You have an incurable disease
The day it all changed. A memoir.
“Though all three men faced the same hardship, their differing perceptions of it appeared to be shaping their fates. Louie and Phil’s hope displaced their fear and inspired them to work toward their survival, and each success renewed their physical and emotional vigor. Mac’s resignation seemed to paralyze him and the less he participated in their efforts to survive, the more he slipped. Though he did the least, as the days passed, it was he who faded the most. Louie and Phil’s optimism, and Mac’s hopelessness, were becoming self-fulfilling.”
— Laura Hillenbrand, Unbroken
It’s October 26, 2013.
Around 6pm in the evening. Getting a little chilly here in Indianapolis. This is your day to go to the temple. The wife, S, has decided that she will stay home, fix dinner and get some work done while you are out. Busy times at work for her.
You pull your coat from the closet downstairs and get ready to head out. Your stomach’s making those gurgling noises again — as if a squirrel’s moving through it. You are not sure if that’s hunger, or the mysterious stomach issues you have been having. There’s a little bit of pain, but you have had bad days. You decide not to eat anything, you’re not in the mood. You grab that bottle of Tums on the kitchen counter, pop a couple of them hoping it’ll neutralize the stomach acids.
Chewing on those Tums, you hop into the car and get on the road. It’s a good 17 mile drive. The I-465 is usually busy, but not today. Thirty minutes tops, door to door.
As you’re driving, you think to yourself how ridiculous it is that the GI doctor thinks you are showing signs of depression. You do look sick, having lost a lot of weight in a relatively short period of time, but you are still in high spirits. You very distinctly remember that conversation with him from a few weeks ago:
Dr. J: I looked at your blood work. All results are normal. You seem to have an elevated white blood cell count, but that’s not unusual. I also reviewed the upper endoscopy results from a couple months ago and it didn’t show any abnormalities.
You: That’s great to hear but I’m still in horrible pain and have bloody stools almost every morning. Is there anything you can prescribe me for dealing with the pain and the stool situation?
Dr. J: It doesn’t look like there is anything wrong with your body or organs. You may actually be experiencing signs of depression, some form of PTSD.
You: But that’s crazy. I didn’t have any trauma nor do I feel depressed….
Dr. J: That’s not the point. What I’m saying is that this pain has nothing to do with your intestines. It’s most likely in your head. Let me explain. Intestines are always working. Some people are just too sensitive and feel every little movement and noise their bowel makes.
Do I have stupid written on my forehead? What the fuck is this?, you think to yourself. You are frustrated.
You: That doesn’t make sense. And what about the bloody stools?
Dr. J: Let’s have a look at your rectum.
You: …okay.
[Rectum examination commences]
Dr. J: The bleeding looks like it’s from an external hemorrhoid. It’s healing on its own but I can prescribe you an anti-bacterial cream. The hemorrhoid was likely caused by the severe constipation you have had recently.
You: So the hemorrhoid is causing the bleeding, okay. But I still can’t really believe I have depression. You can ask my friends or family, or even my colleagues. I’m a happy person.
Dr. J: I understand.
You: So what’s the alter…
Dr. J: [interrupting] My suggestion would be to get on some antidepressants and not worry about your stomach. We’ll continue to monitor the situation. I’m also prescribing you some Zantac, it’s an antacid, and some pain meds. The pain meds will cause more constipation so make sure you drink lots of fluids.
You: I’ll need to think about the antidepressants. I’ll get the Zantac and the pain meds. Appreciate your help.
“Am I really depressed?”, you ask yourself as other cars zoom past yours on the highway.
It’s been more than 2 years since you have been having these episodes of extreme pain, bloody stools, and weight loss. No diagnosis. Insurance refused to pay for the video capsule endoscopy. Stupid health insurance. Upper endoscopy and colonoscopy didn’t reveal anything, except a few benign polyps.
You are 6 feet tall. Your weight has dropped from 160 to 115 pounds in 2 years.
You pull your car into the parking lot at the temple. Something doesn’t feel right. Crampy abdominal pain. I didn’t eat anything, could it just be gas?, you think. You hit the men’s room. Sit on the toilet. Forcing things to come out. No help.
The pain is unbearable at this point. You remember that the last time you had similar pain, curling up on the bed with your knees to your chest helped let the gas out. You decide to do it. Luckily, you are alone in the men’s room. Locking the door from the inside, you fall to the floor. Knees to your chest, flexing your stomach muscles as hard as you can, you try to push any trapped gas out. Fuck. That hurts. But still no help.
Fuck. Fuck. Shit. What do I do? What now?. You stick your index and middle fingers deep into your throat, forcing yourself to throw up. No help. You try again. And again. No help.
You get yourself back up and out. You get to the closest water fountain. It’s all in your head. It’s all in your head.
The pain starts to escalate.
Pain meds. Yes. They’re in the car.
With a hunched back, both hands tightly holding your stomach, you drag yourself to the parking lot. Opening the door, you grab a bottle of meds.
It’s Tums. Fuck. I left the pain meds at home. What was I thinking? Fuck! Fuck!
You start driving home. It’s all in your head. It’s all in your head. Sip some water.
A few minutes into the drive you start screaming in pain. Still driving. Few more minutes in, you start crying. Still driving. Each cry is harder than the cry before. You start slapping your cheeks with your left hand. Harder and harder. Not to fall unconscious. Right hand still on the steering wheel. Your eyes are drowsy. You aren’t sure if you are driving in your lane. You reach home. You don’t know how. It’s all hazy. S is not around. She must be in the bathroom or something. Groaning in pain, you reach for the pain meds. You pop a couple in your mouth, and drag yourself upstairs to sleep this off.
Crazy thoughts are racing through your head — I’m not going to die tonight. But what if I do? S doesn’t deserve this shit. She is having to deal with all my sickness. She deserves someone better than me. Perhaps I should die. Why is this happening to us? Why is this happening at all?
You are on the bed. Curled up. Crying. You start talking to yourself, “Everything’s going to be ok. It’s all in your head.”
The pain is through the roof now. You start crying louder, but you can barely hear yourself. “S!, S!, S!”, you cry. The cry is so hard that your throat hurts. You hear her voice back. She’s calling out your name. You hear her footsteps racing towards you. The rest is a blur. You vaguely remember: S hauling you into the car. You crying in pain. Waiting to get admitted at the ER. Your body on a stretcher. The beautiful face of S.
Are you dead?
You feel someone’s hand in yours. You wake up. You look for S. She’s right there.
There are nurses around you. S is on the phone. She must be calling for help. You are still in excruciating pain. Start crying and screaming at the same time. The nurse asks you to rate your pain on a scale of 1–10. What sort of a question is that?. “11”, you say.
You realize that the nurses have been pumping IV meds and fluids into you. You cannot feel the needle up in your arm though. Weird.
Your friend P arrives. A couple months ago, P drove you home from the hospital after the upper endoscopy. He is the only friend who knows about your stomach issues. He is a great human being, a fantastic internal medicine doc, and a dear friend. Always there when you are in need. He is chatting with S and the attending ER physician.
The nurse comes back to check on you. You have absolutely zero energy to scream or cry. You are now humming in pain. Hum. Hum.
Nurse: Are you still in pain?
You: [humming] yes
Nurse to other nurse: Looks like the pain meds aren’t working. We’ll have to up the dose or switch to something else.
Nurses starts a new IV line, switching from Oxycodone to Morphine. You just lay there. Humming. You ask for water. You mouth is dry. The nurse says no.
Time is passing strangely.
Your bed is wheeled into the MRI room. They unhook the IV line from your arm, and the nurses slowly help you get onto the scanner bed.
Done. You are back in the room. The pain has subsided but your mouth is super dry. Still no water.
A young doctor with sleepy eyes is having a chat with S and your friend, P. S seems worried but calm. She has the uncanny ability to stay centered in precarious situations. Everything must be alright. You feel at ease.
The doctor walks over to your bed with a nurse who is holding a bunch of files.
Doctor: Hello. I’m Dr. MK. How is your pain now?
You: It’s manageable.
Dr. MK: I’m a gastric surgeon. We looked at the MRI and found free air in your bowel. It means that your bowels have ruptured. Most likely from severe inflammation. This caused multiple perforations in your small intestine. This is extremely dangerous and can lead to sepsis and possibly death if not treated immediately.
You stare at him in utter disbelief.
Dr. MK: We’re going to do everything we can. There are two options. Both require surgery. We’ll try the minimally invasive laparoscopic way first, but if that doesn’t work, we’ll have to cut you open and remove the diseased tissue to perform a small bowel resection.
You look frantically at your wife and other friends who have started to gather around you. Dr. MK appears confident.
Dr. MK: I have discussed this with your wife and P. There are some risks, but I believe surgery is the only option right now and we’ll have to move quickly.
You: Okay. Do we know what my condition is? Do I have gastric cancer? Why did the perforation happen?
Dr. MK: We don’t know right now. During the surgery we will biopsy your tissue, which’ll give us more information.
You: Okay
Dr. MK: We’ll prepare the operating room for surgery now. An anesthesiologist will be with you shortly to go over the details and get your consent. We got you!
S is holding your hand. Still calm. Your closest friends, some tense, some calm, are all gathered around your bed.
Will you ever see them again?
The anesthesiologist arrives and goes over the procedure. He assures you that he will be right there, personally monitoring the dosage. The nurses start rolling the bed to the operating room. S is still there holding your hand. Her eyes are puffy. She may have been crying hard, just not in front of you. She looks concerned, but assured. The nurses keep rolling the bed.
It’s just you, the anesthesiologist, and the nurses now. The bed still rolling. The anesthesiologist tries to ease you up with a chat, asking where you work, what your profession is. You ask in return if the anesthesia he plans to use on you is Propofol. He looks perplexed. Guess he wasn’t anticipating that question from a Morphine induced patient. “Indeed, Propofol”, he says. He inquires if you studied biology in college. You say that Propofol is what they gave you during the upper endoscopy procedure. He commends your memory.
The bed stops rolling. You are asked to take your clothes off and change into a dull blue hospital gown. The nurses help you out. You eerily roll back onto the bed.
The bed is wheeled further down the hallway and you enter into a crowded room where everyone’s wearing green gowns and masks. You see a bunch of scalpels and tools on a steel plate. It’s hard to tell with the masks, but you think you recognize Dr. MK talking to the nurses. That looks a bit like the anesthesiologist. You think he was with you a few minutes ago. Were you hallucinating? You’re not sure.
It hits you that you are going into major surgery and you may or may not come out alive. Dr. MK says something. The anesthesiologist says something. Everything is hazy. You are asked to count down — 10, 9, 8, 7…
You wake up. Slowly open your eyes. You see S — she is tearful, but happy — and a few friends around you. They have all been waiting for this moment. To see you open your eyes. You notice you’re not in the operating room anymore.
Is this for real?, you think.
Dr. MK walks in to debrief you on the surgery. You are still drowsy but through your half shut eyes you try to pay attention. Dr. MK says: “The surgery was successful. Laparoscopy didn’t work out so we had to cut your belly open. We removed all parts of the diseased small intestine, which was severely inflamed and had multiple perforations. The surgery took about 3 hours. We took out 14 inches of the diseased intestine. You’re lucky you skipped dinner. Had you eaten any food the situation would have been very different. The biopsies have been sent to the lab. I’ll study the reports in detail with other senior GI doctors and oncologists within the hospital network.”
The doctor keeps talking. But you’re so devoid of energy that your attention dwindles until you hear him say:
“…you have an incurable disease…”
It’s August 15, 2018
Crohn’s disease
Is the name of the devil
Haunted was last night
So was the day before
But today will be different
It will be better
Stay the course
Keep fighting
For if you don’t
No one will for you
Every breath of yours
Make it count
For the little girl who calls you dada
Happy birthday my little warrior princess
The light of my life
I love you
You are my everything.
On October 27, 2013 I was diagnosed with Crohn’s disease. And life as a chronic patient sucks. It shouldn’t, but it does. I’m constantly running around clinics, hospitals, labs, pharmacies. Remembering to take the right number of meds at the right time. Figuring out what to eat and what not to eat. And on and on and on…
I cannot — will not — let this disease take over my life. GutAI is born out of my own frustrations dealing with Crohn’s. It’s a disease management platform for Crohn’s disease patients. Private beta releases today. It’s not a coincidence that the release is on the same day as my daughter’s 2nd birthday. If you are a Crohn’s patient, we would love to seek your feedback. You can sign up here.
Thanks to Sheela Ponnala, Mieke du Plessis, Forrest Held, and Max Milne for reading drafts of this. Special thanks to Diya, my daughter, for all the inspiration.
