Hi! My name is Katie Cohen, I’m twenty-three, and I’m a pretty typical NYC college graduate, trying to navigate through her ¼ life crisis. Yesterday I was filling out an application to Columbia Medical School. This was after I filled out three applications on backstage.com for an amateur roll in a vampire sci-fi web series, an NYU student film about people metamorphosing into dogs and a voiceover for a pubic hair cream. I live with my mother on the Upper West Side of Manhattan, who is pretty accepting of the fact that my income is barely enough to cover my Cattle Dog’s Medical bills. My dog, Cinch, who is the ironically not a cinch at all, recently developed obsessive compulsive disorder and has to go on Prozac. I secretly think that he’s just feeding off of my anxiety. His vet wants him in behavioral therapy. I didn’t even know that was a thing.

 

From the outside, most people would see my struggles as normal for my generation; the generation of living at home, social media addicted millennials, who just want a fulfilling career to validate the bazillions of dollars their parents spent for them to obtain degrees from prestigious universities. But lately I’ve been dealing with a few more obstacles that aren’t so common. Maybe if I didn’t have them, I wouldn’t have clicked out of the medical school application before getting ½ way done with the essay. Or perhaps I would have actually gone to the strange sci-fi audition that I got a callback for. But the fatigue, hours of dry heaving, and pain seemed to get the best of me again. As it so often does.

 

After returning from Mayo Clinic one month ago, I was diagnosed with a condition called Pots Syndrome, along with Gastroparesis and Colonic Inertia.

 

When I was a junior in college, I came down with a severe C-diff bacterial colitis. It turned into a year- long battle that almost killed me. If only my ENT doctor had explained the consequences of taking months of antibiotics for strep throat, my life would be completely different today. After having a fecal transplant (yes, it is exactly what it sounds like), I experienced a full recovery from the life threatening colitis. Everyone thought I would I would be able to return to the University of Texas my senior year of college, healthy and ready to create a new life for myself.

 

Things seemed promising for a while. Minus the fact that I couldn’t gain much of the weight back that I lost from the colitis. Because my body felt like it was functioning normally, I was thankful that I wasn’t going to the bathroom fifty times per day anymore and somewhat accepted my new skeletal appearance. It was when I graduated, that my world turned upside down agan.

 

I was out one night with my friend Gaby in NYC celebrating the end of our college career and the start of our futures. I ordered my typical Salmon dish. Then for three days, I was in the bathroom projectile vomiting. When I was hospitalized for de-hydration, the doctors explained it was severe food poisoning. One week later, the same thing happened. And then again one week later. And eventually the occurrence became normal. In the midst of all of this, my bowels literally decided to stop working. In other words, I couldn’t poop for the life of me. I would go two weeks without going to bathroom, and then have to overdose my body with laxatives. The result was a large release of weeks worth of undigested food.

 

My doctor who performed the fecal transplant told me I had “IBS.” The second doctor I saw didn’t know what to say, other than to put me through a battery of tests that revealed very little. Meanwhile, my body was getting worse. I started having trouble swallowing my food, and could feel it sitting for hours in my stomach after eating a meal. I would regurgitate throughout the day, often through my nose. I could feel my limbs weakening. Sometimes walking from the bedroom to the bathroom felt like running a marathon.

 

I was finally referred to a doctor at NYU who knew that my condition was not just “IBS.” She had me undergo some more advanced diagnostic procedures, which proved that stool could not pass through my rectum and that I developed severe organ prolapse and rectal prolapse overtime from straining. In February of 2015 I was scheduled for a rectopexy surgery, to attach my rectum higher to my sacral bone to hopefully make room for stool to evacuate my body.

 

The surgery itself was a success, minus the big complication. Because of the general anesthesia, and my already very sluggish colon, my intestines were moving at a non-existent rate. I developed something called a bolus, which is basically an obstruction of impenetrable hardened stool that completely blocks your colon, and puts you at risk for colon perforation depending on the severity. My surgeon and other doctors weren’t sure to do at first. I was in the hospital for a few days undergoing colon preparations and hospital enemas, but nothing was working. I looked like I was eight months pregnant and the pain was a constant ten. Finally, my surgeon insisted that she perform an emergency colonoscopy and disimpact the mass herself. Two hours later, the procedure was finished. I had to stay in the hospital for one more night for one more colon cleanse to clear out all of the additional trapped stool that had collected behind the mass, and then I could be released. I think I went to the bathroom over seventy times that night.

 

A few months passed and nothing seemed to improve. Even with the weekly physical therapy sessions I was doing for constipation. It seemed as though my dysmotility was worsening throughout my entire GI tract. Getting food down became even more of a constant battle and I still couldn’t go to the bathroom on my own. I was more lethargic and exhausted than usual, and devastated that the surgery I thought would change my life was potentially a lost cause.

 

My world began to get smaller. It revolved around creating a bowel regimen for myself, journaling everything that I consumed, attempting to figure out the perfect time to space out between meals so that my body wouldn’t send food right back up, taking all of my meds, and getting rest. I felt completely hopeless. I wanted to act. I wanted to be a good girlfriend to the boy I loved. I wanted to be financially independent. I wanted to see my friends, and to explain to them that I wasn’t avoiding them by constantly canceling plans. I just didn’t know how to tell them exactly what was happening to me. I was embarrassed. Depressed. Would this really be the rest of my life?

 

9 more months of the same hell continued. My GI Doctor had connections at the Mayo clinic in Arizona. I was set to be there for two weeks, to undergo a battery of tests and to see several doctors of different specialties who would work together on my case. Within days, I was diagnosed with post-infectious Pots Syndrome, Gastroparesis and Colonic Inertia. The bacterial colitis that I had in college sent my body into disaster mode, causing me to develop POTS (Postural orthostatic Tachycardia Syndrome), a neurological condition that targets the autonomic nervous system and manifests differently in everyone who has it. In my case, it wreaks havoc on my vagus nerve, which helps to control the heart and the digestive track. Because my vagus nerve doesn’t function properly, neither do my intestines, which is how I developed colonic inertia and gastroparesis. Gastroparesis is the inability of the stomach to empty food normally, and colonic inertia is incredibly delayed movement throughout the digestive tract. The pots, which also causes low blood volume, irregular heart rhythms, and incredible muscle fatigue is the source of my overall body weakness.

 

While I still struggle with symptoms daily, a new one being chronic nausea, I’m hopeful that I’ll be able to get back to living a normal life someday. My doctors have me on a cocktail of new medications, and I’m learning a lot about acceptance, how to be honest with my loved ones about my current reality, and the importance of putting out into the universe what I want really in order to recieve it. For me, it's the chance to be healthy and happy again.