What You Don’t See— Uncovering The Reality Of Living With An Invisible Illness

Instagram has increasingly become a platform for individuals with chronic illnesses to connect, share experiences, and cultivate community. Since starting an account to chronicle my 17-year-long battle with Inflammatory Bowel Disease (both ulcerative colitis and Crohn’s Disease), I am acutely aware that I may be portraying my illness through rose-colored glasses.  

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.  

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?

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. 

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.

Higher Education Professional. IBD Patient & Advocate living in AZ.

Keep up with Courtney on Instagram