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Crohn’s disease has affected my identity in many ways. I think this shows in the way that I introduced myself up top– “My name is Lauren and I have Crohn’s Disease”, rather than “my name is Lauren and I am doing my Doctorate training to be a Clinical Psychologist, I love my dog, I’m getting married” etc. It takes up so much space in who I am and how I identify myself because it creeps into every aspect of my existence. 

I’m resentful that the amount of time I have spent in hospitals has potentially pushed me back in my career, impacted my relationships, and made it impossible for me to plan for the future without a hint of concern. I’m the only person in my friend group, that I know of, that has to worry in real time about when their next hospital admission will be, or their next surgery. I worry about feeling poorly on my wedding day or needing to go to hospital when I go on holiday, which when you are just trying to have fun can be really draining and also just a bit of a buzzkill!

The constant worry and the comparison I make between myself and other people without this condition impact my mental health. I have had various diagnoses of mental health conditions throughout my life, even prior to Crohn’s disease, which I think does make me more susceptible to struggling with the condition. As you may be able to tell I’m super career-driven, so when I have to take time off work to manage pain or be in hospital this can make me feel really hopeless for the future. The condition itself can feel really isolating too– no one talks about poop! So finding other people who are struggling with the same thing can sometimes be difficult, especially if you don’t have the right channels for accessing this. I also think that in general there is a lack of understanding from the outside world about the impact of this illness, “it’s just a pooping disease”, but actually this illness can be incredibly severe, change your life, and even put your life at risk sometimes, as it did with me. I don’t think many people realize its severity because it’s not something you can visibly see on the outside. This lack of understanding adds to feelings of isolation and loneliness, speaking from my experience. I think this is where my idea to talk about it so openly came from.

I’m really outgoing and certainly not a shy person, so I created an Instagram account to help spread awareness and put poop on the agenda! Afterward, I really feel like I discovered what the term “post-traumatic growth” really means. Despite looking different from everyone else around me, I felt more confident and proud of myself than I had ever felt before. I studied and learned about Crohn’s disease, about Stomas and I became my own advocate and tried to advocate for others too. I found a passion in sharing my story and spreading awareness which I still feel so strongly about two years later! I also had a new appreciation for my body that transcended what size I am and how I look. Now it is more about the ability of the human body to survive and keep me alive and that it deserves love and acceptance, not diets and punishment.

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Since then, I have had so many amazing opportunities that I value so much, and I hope that they make other people feel less alone. I have written articles like this one, done photoshoots, been invited to be on TV, and even spoke in UK parliament about national policy for Crohn’s and Colitis care in the UK. I am honestly writing this part with the biggest smile on my face. 

I will never, ever, be thankful for Crohn’s disease coming into my life and the pain this causes but I am thankful for the person that Crohn’s disease has turned me into. 

I see everyone who lives with Crohn’s or Colitis as a true warrior and often people don’t see their own strength, but it’s there. I want people with Crohn’s and Colitis to know they are not alone and that I stand with you, that it’s okay to talk about poop and you deserve to project your inner strength that it takes to live with this condition out into the world for others to see. You will always have a shared experience with me and the millions of other people around the world who try to navigate life with this condition. I think it’s important to share what this illness takes away from people and the strength it takes to get through that each and every day.

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“I Am Stronger Than I Think”

It’s easy to underestimate your own strength when facing a chronic illness like Crohn’s. But remember that you’ve already overcome countless challenges in your life. Every day, you wake up and continue to fight this battle. You are stronger than you think, and your inner strength will carry you through even the toughest times.

“I Am Not Defined by My Diagnosis”

Crohn’s disease is a part of your life, but it doesn’t define who you are. You are still the same unique, incredible person you were before your diagnosis. Embrace your individuality, your passions, and your dreams. Crohn’s is just one chapter in your story.

“I Embrace the Ups and Downs”

Living with Crohn’s often means dealing with unpredictable flare-ups and setbacks. Instead of dwelling on the lows, try to embrace the journey as a whole. Your highs and lows are all part of your unique experience, and they make you the resilient person you are.

“I Am Not Alone”

Sometimes, Crohn’s disease can make you feel isolated. But remember that there’s a vast community of people who understand what you’re going through. Seek out support groups, both online and in-person, to connect with others who share your struggles. You’ll find comfort in knowing that you’re not alone on this journey.

“I Am Grateful for the Good Days”

Amidst the challenges, there will be days when you feel better and more like yourself. Cherish these moments and use them to recharge and enjoy life to the fullest. Gratitude can be a powerful tool in finding happiness even in the midst of adversity.

“I Deserve Self-Care”

Living with a chronic illness can be exhausting, both physically and mentally. Remember that you deserve self-care and self-compassion. Make time for activities that bring you joy and relaxation, whether it’s reading a book, taking a walk in nature, or indulging in your favorite hobby.

“I Will Advocate for Myself”

You are your own best advocate when it comes to managing your health. Don’t hesitate to speak up, ask questions, and seek second opinions if needed. Your voice matters, and you have the right to be involved in decisions about your treatment and care.

“I Am Resilient”

Living with Crohn’s disease requires resilience beyond measure. You face each day with determination and grace, even when the odds seem stacked against you. Believe in your ability to bounce back from setbacks and continue moving forward.

“I Am Learning and Growing”

Your journey with Crohn’s disease is an opportunity for personal growth and self-discovery. You’re constantly learning about your body, your strengths, and your limitations. Embrace this process of growth and use it to become a stronger, wiser person.

“I Am a Survivor”

You’ve already survived every challenge that Crohn’s has thrown your way. You are a survivor, and you have the strength to face whatever lies ahead. Keep moving forward with determination and hope in your heart.

Remember that while these affirmations can provide encouragement and hope, it’s essential to have a support system in place. Reach out to friends, family, and healthcare professionals who can provide the help and guidance you need.

In addition, consider joining online communities and blogs that focus on Crohn’s disease. The unrelenting support online for others in the IBD community is admirable, which is what inspired me to start my blog, “The Crohnie Mommy.” My blog offers insight, tips, and a supportive community to help anyone navigating life with Crohn’s disease.

In conclusion, facing a Crohn’s diagnosis is undeniably challenging, but it’s essential to maintain hope and optimism throughout your journey. You are not alone in this battle, and there is a community of individuals who understand your struggles and are ready to support you. Embrace these affirmations, lean on your support system, and explore valuable resources that help you navigate your path with strength, resilience, and hope.

She probably followed it up with something viciously offensive about Elizabeth Taylor’s weight, but the wisdom still stands. This week marks the 9-year anniversary of Joan Rivers’ death. As a comedian (and a queer one at that), I have long looked to Mother Joan for strength and fortitude. 

Especially when I tested positive for HIV in 2016, I found myself regularly watching her stand-up, as well as the 2010 documentary that follows her comeback after years of rejection and failure. 

Seven years out from my diagnosis and nine from her death, I like to think that HIV and Joan Rivers have a lot in common. For starters, they were both big hits with gay men in the 80s! (Don’t get mad. Joan would have loved that joke, and gay men in the 80s would have, too, for that matter). 

More importantly, Joan and HIV have both taught me that Capital-L “Life” can feel inconceivably tragic in the short run, only to end up being bombastically hilarious in the long. 

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Let’s face it: bad things happen to all of us. There are universal events in the shared human experience that pop up just to shoot you down. You get fired. Your parent dies. Your house burns down. You turn 36 and you’re still not where you want to be in your stand-up career and one of your peers just got a Late Night gig and you’re happy for them but also dear god why not me??? You know, universal human experiences! 

If you’re like me, your brain is wired to go straight to a cycle of despair and catastrophization. When something even mildly bad happens, my demons start singing a 4 part harmony called “Everything’s Over (And It’s Your Fault, You Dumb Idiot)!” It’s pretty catchy. 

The day I got my HIV diagnosis in 2016, that’s exactly how I reacted. 

I went in for routine testing at the free clinic and when the rapid test showed that I was HIV positive, I was stunned. Like, shell-shocked-and-hearing-a-high-pitched-noise-in-a-WWII-movie stunned. 

The nurse immediately started explaining that “there’s a state program that’ll pay for my insurance” and how “HIV isn’t a death sentence anymore” and blah blah blah. I wasn’t listening. I was running Terms of Endearment scenes on loop in my head (“It’s after ten! GIVE MY DAUGHTER THE SHOT!”) and hearing my mother’s words from when I came out to her as gay in 2003 (“I just don’t want you to get sick!”). I was blindsided. 

Life was at its worst, and it felt entirely by my own doing.

Yet somehow… it also wasn’t over. The nurse was right that a state program would pay for my treatment and insurance. Health insurance helped me get therapy, which helped me get sober for 4 years, which helped me double down on my dreams and my personal health. I was Undetectable within months and have had zero health complications in the years since. 

But I’m a comedian. Never content to be content, I started doing something that is probably a little sick… I started doing stand-up about my HIV. And what’s worse; it worked. 

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I can’t describe to you how much fun it is to toy with audiences’ fears and expectations around the subject. People today are just as ignorant as I was in 2016 about all the health breakthroughs, and it tickles me to no end to simulate those highs and lows with an audience (and, most importantly, get laughs). 

Building that set was the first breakthrough for me in terms of learning how to write material that connected with audiences. Since then, I’ve been gigging consistently for five years throughout the country and I filmed my hour earlier this year. That hour got me a stand-up agent, and now I’m prepping to enter the college market to take my act on the road. I’m not nearly as successful as I want to be (CUE THE COMPARE-AND-DESPAIR THOUGHT LOOPS), but I’m edging ever closer to the life of a working comedian. And I truly don’t think I would be here without the alleged tragedy of that initial HIV diagnosis. 

I re-watched the Joan Rivers documentary last night for the first time in a few years to prepare for this article. I know pretty much every word to this doc, and yet I am still struck by the cycles this woman goes through on her path to success. This film shows a 75-year-old legend who has made millions off her art form, but she is constantly plagued by depression, insecurity, compare-and-despair, anger, and self-loathing. 

I am not fixed. My reactions to Life are still so much worse than most of the things that Life actually throws at me. But I am once again reminding myself (and hopefully others in the process) that “getting better” isn’t about how often you fall into a funk of maladaptive reactions. Getting better is about how often and how quickly you can snap yourself back out of them. 

I’ll continue snapping out of my funks, and so will you. It’s what Joan would do.

As someone who was born with HIV and found out about my status in my teenage years, I have felt the impacts of living with this virus in various ways.

My name is Saidy, I am a 28-year-old black, queer woman living with HIV, and this is a piece dedicated to taking you along my journey of life as an HIVictor, in a world that is so determined in making someone like me believe that they are not worthy of equity and access to anything deemed as a privilege by society.

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The unfortunate thing about living with HIV is how isolating it can get. The unfair beliefs and negative thoughts about people living with HIV not only isolate us, but it also deprives us of basic, human decency. Going through a journey that is alienating and marginalizing means that we become more prone to mental health issues. I had my first suicide attempt in 2015, at age 20. I had always had the idea as a recurring thought in my mind, which made it difficult for me to not see death as an easier escape from everything.

Disclosing my HIV status at age 18 (an impulsive decision) meant that life as I knew it, was about to change. I speak about stigma a lot, and what we don’t speak enough about is: internal stigma. Internal stigma means how I view myself, what I say about myself, and what I think about the essence of who I am as a person living with HIV. 

I believe that disclosing my HIV status on social media kind of eased the burden of HIV on me, and it made me so comfortable that I intentionally chose to never let people’s opinions of me change my views on HIV and disclosure. I am very impulsive, and a validating trait of my impulsive character is my refusal to regret anything I ever decide to do.

Internalized stigma is what I struggled with a lot. My self-image completely changed because I believed I was not worthy of anything. I wanted to deprive myself of the pure essence of living and spent a huge part of my teenage years waiting to die. 

It was a very difficult time in my journey with HIV, and it has taught me to love myself and continuously affirm my existence in this world by living my best life with HIV and changing the narrative of what the life of a person living with HIV is meant to look like. This is what has helped me fight to come back to myself regardless of the number of times I start to lose myself.

The beginning of this year was very hard for me. My mental health was at its lowest, and I struggled a lot with reconciling my mind with the fact that I was still on earth because I had a purpose to fulfill. I took it upon myself to try therapy out, and it has not been an easy journey, but it has helped me. I have even gone back to being excited about things I used to love doing. Depression had stolen so much joy from me. I am happy and proud of my courage to always seek help and try to make my life easier in whichever way I try. 

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Another part of my life that is very connected to my journey with HIV is my sexuality and identity. I am a queer black woman, and in every space or platform I occupy as an activist, I try to bring queer, women living with HIV into the conversation. My advocacy is very personal, and as a direct beneficiary of my activism, I can’t speak about my journey with HIV and not mention my queerness and how that is a huge part of my identity.

Queer, black love is beautiful. 

Navigating relationships as a queer woman living with HIV is hard because living with HIV is hardly a conversation we have as queer women. There is not much information and access out there for us to tap into and learn from. My HIV status does not inconvenience my love life or sex life in any way, and I have intentionally made it a point to disclose my status very early in a relationship. I do it because I simply don’t like wasting my time. I do it because while there are some who view my status as a dealbreaker, I view their stigma as a deal breaker and would not want to be with someone who has negative views about those living with HIV.

I hope people living with HIV realize that we are also worthy of love, mind-blowing sex, and wholesome experiences. We do not get the short end of the stick just because we are living with HIV. The power dynamics in serodiscordant relationships are only there because there is this culture around having to be thankful for people who choose relationships with us. We should never have to feel like someone being with us is a favor, or them being charitable. 

We are great people, doing great things, and living great lives beyond our HIV status.

I shared my HIV status on Facebook almost ten years ago. Ten years later, I am still so proud of that 18-year-old girl who was so scared yet so determined to stand up to HIV and say I know I was born for a purpose, and not even two lines on an HIV test can stop me. I have done this with an amazing community of friends online who have supported me and loved me. Doing life so publicly, and sharing my experiences is quite uncomfortable for someone as private as I am, but it has come with so much growth, and so much respect for the work I do and for the people (Saidy at number one!!) I do this for. It’s not easy, but the journey of an HIVictor is a beautiful one.

These are just some of the ways I felt when I learned I was HIV positive on that spring day of 2011. Coping with this news was something that became a daily struggle. They say that life is about choices, and in an instant, I felt suffocated by the number of decisions that were forthcoming in the days ahead.

Who should I or could I talk to about this? How would I get treatment? Should I start treatment right away or wait? How would the rest of my life be impacted by my diagnosis?

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In the Black community, we do a good job of dealing with things on our own and not asking for help. I later learned that this isn’t always the healthiest approach to life matters. I would ultimately succumb to that pressure, even without anyone directly telling me I had to figure this out by myself. Spending my time worrying about the outcome of what would happen if I shared this personal information caused me to bury it deeply. I did however make a decision that I would not let HIV define me or what was possible for my life.

“I did however make a decision that I would not let HIV define me or what was possible for my life.”

                                                        — Tony Jermin

Slowly, I put one foot in front of the other and did the work of finding a doctor for help who walked me through the appropriate steps towards getting my medical expenses covered through programs available to the community, because what they don’t tell you is how expensive HIV treatment is. Thank God for each glimmer of hope along the way, because it was a long agonizing road to securing treatment for myself, especially since it wasn’t covered by my insurance at the time. To this day, I still don’t know what gave me the strength to push through. Reflecting back, I think my will to live and not only live but thrive, had something to do with it. I had hopes, dreams, and aspirations for myself and HIV wasn’t going to stop me from achieving those things at any cost. I encourage folx to figure out their why. What is your reason to live? Hold on to that and let it be your guiding light, because I’ve learned that what you desire in life, you deserve.

“What is your reason to live? Hold on to that and let it be your guiding light, because I’ve learned that what you desire in life, you deserve.”

                                                        — Tony Jermin

If there is one thing I would go back in time and tell myself, it would be that you are not alone and it’s going to be okay. As the days, weeks, months, and years passed by, the more confident I became in my status. I had become undetectable and less bothered with knowing my own truth. This doesn’t mean that it wasn’t constantly in the back of my mind. It absolutely affected my approach to relationships and sex.

I went through phases of not caring that I wasn’t vocal about my status, to caring so much that it strongly impacted my mental health and how I navigated those relationships. It wasn’t until 10 years after my diagnosis that I would feel completely free. This happened because I created a platform called Surface Level Podcast with two of my best friends, where we have curious conversations about the Black, Queer experience.

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It was through this vehicle that I would gain the courage to speak my truth on my terms. In an episode entitled, Undetectable, I shared my HIV story. It gave me the opportunity to put my own narrative out into the world in a way that allowed me to release myself of the stigma and get on the other side of fear, to freedom. The journey looks different for everyone, and I encourage anyone reading this who might be going through challenging times to keep fighting for yourself.

I didn’t know I could feel this level of freedom and it is now part of my life’s work to help set others free or to at least help others feel seen and less alone in the world.

I was digging myself into a very deep grave of guilt. There never seemed to be the “right” moment.

He flew over to Germany and I finally mustered up the courage, “I should’ve told you this earlier but I’m HIV positive”. I briefly explained the whole “undetectable equals untransmittable (U=U)” which ensures I can’t sexually transmit it to my partners. Nowadays, when someone is on effective treatment, the medication lowers the level of HIV (the viral load) in the blood to a point where it can no longer be spread. 

I waited for his reaction. He just kept eating his müsli and simply responded with “Thanks for letting me know, I trust you”. That’s it!?

You’re telling me, I was trapped in a box full of anxiety the whole time trying to figure how to share this bomb of a secret and that’s all he had to say!? He wasn’t angry that I chose not to tell him earlier nor did he get scared off by the HIV itself. Instead he was still happy to be with me. I was lucky that I found such an understanding guy because *spoiler* this hasn’t always been the case!

In fact, dating with HIV has been… colorful, to say the very least. No two disclosures are ever the same. However, over time I realized the anxiety that consumed me when it came to disclosing my status and now recognize the mistakes I’ve overcome when it comes to dating while HIV+.

Dating Mistake #1: Feeling Inadequate Because Of My Status

Because I was born with HIV, I don’t know a life without it. That’s what I identified with.

For the longest time, the stigma got to me and I allowed HIV to define me. Why would someone choose me over the girl without HIV? How could anyone ever possibly fall in love with me? Let alone, why would anyone even think of sleeping with someone with HIV? I was constantly bringing myself down a spiral of negative thoughts and convincing myself no one would want me. Ironically, I knew how much I had going for myself, but the moment I was reminded of my HIV status, all of that seemed to just suddenly disappear.

*I was letting HIV overshadow the wonderful person I actually was.*

Dating Mistake #2: Avoiding Disclosures Due To Fear Of Rejection

I was more hard on myself and scared to be rejected that I avoided the disclosure when possible. This meant either not telling the partner or running away from a potentially good thing, surely hurting them in the process. The “what if they reject me” closed me off to being open and vulnerable. I would rather avoid the rejection by rejecting them first. It was so much easier. 

It was so fixed in my head that 90% of my partners would reject me and only 10% would be OK with it. Little did I know, it actually turned out to be completely the opposite. After putting myself out there and just seeing what would happen, things were actually working out – much to my surprise.

My reality was clearly not matching my perception. Was I creating the stigma in my head? Was I then the one that was actually making it a big deal? What did my partners see in me that I couldn’t? I realized this was a me problem.

*It took me a good 10+ years to fully accept my HIV status.*

Overcoming My Fears & Growing Past My Mistakes

I’m forever grateful for the role my partners played in my life when it comes to HIV. Interestingly enough, none of them knew so much about HIV (never even heard of U=U) nor asked me to prove I’m actually undetectable. There was so much trust involved. Their reactions and how they handled the news gave me reassurance and the confirmation that it did not matter. Funny enough, it was often seen as a positive thing.

*HIV wasn’t a big deal to my partners.*

So I needed to stop making HIV a big deal, because apparently it really wasn’t. Stop putting more attention on the thing that didn’t need any more attention. Instead, put the focus on what makes you you.

I finally understood that my HIV status didn’t play any role in determining whether I’d be a good partner or not. I was indeed good enough. My partners fell for me because I was genuine, kind, intelligent, and could offer a feeling of home (their words, not mine). HIV was just something on the side. And slowly, I was starting to fall in love with the person my partners were always seeing.

I finally was able to reach the point of, “I’m Diana and I just happen to be HIV positive”. HIV no longer defined me, I was defining what it means to be HIV positive. This was the most powerful shift in accepting my status and myself. I don’t even consider it anymore as a reason people would reject me.

“HIV no longer defined me, I was defining what it means to be HIV positive.”

                      —Diana Koss

And wow, what a ride it has been! I never thought I’d have the experiences I have. A mix of fun nights, summer flings, serious commitments, and even finding someone who I thought was “the One”. I get to live life and have stories for the books – and in the meantime, the fact that I’m HIV positive plays such an insignificant role.

It was a struggle, but I’m glad I eventually made it to the other side.

Food For Thought

For anyone who is struggling with the “what if they reject me?”, I dare you to ask yourself, “what if you never put yourself out there and get to experience love?”

Now, which one do you think is more scary?

This just happens to be where I am in my journey.  This is my “healthy girl” era.  I am proud of how far I’ve come, and I am enjoying it.  

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Over the years, I have had multiple surgeries including a total colectomy.  At just 35, I needed an ostomy for the second time in my life.  I don’t have pictures from when I’ve been hospitalized in the past. I don’t have any current ailments to chronicle.  I started a new job last year, and most of my coworkers don’t even know I have Crohn’s Disease.

That’s the thing about having an invisible illness, most of your struggles are private.  Here’s what you missed.  Here’s what the world doesn’t see.

In 2006, I began experiencing crampy abdominal pain accompanied by bloody stools up to 20 times a day.  My first scope confirmed the diagnosis: moderate to severe ulcerative colitis.  I started taking medication, went back to my summer job at a daycare, and returned to college to complete my senior year.

The following year, I had my most severe flare yet.  Most GI doctors would probably endorse the course of treatment I received (IV steroids, followed by antibiotics).  However, I believe aggressive antibiotics led to concurrent C. Difficile infection, a bacterium that also causes inflammation and damage to the colon.  I was released after 13 days in worse shape than I had entered.  

At my family’s urging, I got a second opinion at a university-affiliated research hospital.  My illness had progressed to toxic megacolon, a potentially fatal complication of ulcerative colitis, when your colon essentially shuts down and is at risk of perforation, causing widespread sepsis.  They scheduled me for surgery first thing in the morning, after a night on IV fluids and steroids.

This was the first (but not last) time I’ve faced a 30% mortality rate.  I am lucky to be alive.

The surgery went well, and I was even able to have the three-step j-pouch procedure to construct an internal pouch from the lower end of my small intestine.  This enables patients who’ve had a total colectomy to live without an external ostomy appliance.  I had a temporary ostomy for just 9 months.  I wish I could say that was the end.  It wasn’t.

If you look at my Facebook from those years, you’ll see me smiling with friends and family.  You’ll see me celebrating graduation from UW-Oshkosh with a degree in Psychology, and two years later earning a master’s degree from UW-Milwaukee.

You won’t see me doubled over on the floor in pain. You won’t see my bloated, dangerously distended stomach.  You won’t see the nurse asking if I “had my period” because there was so much blood in the toilet or me crying during my first bag change.  

When you have a colectomy, they tell you it is a “cure” for ulcerative colitis.  That’s a debate for another day.  What I did not anticipate, however, was a Crohn’s Disease diagnosis shortly thereafter.  Had my small bowel shown signs of Crohn’s previously, I would not have been a candidate for the j-pouch procedure.  The doctor informed me that I could keep my j-pouch as long as it was working for me, but that I likely had a hard road ahead of me.

The years that came after were full of ups and downs.  I experienced “pouchitis” multiple times each year which feels almost exactly like ulcerative colitis, except perhaps more localized.  I also developed a persistent stricture at the pouch anastomosis, which required dilation under anesthesia 3-4 times a year.  The antibiotic I was given to treat it made me sick to my stomach.  But the pouchitis would clear, and I would have periods of time where I felt well, lived normally, and almost forgot I was sick (except just about every time I ate).

Then the fistula came.  Although maybe not the most dangerous, this was the most difficult complication of Crohn’s I’ve faced.  Your colon’s main function is to absorb water. Without one, the consistency of the j-pouch stool is generally porridge-like but can become watery when symptomatic.  Now picture having a tunnel “the diameter of a quarter” (per my surgeon) connecting your j-pouch to your vagina.  Do you see where I am going here?

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If you look at my social media from this time, you’ll see me finally realizing my dream of moving to Arizona.  You’ll see me starting a new job and eventually earning a second master’s degree in Higher Education.  You’ll see me enjoying time with a new group of friends, vacationing, and hiking many beautiful trails.  

You won’t see me wasting weekends laid up on the couch with symptoms, or falling asleep at 6:30 exhausted after work, just so I had the energy to do it again the next day. You won’t see me finally breaking down and wearing adult diapers in my 30s.  You won’t see me waking up in the morning to a mess that I had to clean, sick as I was, at a washer and dryer a parking lot’s walk away.

I tried several times to repair the fistula.  This included medical management with seton placement, a mesh fistula plug, and finally martius flap surgery during the pandemic.  Shortly after that surgery, I tore my stitches vomiting and was rushed to the ER.  I was readmitted and needed another surgery to create a temporary ostomy to divert my GI tract while my body healed.  

Although my recovery during the pandemic presented some unique challenges, I was lucky in some ways.  For one, I wasn’t expected to go anywhere or do anything.  When I returned to work, I was able to do so from the comfort of my home and with the support of my then boyfriend (now husband).  I had hoped the ostomy would be reversed prior to our wedding, but I developed an abscess and the fistula returned.  Perhaps this was a blessing in disguise.  I’ve had the ostomy for three years now and am living my best life. 

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What you will see during this time is me marrying the love of my life in a picture-perfect lakeside ceremony, surrounded by friends and family.  You will see me traveling, going to the gym, picking up a yoga hobby, and enjoying an expanded diet.  You will see me receiving a promotion at work and trying my hand at step-moming.  You will see me taking steps to reclaim my mental health and process some of the trauma I’ve been through.

What you will not see is me taking one day of this life for granted.  What you will not see is me ashamed to have an ostomy; it has given me a new lease on life.  What you will not see is me stretching myself beyond my limits, because I’ve learned and accepted them.  Crohn’s Disease will always be a part of me, and I am learning to live no longer in defiance of it, but alongside it.  I am not a worst case scenario.  I am a survivor, and I am thriving.

Throughout my healing journey, I got the courage to start dating again. Sometimes embarrassing moments of bowel urgency, loss of control, or frequency in the middle of the night would have me screaming “Why God! She’ll surely run away and make fun of me with her friends now.” But I kept moving forward despite the paralyzing shameful times, learning how to heal my gut and treat root causes which I had dedicated years to understanding.  As I marched on, a bit of serendipity entered my dating life. I started to notice women were becoming increasingly more attracted to my journey, my transparency, my commitment to health, and the moral standards I used to rebuild my life. Instead of shame and empathy, I exhibited strong character traits and inspired other “normal and healthy” people around me to change their own lives. How funny life is. 

The pain had turned to purpose. For the first time in my life, I knew what I wanted and what I stood for.

Immersed in a new life perspective, I met my wife on a dating app, in January 2019. Hinge was the app’s name. She had never had chronic G.I. disease much less heard of Crohn’s Disease or Ulcerative Colitis. When I explained what it was, my past, and how the experience shaped me, she seemed surprisingly unphased and comfortable with the discussion. She quickly became comfortable sharing some of her own deeply personal experiences which usually didn’t happen on a first date from my experience.

3 hours later, we both knew more about each other’s hardest struggles and life values than a person would normally learn in a month or two of dating. We both had pain which brought clarity and then conviction to our lives. After two dates, we both deleted Hinge off our phones and focused solely on each other. I had met a partner I was falling in love with. After three months, we moved in together. Within seven months of dating, we got pregnant with our first son!! But we’ll save that story for another time 3 ½ years later we were married in front of families, friends, and our 2-year-old son. 

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A post shared by Dane Johnson • CHN • Crohn’s Colitis Specialist (@danejohnson1)

My son is extremely healthy and a deep-seated fear has finally laid to rest inside my soul. I could have healthy children and keep my family safe from a past nightmare that once ruled over my life. Nearly 5 years later we are expecting our 2nd son and have built a happy, and health-focused home in Orange County, California. We enjoy eating organic local foods and cooking at home. We are both gluten and dairy-free, ingesting limited processed foods, and minimal sugar intake. We both practice mental, spiritual, and physical health while raising our children with the lifelong values that shaped us earlier in life. We practice functional medicine, use natural herbs & supplements, fitness, biohacking, and even gardening (one of my favs).

So the question remains, how on earth could such a beautiful marriage sprout from such a chronic nightmare? The best explanation I can offer is the worst thing that ever happened to me transformed my world with the beautiful gifts of values, standards, a life mission, and helping others heal around the world. Perhaps a bit of serendipity mixed with the harsh lessons of life is the journey God gives us all. We learn the deepest from our pain. We manifest a life we deem purposeful. We fall in love with a partner who walks alongside us with more adversity surely to rise but never breaking the love we have and the love we choose to prioritize in life.

Back in 2005, nobody was posting on social media about their health issues. Heck, Facebook hadn’t even been out for one year. I felt completely isolated and alone with a complicated diagnosis of an unpredictable and often debilitating disease. I spent the first decade of my life with Crohn’s being very private about my diagnosis. I worked at television stations as a producer, reporter, and morning news anchor—but there was so much behind my smile that I shielded from the public because I didn’t want sympathy and I didn’t want to be looked at as less than.

When I left the news desk in 2014, I was ready to be the voice I needed to hear so desperately upon diagnosis. I was ready to show people who were at the beginning of their journeys that life doesn’t end with an IBD diagnosis. Your plans may be halted for the time being and there may be detours, but you can still reach your destination.

Receiving a chronic illness diagnosis is a lot to handle—it’s complex. Don’t beat yourself up over feeling overwhelmed. Take time to grieve the loss of who you were before diagnosis but understand your IBD is not your identity. Having Crohn’s used to feel like it was the headline of my life story. Now, as a happily married mom of three kids, it’s the footnote.

As the days and years pass and as the flare-ups come and go you will gain so much more than you lose. You’ll have a newfound perspective that’s untouchable to your peers. An IBD diagnosis forces us to mature and cope in unimaginable ways, but the very pain that brings you to your knees on the bathroom floor and causes tears to roll down your cheeks in the middle of the night will cause you to gain intense empathy and compassion for others. You’ll realize your strength and resilience is limitless.

No setback will happen without a greater comeback.

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A post shared by Natalie (Sparacio) Hayden (@natalieannhayden)

Don’t compare your journey to anyone else’s. While there will be many similarities within the IBD family, our experiences are all unique. What works for one person whether it’s diet, medication, or surgery, will not necessarily work for you. Trust your care team. Advocate for yourself. If something doesn’t sit right with you, do your research, and speak up. You know your body better than anyone else. Connect with the thousands, if not millions, of people on social media who boldly and openly talk about their life with IBD. Talking with someone who gets your reality is priceless.

The grief of your diagnosis will wither away in time and instead, you’ll see your IBD as a badge of honor. You’ll often reflect on how much you’ve been through and what a badass you are. It’s not easy to stare at your emaciated body in a hospital bathroom mirror while you’re tethered to an IV and you see all the bruises up and down your arms from the battle of your latest flare-up. It’s not easy to go to a family party and worry and wonder if your food choices are going to cause you embarrassment in your aunt’s house. It’s exhausting to try and put on a front when your average pain level would cause most people to go to the hospital. The pain scale of 0-10 really doesn’t work for the IBD population. It’s not easy to wake up each morning and have no clue what your body is going to do.

Trust that you have everything and more to fight this disease tooth and nail.

We all know you can feel fantastic and like a “normal” person at breakfast and be hospitalized by dinner. There’s no rhyme or reason. Focus on the days when you feel well, and the sun is shining on your face and your IBD has caused you to recognize how beautiful these seemingly simple and mundane moments are. Focus on the times when you feel in control. You are always in the driver’s seat. Sometimes steering in unchartered territories is scary and that’s ok. You’ll always find your way.

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A post shared by Natalie (Sparacio) Hayden (@natalieannhayden)

Before I was diagnosed, I was in my early twenties attending Cal State Fullerton for their undergraduate program in communicative disorders. I also just started my career as an up-and-coming fitness instructor. I was always on the go and was struggling with a lot of stress, anxiety, and buried trauma. The only way I knew how to deal with my emotional pain was to swallow it. I personally believe that my Crohn’s symptoms manifested because my body could no longer handle the emotional pain I was continually swallowing. I was crying out for help, yet I was ignoring the signs until my pain started to manifest as physical symptoms.

October 2015

I noticed my lower abdomen was starting to feel like it was inflamed and swollen. Rapidly my symptoms started to increase. I remember feeling so sleep-deprived because I was running to the restroom throughout the night and day; constantly in excruciating pain. At first, I thought I may have had the stomach flu, but over time I realized it was more serious. 

February 2016

My symptoms became unbearable. Sleepless nights because of the agonizing pain; frequent excruciating bathroom trips; sores in my mouth; severe nausea; severe fatigue; low-grade fever. I immediately made an appointment with my primary care physician (PCP) who did a routine check-up and kicked off a spiral of hospital visits that felt endless. Pinning down a good gastroenterologist (GI) felt impossible and as time progressed I found myself in the ER. Instead of taking my pain seriously, the physician assistant I saw dismissed my issues as “woman problems,” leaving me in tremendous pain once again. Thankfully, my mother came to my rescue and the GI that was my saving grace.

Valentine’s Day, 2016

I was admitted to the hospital after spending the weekend crying and screaming in pain constantly. It was extremely frightening and daunting as this was my first time ever admitted to a hospital. My friends and family kept stating they hoped it wasn’t Crohn’s Disease, but when I woke up from my first endoscopy and colonoscopy, I learned it was just that.

After being discharged, I went through the stages of grief. I was grieving the death of my health. One of the hardest things for me to grasp was having to take lifesaving medications for the rest of my life. Grieving and adjusting to a new normal was extremely difficult. I was naive and it was a battle I had to face on my own. 

After the discharge, I was given a number to a specialty pharmacy– little did I know this was only the beginning of testing various medications that rarely lessened my pain. I was in and out of the hospital roughly every six months for the next two and a half years. I felt like my GI doctor kept moving the goalpost for when I should have noticed the medications to start to take effect. 

2017-2018

I sought out help from an integrative medicine physician and therapist. I also sought out help from three different pain management physicians. Because of my age, it was difficult to find a pain management physician that would take me on as a patient but the third one I found was a godsend. She completely changed my life and gave me my first stem cell treatment which led me to remission. 

I don’t give all the credit to stem cell infusions. I also learned what my triggers are and how to manage them. Being in such a poor state of health was a very low point in my life, yet I chose to be resilient and figure out how to heal myself physically, mentally, emotionally, and spiritually. This monumental experience also taught me the importance of growth. I personally believe we are all better people when we constantly keep striving for growth. We should make it a life goal to actively strive toward evolving into the best versions of ourselves, throughout our entire life. Otherwise, it’s easy to become stagnant and dwell on feelings such as shame, guilt, anger, trauma, regret and so on. I know because I have felt that way before. I chose to be the type of person that isn’t afraid to be introspective and heal the parts of myself that are extremely hard to face. I hope that’s the message others receive when they interact with me or see my posts on social media. I have a desire to help others and I hope that by telling my story and perspective, it inspires and motivates others who have gone through something similar.

Although I know my journey to remission is unconventional and took me through a lot of ups and downs, I’m thankful that I advocated for myself along the way and educated myself no matter what. Navigating life with Crohn’s Disease can be challenging. When I was first diagnosed, being offered unsolicited advice from friends and family was extremely frustrating. Not to mention, how intimidated I felt bringing up my Crohn’s Disease in certain situations, like a work setting. But as I have gotten older, I have learned to reframe those perspectives. The information you share is dependent upon the person you are talking to and the type of environment you’re in. Most often when someone wants to discuss IBD, they mean well and are trying to bond or show sympathy. But not everyone is going to understand or care and that’s okay! But, that’s why connecting to a community that understands you and inspires you is important.

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Affirmations For Other IBD Warriors

Crohn’s Disease has played a very influential role in my life. I have learned a lot of valuable lessons such as the importance of being your own advocate and the mind-body connection. The best part of this whole experience is connecting with so many different people and knowing that I make a positive impact in their life by sharing my journey publicly. The IBD community has made me feel less alone. My heart is full when someone reaches out just to tell me that I inspire and motivate them. When I started to share my story with Crohn’s on Instagram and Facebook, I had so many wonderful Inflammatory Bowel Disease (IBD) Warriors reach out to me. Some of them have become my lifelong friends and have taught me not to be afraid to reach out.

I know advocating for yourself is a challenging task, especially when you’re in pain and are low on energy but do not lose your hope and faith that things won’t get better, because they will. I often refer to the IBD Community as IBD Warriors because that’s what we are. 

Every time I connect with a new IBD Warrior, I am always amazed by how much we have in common. Not only do we have similar experiences, but we have learned how to adapt and be resilient. Furthermore, we have gained a level of emotional intelligence that others don’t fully understand. Empathy comes from emotional intelligence, it’s a learned emotion, it’s not something we’re born with. When I encounter individuals radiating vast amounts of empathy, I can’t help but wonder about the trauma and pain they have had to face to lead to so much compassion. 

The heartache you have had to endure wasn’t fair but the world is so much better with you in it. 

I know, because so many of us IBD Warriors have learned to take our trials and turn them into triumphs. The resilience and strength showcased by the IBD Community is unparalleled– and you are a part of that.