This week, we’re presenting two stories about times when science got personal and research started to hit home.
Part 1: After years of suffering, Phillip Comella discovers the cause of his “excessive bathroom breaks” while working on his thesis in biomedical science.
Phillip Comella is pursuing a PhD in Biomedical Sciences at The Icahn School of Medicine at Mount Sinai. His research includes machine learning and genetics in an effort to better diagnosis patients and simulate disease. Phillip has a passion for translating technology and tales from science to the public.
Part 2: Neuroscientist Kelley Remole begins suffering from mysterious and paralyzing headaches.
Kelley Remole, PhD, is the senior director of scientific programs at Columbia University's Zuckerman Mind Brain Behavior Institute. She worked previously at the American Museum of Natural History and has consulted on a number of projects, including Neurodome, a planetarium show about the brain. She has been nationally recognized for her science outreach work and has been featured on local and national television.
Part 1: Phillip Comella
So about five years ago, I’m sitting in the basement bathroom of my first job with my head in my hands as my boss is shrieking her voice through the crack, “Phil, are you in the bathroom again? We are not paying you to poop.”
As much as I hated her and, trust me, I hated her, I had to admit that the bathroom breaks were getting a little excessive. But I never really thought too much of it. Going to the bathroom is healthy. It just shows I have a fast metabolism. If all of you go to the bathroom once, twice a day, I’m going to the bathroom like eight to twelve times a day. It just shows that I’m eight to twelve times healthier than all of you. And I don't even need to go to the doctor for being too healthy.
But on poop number six before noon on that particular day, there was blood. Not just a little bit of blood, like a lot of blood. So I went to the doctor and I explained that I’m bleeding out when I go to the bathroom.
He says, “Well, do you have a family history of this?”
And I said, “Well, kind of. My grandfather had colon cancer and he actually had very similar symptoms to this all the way up until he died one day after going to the bathroom, so I’m a little concerned.”
He says, “Don’t worry. You're in good hands now. Bend over and take off your pants.”
So he's just going out doing his excavation work, snaps off his glove and says, “Definitely hemorrhoids. Squirt this ointment up your butt for the next two months, you'll be cured. If not, come back.”
So great. The next two months I squirt this ointment up my butt but, to my surprise, I don't get any better at all. I actually get way, way worse. It gets so bad at one point I’m actually buying maxi pads to line the inside of my boxers because I’m bleeding even when I’m not using the bathroom. And let me assure you, maxi pads are not designed for people with testicles. Those winglets stick to everything. Everything.
So I go back to the doctor and I explain to him I’m a 22-year-old man having his period for the first time and it’s not going well.
He agrees and he says, “All right. We’re going to have to do surgery.”
With the surgery I need someone to come pick me up. So I call my girlfriend over and she doesn’t really know all of this. My bloody poops didn’t really come up during pillow talk and so I never really told her because I was honestly kind of ashamed of it. It’s not really a sexy disease. No protagonist in a movie is getting diagnosed with perpetual poop. That would really change the ending of Fault in our Stars. So I never really told anyone about it.
So when I’m telling her, it’s kind of hitting her in waves. And at the end of it I say, “Well, listen. Can you come pick me up at the hospital on Friday?”
She says, “I actually can’t, because I’m seeing someone else.” Which wasn’t really what I was expecting to hear.
So we talked for a little while and she ultimately took all of her stuff out of the apartment leaving it a very cold and vacant place, which is fitting because that’s exactly how it felt.
Then I’m scrolling through my phone and I get an email from my boss, the terrible shrieking woman from before. In the email it’s says, “Dear Phil. Although you have the sick leave to take off, you've not given me an exact detailed message explaining the procedure so I am not granting you the time off.”
And people have their limit to the amount of stress and trauma they can take. Then they go into what’s known as the Fight-or-Flight response. And on that day I said, “Fuck it. Let’s fight.”
So I hit ‘Reply All’, as a few of you have, and I said, “Not only is this a violation of my HIPAA rights, this is a violation of the employee handbook,” I cited the section, “and don’t worry about it because I’m never coming back to work ever again.”
The moment I hit ‘Send’ on that email, a countdown started because, now, I only have until the end of the month for health insurance.
So I called the doctor the next day and said, “Not only don’t I have someone to pick me up on Friday, I also would run out of health insurance for the next two weeks.”
So we have to conjure this plan and it has some sacrifices to it. I don’t have enough time to do the proper pre-op or post-op and the surgeon that we had originally scheduled can’t do it anymore so we had to find a general surgeon who doesn’t specialize in this stuff.
So the primary care physician contacted him and said, “Listen, just cut out anything that’s bloody and necrotic,” and he said, “Sure.”
So we do the procedure and I feel better. But about a month later the blood comes back. So I call the doctor because I can’t afford to physically go see him anymore and he says, “Listen, there's a chance you're just one of the small percentage of people that just has chronic hemorrhoids and there's nothing we can do about that.”
So I just kind of have to accept that as fact. I have to accept that as the new me. I am a chronic hemorrhoid hero. It’s a secret identity. I don't tell anyone. It’s like any other superpower or any other superhero. My only superpower is that I have to shit every hour on the hour so I get pretty good at telling time, which I guess is the only benefit.
But I never really changed my mind on that. It’s just something I have to accept as fact so I changed my whole life to kind of accept this new power. And I don't rethink it for years, until a couple months ago when I take a road trip with a few friends.
On this road trip, we’re going down the East Coast. We’re coming back. It’s like a 20-hour straight driving at the end of it. And we get to the Lincoln Tunnel and I’m awoken in severe pain. I was like, “Shit. We’re so close.”
It’s twenty hours of driving. We’re like this close to getting home. I can deal with it. I can rule it. But the Lincoln Tunnel and traffic, which is New York’s most terrifying villains, have a different plan in mind.
So we get to the bottom of the Lincoln Tunnel and I’m not doing well at all. So I kind of whisper to my friends who don’t know about this secret identity, I say, “Listen, I’m not doing too well.”
They said, “Well, we’re driving as fast as we can. We’ll get there soon enough.”
That’s when I start shaking. That’s when I start sweating. That’s when my stomach starts cramping. So by the time we get to the end of the Lincoln Tunnel, we hit that first red light and my brain shuts down. I go back in this Fight-or-Flight response. This time I chose flight and just kicked open the door and started sprinting.
So it’s nine in the morning, I’m sprinting down the street and I’m running up to these restaurants. I’m hammering on the door and I’m saying, “Please, let me use your bathroom. Please, let me use your bathroom.”
They're like, “No bathroom, no bathroom.”
I go to the other place. I’m hammering on the door and they say, "No baño, no baño. Port authority.”
I’m like, “Okay.”
So I’m sprinting down the street. I’m pushing over grandmas, I’m hurdling taxis, I’m running as fast as I possibly can. I see the door. It’s held open by a rock. I fling it open, I run down the hallway, I see the elevator. I’m mashing the button but nothing is happening.
So I’m starting to look at other options here and that’s when I see the bowling shoes, and the bowling balls behind this long desk. I’m not in the port authority. I’m in the bowling alley next to the port authority and they're not open yet. I don't know why the door is held open by a rock.
So my brain just starts working in overdrive, like how much time do you have left? How much pain are you in? How much sweat have you lost? And at that point it flashes in front of me. “You're out of time. Jump the desk.”
So I jump over the desk, I kick over the phone and the pens, find a trashcan, drop my pants…
I don't know how many of you have ever broken into a bowling alley at nine in the morning to shit in a trashcan but it’s a very coming-to-Jesus sort of moment. It really allows you to rethink just about everything about yourself. And it’s in that moment where I thought, “Maybe this isn’t hemorrhoids. Maybe this is something different.”
So at that time in my life, a few years have passed. I’m a graduate student and I’m preparing for my thesis proposal. That’s just a formal way of telling the school what I plan to do for the next eight years of my life, which is terrible. But my plan is to basically create this machine learning tool that can read genetics and then spit out a diagnosis.
My boss kind of tells me, “What do you want to use that for?”
And I said, “Listen, I don't really care what we use it for because I just need a lot of data to do the first try.”
He says, “All right. We have a really good data set in ulcerative colitis. Just go for it.”
So I write it up. I get it finalized and formalized and it’s accepted, so it becomes my thesis and I have my first meeting with the ulcerative colitis group.
They say, “Well, what do you know about ulcerative colitis?”
“Well, I actually don’t know a whole lot because I spend my whole time trying to figure out the technical sides of this.”
They said, “Okay. Ulcerative colitis is a chronic autoimmune disease.”
Most people are familiar that the immune system is there to protect you against viruses and bacteria and other things that make you sick but, on occasion, it will go rogue and will act as a double agent. In the case of ulcerative colitis, it will start attacking your intestines.
So after hearing that I’m like, “Wow, that sounds terrible. What can you tell me about the patients?”
So they’re describing the dataset and they said, “Listen, we have a lot of people between their mid-20s to mid-30s. They have a range of intestinal complications and they often go misdiagnosed for years.”
And I kind of get this out-of-body experience, like someone is talking about me to me. She could have said, “Listen, ulcerative colitis patients are like this tall, have dark hair and their girlfriends often break up with them during a flare-up.” And I’m like, “That sounds familiar.
So I call a new doctor once I get out of the meeting and I tell him, “I have ulcerative colitis.”
He's like, “Listen, just because WebMD says…”
I’m like, “No. I’m well past that. We’re well past WebMD. I want a colonoscopy, I want a histology, biopsies. If it’s an –ology, I want them looking at this.”
So we do all these procedures. He pulls me into his office when the results are done and he says, “Phillip, I’m sorry to tell you but you are not the chronic hemorrhoid hero. You are the ulcerative colitis champ.”
I'd never been more relieved to have a chronic autoimmune disease because I spent years wearing this misdiagnosis that just didn’t fit me. I would like to take credit for discovering this myself but that’s not really what happened. This transformation was more just being flexible to new information as it came to me.
So after some medications that I'll probably have to take for the rest of my life and some pretty heavy diet changes, I, for the first time in five years, am pooping once a day. That’s a superpower I will gladly bear. Thank you.
Part 2: Kelley Remole
It was a brisk Saturday in October a few years ago. I was shopping for winter coats for my children. They're ages one and three at the time. It was a nice way to spend a weekend after a long week at work.
I’m a neuroscientist by training. I’m an educator by vocation. And I've always been fascinated by the brain. Ever since childhood, the way this piece of biology in our head determines everything about who we are, our movements, our feelings, our dreams.
And as I was in the store balancing a diaper bag and my children toddling about and had some hangers of little jackets dangling from my wrist, I coughed three times. One, two, three. And I was struck with a headache so painful I almost fell to my knees. It felt like razorblades were being dragged across the back of my head from the inside.
With the rising sense of panic, I realized I had to get out of the store. I dropped the jackets in a puddle on the floor and I got my kids safely outside to my car. I strap them in so I knew they’d be safe and I got myself into the front seat of the car. I reclined back, not sure what to do next and, quickly, the headache kind of went away leaving me shaken but safe enough to drive home.
That weekend passed in kind of a haze of headaches. I wasn’t quite sure what was going on. At one point, my little son, a year old, was crying on the floor and, out of habit, I reached down and scooped him up and brought him in my arms to comfort him and I was struck by another one of these headaches so painful it brought tears to my eyes. I passed him to my husband Lucas for him to comfort him and I went to lay down to get rid of this headache.
My husband and I talked about this. We’re confused but not quite sure. He's an anesthesiologist physician but he doesn’t know much about headaches.
So Monday came around. I went to work, because I always go to work on Mondays, and I saw a neurologist in the afternoon. I explained to her these weird headaches. I explained to her what was going on.
She said, “Okay, let’s do a neuro exam.”
It’s the kind of exam where they test your hearing, your vision. She had me stand on my tiptoes, walk in a straight line. Heel-toe, heel-toe. Stand straight up and down with my feet together and my eyes closed. Everything was normal. She ordered MRI, just in case, and sent me home.
A few days later she called me. There had been a finding. I was kind of taken aback and she explained that the back of my brain, this region called the cerebellum was lower than it should be.
Picture this. Think of a brain floating in a sink. The skull is the sink and the pipe leading down is the spine and the brain floats in this sink. The liquid is called cerebrospinal fluid and it runs back and forth between the spine and the brain, around the spine and the brain, up and down. And just in the back of my brain, the cerebellum was almost plugging that drain a little bit.
She said, “Some people are born with this. It’s called chiari and they may never know it. It doesn’t even give them problems, but you should probably follow-up with a neurosurgeon just in case.”
So I called my husband and he started Googleing, because even physicians use Google. He learned what he could about chiari, basically what the doctor had told me. But there were pieces of my headaches, my symptoms, my family history that wasn’t quite adding up.
He started searching medical databases. He found that there was this kind of rare condition where people can develop a leak out of the lining of the pipe out of their spine and the cerebrospinal fluid can leak out of this little tear. It kind of matched what was going on but it didn’t actually cause chiari, so that didn’t quite make sense.
But then he kept reading and he looked in the medical literature, he saw some case studies. There were some cases where people had a leak and then they had chiari. It mattered whether they had chiari before or chiari after, because if you do a surgery for chiari then you're opening up the drain but that actually makes the brain sink more, so obviously you don’t want to do that.
This was all confusing and I was still feeling worse but I was still going to work. I was reducing my hours, still going in for important meetings. I remember one day I went in and I was sitting around the conference table with my boss and other senior leaders and I was getting uncomfortable in this meeting. Every time I shifted in my chair, I was kind of getting a headache but it was tolerable so I kept going. I didn’t say anything.
Then I coughed once and my head just exploded in pain. I just remember pushing back and stumbling out of the room, embarrassed but doubled over in pain at the same time. My boss helped me find an empty office. I lay down on the floor in the carpet, my legs under the desk, and just lay there recovering.
So I stopped going into work after that but I kept working from home. I would take phone calls lying flat on my bed, not even with a pillow because the more horizontal I was the better. I would type with my laptop on my hips trying to kind of see the screen but I would crane my neck and it’s kind of a mess. But I kept doing this and waiting for this appointment with the neurosurgeon that the neurologist had recommended.
Finally, I get in to see the neurosurgeon and explain to him what happened. My husband is there and I’m kind of getting confused with the details at this point because my mental state was just not what it should be.
He listens and he looks at my MRI and he says, “Well, yeah, that looks like a chiari. Let’s do a neuro exam.”
So we did the same thing, like vision, hearing. He had me stand on my tiptoes but this time my legs wobbled like crazy. He had me walk heel-toe, heel-toe and this time I couldn’t. I stumbled. My hands flew out as I tried to find my balance. This time when he asked me to close my eyes and stand, I swayed so much that Lucas had to catch me. It was clear I was getting worse and fast.
He admitted that that was strange and Lucas outlined this theory that what if it’s a leak and what if it caused a chiari. The neurosurgeon, this is like a really eminent neurosurgeon. I watched him on New York Med, that reality show about physicians, and he had taken a tumor the size of a baseball out of this kid’s head and the kid survived. It was a great story. Like this guy is at the top of his field.
He's like, “Okay, that’s a nice theory but you're an anesthesiologist. Thanks but no thanks.” And he said, “Really, without a scan of your brain before you got sick, we can’t really jump to conclusions.”
I sat up from my chair and I was like, “I do have a scan of my brain from four years ago. I was involved in this education program about the brain at Neurodome and I was the brain model. So I have this scan from this other institution. It’s across the state. It was four years ago.”
And he's like, “Oh.” Then, really quickly, he starts typing in his computer. Click-click-click and it’s like CSI, brain scan, and he brings up my image from four years ago. There, in front of us, side by side it’s so obvious that even someone without a medical degree could see my brain had changed in the past four years.
He's clicking through this in his head and he turns to me and he's like, “I've never seen a case quite like this before.” He said, “This is serious but you're unlikely to die.”
I’m like, “You're the doctor here. You're the one on TV taking out these tumors and you’re telling me (a) you've never seen this before and (b) you can’t rule out death.”
So I’m struggling with this and he says, “You can’t keep working.” So I take his word for it this time. I didn’t listen to my husband but I listened to this doctor.
He didn’t have a whole lot to offer me. We did some scans at Columbia to try to find this leak. Inconclusive. Over the next few months, I went to a series of doctors in the local area, different institutions, different departments, different people all looking for answers. And every time it was like, “Oh, maybe it’s my chiari.”
My husband would be like, “No, maybe it’s not.” So it’s back and forth, and let’s look for a leak, we couldn’t find a leak. We tried to treat for a leak but inconclusive. A little bit helpful. Not really.
So I found myself the headaches were getting worse and worse. I was getting a hundred a day. I couldn’t lift my kids. I knew how to not do that as painful as that was, but I couldn’t avoid the sneezes and just rolling over in bed. And all of these things would cause this 30-second calamity in my head. So I had to keep searching for answers.
All the doctors said, “You really need to see some experts in this. There aren’t that many but there is a group at the Mayo Clinic in Rochester, Minnesota. These are the doctors that literally wrote the book on this.”
So that’s where I went for a series of visits for over a few months and they did some tests and they did their imaging. They were scratching their heads and admitted they were really working on the edge of medical knowledge here, but I was desperate.
Finally, we got to the point where they said, “We only have one last test, really. One last procedure to give you to try to treat a leak. We don’t really know where this leak is, if it’s a leak, but we can do this test. There's a lot of radiation because it’s a CT scan.”
And I said, “Do it. I got to do something.”
So they anesthetized me. They identified 22 spots along my spine that were weak and could have a tear in them. They injected them with blood, my own blood, and a little bit of biological glue and they sent me home. I waited and I waited and, over the next days, over weeks and months I started to get a little better. I started to add back my home routines. I started to engage more with my kids, with Lucas. I started to add back work very slowly, mostly from home. But really started to feel a little bit more like myself.
But it wasn’t enough. I still wasn’t picking up my kids. I wasn’t engaged. I wasn’t back at work like I wanted to be, and so I went back to the Mayo Clinic.
They said, “Well, we can do this but only one more time. Because of the amount of radiation, because of your age, your body can’t take that much radiation without putting you in a very risky zone.”
I said, “Look, it’s all I've got. Let’s do it.”
So on a cold October day, about a year after those first headaches, I went in and they did it again. They found those weak spots and they injected them with blood and glue and they sent me home. And I waited and I waited.
Not over days but over weeks and over months I started to feel really truly better. One day, my little guy, who then was two-and-a-half, was crying over some slight his sister did to him. I picked him up, I scoop him up into my arms and I didn’t get a headache this time. I snuggled him into me and I said, “It’s going to be okay.”
This time, instead of tears of pain, I had tears of joy because I knew that what was so important to me was with me all along.