Apr 2, 2012

Gutless

Back in 2009, Jon Reiner was feeling as healthy as he ever had. Jon has Crohn's disease--an autoimmune condition that affects his gastrointestinal system--but it had been in remission for a year. He was eating like a horse and felt terrific. But then one afternoon, a strange and ferocious pain struck him in the gut. It felt as if his insides had exploded. Because, well, they had. Jon was rushed into surgery and survived, but when his doctors met him afterward in recovery, they told him he there'd been a complication: in order for Jon's gut to heal fully, they'd have to shut it down and feed him intravenously. For a while. The doctors told Jon the nutrients he'd receive would give him everything he'd need to survive. But they were wrong.

This is a story about the deep power of the gut--not just to shape our minds, but to keep us from losing them. It's a story that suggests chewing and swallowing and digesting aren't just things we do to stay alive ... but things we do to stay, well, human.

Read more:

Jon Reiner, The Man Who Couldn't Eat

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Jad: Ready, hey, I'm Jad Abumrad.

Robert: I'm Robert Krulwich.

Jad: This is Radiolab and this whole hour we have been talking about, go ahead.

Robert: Guts.

Jad: Guts.

Robert: In the last section, we talked about bacteria, the armies of them that are in your gut.

Jad: The problem is that they're a little hard to picture abstract.

Robert: Why don't we finish with a story that makes the whole issue real and much more concrete? This is the tale of a troubled relationship between a man-

Jad: His on-again, off-again gut. Hello.

Robert: Hello

Jon: Hello

Jad: The man's name is Jon Reiner. He's a writer, lives here in New York.

Robert: One day, you are eating your way through your life as you usually do, and then things take an odd turn.

Jad: Yes, how did it begin?

Jon: It began with a surprise. I was at home and I was about to go make myself a tuna fish sandwich.

Jad: Jon thought, "Let me go to the bathroom first, get that out of the way." He sits down on the pot to do his business.

Jon: I felt a funny twinge in my gut.

Jad: Now, Jon has had gut pain before.

Jon: I suffer from something called Crohn's disease, which is a gastrointestinal condition. I had gone through a period of about a year's remission, excellent health.

Jad: When this pain came on, Jon figured, no big deal.

Jon: This seemed to come out of nowhere, and I thought, it'll go away out of nowhere.

Jad: Like usual.

Jon: But it didn't. Within about a minute, what was a small twinge, all of a sudden felt like a knife into my gut.

Jad: Before long.

Jon: I'm on my living room floor, flat on my back, and I can't move.

Jad: Jon calls an ambulance. They rushed him to the hospital. When they get there, the doctors take one look and tell him, "Your intestines were clogged, and now they've burst."

Jon: It's now spreading bacteria throughout your system. Basically, you're on the verge of having sepsis.

Jad: Meaning you could die.

Jon: -you need emergency surgery, but-

Jad: They also told him.

Jon: -That I should recover.

Jad: When he came out of the OR, it looked like he would, but the doctor said, "Let's play it safe. Stay here for a week, we'll feed you through an IV and give your gut a break."

Jon: I'm on an IV for a couple of days. I've been on nothing by mouth in the hospital numerous times before but always for four to five days.

Jad: After four or five days, Jon says, "What normally happens is that you'll start to feel hungry again."

Jon: That's a great sign. That means that you gut this healing and-

Jad: It's ready for food. This time, that didn't happen. In fact, he says he got sicker.

Jon: Nausea, vomiting, chills, fever spike.

Jad: The doctors take more pictures of Jon's insides and they noticed something weird.

Jon: In the area where I had a tear in my intestine, there's now a fistula, which is a hole.

Jad: Normally, this is something you could sew right back up. The doctors tell him, "In your case--"

Jon: "No. The tissue of around the area of the tear is so compromised that you can't withstand another surgery right now. Plus you've got a high level of infection again, you're no candidate for surgery."

Jad: "Our only solution," They tell them, "Is to let your gut heal on its own. In order to do that, we've got to shut it down. Basically, numb it with anesthesia.

Jon: My gut was in an induced coma. Nothing would pass through it, there'd be no activity.

Jad: Which meant the doctors told them obviously, "No eating. Instead--

Jon: "We're going to put you on a food pump." The food pump is a mechanical pump about the size and the weight of two bricks carried in the backpack.

Jad: The pump in the backpack is attached to this big bag.

Jon: Big bladder, the big 3000-milliliter bag of TPN is the medical name for the nutrients.

Robert: What does that stand for?

Jon: Total parenteral nutrition. A stream runs out of the pump through the tube into my arm.

Robert: You were going to be given essentially an outdoor stomach.

Jon: That's right.

Jad: This is where our story really begins. Jon goes home with his new exo-stomach. He can't eat, but every day around mealtime, he says he would turn on the food pump. This is actually what it sounds like.

[background noise]

Jon: I'd start my feeding at four o'clock. The pump would start, I'd sit on the loveseat for a while. My kids would come home from school. My wife would come home from teaching and then the real food would come into the apartment.

Jad: Sometimes neighbors brought food over. Sometimes Jon's wife would cook. Regardless--

Jon: I was always sitting on the loveseat in our living room with the food pump whirring.

Jad: Like a dishwasher. While just a few feet away, his family would sit at the table.

Jon: Eating fabulous food.

Jad: Night after night this happens.

Jon: It's making me absolutely crazy.

Jad: He says after about a week of this, and then two weeks and then three weeks of just sitting there night after night, watching his family eat dinner without him, he says he would start to drift off and get lost to these really vivid daydreams of meals that he'd eaten in the past.

Jon: One of the first memories I have is going to Katz's for the first time.

Jad: Katz's is a famous Jewish deli in Manhattan.

Jon: Standing there at the counter, where the counterman cuts the pastrami and he puts it on a plate and it cuts it out of the hot cooker and it's not a fork and he hands it to you and you take a taste.

Jad: He says in that particular instance when he took a bite that first bite of the pastrami sandwich it was like pow. He said it was the first time in his life where he suddenly, he was like, "Oh my God, I'm Jewish. I am Jewish. These are my people." That was the first time he felt that.

Jon: It was. It was.

Jad: After about a month of no food at all and these vivid daydreams about food something weird happened. Jon got hungry like actually hungry which really doesn't make much sense because hunger signals normally travel from the gut up to the brain and his gut was numb but he says really started to feel hungry.

Jon: It was, I think of it, it was an existential hunger.

Jad: It got really bad. For example.

Jon: My wife's a terrific cook. One night she made a little treat for the kids, mini burgers, and French fries. Our small apartment smelled like the kitchen of a White Castle. My wife brought out this big plate of sliders and a pyramid and the kids were knocking down the pyramid and throwing the back and I couldn't take it anymore. I snuck out of the living room while they were preoccupied. I went into our kitchen and there were some fries on the stove top. I put my hand on the fries and I brought them up to my mouth and I was expecting salt and oil, fatty goodness, and the texture of crunchiness and all that.

Jad: I'm tasting it now.

Jon: I put it on my tongue and I've got nothing.

Jad: Nothing?

Robert: Really.

Jon: I'm rolling it around--

Robert: You can't even feel on your tongue?

Jad: Not even the salt?

Jon: My tongue feels-- It's like when you go to the dentist and you've got Novocaine and my tongue is numb and so I start--

Jad: What was going on? Was it your tongue was out of practice?

Jon: I couldn't figure out what's going on. Then I brought up a knife.

Jad: Jon claims that when he looked at the reflection of his tongue in this metal knife.

Jon: I see that my tongue is as flat and smooth as this Formica tabletop I've got my hand on in your studio.

Jad: Oh, so you don't have the little bristly funny things?

Jon: Right. I realize I haven't used it in so long that my taste buds have evaporated. They're gone. At the moment that that happens my oldest son, Teddy who was nine at the time comes in and he says, "Dad, you're not supposed to eat." I said to him, "I wasn't eating. I wasn't eating.

Robert: It's like you switched places almost.

Jon: He looked at me with the most scornful disgusted, just ashamed expression and I was completely humiliated. I had not only failed as an eater-

Robert: Like a shame flood.

Jon: -right, I'd failed as a father as well.

[music]

Jad: As the weeks dragged on and Jon didn't get any better, he actually started to take that thought seriously. Like maybe he really was failing at being a dad.

Jon: I'm a stay at home dad. As a result, I'm the shopper and the cooker and the food planner and the provider for us. I was out of commission three years out of work.

Jad: With no gut. Meanwhile--

Jon: I can't stop thinking about food. I'm remembering food that I ate 20 years ago like I had that afternoon. I'm online looking up menus from restaurants that I've gone to.

Robert: Really?

Jon: Yes, and looking up recipes for dishes that I've made.

Jad: This obsession grew and grew until one night he says his neighbor Marsha.

Jon: Decided to cook for us one night when I wasn't eating. She brought down a chocolate bundt cake for my wife and kids to eat.

Jad: Walks it right past Jon on the way to the kitchen.

Jon: I could smell this thing. I could smell the rum. I could smell the eggs. I could smell the flour. I could smell everything.

Jad: Again, he sneaks into the kitchen.

Jon: I lower my nose down to this bundt cake and I'm smelling it and I'm sniffing it and I'm inhaling this thing like an anteater. That's not enough in my state. I plunged my hands into the chocolate cake.

Jad: You what?

Jon: I plunged my hands into the chocolate cake.

Robert: In order to get one with the goo or what?

Jon: In order to get some sensation of connection with food.

Robert: Did you think, "What's happening to me?" Or did you think, "Oh, the joy."

Jon: At the moment my fingers were in this cake, I felt, I'm in heaven. I've reconnected with the living. I have food, if not in me, at least on me. The moment while I'm experiencing the most pleasure, my wife comes into the kitchen.

Susan: When I went in to get the kids more food, I found him-

Jad: This, of course, is Jon's wife, Susan.

Susan: -with his hands in the cake, just trying to touch the crumbs, and he looks so guilty. I was also like, “What are you doing?”

Jon: "What are you doing?"

Susan: It's like somebody's going through an underwear drawer. It was very wrong.

Jon: I have no explanation. I can say, "I need to do this. You have no idea how wonderful this is. Please give me some time alone with my bundt cake."

[laughter]

Susan: It was this bizarrely funny but deeply sad perverse moment. I suppose that was the first crack in my bubbled attempt to pretend things were normal. I realized how bad things had gotten.

[music]

Jad: After that, she says things only got worse.

Susan: It just became there was never anything to be happy about. He wasn't able to eat. He wasn't sure what the prognosis was, he wasn't sure if he was going to need a second surgery. It was just all bad.

Jad: She says Jon became really depressed.

Susan: He became very difficult to even-- Not even to cheer up but just to say, “Well, let's just not talk about it for now.” He was constantly expressing his unhappiness.

Robert: It was just dark all the time?

Susan: Very dark. It just became very hard to face.

Jad: So, she left.

Susan: Well, I had spring break, and my kids had spring break.

Jad: Susan took the kids to her parent's place in Indiana for a week.

Susan: I needed to take a break.

Jad: Not for good. Maybe the kind of break that means, "I'm not really sure what our future looks like-

Susan: I don't know how we're going to do this.

Jad: "-and I can't really figure that out while I'm with you."

Jon: I was alone.

Jad: Not entirely.

Jon: Well, I was on the food pump, and not doing well.

Jad: After a few days of moping around the house, Jon gets an idea.

Jon: What I needed to get myself out of this is, I need to return to a place of sanctuary for me. There was a restaurant not far from your studio here, called Chanterelle. It’s a French restaurant, and it was one of these very expensive capital-letter restaurants that my wife and I had always planned to go to if we had a special occasion. For years, I walked past this restaurant, and I would look in the window before getting onto the subway. I would see the plates of scallops coming out and the wine steward pouring red wine, and the handwritten menus on the tables and things like that. I thought, "If I can get to Chanterelle, and if I can look through the window, then I can heal myself. I'll have a reason to hope."

I got on the subway and it was past four o'clock and I was supposed to be home starting up the pump and feeding. I got off the subway, and I walked over to Chanterelle, and it's kind of a little dizzy and delirious. I get to the window, and the dining room is empty. There's dust on the floor, the wall panels have been stripped, the tables are bare, it's empty. It's a cave. Sometime in the intervening months or the preceding month, rather, Chanterelle has closed and I didn't know that.

Robert: You're killing me with this story.

Jon: I think to myself, "You've reached the end of the line, this is it. There's nowhere else to go." I walked towards the river, and I know that people throw themselves in and they do this, and it never made sense to me before. I wasn't ever ready to end things.

Robert: Were you having suicidal thoughts?

Jon: I was having really depressed thoughts and I don't know that I would have thrown myself in but it was the first time I was standing at the edge thinking about it. Thinking about, this is how these things happen. I got to the river, and I blacked out, collapsed on the sidewalk. I woke up and it was dark. I had scraped my chin and my elbows were bruised and I’d taken a hard fall. I got up, I started to walk around. I was on this buckled old sidewalk and I looked around and there are these federal era houses. There was a grill, a gas grill in one of the backyards that was going, somebody was cooking dinner and I could smell it. I could smell the smoke coming off the grill and I could smell it, it was pork chops. I was so delirious and so happy to be smelling food that I took it upon myself to finish cooking this guy's meal.

Jad: Wait, what? It's so eerie.

Jon: I lifted up the lid. I lifted up the lid and it looked like to me one side of the pork chops were cooked and they were ready to be flipped. I flipped them. I was so far gone that I thought, "Okay, four more minutes, and these babies are going to be ready to go." I didn't have a watch, so I started counting down four minutes in my head because I was going to get this stuff perfect. All of a sudden, the back door of this townhouse opens up and a guy walks out with an apron on and a cocktail in one hand and a seasoned shaker in the other. He looks at me. I look very borderline, I'm rail thin, I'm cut up from having fallen on the sidewalk, I've got a crazy expression in my eyes, I haven't shaved in a week. I look really, very unsavory. He sees me and I have no way of explaining myself other than to say, "They're just about done." I hand him the tools, I turn around and I walk away before he has the chance to call the police or anything like that.

Robert: How many years ago was this?

Jon: This was now three years ago.

Jad: What do you take away from that? Was that some turning point where you walk away from the grill and you're ready to fight the good fight or what?

Jon: That only happens in the movies and in fairy tales. What actually happened was, I got sick again. I had another infection, more bacteria, and I had to go back to the hospital. When I went back to the hospital this time, they said, "Okay, we can't even do the food pump anymore because you keep getting these infections and if the bacteria spreads to your bloodstream through the food pump, but then you'll be gone. We can't operate on you because you won't survive the surgery. All we have left is to try eating. The only thing that's left is to go back to food because you can't ingest it intravenously, we're afraid of infection, and we can't repair your gut surgically. The only way you can keep yourself alive is to try to use your gut again."

Robert: They start you on a round of, I don't know, baby food, Gerber?

Jon: I did start on the traditional applesauce, jello, and pudding, soft and easily digested foods.

Jad: Jon says it worked. His body was able to take the food.

Jon: I couldn't taste anything. It continued that way for another couple of months.

Jad: Did the food ever taste like food again?

Jon: Well, I was at the radiologist.

Robert: This is not the scene I was expecting.

Jon: I have a little ritual with this particular radiologist. He's on the Eastside. Whenever I get tests there, when I'm done with the test, I'm able to eat again and again, this is when you do test prep, you're going about 24 hours without eating. The thought of food becomes a celebration that you're going to have. There's a diner on Third Avenue and 84th Street, 85th Street that I always go to and I get the same meal every time. I sit at the counter and I get fried egg and bacon sandwich on whole-wheat toast.

I went there and I got the last seat at the counter. I ordered my usual. I chew into it and I realized that I've got embryonic flavors going on. I've got the start of the sensation of tasting and the start of flavors in my mouth. I could feel that great combination of the fried egg congealing with the crunchy bacon and the crunchy toast. I do the same mirror-- I've got a butter knife and I do the same mirror-knife examination at the counter. I can see that where before it was shiny and smooth as a porpoise, I've got little bristles. I've got little bumps on my tongue and I can taste this fantastic $3 sandwich.

Robert: Do you kiss the lady sitting next to you?

Jon: Well, I turn to the guy sitting next to me and I tell him, "This is the best damn thing I've ever eaten." In classic New York diner fashion, he looks at me, he looks up from his kindle, he looks at me and he says, "You should try the meatloaf."

[laughter]

I think, "This is it. I'm back baby, I'm back."

Speaker 5: Have a banana, Hannah. Have a salami, Tommy. [music]

Jad: Thanks, of course, to Jon Reiner whose book is called The Man Who Couldn't Eat. I'm Jad Abumrad.

Robert: I'm Robert Krulwich.

Jad: Thanks for listening.

[music]

Voicemail: Start of message.

Jon: This is Jon Reiner. Radio Lab is produced by Jad Abumrad. Jad Abumrad. Our staff includes Ellen Horne, Soren Wheeler, Pat Walters, Tim Howard, Brennan Pharrel, Dylan Keefe, Lynn Levy, and Sean Cole with help from Matt Kielty, Rachel James, Brennan MacMullen, and Raphaela Abedin. [chuckles] Special thanks to Christian [unintelligible 00:21:08] and the Rutgers University Animal Care program.

Speaker: Thanks, guys.

Speaker: Thanks. Bye.

Voicemail: End of message.

 

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