a penchant for bucket hats. 

This is where I’m supposed to write something cheesy like “but deep-down, he is in constant suffering due to his struggle with [insert disease here] . . .” but I’m not going to. That’s corny and does a disservice to people who live with mental health challenges, but more importantly, Clark isn’t “suffering.”

Sure, he’s been through some of the worst pain imaginable due to disease and inadequate post-traumatic care. But the guy is, for the first time since I’ve known him, truly thriving. He wouldn’t be thriving without the ability to talk about his life, and refusing to let the stigma of disease and mental health define his character. He’s found that talking and writing, not just about the disease but about his life, has been incredibly cathartic, so I jumped at the chance to help spread his story and articulate it in written form. I have seen him fight over the past four years to reclaim his body and mind, but rarely had the opportunity to hear him tell his story in his own words and on his own terms.

I spoke with Clark about his life with ulcerative colitis (UC) and the Post-Traumatic Stress Disorder (PTSD) diagnosis that came years after his colon was removed. He agreed to tell me a bit about the challenges of being young and left without full gut function–a trial that has made Clark into one of the gutsiest people I’ve ever met. Pun absolutely intended.

Ulcerative colitis and Crohn’s disease are two major forms of Inflammatory Bowel Disease (IBD). Both diseases have similar symptoms that primarily affect the digestive tract, acutely manifesting as diarrhea, rectal bleeding, severe abdominal pain, and constipation. However, as the body loses its ability to properly metabolize nutrients and digest food, more devastating chronic symptoms such as fever, fatigue, weight loss, depression, and body dysmorphia can manifest. One of the most difficult parts of living with UC is the length of time between flare-ups; according to the Crohn’s and Colitis Foundation of America, periods of remission may last for weeks, months, or even years. Living within these often irregular cycles of illness places an immense amount of stress on anybody looking to finish school or work – especially young people in critical physical and social developmental phases.

Whenever think-pieces read “it’s time to talk about mental health,” they usually appear in the context of a high-profile tragedy. Sometimes it’s part of an initiative to break down stigma, but these tend to come off as too-little and too-late. These articles, or speeches from politicians, pay lip-service to a broader issue with a token quotation from someone struggling peppered in for “authenticity.”

This “conversation” isn’t meaningful if it only occurs immediately after a tragedy. This way, a “conversation about mental health” means treating people as problems which must be solved, not as human beings fighting their own battles. There’s no excuse to exclude them from this conversation.

Clark’s fight against UC began with excruciating pain in April 2010. His colon had become inflamed and developed ulcers, the response of a faulty immune system that identifies food and other intestinal flora as foreign and attacks them. This caused incredible pain for Clark and, among other symptoms, caused him major weight loss and severe fatigue.

Thanks to immediate lifesaving surgery, his colon was removed and his small intestine was looped around itself to create what is known as a J-Pouch.

Clark told me that “[Surgeons] unwind a part of your small intestine which forms a J, sewn to your rectum. The body is in so much shock when this happens that it doesn’t start to work for at least six months.” Clark decided to take a year off after high school for his body to adjust to the J-pouch, which currently serves as his fully-functional digestive system. That meant that for his senior year of high school, before he could have his small intestine reworked to fit his needs as a J-pouch, he was living with an ostomy bag.

The bag is made of heavy-duty plastic to collect the waste when the body is unable to. It is a procedure that allows for a somewhat normal digestive process, all things considered. However, ostomy bags can break. As any reader can imagine, this causes major anxiety that a bag will break, especially in a public place. Try to imagine dealing with that every day at 16 years old.

Before the surgery, Clark was already treading the difficult waters of high school. Now he faced the added difficulty of navigating that same social setting with a dramatically disrupted digestive system. “I was really self conscious when I had [the ostomy bag], especially romantically. I was terrified of talking to girls. I didn’t want anyone to know, especially girls, that I had a bag of shit on my chest. This was not something I talked about at all, out of the shock.”

At this point in our conversation, Clark grimaces; “…but can you imagine how much worse this would be if I were a girl?” True, he went through Hell and back dealing with the collateral damage of UC, but he’s right.

Society expects women to embody “cleanliness” and “purity” more than men. For example, when young boys make light of their bodily functions, it’s just “boys being boys,” but as Rosie Long Decter wrote in her review of “Bridesmaids,” women are not afforded the same luxury: “Pop culture is one of the biggest culprits in this regulation and sexualization of women’s bodies. Although there are some examples of female perspectives on how women are portrayed in film and TV, the standard portrayal of women still adheres to what film critic and feminist Laura Mulvey calls “the male gaze”: a woman’s body is filmed for the male viewer, making it a source of pleasure – no pooping, puking, and periods allowed.”

IBD symptoms dramatically affect both male and female patients (88.5% reported impaired quality-of-life, 50.2% a negative effect on relationship status, but women are hit significantly harder by issues of body image. 74.8% of females in an Australian study by Muller et al in 2010 reported impaired body image versus 51.4% of males. 67% of female IBD patients in the Muller study reported decreased libido, compared to 41.9% of male patients.

Additionally, a 2014 study by Panara et al at the University of Miami Miller School of Medicine demonstrated that female gender, aggressive disease and increased endoscopic/radiological activity are independently associated with the development of depression in inflammatory bowel disease. Simply, the combined stresses of constant medical probing, pain, and female body image expectations lead to higher diagnoses of depression among women with IBD than men.

 

Selfie, by Molly Gaumer.

* * *

Even after school ended, Clark was dealing with the anxiety of the impending surgery for the J-pouch procedure: “I had this horrible fear of the surgery I would eventually have to have, and recuperating for a year while everyone else was going off to college.”

Clark recalls that before the life-saving procedure, surgeons told him that there was a low risk of nerve damage that could result in difficulties with his sex life. This was a low but impossible-to-avoid risk, as removing the colon was the surefire way to save his life. Clark grits his teeth and tells me that “what they didn’t tell me was that the digestive system is responsible for the production of serotonin.”

Serotonin is one of the most important neurotransmitters in the endocrine system, which regulates the functions  of the whole body. Contemporary medical literature links low levels of serotonin in the brain with depression and other mood disorders, but the current research is lacking detailing the link between low digestive serotonin and depression.

With a significant section of the gastrointestinal tract missing, and the collateral damage to the system caused by UC, Clark’s body had tremendous difficulty manufacturing and maintaining its serotonin, which led to depressive behaviours. That’s a difficult challenge to overcome without adequate post-surgery counseling.

Clark is incredulous as he shrugs and says, “Your gut produces 90% of your serotonin. Nobody told me that without my colon, I would have a hard time dealing with depression. Nobody said a word. No doctors, no surgeons, nobody. It wasn’t until five years later that a therapist mentioned a link between the lack of colon and lack of serotonin…why the fuck didn’t anybody tell me that five years ago? And sure, maybe the research wasn’t there to back this up in 2010. But if I wasn’t told about this risk at Dartmouth Hitchcock Medical Center–one of the best research hospitals in the world–then I seriously doubt anybody else is told about this risk!”

Though unaware of many of the risks of depression and post-surgery health risks, Clark adjusted to life with the J-pouch and enrolled in McGill University in Fall 2012. He found it to be a welcome change from recuperating at home, but even with his eventual diagnosis of depression, physicians did not make the link between a missing colon and his depression clear.

After many post-surgery complications, including a hernia that required Clark to withdraw from McGill twice in one year, he was diagnosed with Post Traumatic Stress Disorder. This diagnosis stemmed from the near-death experience years before, and the intense mental and physical stress the surgeries since then had pressed upon him. Clark’s PTSD diagnosis came as a shock; people in general tend to associate PTSD with “shell-shocked veterans.”

People rarely consider that anybody else struggles with it, particularly young people. PTSD is poorly represented in the media, often as the direct and exclusive result of a violent incident. Discussions concerning PTSD tend to form around high-profile cases of violence, such as that of “American Sniper” Chris Kyle. This fixation on the “need” for PTSD to be linked to violence erases and trivializes the experiences of those whose trauma was not necessarily a violent one, many of whom are young people coping with PTSD. Perhaps the most damaging part of this discourse is the constant refrain that “you’re too young to have known trauma, you need to ‘get over it.’”  

The scatological nature of gut diseases and our general unwillingness to talk about feces also makes an already tough topic that much harder for young people to broach. Stress can lead to flare-ups, and flare-ups can lead to stress, forming a horrific Ouroboros fashioned out of intestine. One study by the International Society for Sexual Medicine showed that “significant associations were found between active disease, fatigue, depressive mood, quality of life, and sexual function for both male and female patients.” Because of the symptoms of IBD such as diarrhea, the need to wear an ostomy bag, fatigue and abdominal pain, patients have an understandably difficult time maintaining a positive body image. The links between these symptoms and poor sex lives reinforce one another. Young people in that critical stage of becoming more in tune with their own sexuality often have much of their self-worth tied to their partner’s acceptance or rejection. It’s not difficult to imagine how IBD might intrude on a healthy sex life.

When Clark started to reach out to other young people with UC and Colitis, he joined every Facebook group for survivors that he could find. Looking to find someone to talk with about his experiences and “get over the alienation and denial” of UC, Clark sent messages to all of these groups, and only one person (significantly older than him) was willing to meet up and talk. He hypothesizes that embarrassment, anxiety, and the private nature of this disease made people (especially young people) unwilling to meet up, which fuels even more stigma about the disease.

The majority of the groups were specific to American and British young people, and Clark noticed a key difference in the tone of the discussions in these groups. Clark recalls with a smile that “In the UK groups, everyone is posting selfies with their stomas, they’re all smiling, they’re all writing positive messages about loving life with nicknames for their stomas,” similar to the 2015 viral Facebook post made by Luke Bennet, a Welsh University student with UC.

luke bennett

Selfie, by Luke Bennett

Bennet wrote in his post that, “The thought of having a ‘bag’ is terrifying as most of the young people you see around you are confident with their bodies and its [sic] the time in a persons [sic] life when they should be enjoying life without any worries. However, life isn’t always kind to us and the decision for me was either to have surgery and live with a stoma bag, or continue with this disease until I was going to need emergency surgery in the future.”

American teens with UC and Colitis were, on the other hand, “depressed, they’re down and out, the bulk of the posts are people crying for help,” according to Clark.

Clark theorizes that this disparate reaction is likely because of the much better-equipped British health infrastructure; people rarely have to make the choice between getting a necessary surgery or living in crushing debt post-intervention, as so often happens in the USA.

These harrowing experiences have made Clark into the person he is, and have motivated him to pursue a master’s degree in Public Health. While he used to feel that the only people who could speak his language would be those who had specifically experienced a near-death experience as a result of IBD, he now finds solidarity in “just recognizing any person who has gone through any traumatic experience or mental or physical health problem…that’s propelled me to go into public health. This lack of care is reflective of the medical system that’s in place, and I’m very interested in drafting public policy to make post-care a mandatory part of the system. Nobody should be made to leave the hospital after an invasive surgery without any counseling.”

To be sure, Inflammatory Bowel Disease and its wicked stepbrothers ulcerative colitis and Crohn’s disease are horrific diseases that require a person’s complete ability to fight for their life. Holding down a job, studying, or maintaining any kind of long-term commitment is difficult enough without the interference of these diseases, and the collateral damage caused to the body makes recovery a long, difficult path. Young people, and as demonstrated by the statistics, particularly young women, must have access to adequate post-surgery counseling in order to maintain a sense of normalcy in their lives. Medical care does not end when someone wakes up from surgery.

Clark shows off a purple ribbon tattoo meant to raise awareness about ulcerative colitis.

Clark shows off a purple ribbon tattoo meant to raise awareness about ulcerative colitis.

 

The featured image, “Gut Snake,” was done by Rhian Lewis.

 


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