For years, Jack felt he needed to hide his ulcerative colitis as much as he could. His symptoms first struck when he was 14, and he ended up spending most of his young adulthood quietly adapting his life around what was brewing inside him.

Today, after one of the worst periods of chronic illness he has experienced, Jack has traded this silence for a voice. His message, particularly to other men living with IBD, is simple: speaking up is part of fighting back.

“I was quite an anxious teen,” Jack says. “The blood in my stool, I just tended to ignore it.” At 16, severe abdominal pain finally sent him to the hospital. A scan led doctors to suspect diverticular disease, quite uncommon at his age. But they shot down the need for a colonoscopy.

Years passed, but the pain continued. Jack went to the toilet more often than everyone around him. He struggled with exhaustion, sometimes relying on energy drinks simply to get through college. “I just thought it was normal,” he says.

Even his social life began quietly revolving around access to bathrooms. He avoided trips to places without toilets, including days at the beach. It wasn’t until a few years later that a colonoscopy finally gave him the right diagnosis: ulcerative colitis.

Jack found clarity, but he didn’t understand the impact of inflammatory bowel disease. “I didn’t get a lot of information,” he says. “I didn’t have a lot of help.” Like many IBD patients, he had to discover the ins and outs of his autoimmune disease himself.

For too long, he remained mostly unaware of the range of treatments available to him. “I just thought this is the new normal, this is what I have to get used to, and not that my quality of life could change,” he says.

Lack of knowledge was not Jack’s only problem. The other elephant in the room was shame. As a result, he refused to take suppositories. “I’m not gonna put anything up there,” he says. “I don’t need to do any of that.”

He also hid symptoms from partners and new friends, putting himself through a lot of pain just to mask his disease. At work, he struggled with his superiors. “It was all, Jack, you were on the toilet too much. Jack, you’re not on the phone enough,” he says. “I was like, what do you want me to do?”

Again, he chose to suffer quietly. “The embarrassment of being a young man who had this was the biggest problem of it all for me,” he says. It took him around five years to comfortably admit he had ulcerative colitis.

Knowing more about how IBD is treated, he began questioning the lack of proactivity from his medical team, especially in the space of medications. That shift from passive patient to active self-advocate has become increasingly important. And it couldn’t have happened at a better time.

A period of intense stress, including several family deaths and a difficult relationship, coincided with the worst sustained flare of his life. “I hadn’t really had a break from it for about a year and a half,” Jack says.

He was bleeding consistently. Urgency became severe enough that he sometimes couldn’t reach a toilet while driving between appointments for work. For someone who had spent years hiding from the realities of his disease, losing that control was particularly difficult.

Jack has since tried different medications, including steroids and mercaptopurine, an immunosuppressant that has triggered infections, vomiting and frequent days off work. He is no longer downplaying his illness.

“I used to be humiliated by my body in a sense,” he says. “And now I don’t care. It’s my body. It is what it is.” When he is flaring, he no longer believes pushing through is automatically a sign of strength. “I know what I need to do. I need to rest up,” he says. “I need to get my body better to get the best out of me.”

Jack used to power through this days at a “thousand miles an hour.” But IBD eventually forced him to understand that slowing down isn’t failure. “My body has told me when to slow down, and I enjoy being a bit more slow,” he says.

Exercise has also helped repair a relationship with his body that had become defined by symptoms. Exercising and changing his diet allowed him to see his body becoming stronger. “You’ve got to learn to love your body because you only get one,” he says.

For Jack, masculinity had once been part of what kept him silent. If he could speak to the teenager who first noticed blood and said nothing, his advice would begin with two words.

“Be brave,” he says. “Be smart, you know you’re right and don’t listen to other people making your choices for you.” He would also tell himself to stop hiding behind an idea of what a man is supposed to tolerate. “If you are not making noise, you will drown.”

Jack emails his medical team when symptoms change. When appointments are cancelled, he follows up. He asks about treatments. He challenges them when he feels something’s off. “No one’s going to save you but yourself,” he says. “You have to advocate for yourself.”

Thinking about the future of his IBD, Jack admits that he once viewed the possibility of a stoma with extreme fear. Today, he refuses to let a surgery he may never need dictate the life he has now. “If I end up with a stoma in years to come, I end up with a stoma,” he says. “I’ll worry about it then.”

Instead, he plans. He knows where the toilets are. He changes activities when his body won’t cooperate. He rests when he needs to.

And when the disease overwhelms him, he allows that too. “The last couple of months it has got me down,” he says. “I’ve cried, and I’m not a massive crier.” Jack knows he will overcome the challenge.

His ulcerative colitis remains active, and his treatment journey is far from over. Today, he practices what he preaches. He talks to people about it. He asks questions. He stays on his doctors. He rests without apologizing.

Jack spent years doing the opposite. Now he speaks openly to take ownership of the disease that once controlled so much of his life. “Be strong, be you, be the change yourself,” he says.

From a teenager who hid blood in his stool to a man willing to discuss ulcerative colitis publicly, Jack sums up his transformation journey in the most poignant way: “Stigma dies when we change. We can’t wait for someone else to change it.”

Follow Jack on TikTok @jackhunt26

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My IBD memoir, My Year on the Toilet, has been out in the wild for a couple of months now, and I’m sharing the second chapter of the book. It tells the story of how I ended up being diagnosed with ulcerative colitis in 2013. If you like what you are reading, the book is available on Amazon.

First symptoms

Like many chronic illnesses, ulcerative colitis can lay dormant inside your body for years. Then, at the most inconvenient and emotionally vulnerable moment, it decides to wake up and launch a full-scale assault on your digestive system. According to what my doctors told me, there’s really no telling exactly when it could’ve broken out. Earlier events in my life clearly were not stressful enough to light the fuse and get the shit show started. Maybe it was just waiting for the perfect storm. Something juicer. Something really disruptive.

My mom nearly died from flu complications when I was twelve. My parents’ divorce followed a few years later. Then came my sister’s brain tumor diagnosis in 2008. All of this was traumatic, but apparently not traumatic enough to rattle the sleeping beast quietly napping in my gut. My ulcerative colitis was waiting for something spicier. Turns out, it takes just the right mix of genetics and bad timing to trigger an autoimmune rebellion. For the record, I never ever blamed my parents for the biological bomb they may or may not have passed down to me. My dad is wrestling with an autoimmune condition himself, and frankly, he’s got it worse. Solidarity, dad! I see you.

In my case, it was the abrupt implosion of my marriage that did the trick. That one pushed me over the edge. It was the stressful event that caused the pot to boil over inside me; the trigger launching my body into self-destruction mode. Suddenly, my immune system was ready to go to war. A blessing and a curse, maybe. That’s how I’ve always described it. In some way, I’ve told people I’m glad this shit hit me early enough in my life so that my body still had enough fight left in it. Best-case scenario, I guess.

First blood

Reality had just slapped me across the face, and it was winding up to punch me straight in the gut. With my wife gone, it felt like the entire purpose of my existence had been yanked out from under me. I couldn’t focus on work. I had no appetite. My desperate attempts to reach out to her went unanswered. For the first time in my 29 years on this planet, I felt like my life was completely falling apart, without the slightest chance for recovery. There was no plan B. The crash was happening. And reality? It was indeed setting in. I just wasn’t ready to deal with the consequences.

Heartbroken and mentally exhausted, I fled to my brother’s apartment, just a few miles from the Hollywood sign. I collapsed on his couch like a man defeated, and I didn’t get up for days, except to hit the bathroom or reposition myself in a tighter fetal pose. He tried to get me to eat, but to no avail. My daily routine narrowed to sobbing, binge-watching How I Met Your Mother, and catching shallow sleep between episodes. I was emotionally paralyzed. There was no clarity, no acceptance, no peace. Just agony, on repeat.

It did not take long after arriving at my brother’s place for the first abdominal cramps to show up; subtle at first, then increasingly insistent. I’d experienced bloating plenty of times before (the kind I could blame on mushrooms or cabbage), but this felt different. This pain hit deeper, sharper, and it came paired with a lot of sudden urges to use the bathroom. Enter: diarrhea.

Naturally, I didn’t panic right away. My first thought was stress. Obviously. With my marriage going up in flames, my body was allowed to protest. Surely that was it. Or maybe I ate something weird? Highly unlikely, considering I hadn’t eaten much of anything for days. Maybe it was revenge from a bad oyster I had in Boston three weeks earlier? Clearly impossible. But in my defense, I was not in the best state for rational thought.

Much to my chagrin, the diarrhea didn’t let up. If anything, it leveled up. My bathroom trips become more frequent. Each visit ended with nothing but dark brown liquid sitting at the bottom of the bowl. The cramps tormented my gut. It felt like someone was repeatedly squeezing my colon in a cruel act of physical violence. I felt like Jack Bauer being tortured by angry terrorists, but I was too weak to fight back. This wasn’t normal. And then, just as I thought it couldn’t get any worse, it did: blood.

Bloody, watery stool. That was new. I’d seen all sorts of colors emerge from my poop chute over the years (again, depending on the intake of particular foods), but blood? Blood got my attention. It didn’t trigger full-blown panic, but it made me feel uneasy. Maybe it was time to take this seriously. Maybe it was time to consult a doctor. Or at the very least, head over to a walk-in clinic and mention the sudden appearance of bloody diarrhea.

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Welcome to Hollywood

On February 1, 2013, I walked into one of those standard-issue urgent care clinics tucked between tattoo parlors and coffee shops in the heart of Hollywood. I figured a little rapid care might be just enough to sort out my malaise, but sadly, it wasn’t. Not even close. What I didn’t know then was that this seemingly minor visit would spark a chain reaction of rather dramatic events that would hijack my entire year. My misery was only getting started, and soon, my life would revolve around doctors, hospitals, procedures, and medications. This was just the prologue.

Dr. Claudia, the attending physician, was a total hottie. Young, attractive, sweet. Exactly my type. Granted, my romantic life was the equivalent of a dumpster fire at that moment, but with divorce looming, I was on the hunt for any distraction that might take my mind off my failed relationship. Unsurprisingly, I was feeling wildly insecure, so I was just hoping for a little validation from a woman who wasn’t in the process of leaving me.

Unfortunately, I was neither in the mood nor physical shape to flirt. My mind may have been, but my body had other plans. And if you’ve never had the joy of that particular battle, let me enlighten you: the body always wins. Still, in my sad little fantasy, I imagined Dr. Claudia ignoring her professional boundaries entirely, curing me with a smile, and inviting me out for dinner. Instead, all I got from her that day was an ultrasound and a blood draw. To make matters worse, she didn’t even draw the blood herself.

The ultrasound didn’t reveal anything alarming, so Dr. Claudia sent me home with a prescription for ciprofloxacin, an antibiotic to rule out an intestinal infection. She also advised me to consult a gastroenterologist if the bleeding continued. Blood in the stool is never something to ignore, she warned. Despite her concern, I left the clinic with a weird sense of hope, banking on the medication and my body to find a way to harmonize and get me out of this mess. Spoiler alert: they didn’t. Not even close.

A few days later, I called my dad, a primary care physician in my home country of Luxembourg, who was keen to take a look at the ultrasound and my test results, and hopefully offer some kind of reassurance. I emailed Dr. Claudia with a request for my records, and it wasn’t long before she replied, “highly urging” me to see a gastroenterologist. She was even kind enough to include a list of referrals. “I want to make sure you are well taken care of and that you are seen by a specialist. PLEASE MAKE AN APPOINTMENT!!,” she wrote. Okay, message received. Dr. Claudia may not have asked me to dinner, but her tone definitely triggered me. The next day, I picked the first name from her list and locked down an appointment. I had no clue how much worse things were about to get.

Butthurt

I had no idea what to expect from my first visit to a GI. This was uncharted territory for sure. I was landing on a new planet. Except for the occasional bloating in the past, I never spent too much time thinking about my gut. But here I was, about to enter a brand-new, deeply complicated relationship with my digestive system. One I definitely hadn’t asked for. And one I certainly couldn’t ignore.

The week leading up to my consultation felt like an eternity. The cipro wasn’t doing a damn thing, and sleep nearly became impossible. I was too weak to work and too drained to care. I’d made my way through every available season of How I Met Your Mother, and I was not interested in binge-watching anything else. I would eat a little here and there, but it was out of pure necessity at this point. Meanwhile, I spent more and more time in the bathroom. My stool was loose, bloody, and accompanied by sharp abdominal cramps that felt like my intestines wanted to desperately escape my body.

During a flare, your body becomes a full-time slave to the storm raging inside your gut. The inflammation attacking your colon unleashes a parade of symptoms designed to break your spirit. It starts with the excruciating pain that feels like someone is wringing your intestines out like a wet rag. The cramps come in waves, unpredictable and brutal. They drag on, often with enough intensity to make standing up a nearly impossible task. You’re at war with your own body, and more often than not, it feels like you’re losing. Surrender feels like the only viable option. You wrap your arms around your abdomen, clench your core, and curl up into the fetal position. Hardly a remedy, but a desperate, imperfect countermeasure to briefly ease the pain.

Then there’s the urgency, the ever-present need to rush to the bathroom to empty your bowels. It’s manageable if you are within a few feet of a toilet. Anywhere else, it provokes nothing but fear and frenzy. It hijacks your day, your thoughts, your confidence. It calls all the shots. It confines you to your bathroom for hours on end. That bathroom becomes your sanctuary… and your prison. I lost track of how many times I plopped myself on my fluffy white Ikea rug, just feet from the toilet, waiting for the next explosion of diarrhea to kick in. It’s an awkward, humbling experience, realizing how quickly the body can take over control.

Fatigue is next on the list. Every watery, bloody bathroom trip costs you something. Simple tasks turn into frustrating challenges. Your mind can’t keep up with your physical deterioration. At your worst, you don’t even have the strength to walk to the bathroom. You crawl. The pain thwarts nearly every attempt to rest, and sleep becomes a rare commodity.

As the storm continues to wreak havoc inside you, eating is the last thing you think about. Your appetite fades, and consuming food becomes an ordeal. You wait for the rare, fleeting window when the pain quiets down to get a few bites in. Not because you want to, but because your body needs it. But the more you eat, the more you shit. As your flare rages on, your weight keeps dropping, and all you’re left with is a dysfunctional body wasting away.

I’ve said a lot about the physical pain, but the emotional toll is just as punishing. Nothing crushes your sense of self more than active ulcerative colitis. Even with a high pain threshold, you’ll struggle to hold off the frustration, anxiety and isolation you’ll encounter through the different stages of your IBD journey. The unpredictability of a body you once trusted becomes its own trauma. You don’t know what’s coming next. And you don’t know how to explain it to others. Your mental resilience is under attack.

Eventually, I couldn’t burden my brother with my gnarly situation anymore. I gave him his couch back and returned to my own apartment. I knew it wasn’t easy for him to see me like this, and I didn’t want anyone witnessing what I was becoming. I didn’t recognize myself either. I was watching this version of myself - ghostly, lethargic - wandering through the apartment like someone who had taken a couple of Xanax. I wasn’t just sick. I was vanishing. And no one knew how to stop it… yet. I needed solitude; a place to suffer in silence. Whatever was happening inside me, it was draining me completely. Between that and my excruciating heartache, the only thing keeping my upright for the time being was the hope that my upcoming appointment with the colon doctor would offer a simple, straightforward fix.

Like most mornings in Los Angeles, it was sunny. It was a Tuesday, and after weeks of unrelenting symptoms, I was more than ready to get this show on the road. Driving down Wilshire Boulevard, I wondered what would happen in the next few hours, days and weeks. I drifted so deep into those thoughts that I somehow forgot about abdominal pain for a few precious minutes. Half an hour later, I arrived in the heart of Koreatown. I’d passed through this area plenty of times en route to downtown, never once stopping. But that day was different. That day, I parked my car and stepped out with a purpose. I had no way of knowing it yet, but this particular stretch of L.A. was about to become my second home.

There was nothing remarkable about the building where I was about to confront my medical fate. It looked like a giant beige shoebox - square, ugly and soulless. Your typical American healthcare building. The GI office was tucked away on the second floor. Inside, the waiting area was modest, with far too many chairs crammed into it. The lady at the front desk greeted me with a professional smile, handed me a clipboard, and asked me to fill out a long questionnaire. The form ran three pages long. Most of the questions were tied to something called “inflammatory bowel disease,” a phrase I’d never seen before. Like a good patient, I ticked the appropriate boxes, returned the paperwork, sat back down, and waited.

Dr. Sal wasn’t the type to warm you up with small talk. He gestured toward a chair in his office and jumped right into my symptoms. He was short and direct. A man of few words. As an introvert, I respected that. As a confused patient, I found his approach slightly alarming. Scanning over my recent labs, he didn’t seem too impressed. Or concerned, for that matter. In fact, I couldn’t tell what he was thinking. No nods. No furrowed brows. No mysterious hmms. Just silence. And then, without warning, he snapped out of it. “Okay, let’s take a look,” he said firmly. I processed his words as fast as I could. Take a look at what, exactly?

Roughly thirty seconds later, I was lying on my side on a paper-covered gurney, pants and underwear down, knees firmly tucked up to my chest. “I am going to perform a rectal exam,” Dr. Sal muttered, quite casually. Now, I’m practically numb to these things, but at the time, this was my first rectal exam. At least, the first one I can remember. There’s really no proper way to prepare for a stranger sliding a gloved, lubricated finger up your butt. It wasn’t exactly traumatic, but I wouldn’t call it delightful either. Dr. Sal did what Dr. Sal had to do, and a minute or so later, the glove was off and I was allowed to pull my pants back up where they belonged.

In true Dr. Sal fashion, he kept it mercifully brief. Based on what he’d seen - and felt - the next logical step was a colonoscopy. We scheduled it for one week later, and just like that, he sent me on my way. So this is officially serious, I thought, gripping the steering wheel as I drove back to West Hollywood, still experiencing a mild discomfort around my anus. A FREAKING colonoscopy. It was a word I’d heard before, but only in the context of preventive screenings for people pushing 50. Not 29-year-olds stuck in the middle of a life crisis.

Yet here I was, prescription in hand, heading up Wilshire on this bright, warm Tuesday, one week away from a procedure that would mark the beginning of a new, unexpected chapter in my life. With my marriage in ruins and my digestive system revolting, I realized 2013 had chosen violence. A humiliating reset. A strange beginning to a year that would just keep getting stranger.

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When people talk about inflammatory bowel disease, the conversation usually revolves around symptoms, medications, surgery and remission. Much less attention is given to what happens to the relationship with your own body, and how you can repair it.

For many patients living with Crohn’s disease or ulcerative colitis, the hardest questions aren’t always medical. Will anyone still find me attractive? What if my bag leaks during intimacy? What if it makes a weird noise? How do I feel comfortable being naked again? And how do I reconnect with a partner after months or years of illness?

Those are the questions Trina Ricketts spends her time answering.

Trina works as an intimacy coach, helping people with chronic illnesses and disabilities rebuild confidence, connection and healthy relationships after life-changing diagnoses. She didn’t just study this field; she lived it herself.

After years of unexplained gastrointestinal symptoms, dismissals and emergency surgery that saved her life, Trina eventually found herself facing many of the same fears as the people she now coaches.

“I hated the ostomy so much,” she says. “I cried every time it farted in front of someone.” It took Trina years to understand that the biggest obstacle wasn’t the ostomy itself. It was everything she believed about herself because of it.

“I feel like people with disabilities especially struggle with getting their intimacy needs met,” she says. “And self-worth can block intimacy.” Like many people living with IBD, Trina spent years struggling with what she believed was a broken body.

Her health imploded in 2008. Severe gastrointestinal symptoms disrupted her life, and she couldn’t pinpoint the root cause. “My symptoms were really terrible. But my tests were always coming back normal.”

Eventually, Trina began doubting herself. “Doctors will often gaslight you and suggest that it’s all in your head,” she says. Time passed, and after multiple hospital visits, she was repeatedly sent home with laxatives, despite severe abdominal pain.

In reality, her bowel had already perforated. “I had a hole in my bowel,” she says. “It was leaking poo into my body.” During an emergency surgery, doctors removed 75 percent of her large intestine, leaving her with a temporary ileostomy.

Her body had won the battle, and Trina struggled recovering physically and mentally. “I felt like I couldn’t have a life at all,” she says. Questions and worries consumed her. Would it leak? Smell? Would it make fart noises? Fears that nearly every ostomy patient she works with deals with as well.

After years of coaching people through intimacy, Trina’s come to believe those fears often point to something much deeper. “It’s self-worth,” she says. “The bag isn’t what kills intimacy. It’s your reaction.”

She mentions one common example: what if the bag farts during sex? Her advice may surprise. “If the bag farts, just go, ‘Oops,’ put your hand over it, and keep going,” she says. “Your negative reaction is killing the moment, not the fart.”

According to Trina, intimacy depends more on emotional connection than physical perfection. She believes people often imagine catastrophic outcomes long before they happen. And the key to counter this mindset: visualization.

“Imagine yourself doing the thing you fear, and everything goes perfectly,” she says. “It’s amazing what a difference it makes.” That’s exactly what she did before receiving her permanent ostomy.

“I imagined myself making love with the bag and it being fine,” she says. “It was literally within days that I started to unclench.” Visualization, she explains, helps the brain rehearse confidence instead of fear.

And Trina goes one step further, preaching the importance of self-talk. “So many people don’t realize how negative they are toward themselves,” she says. “Like, I can’t do that. I’m too tired. I’m too sick. I’m not going to be able to do that.”

She encourages her clients to interrupt those thoughts and deliberately replace them. “Our subconscious believes anything we repeatedly tell it,” she says. For her, rebuilding intimacy begins with changing the relationship you have with yourself.

One of the concepts she wishes more people understood is something called touch starvation. “I wish someone had told me that touch is a need, not a want,” she says. After long periods of illness, many people lose physical affection.

Simple acts like hugging, cuddling or holding hands quietly disappear. “When you’re not touched for a long time, you subconsciously begin to believe you’re not worthy of touch,” she says.

This belief can damage relationships without either partner realizing what’s happening. And Trina is convinced simple actions can lead to significant improvements. “Hugging without expecting sex is one,” she says. “ Or rubbing someone’s back, holding hands.”

She recommends scheduling time to reconnect, without distractions or expectations. Just talking, hugging, laughing, and touching. “One hour a week would transform the relationship,” she says.

Trina wouldn’t be coaching people if she hadn’t lived through a chronic illness herself. There was a time she saw herself as a burden. She stopped feeling desirable, or worthy of affection.

Following her surgery, she lost a ton of weight. “I looked like a skeleton,” she says. “It was so hard to see my stomach destroyed.” For years, she worried that no one would ever find her attractive again.

But Trina opted for action. She believes she wouldn’t have been able to rebuild her confidence without taking small risks. “I had to risk being naked in front of a lover,” she says.

Each positive experience slowly dismantled the negativity she had carried for too long. “I want to normalize scars,” she says. “I want to normalize a little belly, and I want to normalize a bag.”

When people see someone living confidently with an ostomy, the impossible suddenly feels possible. Confidence doesn’t magically appear. It emerges out of the beliefs you are worthy of love exactly as you are.

For people living with inflammatory bowel disease, there are countless conversations about medications, diets and surgery. Those discussions matter. But Trina believes the conversation about learning to trust your body again matters just as much.

And she is not afraid to have that conversation with you.

Check out Trina’s official website, and follow Trina’s IBD journey on Instagram @intimateostomate

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Many people can trace the beginning of their ulcerative colitis to a specific day. An abdominal pain that never went away. A flare that hit out of nowhere. But for Alicia, it was never that simple. In her case, inflammatory bowel disease had been quietly shaping her life from the very beginning.

“I was symptomatic from birth,” she says. “I had some bleeding in infancy.” Although her symptoms settled for a while, they reappeared throughout her childhood. She remembers calling home from school almost every day with stomach aches.

“The doctors were rolling it off as anxiety,” she says. “Like I just doesn’t want to be at school.” Reality looked different. Alicia loved school. It was her safe haven.

Unfortunately, with time passing, her stomach aches, constipation and bleeding were repeatedly dismissed. It wasn’t until she was 14 years old, when her symptoms exploded almost overnight, that anyone realized something far more serious was happening.

“At some point I was crawling to the bathroom because I was so severely dehydrated,” she says. And still, Alicia’s primary care physician first suspected a case of Giardia. It was only when antibiotics failed to improve the situation that her IBD finally came to light.

Within weeks, Alicia was hospitalized. Endless tests followed before a doctor finally walked into her hospital room with an answer. “He told me I have something called ulcerative colitis,” she says. “I was like, what is that? Cancer? Am I going to die?”

For Alicia, her diagnosis brought both devastation and relief. For the first time in her life, there was finally an explanation for the symptoms that had followed her since childhood. And naturally, there was now also the hope that treatment would help.

But her disease had already become dangerously severe, and six months later, Alicia lost her colon. “Toxic megacolon,” she says. “By the time I was diagnosed and being untreated for so long, it was so severe.”

Looking back, the speed of how things unraveled still feels surreal. Alicia spent two months in the hospital trying to regain enough strength after losing sixty pounds. She was placed on bowel rest and intravenous nutrition while doctors hoped her colon would recover. Alas, it didn’t.

“I woke up a few days later, and they told me my colon perforated during the scope and I had an ostomy,” she says. “ I had no time to mentally prepare.” At the time, her surgeon tried to offer hope, explaining that a J-pouch might be possible one day. But as a young teen, all Alicia saw was the bag attached to her body.

“I didn’t want to have an ostomy,” she says. “I was afraid of it leaking all the time, and the smell, changing it.” The impact on her body image was severe, and the recovery from surgery was slow.

When her father found an online support forum for children living with IBD, things suddenly shifted. “I connected with someone named Katie, who I’m still in touch with today,” she says. “I think having someone to talk to at that age really empowered me.”

Alicia’s mental health improved. Her body recovered too, and slowly, she began noticing everything her ostomy had given back. “I was able to participate in my hobbies and hang out with friends,” she says. “I really started to love my ostomy.”

IBD has a way of messing with people, especially when they think the worst is over. For Alicia, her journey continued. After years of complications with her J-pouch, recurrent rectovaginal fistulas and multiple surgeries, doctors realized something had been missed.

“I was re-diagnosed with Crohn’s disease right after I graduated college,” she said. “A new diagnosis and ultimately meaning there was no cure.” She started a biologic, and after about six months of treatment, felt a lot better.

Looking back now, Alicia doesn’t describe Crohn’s as something that simply took things away. “It changed the trajectory of my life,” she says. “But in a good way.” The disease strengthened her empathy, and ultimately, it led her somewhere she never expected.

While studying film at Syracuse University, Alicia was assigned a simple video project: tell the class something they couldn’t know just by looking at you. When her short documentary ended with her revealing her ostomy, the room fell silent.

A standing ovation followed. For Alicia, this triggered a profound realization: sharing your story matters. And it’s that realization that eventually led her to Girls with Guts, where she now serves as president.

“It’s a community,” she says. “It’s a safe place to land for people who are newly diagnosed, maybe have been diagnosed for several years, but don’t have that support.” She refers to it as a sisterhood building people up.

Girls with Guts helps women navigate body image, intimacy, dating, motherhood, surgery, aging, and all the conversations that rarely happen in public. “It’s preparing people for surgeries ahead of time,” she says. “And candid conversations about our disease so we can reduce some of the stigmas.”

Girls with Guts is a nationwide operation. “We have a very active private forum of about 10,000 and then from our social media pages span between 21,000 to 24,000 depending where,” she says. “The way we turn our mission into action is through education and medically reviewed information.”

For Alicia, it’s all about action. Every year, her organization invites 70 women to join an in-person retreat. For people struggling with surgeries, Girls with Guts ships post-op care packs and infusion kits to members who might need that extra support.

“It’s been a shocking amount of growth, not only with our organization, but with the IBD community and advocacy space at large,” she says. Growth for Girls with Guts, and growth for Alicia herself.

“You have to learn how to befriend your chronic illness,” she says. “When I was diagnosed, my priority was, how do I get rid of it?” Now, her priority is to support as many IBDers as she can. She reassures people they are not alone on this journey.

She also encourages people to grieve. “Find one person that you can talk to candidly about the disease,” she says. After all, Alicia knows firsthand what one connection can do. Without Katie, without community, her story may have looked very different.

Today, Alicia believes people diagnosed with IBD have more hope than ever before. A cure may not yet be on the horizon, but support has expanded and treatments have evolved.

Communities exist so that no one has to face inflammatory bowel disease alone anymore. And for someone who once woke from emergency surgery to find a body she didn’t recognize, that might be one of the most important advances of all.

Check out the official Girls with Guts website and Instagram @ibdgirls, and follow Alicia’s IBD journey on Instagram @alicia_aiello

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Victoria had been living with Crohn’s disease long before an official diagnosis. The signs had been there for years: bloating, cramping, and subtle changes in her bowel habits that often came and went. Every spring, the symptoms returned, only to fade again. A cycle that made it easy for Victoria to convince herself it was probably nothing serious.

“I quite frankly brushed it off,” she says. “I kind of started having changes in my stool or just really bad bloating and cramping.”

There was one detail that should have raised alarm bells. Her brother had Crohn’s disease. And yet, even her doctor dismissed her. She mentioned a stool test, but nothing ever materialized. Victoria didn’t insist; she simply didn’t know better.

“I feel like stomach problems are so glamorized over the internet,” Victoria says. “Everyone has stomach issues. I figured I just had stomach problems. I never would have thought I had Crohn’s.”

Everything changed in October 2023, when a pain so sharp hit her out of nowhere, Victoria could barely walk. For a while, she thought it was appendicitis. “But I ended up getting my blood tests and then it showed that I had high inflammation levels in my body,” she says.

A CT scan and colonoscopy later, she finally had her diagnosis: Crohn’s disease. A term she was obviously familiar with. “I think I had a little bit of a sigh of relief,” she says.

Her brother had managed his Crohn’s well enough over the years, so the verdict wasn’t immediately terrifying. But that feeling didn’t last long. “The longer I sat with it, it made me sad and realize that my life will definitely change,” Victoria says.

Her gastroenterologist recommended Remicade almost immediately. It worked for her brother, so naturally, it made sense to get her started on biologics as well. “I also had an almost connecting fistula in my bowel loops and we caught it kind of just in time,” she says. And he said the Remicade would reverse it.”

Alongside Remicade came prednisone, a the blessing-and-curse drug many people with IBD develop a complicated relationship with. “I talk about it all the time, how it’s the devil,” she says. “It has its good and it has its bad.”

She noticed the good quickly enough. Her pain settled, and Victoria felt much better within days. The often crippling side effects arrived in tow. “I couldn’t sleep and my mood was super irritable,” she says. “I don’t love taking it, but I definitely know it helps.”

Today, Remicade continues to keep Victoria’s Crohn’s more or less under control. She feels decent most of the time, but her flares tend to arrive with surprising consistency. “October is pretty bad for me,” she says. “And the springtime. April, May.”

Her symptoms make it clear her inflammatory bowel disease is still very much part of her. “My biggest symptom is really uncomfortable bloating,” she says. “I feel so distended that I can’t even eat because I feel so full.”

Cramping follows. So do increased urgency and fatigue. “Nothing’s been ever as bad as when I was first diagnosed,” she says. “I can still function overall, but it definitely lingers.”

Living with Crohn’s means constantly navigating that middle ground. Not healthy enough to forget the disease exists, but often well enough that other people assume everything is fine.

For Victoria, her treatment has introduced another challenge: eczema and possible psoriasis. “It’s kind of completely ruined my skin,” she says. “I’ve had it on my face, my neck, my legs, my arms.”

Her dermatologist suggested switching biologics, but the thought frightens her. It’s a typical dilemma of chronic illness patients. Most often, once you stop, you can’t go back. “I’d rather suffer with the skin stuff,” she says.

Despite this compromise, Victoria has become more intentional about everything she puts into her body. “I definitely drank a lot more before I was diagnosed,” she says. “Now I just don’t see as much of a point. I’m a lot more cautious about food too.”

Cautious about nutrition, but also cautious about her mind, and how to better listen to her body. When the fatigue hits, she prioritizes rest over socializing. “I used to push myself,” she says. “I’m much more in tune with my body now.”

That lesson has been particularly difficult because fitness has always been an important part of Victoria’s life. “I haven’t been to the gym in probably two weeks,” she says. “It frustrates me a lot.”

Exercise supports not only her physical health but also her mental health. Missing workouts feels like losing another part of herself. But her Crohn’s has taught her something she never knew before diagnosis: rest is not a weakness.

“I only know now how important working out is with Crohn’s,” she says. “I want to build muscle and have a strong body. I want myself to still be strong and capable in 25 years.”

At the beginning of her IBD journey, Victoria felt like a prisoner in her own body. But then she heard an idea that shifted her perspective. “Your body’s not fighting against you,” she says. “It’s almost like it was trying to give you these warning signs that something wasn’t right.”

This viewpoint helped her come to terms with her incurable autoimmune disease, although she still wonders what actually caused her Crohn’s to show up in the first place. She fails to pinpoint a particular stressful moment in her young life that could explain her IBD.

One thing is for certain, her outlook on life has changed profoundly. “When your health is in question, nothing else matters,” she says. “It changes your perspective of what’s actually important.”

Today, Victoria works as a mental health counselor, a profession that has only deepened her understanding of chronic illness. “Your brain affects your gut and your gut affects your brain,” she says.

She’s seen firsthand how anxiety, depression and physical symptoms constantly influence one another. “When you’re always sick, it almost becomes your lifestyle.”

Victoria shares lessons from her own IBD journey on TikTok. “I waited so long to go to the doctor,” she says. “I’m trying to advocate for people. If something’s not right, go to the doctor.”

Sharing her story became a way of taking back some control. “If I’m going to have this disease, I might as well make content about it and make other people feel better.”

She uses social media to talk about her own experience, vent when needed, and tackle the seemingly neverending misconceptions circulating online.

“The idea that you don’t need medication and you can heal Crohn’s holistically,” she says. “I think it’s a dangerous message.” She encourages healthy living, but she also knows what uncontrolled Crohn’s can do.

“Nobody wants to be on medication the rest of their life,” she says. “If I had a choice, I wouldn’t want to be. But my health in the long term is much more important.”

For Victoria, Crohn’s has taken away certainty, spontaneity and, at times, confidence in her own body. Yet, it has also given her perspective, patience and a purpose she didn’t expect.

Like many people living with inflammatory bowel disease, she doesn’t know exactly what the next chapter will look like. But she knows she won’t ignore the warning signs again.

Indeed, a lesson worth sharing over and over again.

You can follow Victoria’s journey on TikTok @viiiiicccctooorrriiaa

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Growing up, Harriet watched her father battle Crohn’s disease. She knew of the weight loss, the medications, the pain, the fatigue, and the disruption it could bring to a life. Despite all that, she never saw an inflammatory bowel disease diagnosis in her own future.

Even when she spotted blood in her stool for the first time, in her early twenties, she didn’t immediately assume the worst. Why would she? She was diagnosed with IBS. But her dad knew the signs. “He was a bit like, I think this is more than IBS,” she says.

Harriet still wasn’t convinced, and part of her didn’t want to be, understandably. “I was a bit in denial because I’d seen what my dad had gone through,” she says.

Even after seeing a doctor, clarity remained obscure. A stool test showed elevated inflammation. A colonoscopy followed. The diagnosis was not straightforward. Doctors initially labeled her condition as IBD unclassified because they could not determine whether it was Crohn’s disease or ulcerative colitis.

“It was a bit like that for a few years,” Harriet says. A cycle of medications, hope, setbacks, and eventually the fear she could end up having to fight the same battle she had watched her father wrestle with for years.

“When I was first diagnosed, I had a lot of anxiety around it because I thought I was going to be just like him,” she says. Naturally, her dad quickly became one of her strongest supporters. He understood what no one else could fully understand.

“It really affected my mental health,” Harriet says. “The initial anxiety to start with was horrendous. It was really bad.” This goes to show it takes more than just support to live with IBD. “Eventually, I went to therapy.”

Harriet was put on antidepressants and began confronting the emotional side of Crohn’s disease. At times, her biggest worry was the future. Would she face the same fate as her dad? Would she be able to be better off? Or worse, perhaps?

Inflammatory bowel disease soon handed her the distraction she needed the least: physical symptoms. Her initial treatment included mesalazine, which helped, albeit only briefly. Next up was azathioprine.

“I had a really bad allergic reaction to that,” Harriet says. “Really bad.” Naturally, biologics followed. Humira worked well for a year before she developed antibodies. Infliximab brought high expectations, followed by disappointment.

When Stelara entered the mix, things improved for Harriet. “It was brilliant. It was absolutely brilliant,” she says. For five years, it gave her stability, and her life began to move forward again.

Harriet became a mother. Then she became pregnant with her second child. A happy occasion, but a turning point in her Crohn’s journey. “When I told the hospital I was pregnant, they took me off the medication straight away,” she said.

She remembers feeling frustrated. Other patients she knew had remained on the same medication during pregnancy. Her medical team reassured her they could manage any problems with steroids if necessary. Unfortunately, that was not the case.

Inflammatory bowel disease tends to jump on any opportunity to strike back, when controlled. “I got really, really ill,” Harriet says. “I developed gestational diabetes off the prednisolone.”

Not long after giving birth, everything started unraveling. The Stelara that had once worked so well no longer controlled her Crohn’s. Her body erased any progress she thought she had made.

“I couldn’t control my bowels,” she said. “We couldn’t go for a day out.” IBD had officially taken over, as it so often does. “I was just stuck on the toilets the whole time we went out.”

Desperation kicked in. Harriet started losing faith in treatments. A conversation with her consultant eventually changed the direction of everything. “He was like, I really do think you need to have a stoma,” she says.

Years earlier, when doctors had already brought up surgery, Harriet fought back. “I said no. Absolutely not,” she said. “I’m not pooing into a bag.” She delayed. She fought. She tried to push through.

In March 2023, her own body made the decision for her. An urgent visit to the ER confirmed the worst: Harriet was developing toxic megacolon. Within hours, the surgery she had feared for years ended up saving her life.

She was alive, but nothing was the same when she woke up. “It was awful,” she says. “It was weird because I was fifty percent this is dreadful and then I was fifty percent this is the time to get my life back.”

Harriet nearly fainted when she first saw her stoma. But within days, she adapted. “I was emptying my own stoma bag on day two,” she says. That same day, she changed it herself as well.

After being discharged, Harriet found the relief she was looking for. She knew other challenges were waiting to test her patience and resilience, but she finally had a more hopeful outlook on her future. “It’s given me my life back,” she says.

Today, Harriet runs. She hikes. She swims. She plays sports. “It will not hold your life back,” she says. “I wish I’d have done it sooner.” She accepted her stoma for what it is. “It’s just another part of me.”

Getting there took time though. Harriet was not immune to body image struggles. “I used to think they were really gross,” she says. “Now, I don’t think this is some disgusting thing.”

Crohn’s disease often restricted Harriet’s ability to be there for her family, and even though she made peace with her body and her stoma, guilt remains one of the emotions Harriet talks about most openly.

“They’re not getting 100 percent of me, and I can get a little bit irritable when I’m in a flare,” she says. “I feel really guilty because they’re only little and they shouldn’t have to be seeing that with a parent.”

Between guilt and gratitude, Harriet has learned a lot from her chronic illness journey. The disease has even turned a quiet person into an outspoken one. During her worst, she turned to TikTok in search of support after surgery.

What she found was a community. A platform to share everything she ever wanted to share about her life with Crohn’s. Armed with a fighting spirit, Harriet has become fiercely protective of the IBD community.

“The ignorance from people when it comes to IBD is astounding,” she says. Her tone in many of her videos is fierce. She tackles misconceptions without much courtesy. “I’ll just call it out now, I’ll just call it out because I’ve had enough of it.”

That honesty is what makes her voice resonate with so many people. Harriet isn’t pretending the journey is easy. She isn’t pretending surgery is easy. She isn’t pretending life with a stoma is perfect. She is simply telling the truth.

And if she could go back and speak to the young woman sitting in denial after those first symptoms appeared, she knows exactly what she would say. “It’s going to be a tough journey,” she says. “When they offer you that stoma surgery, just have it.”

Not because surgery is a cure. Not because it solves everything. But because sometimes the thing you fear most becomes the thing that finally gives you your life back. Harriet knows that better than most.

You can follow Harriet’s journey on TikTok @harrietsteadman58

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You’ve been following my writing for the inspiring guest episodes of Colitis Unfiltered. The ones where someone sits down with me, opens up about their IBD, and tells you exactly what it’s like to have their life turned upside down by chronic illness.

That’s not changing. But there’s something I’ve been wanting to do alongside it for a while now.

Every week, things happen in the world of IBD that matter to us. New research. News in the treatment world. Conversations that typically don’t happen during one of your visits with your gastroenterologist. I wanted to create a place to talk about them, in the way you’d explain something to a friend who has the same disease you do.

This is that place. It’s called From the Bathroom Floor. Solo episodes, roughly ten minutes, every other week or so. No pressure. Just me, talking some more IBD.

This is episode 1

Earlier this year, researchers presented results at Digestive Disease Week, showing that combining two existing biologics may work significantly better than either one alone. Especially for people who’ve already cycled through pretty much every other available option.

That’s important news. But I also wanted to talk about the other reaction that news like this produces. Hope and exhaustion aren’t mutually exclusive. And if you’ve been sick long enough, you know exactly what I mean.

Where to find the show

From the Bathroom Floor is part of Colitis Unfiltered. You can find it wherever you already listen to the main show. Right here, for example. And YouTube, Spotify, and Apple Podcasts.

Give it a listen. Tell me what you think. And if there’s something you want me to cover; a topic, a question, something you came across this week that you want a take on… just send it my way.

There is always room for another podcast. Especially one that covers crucial IBD stuff in less than 10 minutes.

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Liesel was only 22 years old when the first signs showed up. Not the digestive symptoms most people associate with inflammatory bowel disease, but rather swollen knees and painful red lumps on her shins. She had always been active, playing sports and living a healthy life.

“Your knees look fine,” the doctor told her, looking at an X-ray. And that was it. For Liesel, life carried on. She attended university. She worked to support herself. She hung out with her friends. And yet, something was afoot.

Crippling fatigue settled in first, followed by headaches, abdominal pain, weight loss, and a growing sense that her body was staging a revolt. “I just didn’t feel well in myself,” she says.

Blood tests pointed to low iron. The explanation seemed reasonable, and again, life carried on. “I thought, well, if there’s something wrong, they should be able to tell me,” Liesel says.

But the answers never came. Instead, blood started appearing in the toilet. “That’s when I felt something was really wrong,” she says. At that point, two long years had passed since her swollen knees.

A colonoscopy later, the results were in: Crohn’s disease. Today, you’d hop on Google and discover everything you ever wanted to know about IBD. But back then, Liesel did not have that luxury.

“This was the 1990s,” she says. “Information wasn’t what it is now.” There was no internet community offering encouragement. No social media accounts showing what life is like after surgery. No videos breaking down treatment options.

“I looked it up in the library and found some textbooks,” Liesel says. “That’s about all I knew.” Her doctor prescribed mesalazine and encouraged her to continue living her life. In many ways, that was exactly what she tried to do. “I just kind of got on with it.”

Until her life transformed layer by layer. Sport was the first casualty. “I stopped playing tennis because my knees hurt and I didn’t feel well,” she says. Social events quickly followed. Food became a challenge.

Liesel’s world was shrinking. “I definitely became a much more isolated person,” she says. “I just didn’t want to talk about it.” Like many people living with IBD, she learned how to hide the disease.

“I didn’t tell people why I wasn’t going,” she says. “I just said I’m busy, or I’m working, or I’m studying.” From there, the isolation expanded rapidly. “I became anxious,” she says. “And I hadn’t been an anxious person before that.”

Anxiety about bathrooms. Anxiety about food. Anxiety about explaining symptoms that felt impossible to discuss openly. Anxiety made her miss out on crucial years of early adulthood. “I became avoidant and quite depressed actually,” she says.

Again, life continued. By 27, two years after her diagnosis, Liesel was married and pregnant with her first child. In many cases, IBD symptoms calm during pregnancy. For Liesel, the opposite happened.

Her daughter had to be delivered early by Caesarean section because her health was deteriorating. From there, it all went downhill fast. “I became somebody who was really tied to home,” Liesel says.

Her pain sharpened. Her symptoms intensified. Her narrow world kept shrinking. “I literally had to put her bouncer in the bathroom because I never knew when I was going to have to run to the toilet,” she says.

When her gastroenterologist recommended another colonoscopy, he also suggested something she didn’t want to hear. “He said to me, you need to stop breastfeeding your child,” she says.

After the colonoscopy preparation left her severely dehydrated, she was rushed to the hospital in the middle of the night with a heart rate of 150 and a fever. Her Crohn’s had progressed. She could no longer eat. Nutrition was delivered directly through a central line.

For two weeks, doctors fought to control the inflammation, but nothing worked. Eventually, her doctor brought up surgery. Her worst possible nightmare.

“I remember wailing,” Liesel says. “I don’t want to have that surgery.” Alas, she wasn’t given a choice. A severe infection led to sepsis, and the decision was made for her. “I woke up with a bag.”

Just like that, Liesel’s body changed. As did her life. “I started to feel better almost straight away,” she says. “This diseased organ was finally out of my body.”

Though the recovery itself was brutal, Liesel quickly found a way to cope: she could finally be a mother. Her sister moved in, cooked meals, cared for the baby, and looked after Liesel while she rebuilt her strength.

And she did get better. Temporarily. Three months later, scar tissue caused a bowel obstruction and another emergency surgery. Liesel’s health problems were far from over. Crohn’s was there to stay.

“I used to tell people, I had Crohn’s disease,” she says. “I realize now how naïve that was.” The fatigue returned, along with the joint pain and skin issues. “I really had to wrestle with myself.”

Years later, additional surgery became necessary to remove remaining diseased bowel tissue. And that was not the end for Liesel’s rollercoaster health journey.

She faced skin cancers, osteoporosis, recurrent infections, viral meningitis and chronic lung disease. And then came the diagnosis that shook her more than anything else: tongue cancer.

A biopsy revealed squamous cell carcinoma, likely linked to years of immunosuppression. “I was very, very lucky I caught it early,” she says. More surgeries followed. Part of her tongue had to be removed. Lymph nodes were removed from her neck.

Liesel persisted, but what made her experience especially difficult was what it took away. “One of my ways of dealing with stress is to talk,” she says. “Suddenly, talking hurt. Eating hurt.”

For the first time since her Crohn’s diagnosis, Liesel’s resilience was in jeopardy. “I felt really low during that time,” she says. “I was wondering what’s next.”

Giving up was never an option. Liesel was a fighter. A wife. A mother. To move forward, she chose acceptance. “Sometimes I’m still angry,” she says. “Eventually emotions pass.”

Decades spent navigating chronic illness teaches you how to hold on to resilience, even during times when nothing seems guaranteed and everything seems fragile. “It just means that you know when you have those times that you’ll get through them,” she says.

Today, Liesel works as a general practitioner and teaches medical students. Ironically, she believes Crohn’s disease helped shape the career she eventually built. “It makes me a better doctor,” she says.

Inflammatory bowel disease, and all the other medical predicaments she had to deal with, deepened her empathy and taught her perspective. “It expands your emotional vocabulary,” she says.

Surgery gave Liesel her life back, and there is not one day she feels any regret. “No one wants to have an operation,” she says. “But if it’s between an operation and your health being so bad that you can’t live your life, then an operation is actually a blessing.”

Liesel never gave up hope. She believes it’s something no one should ever take away from people. Hope carried her through diagnosis. Through surgery. Through motherhood. Through cancer.

If she could sit beside her 25-year-old self on the day of her Crohn’s diagnosis, she would tell herself everything would turn out okay. “You’re going to survive this,” she says. “You’re going to get through it.”

Ultimately, suffering so extensively gifted Liesel a greater appreciation for joy. A resilience she never knew she possessed. “Every single day,” she says, “no matter how bad it is, I’m going to find one good thing.”

This approach has helped her get to where she is today. Liesel never stopped finding reasons to keep moving forward.

You can follow Liesel’s journey on Instagram @drliesel.ibd.ileostomy.hub

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For Kylie, ulcerative colitis arrived without warning. One morning, she woke up with a strange, unsettling feeling. She knew something was wrong.

“I had this strange urgency to go to the toilet,” she says. “I went and I was just like, what the heck was that? That is not normal.”

Several days passed, but the urgency persisted. For Kylie, the confusion expanded.“The same thing kept happening,” she says. “I decided to go to the doctor because this new pattern was not normal.”

It didn’t take long for Kylie to learn her fate. A colonoscopy confirmed the diagnosis: inflammatory bowel disease. More specifically, ulcerative colitis.

Kylie was 35 years old, living in Adelaide, Australia, and raising three young children, including a daughter about to celebrate her first birthday. There was no room in her busy life for a violent chronic illness.

“I hadn’t heard of IBD before,” she says. “The doctor just told me to take enemas and sulfasalazine, and that I’d be getting better.”

Like many people newly diagnosed with inflammatory bowel disease, Kylie entered a world of unfamiliar terminology, medications, and uncertainty. Meanwhile, her symptoms intensified, and she did, in fact, not get better.

“I think it’d been about five months,” she says. “I went back to see my doctor and asked how long I’d have to be on this medication.”

As long as it takes, he told her. No roadmap. No timeline. Kylie was left in the dark. “I was a bit like, am I going to be on this for the rest of my life?”

Kylie sought a second opinion, but uncertainty persisted. Her bleeding got worse. Her body weakened. Resting alone didn’t do the trick anymore.

“They just said, keep going with the medications,” she says. “I really did feel alone at that point.” At home, life kicked into high gear. Her kids needed her, and Kylie pushed through. Some days felt easier than others.

Her husband remembers more than she does. “He said to me the other day that he remembers coming home from work and I’d just be curled up on the bed,” she says. “The kids would just be playing nicely.”

Kylie was so exhausted, she does not even remember doing that. During periods of active IBD, the physical and emotional exhaustion become so overwhelming, days just blur together.

“It’s such a mind game,” she says. “As to what actually happened at that point.” Even now, years later, her oldest daughter still remembers parts of it. “She can remember me feeling sorry for myself, crying, exhausted.”

While Kylie had strong support at home, she felt dismissed by her medical team. Her treatments escalated, and she was told to give it time. From mesalazine to steroids, to higher steroid doses, the experimenting continued.

At one point, she recalls being encouraged to consider clinical trials. “They suggested I do cancer trials,” she says. “Which is obviously not what I had.” By then, trust had already started to collapse.

“I don’t think what you’re offering me is going to suit me,” she told her specialist. That decision marked a turning point. Within weeks, Kylie sought out a naturopath who specialized in gut health.

She wanted someone who approached her symptoms differently and investigated what might be contributing beyond inflammation alone. She finally wanted to understand. She finally wanted some clarity.

“We did poo samples and blood tests and how much fiber is in your gut and microbiome,” she says. “All these extra bits and pieces.”

During all the digging, she was diagnosed with SIBO, or small intestinal bacterial overgrowth, something she believes contributed to how unwell she felt.

“We treated the SIBO,” she says. “And then we went on to do some extra medications,” including supplements aimed at supporting gut lining health.

This wasn’t a quick fix, and it was not an ideal process either. “It was a lot of trial and error,” Kylie says. Diet, in particular, proved difficult. “I think the diet was probably the only thing that held me back a bit.”

Slowly, over nearly two years, things changed. “I finally got into remission,” she says. “Which was amazing.” Kylie never gave up hope, and her life suddenly became manageable again.

Still, ulcerative colitis remains a complex disease, and Kylie stresses the path she took may not be the best direction for others. “What worked for me,” she says, “worked for me.”

Many IBD patients share the same symptoms, but treatments and responses to medications vary greatly. One thing is for certain, every individual deserves to be heard.

“If doctors are not listening to you,” Kylie says, “then perhaps they’re not the person that should be helping you.” Self-advocacy is essential.

Kylie took matters into her own hands and chose a different path in her IBD care. And while she achieved remission, the disease remains unpredictable, and she’s trying to uncover the reasons why.

“I do feel like stress is a big part of colitis,” she says. “It doesn’t cause it, but I do feel like it definitely is a part of it.” Kylie tackled her stress by reshuffling priorities and work from home.

“My kids are my number one,” she says. “Work is number two.” She’s grateful to be at home with her children. “And while they’re at school, I can focus on resting.”

Rest comes in handy these days. At the time of this interview, Kylie was fighting through a flare. “Unfortunately, I’m probably at the worst place I’ve been in probably in the last two years,” she says.

The frustration is there. You work long and hard on your body and mind to tame your disease, and when you finally get there, the shaky ground under your feet starts collapsing. But this time, Kylie counters with a better plan.

Instead of panic, there is a process. “I’ve been in contact with my naturopath again,” she says. “She’ll just ground me. She’ll put me back on the right track.”

If she could go back to the moment of diagnosis, four years ago, frightened and confused, there is one thing she wishes someone had told her.

“That it is okay,” she says. “These things happen. Just get through it.” Kylie has no regrets about her way of getting through it. “I would not do anything different.”

Despite the setbacks, she achieved something she once desperately wanted. Ulcerative colitis changed her life. It challenged her trust, tested her family, and forced her to navigate years of uncertainty.

Even though she still flares occasionally, she focuses on the path forward. “We’ll get there,” she says. To many IBD warriors, that’s precisely what fighting through their active disease sounds like. Simple words that’ll go a long way.

You can follow Kylie’s journey on Instagram @kyliesofficialjourney

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Short on time, but still need your dose of IBD talk? The Drop is a collection of honest moments from the Colitis Unfiltered podcast, stripped down into bite-sized clips you can enjoy in minutes.

If you’re in a rush, start here. It’s worth it.

1. Kristin: When inflammatory bowel disease becomes your calling

Living with inflammatory bowel disease doesn’t just shape your health; for some, it reshapes their entire life path. In this excerpt of the Colitis Unfiltered podcast, we explore how an early diagnosis of ulcerative colitis and life with an ostomy became the foundation for a career built on care, advocacy, and service within the IBD community.

2. Leah: What it’s like being an ostomy nurse with IBD

What happens when someone who lives with an ostomy becomes the nurse helping others accept theirs? Ask Leah, because that's exactly what she did. Leah, a certified ostomy nurse shares how her own journey with IBD, surgery, and an ostomy led her into gastrointestinal nursing and eventually into wound, ostomy, and continence care.

3. Kelli: How talking about IBD changed everything

Opening up about inflammatory bowel disease isn’t easy, and for many people with ulcerative colitis or Crohn’s, talking openly about symptoms, fear, shame, or identity can feel impossible. Kelli shares how a PhD program in health promotion forced her to confront her diagnosis publicly, why studying ulcerative colitis changed her self-identity, and how connecting with other IBD patients during research interviews became unexpectedly healing.

New drops every other week. Subscribe if you want the real version of living with IBD, not the filtered one. Share this with anyone who lives with a chronic illness.

For more raw stories and IBD conversations, subscribe to Colitis Unfiltered here, and follow Colitis Unfiltered on Reddit / YouTube / Instagram / TikTok / Threads

Kyle was only nine years old when his body first started to turn against him. At that young age, illness is typically supposed to be temporary. Something that passes quickly, without much fanfare. But what Kyle went through didn’t pass. It stuck around. For years.

“I was throwing up, I was having really, really intense stomach pain and diarrhea, going to the bathroom a ton,” he says. “I felt very tired.” Doctors initially treated it like a common illness. “They were testing me for a stomach flu,” he adds. But it didn’t behave like one. It lingered, and eventually, it intensified.

At nine, Kyle couldn’t keep up with what was happening. He remembers seeing different doctors and conversations happening around him instead of with him. “They were talking to my parents instead of talking to me,” he says. “I’d go to see the doctor, get pricked in the arm, and I wasn’t even paying attention to what he was telling my parents.”

Eventually, there was a diagnosis: Crohn’s disease. Kyle was still waiting for answers. “No one ever really explained to me what Crohn’s is, what caused it, and why it manifests,” he says. “It wasn’t until I got to college over a decade later that I got a deeper understanding of it.”

There was one thing Kyle remembers hearing a lot back then: what he shouldn’t eat. “You can’t eat popcorn, nuts, seeds, beans or you’ll have to get your intestines taken out,” he says. For a child, that wasn’t guidance. It was fear, and it shaped the way he lived for years.

“I spent the next decade thinking if I had these foods, I’m going to have to have major surgery,” Kyle says. He was never given a framework to understand the disease itself. Only rules or restrictions. And so, Kyle adapted.

“I kind of denied the existence of it,” he says. “I’ve never been in remission. I’ve always had active disease.” As a result, he started hiding his symptoms. “It’s embarrassing to talk about,” he says. “Having to go to the bathroom a lot, with diarrhea and stomach pain.”

Kyle eventually lost trust in his body. “I really hated this feeling that my body was failing me,” he says. “I was so frustrated that, no matter what I did, I would still feel really, really sick.”

For a while, Kyle ignored all the restrictions and symptoms. He even closed himself off to advice. “I really tried to push myself beyond what my doctors told me I could or couldn’t do,” he says.

As he transitioned into young adulthood, treatment became its own long, exhausting cycle. Remicade was the first medication that worked, at least partially. But even then, it never fully controlled his inflammatory bowel disease.

“I still had extreme abdominal pain, diarrhea and fatigue,” he says. “But the inflammation wasn’t increasing.” Kyle was not healing, but it seemed his Crohn’s reached a level of stability. Until that stability collapsed and antibodies ruined the Remicade party.

With one treatment out of the picture, new ones headed to the front lines. “Methotrexate made me extremely sick,” he says. “Then there were a ton of other pills to deal with the side effects, and then some of those pills had other side effects.” Enter prednisone.

“That’s the worst experience I’ve ever had in my life with medication,” Kyle says. “I felt out of control with my body.” From dealing with moon face to feelings of depression, he didn’t care whether he lived or died.

Symptoms persisted. The abdominal pain and diarrhea continued to mark his daily life. Kyle struggled to see a way out of his predicament. Eventually, the situation reached a point where options were running out.

“They wanted to put me on a clinical trial that would compromise my sperm,” he says. “I’m a sophomore in college, and I’m being told my last opportunity is some experimental drug.” Kyle refused to see this as the reality of living with chronic illness.

He tried one more medication: Humira. It worked, again partially. Enough to stabilize, but not heal. Again. “I still have active inflammation, and I still have symptoms,” he says. “I’m in college, drinking a lot, not getting a ton of sleep.”

Looking back, he sees the contradiction clearly. But not at the time, in the midst of fighting active IBD. “I didn’t want to feel constrained by the disease,” Kyle says. It would take him years, and a shift in perspective, to find a different path forward.

“For a long time, I really hated my body,” he says, “And then I got to a point where I just accepted that’s how my body functions.” Kyle developed more compassion for his body, and instead of fighting back against it, he started working with it.

“I thought diet was one of those woo-woo treatments that don’t actually work,” he admits. “But I learned a lot more about the impact of diet.” With the right support, including a specialized IBD team and a dietitian, things began to shift.

“My symptoms have gone down a lot more,” he says. “This is the closest I’ve ever felt to remission.” He may not be there quite yet, but he finally got a step closer. With a fresh sense of hope, Kyle now focuses on what he can control.

“Sleep, stress, diet, and making sure I take my meds,” he says. “I can make the best type of life I can by focusing on those controllable factors.” And now, he loves his body, and he trusts it too. That trust wasn’t always there.

For years, Kyle avoided being defined by his Crohn’s disease. He avoided talking about it. He avoided the identity that came with it. But all that changed. “I didn’t really view Crohn’s as a disability,” he says. But when he began connecting with others living with chronic illness, something shifted.

“I realized how similar their experience was to mine,” he says. “I felt so much meaning in being able to relate and help these people.” What started as conversation turned into action, and it eventually led Kyle to a project designed to solve a problem he knew all too well.

“I mapped out what it’s like to be a Crohn’s patient,” he says. “And I identified one point that had been really painful in my life.” That point? Diet. It became the foundation for Tummy, a platform aimed at helping patients understand their own triggers.

“The idea behind Tummy is that we provide personalized, actionable insights for what foods and other lifestyle factors are triggering people’s symptoms,” he explains. “And then over time, as we learn more about them and their specific condition, their specific reactions, we’re able to provide clearer patterns and insights into what foods are specifically triggering them.”

For Kyle, this marks a shift from survival to contribution. “Number one is community,” he says. “It is so important to have a support system.” He also believes it’s important to be open about your illness. When he started sharing more about Crohn’s, people were surprisingly accommodating.

“You have a friend who comes by and brings you food one day, even though you didn’t ask, and you realize how kind and nice people are,” he says. “I think just really savoring those small, beautiful little moments in your life to push through at least some of the darkness.”

This is what Kyle would tell his nine-year-old self. “I would say it’s okay to not feel okay,” he says. “And it’s okay to be open about that.” For someone who spent years hiding and fighting, that might be the hardest lesson of all. And maybe the most important one.

You can follow Kyle’s journey on TikTok @tummy0829 and you can check out his app Tummy at trytummy.com

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I feel differently about 2013 than any other year of my life. Anytime I see or hear 2013 somewhere, a wave of unease creeps all over my body. It’s bizarre, really, because the decade leading up to that particular year typically evokes a profound sense of nostalgia; it makes me feel all kinds of warm and fuzzy.

But 2013? It triggers a rapid tsunami of mixed emotions, led by sadness and regret. And this awkward feeling is, unfortunately, justified.

It was the year I got divorced for the first time, and more significantly, the year my inflammatory bowel disease decided to make its debut - two intertwined events that flipped my world upside down and forced me to reevaluate everything I thought I knew about life, health, love, and happiness.

I spent most of that year on the toilet. Not metaphorically. Not as a punchline either. My bathroom became my sanctuary, my safezone, and my prison. All at once.

You’ve just read the opening paragraphs of my memoir My Year on the Toilet.

Inflammatory bowel disease isn’t talked about enough. In the United States alone, 1 in 100 people is diagnosed with ulcerative colitis or Crohn’s disease. An estimated 10 million people worldwide live with IBD. And most conversations around this disease that do happen? They stay safe.

They address symptoms and triggers, treatments, diet, or explain inflammation and remission. All of that matters. But what happens underneath all of that? What does IBD do to your head? Your confidence? Your sense of control?

The best way to answer these questions was to share my own IBD journey.

In 2013, I was overwhelmed, and my acute stress turned into something I couldn’t control. The pain surged past my tolerance. The urgency kept me tied to the toilet. And the blood? The blood showed me my body had staged a full-on rebellion.

Buy MY YEAR ON THE TOILET

I spent my days curled up on the couch or the bathroom floor, hands pressed firmly against my lower abdomen to counter the sharp pain shooting through my inflamed intestines.

Food became my enemy. My weight plummeted. Sleeping became an ordeal. Medications had little effect. The physical battle soon invaded my mind. Isolation took hold, and hope for better days dwindled.

My Year on the Toilet exists because I couldn’t find anything that felt real when I needed it. I wrote this book to express what IBD does to your body and mind. What it feels like to live in a body you can no longer rely on.

This memoir is a raw, unfiltered account of living with inflammatory bowel disease. It captures the unpredictability of the disease. The challenges of finding a treatment that works. The social collapse it triggers.

If you’re living with IBD or a chronic illness, you’ll recognize yourself in parts of it. Perhaps in the bathroom floor scenes. Perhaps in the way relationships quietly fracture when you can no longer show up the way you used to. Perhaps in the moment you stopped trying to explain what was happening inside your body because the explaining itself became exhausting.

If someone you love has IBD, this book might be the closest you’ll get to understanding what they’ve been carrying. Or why, at some point, they stopped trying.

My Year on the Toilet is now available everywhere. If this resonates, you can check it out here:

🇺🇸 Amazon US → http://amazon.com/dp/B0GT4DGKVP
🇬🇧 Amazon UK → http://amazon.co.uk/dp/B0GT4DGKVP
🍎 Apple Books → https://books.apple.com
▶️ Google Play → https://play.google.com

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Short on time, but still need your dose of IBD talk? The Drop is a collection of honest moments from the Colitis Unfiltered podcast, stripped down into bite-sized clips you can enjoy in minutes.

If you’re in a rush, start here. It’s worth it.

1. Janelle: Body image, shame, and living with IBD

Living with inflammatory bowel disease can deeply affect body image, intimacy, and self-worth. In this excerpt from the Colitis Unfiltered podcast, we confront the shame, embarrassment, and emotional fallout that often comes with ulcerative colitis, Crohn’s disease, accidents, and living with an ostomy.

2. Clare: From insecure to confident with a stoma

Clare discusses how living with inflammatory bowel disease can distort how you see yourself, from being extremely underweight and insecure, to facing the fear of being judged in public. And then something unexpected happens: after ostomy surgery, confidence starts to come back. Even wearing a bikini again, with a stoma.

3. Sarah: IBD, body image, and learning self-acceptance

Sarah reflects on what it means to grow up sick during your teenage years and early adulthood. From navigating flares and weight loss to building resilience and dark humor, IBD shaped her identity in ways both empowering and painful.

New drops every other Wednesday. Subscribe if you want the real version of living with IBD, not the filtered one. Share this with anyone who lives with a chronic illness.

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Jaime was 25 years old when she first said the words out loud: “ulcerative colitis.” At that specific moment, she wasn’t sitting in a doctor’s office. She was at work, on her lunch break, staring at a screen.

“I had every symptom… if it was on WebMD, I had it,” she says. “And I actually diagnosed myself on my break at work.” She called her mom immediately. “I said, my gosh, I think I have ulcerative colitis.”

Her mother didn’t take it seriously. Jaime didn’t either. At least not fully. “I was like, I’m probably not going to go to the doctor, because what if something’s wrong?” she says. Clarity preceded denial.

Even though Jaime faced persistent symptoms, she let time pass, hoping it would resolve on its own. A short course of prednisone for an unrelated reaction temporarily masked everything. “I felt like I was on top of the world again,” she says. “I never went to the doctor.”

Months later, it all collapsed.

One weekend, she went home for a local festival. When she woke up the next morning, nothing was the same. “I thought I was hungover,” she says. “But as the day went on, I got worse and worse.”

Eating made it worse. Rest didn’t help. Days later, she knew something was wrong. Blood work confirmed what her body had already been telling her. “My white blood cell count was outrageous.” A gastroenterologist referral followed.

“I was missing more work, and at that point I was starting to get pretty scared,” Jaime says. “I didn’t want a generic IBS label, but I didn’t want it to be really serious either. I just wanted a solution. I wanted a quick fix.”

What she got instead was something else entirely. At first, she downplayed her symptoms. “Girls don’t talk about those things,” she says. “You don’t overshare.” But her doctor quickly saw through it. He told her she didn’t look all too well.

A colonoscopy was the next logical step. Again, Jaime tried brushing it off. “Cancer patients and old men have colonoscopies,” she says. “Not me. I’m young. I’m healthy.” Her doctor didn’t flinch. She needed one, and she needed one stat.

That was the moment the illusion cracked.

The procedure itself became another hurdle. Jaime suffers from a crippling fear of needles, and the nurse’s attempt to place an IV triggered a full panic attack. Jaime’s father couldn’t watch and left. Her mother stayed steady, putting on the mother warrior face.

Jaime got through it, and the diagnosis caused relief and denial to collide. “I don’t know how you’ve been living like this,” her doctor said. “You are the worst I have ever seen undiagnosed in my entire career.” The damage was already extensive.

“I was relieved that I had a diagnosis,” Jaime says. “But I don’t even know if I processed how truly sick I was until after my surgeries.” What followed was not a straight path. Far from it.

Jaime started taking Asacol and her symptoms quickly improved. But then her condition deteriorated. She landed in the hospital. She was put on Lialda, but that didn’t last either. “I was on it for like three, four days and then got hospitalized again,” she says.

Doctors began to understand the pattern. “I probably had a mesalamine allergy,” she says. The medications that should have helped me were actively making things worse. Eventually, prednisone became the fallback.

“I was up to 70 milligrams a day,” she says. “My belly felt great, but you’re not sleeping well. I was so thin, but my face looked like a balloon.”

Outside of that, her social life started shrinking. “I couldn’t go to a restaurant and eat out,” she says. “That was one of my fears.” While friends were dating and socializing, Jaime was calculating risk. “Eat the wrong thing and it tips the scale,” she says.

Hospitalizations followed. Jaime pushed through, but improvements remained scarce. She kept flaring. Eventually, even prednisone stopped working. “We can’t put you on more,” her doctor told her. She started Remicade, and while early signs showed some promise, the relief wouldn’t last.

By the summer, her body had reached a limit. “I woke up one morning and something was severely wrong,” Jaime says. She couldn’t travel. She couldn’t function. One thing led to another, and a consultation with a new specialist concluded with an ambulance ride back to the hospital.

“I was no longer eating,” she says. Her condition seemed no longer sustainable. A colonoscopy and an MRI later, her doctor sat down beside her, proposing surgery. “That was my worst fear,” Jaime says.

In that moment, everything she had tried to avoid became real. Her life came crashing down on her. She was exhausted. Terrified. Her dad stuck around this time. “He said, we’ll just cry together. And that’s what we did,” she says.

The J-pouch surgeries came in stages. First, her colon was removed and an ileostomy created. Then came the reconstruction, followed by the takedown of the ostomy. Each step came with its own physical and emotional weight.

“It’s shocking to see your stoma for the first few times,” Jaime says. “You’re paranoid. You’re worried people can see it or smell it.” At the time, there was no visible community. “It felt a little shameful,” she says. “Embarrassing.”

Over time, Jaime slowly managed to love herself again. “I learned my body,” she says. “I learned how to take care of myself.” She’s not cured, but she has her quality of life back. “I haven’t been on medication other than antibiotics for pouchitis,” she says.

Today, she travels. She socializes. And she finds pleasure in eating. “I can eat salad, nuts, popcorn, and I am just so incredibly lucky to wake up most days and feel really good,” she says.

There are trade-offs, of course. Dehydration. Inflammation. Adjustments that never fully disappear. But nothing compares to her violent flares. “I would choose this every single time,” Jaime says. Her IBD changed. And so did she.

“It made me see how strong and capable I was,” she says. “It taught me the importance of listening to your body.” She also found value in advocacy. “Advocate for yourself. I cannot stress that enough.”

Sadly, not every doctor will listen. Not every specialist will be proactive. Not every system will respond in time. “If you feel something is wrong, advocate for yourself,” she says.

Looking back at her rollercoaster inflammatory bowel disease journey, there are things Jaime would change. “I should have gone to the doctor and not waited eight months,” she says. Maybe the outcome would have been different. Maybe not. But the delay mattered.

Jaime has made peace with herself and she would not change a thing about how she lives now. “Don’t stop living your life because of it,” she says. “It’s not a death sentence.” Even at her worst, there were still choices.

“If there’s something you want to do… do it.” Waiting for the perfect moment may cost you everything, and sometimes the thing you fear most is the thing that gives you your life back.

Jaime is not cured, but her life changed. She may not be living the life she had planned before IBD, but she is living the one she fought hard to keep. And she is choosing to live fully every single day.

You can follow Jaime’s journey on Instagram @rooted_and_resilientibd/ and you can purchase her helpful IBD journal Rooted & Resilient on Amazon.

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Short on time, but still need your dose of IBD talk? The Drop is a collection of honest moments from the Colitis Unfiltered podcast, stripped down into bite-sized clips you can enjoy in minutes.

If you’re in a rush, start here. It’s worth it.

1. Hannah: IBD symptoms don’t always disappear after surgery

Even without a colon, extraintestinal manifestations like joint pain, skin issues, eye inflammation, and more can still flare. Hannah discusses why ulcerative colitis or Crohn’s symptoms can continue long after colectomy.

2. Leah: Life after colectomy with Crohn’s disease

Leah shares what happens after a total colectomy for Crohn’s disease, why surgery isn’t always a cure, and how ongoing treatment can still be part of life even without a colon.

3. Janelle: I didn’t want a stoma, until this happened…

Janelle unpacks what remission, cure, and recovery actually mean after ulcerative colitis, especially when autoimmune disease doesn’t simply disappear with the colon.

New drops every other Wednesday. Subscribe if you want the real version of living with IBD, not the filtered one. Share this with anyone who lives with a chronic illness.

For more raw stories and IBD conversations, subscribe to Colitis Unfiltered here, and follow Colitis Unfiltered on Reddit / YouTube / Instagram / TikTok / Threads

Clare was on a night out with friends when inflammatory bowel disease decided her time had come. For her, it all began with a small disruption that, at the time, seemed unrelated to anything serious: she lost her purse.

“I still know to this day what happened,” she says. “I was out with some friends, and halfway through the night when I looked for my purse, it had gone out of my bag and that was my trigger.”

The next day, Clare traveled to London to visit her sister. “I started feeling unwell,” she says. “I had really bad diarrhea.” What followed was not gradual. It was immediate. “I started to have severe pain on my right side, and the doctor thought I had appendicitis.”

But it wasn’t appendicitis. It was something far more complex. Something that would stay with her for decades. “They didn’t really tell me much at first,” she says. “They did various tests, I was constantly sick and running to the loo, and I was just feeling so unwell.”

After spending ten days in the hospital, Clare’s symptoms finally began to ease. “When you’ve been so unwell and you suddenly start to improve,” she says, “it’s quite a euphoric feeling.” She felt better than ever.

Alas, for Clare, that relief was only temporary. “They said, you’ve got inflammatory bowel disease,” she says. “Not sure which one you’ve got. It could be Crohn’s or ulcerative colitis.” Back then, there was no internet. No forums. No shared stories. Just uncertainty.

“It was very difficult in those early days,” Clare says. “Not knowing what’s going to happen to me.” Navigating IBD at eighteen meant trying to hold onto a version of life that no longer quite fit. Nights out, spontaneity, all of it now filtered through a body that could turn against her without warning.

Clare’s first line of defense: steroids - the blessing and curse of inflammatory bowel disease treatments. They worked, but only temporarily. Every taper risked another flare. Every flare meant going back up again. A vicious cycle all too familiar among IBD patients.

“If I got to a certain point on the steroids, the symptoms would return,” Clare says. “And I’d have to increase the dose again.” The side effects were along for the ride as well. “I got the moon face. I was starving. Hungry, eating everything in sight and wide awake at night.”

Back then, taking meds became all about survival, not stability.

For years, Clare followed a rhythm many people with IBD know well: flare, treatment, remission, repeat. “I always had a flare at least once or twice a year,” she says. “That was enough to go on steroids again.”

There were attempts to find something more sustainable. Medications like azathioprine eventually brought something close to balance. “Surprisingly, I was absolutely well for fourteen years after that,” she says.

That period of peace was long enough for her to build a life. To get married. To have children. To believe, cautiously, that maybe the worst was behind her. But even then, the disease never fully left her mind.

“I never really thought it was gone,” she says. “I thought, there’s no way it’s going fully right.” Clare was right. When the disease returned, it did not ease back in. It came back aggressively, destroying all the stability she had built.

“I started to get worse and worse,” she says. “I started to not be able to walk. And I know that can be a sign of sepsis.” Her husband took her to the hospital. From there, things accelerated at a dramatic pace.

“The colorectal surgeon came by and told me my bowel had to come out,” she says. “He said, how about tomorrow?” There was no deliberation. No gradual acceptance. The surgery was going to happen.

“It was so scary,” Clare says. “I knew all about stomas, but when you’re told you’ve got to have one, it’s absolutely terrifying.” And yet, beneath the fear, there was also a kind of resignation.

“I was so ill I thought, I’ve got to do it anyway.”

Clare had only hours to process what her life could look like after surgery. “I was very frightened,” she says. “I remember saying, I’m really, really scared.” Then the anesthetic took over. And everything changed when Clare woke up.

The surgery itself was only the beginning. Her recovery was anything but linear. The complications rolled in quickly: a rectal blowout, pelvic sepsis, additional procedures. “I was in the hospital for nearly three months,” she says. “And it wasn’t fun.”

Physically, Clare battled her way forward with every ounce of energy she could spare. Mentally, she soon reached a state of desperation. “I did go into a bit of a depression in the hospital,” she says. “Thinking I’d never get out again.”

Despite the unexpected challenges awaiting her after surgery, Clare slowly adjusted to her new life. Today, she speaks about her stoma with a clarity that contrasts sharply with the fear she once felt. “If it was just the stoma surgery, I would say absolutely, my life is so much better,” she says.

The constant urgency is gone. The flares that once stole her life no longer dominate her existence. “I don’t have these flare ups at all,” Clare says. “I don’t run to the toilet anymore. It just goes in the bag.”

Though adjusting to life with a stoma was intimidating at first, Clare adapted faster than she initially expected. “You just get used to it,” she says. “It’s part of you now.” The body adapts. The mind follows.

IBD surgery does not always eliminate the disease, but it does typically improve the patient’s quality of life. “I can’t draw a line under it,” Clare says. “It’s not over.” Complications remain. Pain persists in different forms. The disease, in its broader sense, continues.

One thing is undeniable: Clare’s experience changed her as a human being. “I think it’s made me a bit more caring,” she says. “Of others.” There is a recognition now, not just of her own experience, but of the invisible struggles of others.

“You know what it’s like to be looked at, and know deep down you’re not alright,” she says. “It is hard to keep hope alive, because you don’t know what’s going to happen next.” But Clare keeps fighting.

If she could go back and talk to her younger self, Clare would not promise herself an easy path. She would not rewrite the experience. Instead, she would offer something more practical. “Advocate for yourself,” she says. “Always.” Push for answers. Push for care. Push to be heard.

Clare spent a lot of time in the hospital. But her life did not end there. It changed. For the better. “Life does not have to end after a traumatic event,” she says. “It just changes.” That change is not always easy or straightforward. It is not always complete. But it is real.

And for Clare, that has been enough to keep moving forward.

You can follow Clare’s journey on her blog at tomasthestoma.co.uk, Instagram @tomasthestoma and TikTok @clarebearandtomas

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For more raw stories and IBD conversations, subscribe to Colitis Unfiltered here, and follow Colitis Unfiltered on Reddit / YouTube / Instagram / TikTok / Threads

Short on time, but still need your dose of IBD talk? The Drop is a collection of honest moments from the Colitis Unfiltered podcast, stripped down into bite-sized clips you can enjoy in minutes.

If you’re in a rush, start here. It’s worth it.

1. Hannah: Why I begged to have my colon taken out

When Hannah could no longer handle her active ulcerative colitis, she made a decision, against her doctor's recommendation. She asked for surgery.

2. Ant: Why I chose surgery after years of ulcerative colitis

What happens when medication keeps failing, but doctors still say you’re “not sick enough” for surgery? This is the brutal reality some people with IBD face.

3. Jess: I didn’t want a stoma, until this happened…

Jess didn’t want a stoma. Not even close. But there comes a point with ulcerative colitis where you can’t keep living like this anymore.

New drops every other Wednesday. Subscribe if you want the real version of living with IBD, not the filtered one. Share this with anyone who lives with a chronic illness.

For more raw stories and IBD conversations, subscribe to Colitis Unfiltered here, and follow Colitis Unfiltered on Reddit / YouTube / Instagram / TikTok / Threads

Living with ulcerative colitis means living in a constant state of uncertainty. For Jess, that uncertainty became one of the most difficult parts of the disease. She experienced periods where she felt okay, stretches where life appeared almost normal again. But the fear of what might come next never fully disappeared.

“It was so hard,” she says. “I kept thinking, I’m alright at the moment, but tomorrow I could have a flare.” The unpredictability slowly seeped into every aspect of her life. “It took such a toll on my mental health because I was just struggling, thinking, I don’t know how it’s going to be.”

At one point, the emotional weight became so overwhelming that she sought medical support for depression. “I have been on anti-depressants now for six years because I was in a very dark place.” Ulcerative colitis had not only disrupted her health. It had begun to reshape the way she saw the future.“It was so tiring putting on that clown face all the time.”

Jess’ story did not begin with her IBD diagnosis. “I always had tummy problems,” she says. “And I’d go to the doctors and they would tell me it’s IBS.” Like many people with inflammatory bowel disease, she tried to manage it on her own, adjusting her diet and routines, hoping the symptoms would dissipate.

But then everything changes one day.

“I ended up passing mucus,” Jess says. “I literally thought I’d messed myself.” At first she laughed it off. But within days, the symptoms escalated. Fatigue set in. Pain followed. Soon she began passing blood. “I was losing blood every day. I was losing weight,” she says. “And I was like, I sort of know what this is.”

Jess’ brother had been diagnosed with ulcerative colitis years earlier. She knew the symptoms. But even with that particular awareness, her diagnosis process was slow. It took four months before she finally received a colonoscopy.

“I kept phoning the hospital, hoping for any cancellations, anything,” she says. “I was in so much pain and losing so much blood and weight that I was just desperate.” When the colonoscopy finally happened, the answer came immediately.

Like many people with ulcerative colitis, Jess’ treatment journey became a revolving door of medications and temporary relief. First, she tried steroids. Then enemas. Over time, the list expanded. “I was on infusions, I was on adalimumab, just everything,” she says.

Some medications worked for a while before losing effectiveness. Others failed immediately. At first, the pattern seemed manageable. A flare would appear roughly every three years, followed by treatment and a short period of remission. But her disease didn’t let up.

“You are just not prepared for when you get a flare,” Jess says. “It was always that unknown. Could it be tomorrow? Could it be in a month?” The constant uncertainty eliminated her sense of stability.

She tried everything she could to regain control. Yoga. Walking. Stress management. Researching treatments and lifestyle changes. “I was doing everything I possibly could to try and stay positive,” she says. “Which was hard.”

Jess resisted the idea of surgery for as long as she could. Her medical team had warned her that if medications stopped working, a stoma might become necessary. “I absolutely did not want that,” she says. “I kept thinking that would be the worst thing I could think of.”

During one severe flare, Jess pushed through weeks of physical strain because she didn’t want to miss important family events. Her sister was getting married. Another sibling was moving house. “I was thinking, I’ve got to keep going, keep going,” she says.

As soon as those commitments ended, her body collapsed. She developed intense abdominal pain and ended up in hospital. A colonoscopy revealed the severity of the situation. “I woke up in recovery and they said you need surgery,” Jess says. Ulcerative colitis had won.

Despite her reservations, when she finally looked at the reality of her condition, Jess had a change of heart. “I thought, I want it now. I can’t live like this anymore,” she says. By that point, she had been tracking her bowel movements during her hospital stay. “In the first three days it was 88 times,” she says.

Surgery happened. Jess woke up with a stoma, hoping to move forward with a better quality of life. But her physical recovery was complicated by infections, and she spent nearly six weeks in the hospital.

Emotionally, the adjustment was even harder. “At the beginning I couldn’t even look at my stoma,” she says. “I felt disgusted. I felt awful and wondered how I would be able to live with this.” At the time, she wasn’t ready for the visibility of the bag, the scars from surgery and the unfamiliar shape of her body.

Complications soon followed. At one point her digestive system temporarily stopped working, causing severe internal swelling. “It was really touch and go,” she says. “I didn’t know if I was going to make it.” The experience weighed heavily on her mental health. “I was in a very, very dark place.”

For weeks after finally leaving the hospital, Jess rarely left the house. One day, a friend mentioned that his mother lived with two stomas, one for the bowel and one for the bladder. “I suddenly thought, what am I doing feeling sorry for myself?” she says. That moment planted the first seed of acceptance.

Following advice from her stoma nurse, she gave the stoma a name. “I called it Cherry,” she says. “Because it looks like a cherry.” At the same time, she began searching for others who understood the experience. Online spaces sometimes helped, but they could also amplify fear.

“I was looking at things on social media which were quite negative,” she says. Eventually she connected with Colostomy UK and attended a support group. The meeting helped, but it also revealed something missing. “Everybody was probably 70 and above,” she says. “I wish I had somebody my age to talk to.”

It was this experience that inspired Jess to take matters into her own hands. “I thought, you know what? This stoma has saved my life,” she says. “It gave me back my life.” Jess posted an invitation on social media and set up a casual IBD gathering at a local pub. Eleven people showed up.

From there, the group grew quickly. Today it includes around 35 members and meets regularly in person. “We sit around and talk about our journeys,” she says. “If people want to share, they can. If they don’t want to, that’s fine.”

Guest speakers sometimes join the meetings to discuss different stoma products or practical advice. But the most valuable moments often happen during simple conversations. “Sometimes it’s just people talking to each other one-on-one,” she says.

For Jess, the group has become both advocacy and therapy. A year after surgery, she describes her life in terms she once thought impossible. “Amazing,” she says. “I wish I’d had this years ago.”

Jess is living a full life, but challenges remain. Living with a stoma requires adjustments. “You have to chew your food more,” she says. “There are certain things you can’t eat.” Sleeping positions changed. Clothing choices changed. Travel requires extra preparation.

Looking back, Jess wouldn’t change a thing. “I feel like I didn’t have this energy for 14 years,” she says. That shift has inspired her to try things she once postponed indefinitely. “I told myself if I made it out of here, I would learn to roller skate,” she says.

And she did exactly that. She joined a roller derby group, returned to yoga, and even started horse riding again. “Life is too short,” Jess says. “The pain I had for so many years… now it’s just so nice to be pain-free.”

Jess knows many people living with ulcerative colitis fear surgery the same way she once did. When she speaks to others now, her message is honest but reassuring. “It’s okay,” she says. Her advice is simple: seek information, speak to others, and avoid letting fear dominate the decision.

“Don’t take everything literally,” she says. “Just ask people who have actually lived it.”

Most importantly, she encourages patience and self-compassion. “Be kind to yourself,” she says. “We all adapt to change because we have to.”

Surviving IBD revealed something Jess had not known she possessed. “I always feel that people with Crohn’s and colitis find this inner strength somehow,” she says. “Just getting up, getting washed, seeing people. That’s hard.”

If she could speak to her younger self on the day of diagnosis, she would keep the message simple. “Yes, it’s going to be tough,” she says. “But you will get there.”

And perhaps the most important lesson of all: you’re going to be okay.

You can follow Jess’ journey on Instagram @stomuchlove

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Lewis was 23 years old and in the best shape of his life. He was eating well, not drinking, not smoking, working hard, and chasing ambition. When the symptoms hit, they hit out of nowhere.

“I literally woke up one day,” he says, “and I kid you not, I could not stop going to the toilet.” What came out wasn’t even solid. “It was like yellow-green water.” At first, he brushed it off. Something he ate, or a bad stomach bug. He googled diarrhea. It could last a couple of days to a week, the internet said.

But a week became two. Lewis’ trips to the bathroom increased. Exploded. Then the bleeding started. “For like two weeks, it was just blood, mucus, horrible diarrhea,” he says. “And I was like, yeah, I think there’s a problem.”

What made it stranger was what wasn’t there. No abdominal pain. “I generally felt fine besides the diarrhea,” he says. His doctor pressed on his stomach and looked confused. “You should be like jumping off the bed in pain,” she told him. But he wasn’t.

The inflammation markers, however, were “off the charts.”

From September to December, Lewis waited for a colonoscopy, without treatment. The NHS was overwhelmed. The appointment only happened because of a last-minute cancellation. “If I didn’t get a cancellation,” he says, “I might have waited another two months.”

He’d never been seriously ill before. “For the first 23 years of my life, I was healthy. I never went to the doctor, never went to the hospital,” he says. A colonoscopy was a foreign word, until Lewis had his first.

During the screening, his doctor found what looked like black tar coating part of his bowel. “I was like, what is that?” he says. They told him it was as if his insides were “rotten,” his immune system attacking itself.

Then came the diagnosis: ulcerative colitis. Later on, Crohn’s disease would join the poop party, but in this specific moment, it was simply this: something was wrong, and it wasn’t going away.

The treatment began with mesalamine enemas and eight pills a day. Lewis had imagined leaving the hospital with a few tablets. Instead, he walked out with “six big bags of boxes of enemas.” The first time he used one, it felt weird. “You’re not allowed to pass for like 30 minutes,” he says, “but it feels like you could straight away.”

The enemas helped a bit, but not dramatically. Then came steroids. And so did the side effects. “I got moon face,” Lewis says. It wasn’t flattering, but it brought him relief. Eventually, he moved onto biologic injections. “These have worked a treat,” he says. “I’m not my old self, but I feel really good.”

Today, Lewis flirts with remission. Most IBD symptoms have calmed down, but considerable joint pain has stayed put. “It’s both of my knees, my elbows and my wrists,” he says. “I really feel that all the time.” It’s a stark reminder that inflammatory bowel disease is never just about watery bowel movements.

Before his diagnosis, Lewis was stuck in ambition overdrive. “I work stupidly hard. Sometimes I feel like I’m borderline insane,” he says. After diagnosis, that changed. “The tasks that I was used to doing on a daily basis got harder and harder. It now takes double the effort.”

Despite occasional flares, Lewis refuses to let IBD define him. “If I wake up in the morning and I feel a bit off, I’m still going to do what I need to do,” he says. But he has also learned restraint. “When the flares do come, they are really bad. And I’m not going to try power through that, because that would be stupid.”

That balance did not come naturally. For too long, he pushed himself, and his body. Now, when his body speaks, he finally listens. “If I feel that flare coming on, I just sit back and let whatever needs to happen happen without trying to push through it,” he adds.

Health anxiety crept in alongside his diagnosis. “I’ll get a cold and think, oh my God, I’m going to get sepsis,” Lewis says. “If I wake up every day and think, today could be the day I flare up, the likelihood of that happening can be quite high.” His solution has been deliberate calm. “Any bits of stress I can eliminate, I will.”

Crohn’s has changed him in ways he didn’t expect. “I’m a lot more caring now,” Lewis says. “Just because I might have done ten things and this person’s only done one doesn’t make me better.” For someone else, that one task may require the same energy his ten did. “In comparison, we’re at the same level.”

Gratitude is something he now practices daily. “I might sound a bit crazy, but I am more thankful than not that I’ve got this diagnosis,” he says. “It’s made me a better man. Before I felt like a boy.”

Lewis shares his IBD journey openly on social media, something that would have been unthinkable at the start. At first, he was embarrassed. “I was like, I now have something like a disability,” he says. His confidence was shaken.

A friend encouraged him to let people in. “Show more of you,” he was told. At first, it felt daunting. But then, the messages started flowing in. People saying his funny videos got them through their day. He realized awareness didn’t always have to be heavy.

“I’m not embarrassed anymore,” he says. “I’m not trying to hide anything. I’m still me. I’m still Lewis. But I do have this thing happening inside of me.”

For those newly diagnosed, his advice is direct: “Accept the new normal. Doing things that you may have done before may not be as easy now.” That doesn’t mean they’re impossible. “Harder doesn’t mean impossible.” The quicker acceptance comes, the quicker peace follows.

Lewis has accepted his new normal, and he’s hopeful for the future of all IBD patients. He believes we’ll see a cure heading our way in our lifetime. “With how quickly medicine is advancing, I’m just waiting for the day they go, ‘That’s cure. Give me some.’”

Until then, he focuses on what he can control: mindset, compassion, awareness and balance. The new normal is not the old one. It never will be. “When your body talks, listen,” he says. That may be the most important lesson of all.

You can follow Lewis’ journey on TikTok @millal40

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Sarah was only fifteen when her IBD journey began. What followed were eight long years of colonoscopies, wrong answers, and a growing certainty that her body was doing something doctors could not, or would not, name.

When she finally received her ulcerative colitis diagnosis at twenty-three, sitting in a hospital room in Washington D.C., Sarah’s first emotion wasn’t fear. It was relief. “I remember just feeling a lot of relief that I had a name and a label for what I was going through,” she says. “It kind of just felt like the puzzle was finally put together.”

A puzzle that took nearly a decade to complete.

Sarah’s symptoms arrived suddenly. She was fifteen, vomiting repeatedly, and ended up hospitalized for three days with intense stomach pain. Doctors sent her home with a vague mention of a possible food infection. But the symptoms soon returned, from frequent bowel movements to significant weight loss, and pain that followed an unusual seasonal pattern, flaring every year between February and August without explanation.

This unusual rhythm only delayed her diagnosis. For a while, doctors landed on eating disorders. “Because I became really thin, having difficulty eating and throwing up after eating, I had several guys telling me, oh, it’s probably just an eating disorder,” Sarah says.

The colonoscopies she did have showed mild ulceration, but physicians defaulted to IBS anyway. By sixteen, Sarah had started piecing things together herself. “I basically self-diagnosed with ulcerative colitis because I just knew based on my symptoms and research,” she says. “And I kept asking doctors to look into it, and I kept getting the eating disorder or IBS answer.”

Self-diagnosis doesn’t come with treatment. And the cycles of flare and remission made it easy to doubt herself. “Sometimes you are perfectly fine, and then other times you’re going to shit your pants on the way to the supermarket,” she says. “Whenever I would improve, I just no longer believed myself that I was sick.”

The official IBD diagnosis happened by chance. During her second year of law school, Sarah developed appendicitis. Surgery revealed a tumor in her appendix, and a subsequent colonoscopy ordered to rule out cancer elsewhere in the intestinal tract finally revealed what years of prior scopes had missed. She had ulcerative colitis.

Doctors started Sarah on mesalamine (six large pills daily) and prednisone, and when she felt better, she stopped taking her medication. “I thought, well, I’ve lived with it for this long and I don’t feel like taking six huge pills a day,” she says. “I just didn’t know how bad it could be.”

The stress Sarah experienced in law school only made things worse. Even outside a flare, she was using the bathroom twelve times a day, stepping out of three-hour classes four times per session. Anti-inflammatory, low-FODMAP diets gave her something to try, but nothing held.

Her final flare began around Christmas, triggered by a milkshake. “I was literally crying on the toilet,” she says. “It was so painful and horrible that it never went back to normal.” Graduation was just weeks away, and Sarah got a steroid injection just to make it through the ceremony. That night, after a celebratory pasta dinner, she was screaming in agony and headed to the emergency room.

Things deteriorated quickly. Three hospitalizations followed in rapid succession. Each time Sarah improved just enough to be discharged. But she kept crashing. After the third admission and a colonoscopy, her gastroenterologist told her it was time to involve a surgeon.

“My intestines looked bright red with patches that looked like spiderwebs all over the place,” Sarah says. “Like Wagyu beef, basically.” She met with a colorectal surgeon, who talked her through what life with an ileostomy would look like.

Sarah sat through the entire first consultation in silence. “I knew if I spoke, I was going to start crying,” she says. Over the next twelve days, she met with that surgeon nearly every day. She left the hospital hoping never to see her again. But within 48 hours, she had a 104-degree fever and couldn’t stand without fainting. On July 5th, 2024, Sarah woke up with an ostomy.

She had hoped surgery would rid her of her medical troubles, but things didn’t pan out that way. Within a week, a bowel blockage led to a perforation. Her heart rate hit 150 at rest. A second surgery was needed to resect the perforated bowel and create a new stoma.

Sarah went home, hoping to recover. No such luck. Days later, she was back in the hospital with suspected sepsis. Then came a full laparotomy. She was left open, placed on a ventilator in the ICU for several days, then underwent two more surgeries to slowly close the wound.

The psychological toll of Sarah’s medical marathon hit deep. For a while, she hallucinated when she closed her eyes, stopped sleeping until sedatives were prescribed, and cried constantly. “All my friends were texting me that I’m so strong,” she says, “And I just remember thinking, I’m not.”

Today, Sarah participates in races. She hikes long distances. The stress-triggered episodes she used to call “fake sick” have disappeared entirely. She has gone more than a year and a half without intestinal pain. “It’s insane,” she says. “I haven’t experienced that since I can’t remember much of how my stomach felt before 15.”

She’s also stopped grieving the colon she lost. Sarah never regretted stopping her medication at the time. “I hated the pills,” she says. “Managing an ostomy is easier than managing those pills was, at least for me. I’d rather change a bag than take six giant pills.”

Her body image took longer to recover. For years, weight loss from flares had made her feel unlovable. Before surgery, Sarah feared the ostomy would ruin her appearance permanently. Today, she thinks her scar looks cool. “Now when I look at my bag, or I have the top of my bag out when I’m wearing certain pants, I don’t ever look in the mirror and think, oh, my body’s ruined now,” she says.

On the fear of being the ‘sick friend,’ her therapist offered the sharpest reframe: “Sarah, you already are the sick friend.” It helped. She’d always canceled plans, urgently needed bathrooms, and occasionally even used someone’s front lawn. “Even though all of that has happened, I’ve never lost a friend from it,” she says. “That’s not my identity to my friends.”

If she could go back and talk to the fifteen-year-old version of herself, she would focus on the positive. “She’s going to go through a lot, but she’s also going to learn a lot through it,” Sarah says. “Everything she will go through has a purpose and will help her become the best version of herself.”

Looking ahead, Sarah doubts there will ever be a single universal solution for IBD. The disease is too varied, its causes too numerous. But she holds out hope for incremental progress, for research that finds answers one root cause at a time.

It’s the same kind of hope that carried her through eight years of dismissal, through multiple hospitalizations in a matter of weeks, through a ventilator and a six-inch scar, and a body she had to completely reimagine.

Nothing ordinary life throws at her comes close to what she experienced with her colitis. “Nothing I go through feels as bad as what IBD has put me through,” she says. “I just feel like I’m able to get through those things because I’ve already been through worse.”

She has. And she’s still going.

You can follow Sarah’s journey on Instagram @sarah_and_stellathestoma

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