No One Believed Me: One Man’s Fight for a Crohn’s Diagnosis – and Recovery

The following transcript was generated electronically. Please let us know if you see any transcribing errors and we’ll get them corrected immediately. 

Bruce Kassover: Welcome to Life Without Leaks, a podcast by the National Association for Continence. NAFC is America’s leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians, and caregivers. All available at nafc.org. 

Welcome back to another episode of Life Without Leaks. I’m your host, Bruce Kassover, and joining us today is Sarah Jenkins, the Executive Director for the National Association for Continence. Welcome Sarah. 

Sarah Jenkins: Thanks, Bruce. It’s great to be here. 

Bruce Kassover: It really is because today we’re going to be speaking with a patient, John, who is going to share with us about his journey, his discovery, that the issues he was having were actually diagnosed as Crohn’s disease and how he’s learned to manage his condition and live a better life. So, John, welcome. Thank you for joining us today. 

John: Of course. Thank you. Thank you. 

Bruce Kassover: Excellent. Why don’t we begin by first giving us a little bit of background on yourself. Who are you outside of the purposes of this conversation? Who are you without worrying about your medical condition? 

John: Yeah, so I am a husband, a father. I’ve got two little girls, ages seven and five, who are absolutely adorable and they’re great. I’ve been in law enforcement for probably 19 plus years now, I’d have to check my resume to actually confirm. 10 of those years have been as a, a state correctional employee with parole services. And I currently work as a field training officer dealing with new staff coming out of the academy. I teach trauma. I teach trauma-informed care, first aid CPR, and I also am a competitive strongman who competes as a lightweight at the national level. 

Bruce Kassover: Well, that’s very cool. A competitive strongman. That’s gotta be pretty interesting. 

John: Yes. 

Bruce Kassover: So tell me, as a strongman, what are the sorts of things that you do? You lift and you push and you, what else do you do?

John: It’s a lot of, like, if you see the guys with the big stones picking up the stones the farmer’s walks, the guys carrying stuff like big sandbags, the log lifts, dead lifts. It, it’s kind of like, it’s just powerlifting, but with weird implements. So I’ve been competing since 2020. I did some powerlifting meets before that as well.

Bruce Kassover: Very cool. I’m impressed. I love hearing it. So tell me this, we’re here today because you have Crohn’s disease. But you didn’t always know you had Crohn’s disease. What happened early on that sort of made you think, I’m having a problem here? 

John: Oh man. So this was way back in ’04. I was in college at Bloomsburg University, which is like a small state run program in the middle of PA. At the time I was working as a rock and ice climbing guide that December I had traveled down to Mexico, December, 2003, traveled down to Mexico, spent around month climbing in there did Pico De Orizaba, which is the one of the largest, or the tallest mountain in the continental United States or continental North America. I don’t know exactly how to differentiate it, so came back from that and obviously I was in like really great shape, felt good, and I started to have really bad stomach pain.

And there’s really no reason for it. So probably around February ’04, it was almost a daily occurrence. I’d kind of wake up, do my thing, eat, and then just I’d slowly start getting like more and more intense pain, that would just radiate from my like abdomen up. And I was like, I’ll be honest, I was kind of like a dumb college student, so I did what any dumb college student would do and just kind of ignored it and like, “Whatever this is, I’ll deal with it, you know, some other times; it’ll go away,’ and it didn’t. It just kept getting worse and worse to the point where probably in April or May, the pain would get so bad that. I would end up throwing up from the pain. My roommates were just kind of like used to finding me passed out in the bathroom when they came home from classes or whatever, just ’cause I, that’s where I kind of lived from the, with it; I’d just curl up on the floor, just wait for the nausea and the pain to kind of dissipate or I’d vomit and it would feel better. So it was right around there that I kind of started to think, “Hey, there’s something not right with me.”

So went to local hospital, be honest, they were completely unhelpful. Was initially diagnosed with a stomach infection. They said I got Giardia or something like that when I was down in Mexico. So put on a whole bunch of antibiotics, was told, “Hey, you’re going to get better. Get out of here.” So did the round of antibiotics, got home. I started… semester ended. I went home. Still kept having these symptoms, this pain, as the summer progressed, it just got worse and worse. I actually went back to school to do a wilderness first responder course ended up having to leave that early ’cause it just got to the point where the pain was so bad, I couldn’t focus, I couldn’t think.

I was starting to lose weight at the time. I wasn’t like a big guy. I probably walked around, like I said, I was a climbing guide, so I walked around at 5’9″, probably around 140, 145 at the most. Started to lose weight ’cause the pain was so bad I wasn’t eating. That’s when I kind of was like this isn’t a stomach infection. Right before school started back up in the fall, I ended up having like such a bad bout of pain. Went to the hospital, local hospital was admitted and they kind of gave me like a, like a possible diagnosis of Crohn’s, but they weren’t sure. They said it kind of like matched up with what the symptoms I was having. Like I said, the intense pain, the vomiting, but nothing was showing up on any of the tests I had done.

I had like colonoscopy, endoscopy, putting cameras, we’re up, pretty much everywhere, doing all the contrast drinking, but nothing was like actually definitive. So spent a week in the hospital and they said it’s probably Crohn’s. They gave me like heavy doses of steroids, got out. I went back to school thinking, Hey, at least I’m on steroids.

Things will get better. Things just got worse. Instead, the vomiting became like an almost daily thing. I really started to lose weight then. Kind of started to do this whole song and dance where it would get so bad I’d end up going to the hospital. And keep in mind, this was 2004, middle of central PA. I was a young white guy, really skinny. Everyone just immediately saw me and assumed opiate addict. So that’s what I started to run into at the area hospitals there when I was trying to get help. So I’m coming in, I’m going to the hospital, to the emergency room saying, “Hey, I’ve got really bad stomach pain. Can you help me out?” And I just pretty much got treated like, like crap. No one believed me. At one point, my intestines completely stopped working. So Williamsburg Hospital said, “Hey, you’ve taken too many opiates. We’re going to keep you in for a week. Let the… on no medication and let your intestines start doing…”

And I was a young kid. I was not even 21 at the time. It was, I just had this kind of feeling like, “Oh, I just gotta do whatever the doctor said.” And I wasn’t on opiates. I had been given like, I had that mentality that I’ve gotta tell them everything I’ve ever been prescribed and all that. So way back, right when this started, one of my doctors gave me like a script for like 5 Vicodin, and I would put that down and they would immediately see that and be like, oh, opiate addict.

So I essentially just started getting like the runaround at all these places. Like I said, I spent the week at Bloomsburg Hospital so they could let my intestines restart. Obviously they didn’t restart, they just kicked me out after a week. Was going to other hospitals with this bad pain and, and it just felt like no one was listening.

At one point I was like, in such agony. And it turned out that my large and small intestine, the scar tissue had built up so much that they had actually separated completely. So I wasn’t even like getting anything down. Essentially, I would eat, go down and get to that point, the, where the break was, and then I’d end up vomiting it back up.

Like at one point I literally was in a hospital waiting room, just feeling awful, just miserable. I throw up like poop. I threw up shit and this nurse like yelled at me and called me a liar. Like when I’m just sitting there covered in it and said, you can’t do that. That’s not a thing that happens. And like I said, I just felt like no one was listening to me whatsoever.

Ended up having to drop out of college for that semester. ’cause it just got so bad. I was losing so much weight. Couldn’t go to class, couldn’t work. My doctor at home was kind of losing his mind ’cause he just, all he could do was just schedule all these tests and nothing was showing up. Because I would do the stuff where he’d drink the contrast and obviously it wouldn’t go past where the break in the intestine was, or they’d inject the contrast up the other way and it wouldn’t go past there.

So I wasn’t getting like any answers. And it was just, I mean, I just remember at one point just like crying in my doctor’s office. And my doctor was like, “he might actually be telling the truth about what’s going on.” So essentially then my mom’s cousin worked at University of Penn in the gastroenterology department. Set me up for a consult with a surgeon there who, she’s actually now the head of gastrointestinal surgery for UPenn.

So had a meeting went over like everything I’d done at the time, I was like 5’9″, a hundred pounds maybe. I looked awful. She said, we’ll do exploratory surgery in the abdomen and see what’s going on. Don’t really know what happened. I essentially, like, they put me under, she was going to like, make the incision, put the camera in, essentially.

She made the incision, took a look in, was like, oh, that’s not good. And I woke up and I was being admitted with emergency surgery scheduled the next day. Had the surgery, they took out the terminal ileum, which is the part that had like completely fallen apart. It was just a mass of scar tissue.

Had a temporary ostomy for six months because there had been some bile and what have you that kind of like spilled out and was damaged the large intestine a little bit. Got the ostomy and I was released from the hospital in, I think it was. I want to say it was like November 4th, I remember ’cause it was, I didn’t vote that year. But I was let out on that that day. And I was like 110 pounds when I left the hospital, I had like a PICC line for nutrition. And like I said, I had gone from being up here in terms of fitness. I was climbing, running, biking every day to, I could not go up a flight of stairs without taking a break halfway up when I had an ostomy.

So it was really, really bit of a rough, rough transition. But I mean, the bottom line was for me was after I’d gone through that for almost a full year, I had had an, I finally got an answer, Crohn’s disease. Had a doctor. Gastroenterologist that was prescribed me meds and I had a surgeon that like actually believed me and helped me out.

So it, like I said, it, it was a long, long process. And it, it took me a while to kind of not, I don’t, I don’t wanna say rectify what I went through, but kind of like understand how what I had gone through was affecting me negatively. It was very we don’t talk about how medical stuff in this country is traumatic.

It’s, and it is. I mean, even I, I teach trauma-informed care at work and they’ve got like, what are these types of traumas? And it’s all these things like war trauma, blah, blah, blah. And the one thing they don’t have is medical trauma. ’cause we don’t consider traumatic, you know, you go to the hospital, you get fixed and that’s it.

It really took me a long time to kind of be like, “Hey, it’s, A, traumatic, what I went through was in pain almost daily. I sometimes still get like a little rumble in my stomach and I’m like, “Oh God, it’s going to happen again.” That’s almost 20 years later. But just the frustration with no one believing me or just outright dismissing me as an addict, as someone who was just like med seeking was really just like a frustrating, frustrating thing.

But yeah, once I had the, like the diagnosis, got out I got out of the, like I said, I got out of the hospital in October. I’m kind of a bit insane. By January I was ice climbing in New Hampshire, ’cause I can’t help but try to always keep moving and, yeah, here I am now 20 years later. That’s kind of my story. 

Bruce Kassover: Holy moly. That’s a remarkable story. There really is this whole like sense of narrative of just how much you went through. Normally when we talk to people, they talk about, you know, “I was experiencing these symptoms and I went to my doctor and they said, “It’s this, or they ran some tests, it’s this, and then we got treatment.” And that itself can be traumatic because, you know, anything that deals with digestion, you know, people are uncomfortable talking about, but you had on top of that, you had this whole problem of not being believed and people dismissing you because, you know, you’re at that point, you said you were like a hundred pounds and you were talking about medication, so they said, “Oh, he’s, he’s a druggie. That’s what he’s…” 

John: Yeah. 

Bruce Kassover: That must have been, I could imagine equally parts frustrating, infuriating, and depressing also.

John: Yeah. And, and it’s one of those things too where I don’t think I like really understood what I had gone through until later. Especially since, you know, I, I used to have that mindset, like kind of doctors and all that, they know exactly what they’re doing. They, they will solve it, they’ll fix it. And I think House was on at the time, so I’d watch House and be like, why can’t someone like, figure out what’s going on ?

And kind of like realizing that the truth is that’s not the case. A, you might not get believed at all, but, B, like they’re throwing diagnostic tests at you until something sticks or they have to cut you open and find out. So it really was kind of difficult for me to, to kind of bring those two parts together.

Like, hey, I’m allowed to say that people messed up with how this was handled. ‘Cause even that, like it took me a long time to be able to kind of say that. ’cause I still, I don’t know if, I don’t wanna say it was like bad self-esteem on my part or whatever, but I, I have always, I like to believe that everyone was acting like in my best interest. But the truth is I was just getting dismissed and thrown out of ERs for, you know showing up with stomach pain. 

Bruce Kassover: You know, it sounds to me like part of the problem may also have been just simply the fact that you were young. You know, you’re a college kid. 

John: Yeah. 

Bruce Kassover: And when you’re a college kid, you know, like when you start to get to be, you know, an older, you know, functioning, adult-adult, you have a doctor. And you go to your doctor and you, you have appointments. But like you said, as a college kid, you know, when you’re having, like, you’re passed out for something, you go to the hospital. Yeah. And so you didn’t have that regular touch point either, and I’m wondering, do you think that contributed to part of your challenges?

John: Oh, absolutely. I 100% agree with that. And even now, like I still find it hard to advocate for myself as a patient. Like I still, I still like, in the back of my mind, I’m always like, oh, you gotta just listen. You can’t, you can’t speak up like up, and you have to advocate for yourself.

It’s like, I advocate for my kids, I advocate. For others, but it was always like that, making that connection between like, you can, you can actually advocate for yourself too, you know? So took a long time to realize that. 

Bruce Kassover: I’m wondering if part of it also is that you’re a guy, and I think the guys are not necessarily … I mean, you were really into fitness, but fitness and health are sort of two different things in some sense, and I think guys are awful in many cases at really, you know, being proactive with their health.

John: Yeah. And I mean, it, it was one of those things too, like I really struggled with self-image with that. To go from where I was fitness wise to where I ended up like was really, really hard. And I, I kind of, I don’t know, I, this is going to be kind of a weird story and I apologize in advance, but one of the hardest things for me was just kind of before I got the diagnosis and after the surgery and all that, like obviously I wasn’t, still wasn’t doing well, still kind of struggling to get back to where I was. Everyone just treated me like I was just this fragile person, like everywhere I went it was like, “Hey, how you doing? Oh man.” Like, the number of people that think it’s okay to, like, walk up to someone and go like, “Oh man, you look awful. You okay?” is insane. Like, it’s, it’s so frustrating and I just always felt like I wasn’t I just felt… it just made me feel kind of broken. It made me feel like weak and small almost. And, and it wasn’t until I kind of got back to school back to Bloomsburg and I kind of hooked back up with the climbing group I was with that I actually started to kind of recover because those with a group of guys and girls that weren’t treating me like that.

Like I said, this is a really silly story, but the first time I actually felt good about myself afterwards was we were having like a Thanksgiving party with the guiding program. So it was all of us, and every year we would do like a pullup contest and you wait, it would work as you go and you do one pullup, everyone does one pullup, and then everyone does two pull-ups, and you kind of pyramid up until you can’t do anymore.

Then we decided as a joke that if you failed, you would just get slapped in the face with a piece of pizza. So, you know, I go, I do one pull up. That’s all I could do. Next time it’s my turn. I go to do two. I don’t even get one up, fall down and boom, I get slapped in the face with a pizza, piece of pizza. And that was the first time in a year I felt like I was being treated normally. Like I wasn’t being treated like this guy that’s all broken and weak or someone that was, went through something and couldn’t handle anything else like it was, I was actually being treated the way I wanted to be treated: like one of them as a person, as it, it was the first time like I felt like I wasn’t being treated like I was sick. And honestly that, that really was one of the hardest parts with the diagnosis was just everyone feeling sorry for you. Everyone asking how, like, how you doing? Like, “Oh man, you look awful.” Like it. It was rough. 

Bruce Kassover: So I got a question for you… 

John: Mm-hmm? 

Bruce Kassover: Pepperoni? 

John: It was actually pepperoni, so…

Bruce Kassover: Oh, that makes it so much worse. So tell me this, you’re rushed into surgery essentially. How was the recovery like? 

John: I mean, it wasn’t great. Like even the rush to surgery was like, I remember I was supposed to, it was scheduled for like one o’clock in the afternoon or whatever.

So, you know, my parents were going to come, I was going to say goodbye. And I remember like being woken up at like six in the morning and being like, “Hey, you’re going to go to surgery now.” And I just had like a meltdown, like I was sobbing uncontrollably, like calling for my mom, like, what’s going on? So afterwards really was like a lot of trying to get recover from that.

The way I did it was, I, I just never I didn’t stop moving. I remember like the day after the surgery, I would get up and I had like all these tubes I had, like the PICC line, the IV, the catheter, like all this stuff. And I’d just walk and I, I think I could do like half a lap. So I’d do half a lap and I’d sit down and recover for like 10, 15 minutes, then walk back to my, my room.

And I just kept trying to do that and do more and more every day. When I got home, couldn’t go up a flight of stairs. Like I would get halfway up and just have to sit down. ’cause I was so tired. So every day try to go up one more, one more step. One more step. Got to school, ’cause I was just going to go back to where I was living with my roommates. I couldn’t even make the quarter mile walk to campus. Like, I remember I got there and I was like, all right, I’m going to go and hook up with these climbing guys, see them, see my friends, and all that. I got my stuff started walking and got like a hundred yards and I had to sit down and call someone to come pick me up, to take me to the, take me to school.

So it was, it was a really slow, slow process, but it really was just trying every day to do something, something more, try to keep myself occupied. Couple guys when I was in the hospital stopped by and they, like I said, I was a climbing guide at the time, so they. I came by and they gave me like a couple pieces of rope and I would just lie there in the hospital bed and just like practice tying knots, like the climbing knots.

So I got really good at that. And it, like I said, it really was just a lot of trying to do more every day. So if one day I could only go up 12 steps, be like, okay, the next step I’m going to go up 13 steps without stopping. And it was, it was a process. A very, very slow process to get, to get back to, back to where I was.

But it was, like, I hate, I really don’t like to say like, “Oh, it taught me to be stronger” or whatever. ’cause that’s bullshit. Like, I, I don’t need to get horrifically sick to prove that I’m strong. But it was it was something that was like, okay. It didn’t make me strong, but it was like, it gave me confidence that I knew I could keep going if I got sick again.

Bruce Kassover: Well, I sort of get the feeling, based on how you were already a guy who was really into things like the climbing and the fitness that you probably already had a mentality like, you know, “One more sec…” 

John: yeah… 

Bruce Kassover: …”one more…” you know, that type of thing.

John: Even my surgeon, she kind of said, I don’t mean, hopefully no one else ever gets told this, but my surgeon said like, essentially because my intestines had separated, I wasn’t actually getting any nutrition for a while. Like I just slowly wasted away. She essentially said I was kind of too dumb to die almost. So I really took that as a compliment. I’ll be honest. I was like, “Yes!” 

Bruce Kassover: That’s quite a slogan. I like that one. But tell me this, so you have your surgery, you had the temporary ostomy. And that had to come out, you said that came out after about six months. How was the recovery in terms of your digestive symptoms and did you find that it was sort of pretty immediate… 

John: Absolutely fine after… so with the ostomy, I had a couple issues just because I am an idiot. And would go, like climbing and all that and, you know, take a, take a nice fall and squeeze some stuff outta me. But honestly, digestive wise, I was absolutely fine. Never had any problems. Ostomy ended up getting reversed six months later. I, for the most part, have. Been pretty okay since, since then, had to go on some of like anti-immune system drugs a few times, but overall I’ve haven’t really had any symptoms or return of symptoms. 

Bruce Kassover: That’s amazing. And did you have to change your diet permanently as well? 

John: Honestly, no. I… I tend to avoid like high fat stuff. And I’m sure if my wife heard me say that she’d be yelling, that I’m a liar. But honestly, like I, I take some medication if I’m going to eat something like really unhealthy, but for the most part I just try to eat clean, and as they say, and avoid alcohol and that sort of stuff.

Sarah Jenkins: I’d love to hear just a little bit more about your ongoing day-to-day management and what you’re doing for that. 

John: Yeah. I mean, honestly it’s really nothing special. See gastro once a year, the colonoscopies and all that. Like I said, I really haven’t had too many issues since then. Was on Pentasa for a bit, but then taken off. And like I said, I’ve, I’ve had to go on some immunosuppressants a few times, but really for the most part it’s, it’s just kind of avoiding stuff that like really is bad. Popcorn, that sort of thing. Sometimes high, like if I eat a lot of roughage, that that doesn’t turn out too good. But it’s really the high, high fat stuff that I tend to avoid ’cause it kind of messes me up. 

Sarah Jenkins: Well, that makes sense. 

John: No, I, I am super lucky. My gastro said several times that I’ve got one of the weirdest cases of Crohn’s she’s ever seen, because I think the resurgence rate for the type of surgery I had after five years was like 95%.

And I, I wasn’t the case. She isn’t, I think she wrote a paper about it. Like she mentioned me in a paper once. She talked about years ago. Because I got into corrections, like right after college I’d been planning on doing the climbing thing or joining the military. But the Crohn’s kind of gotten that, in the way of that.

So she always kind of thought that. Maybe being in environments where it’s not the cleanest kind of gave my immune system something else to fight. For the most part, I’d never got sick until I had kids, and then I’ve been sick for the past seven years. But yeah, for, like I said, I, I’ve got like a really weird case according to my, according to my doctor. I don’t know if that’s a good thing or a bad thing. 

Sarah Jenkins: Well, it sounds like it’s good for you for right now.

John: yeah. 

Sarah Jenkins: Well that’s great and you know, I’m sure this has had a huge impact on just your mental health going through all of that hassle of diagnosis and not being believed and not even knowing what was wrong. Can you describe that a little bit for us? 

John: Yeah, I mean, it, that’s really one of those things that it, it took me a while to really understand how it affected me. ‘Cause I, I definitely had that mentality, like early on. I think that was like really defense mechanism. “Okay, what I went through isn’t really traumatic, you know, it made me stronger. Here I am, like I went through this. I can get through anything.” And I think as time went on, I realized how dumb that mentality is like. This didn’t make me any stronger. It just made me miserable for a year. No one believed me. It, it, I’ve had every medical thing you could imagine done to me. I’ve had so many breakdowns and, and really kind of understanding how negatively it affected me.

It took a long time for me to be okay with that. And to say, “Hey, what I went through wasn’t actually that great.” Like you, I went through something really bad. It really affected me negatively. It, it took a while for me to get there. And, and I think it’s really because, and like I said, we, we don’t take medical trauma seriously at all in this country.

It’s just we, we don’t like, you know. You talk to someone going down the street, you see someone that’s pregnant, you start talking to them. What do people do? Everyone has to share the most traumatic birth stories imaginable with a pregnant woman. Like, “Oh yeah, you’re pregnant. Yeah, my sister went through this, she did this and this. You’re in bed rest for nine months,” like all this stuff. And it’s just insane to me that we kind of treat medical stuff the way we treat it as an afterthought. We don’t talk about the trauma involved. We don’t talk about how how scary it is. Like, it, it was scary. It was scary. Like wasting away feeling weaker and weaker every day, not knowing what’s going on. It, it’s scary. I mean, like I said, I was like, I’ve woken up and it’s like, you’re going into surgery right now, and I’m just sobbing, like crying because I, I don’t know. And I really think, I mean, this is again going to be kind of silly, the movie 50/50 with Joseph Gordon Levitt, Seth Rogan, there’s a scene in it where he’s about to have surgery. And he just like breaks down and is calling for his mom, and I was watching that in theaters and I just like broke down myself. I think that’s when I kind of started to realize, hey, this like really negatively affected you. What are you going to do about it? 

Sarah Jenkins: So tell us how you did something about it. What did you do? 

John: Therapy is what I did about it? Yeah. I’m a huge proponent of it. I got a therapist really kind of talked about, like the medical stuff I’d gone through was able to kind of rectify that, hey, this wasn’t okay. What I’d gone through this wasn’t some. Great journey that made me stronger. It sucked. It was really negative. It was really hard and I didn’t get through it because of you know, some magical thing out there. I, I got through it just because I just lasted long enough to finally get to someone that believed me and did exploratory surgery. So that’s, and it, it really was tough to, to kind of, to get to that point where I can say that.

Bruce Kassover: So do you feel like you’re in a better place today? 

John: Oh, 100%. 100%. Yeah. It’s, it’s been like a journey. I mean, there’s been other stuff I’ve had to deal with in, in therapy career wise. But yeah, no, it’s like overall just I feel good.

Like I feel good about. I mean, I don’t wanna say I feel good about what I went through, but like I kind of understand what I went through more. I kind of understand the feelings I have about what I went through a lot more. And it’s, and like I said, I kind of got outta that mentality of like, “Oh, it made me stronger.” Like you were, I was fine before. I could’ve been plenty strong without going through this.

Bruce Kassover: So now you’ve been through an enormous amount and I sort of have a feeling like I could guess what your answer might be, but if you are talking with somebody who’s saying, you know what, I’m sort of having some of these problems also…

John: Yeah… 

Bruce Kassover: …I know that your case is sort of unique, but you know, I’m sure there’s some similarities.

John: Yeah.

Bruce Kassover: What would you recommend to them? 

John: That’s a tough one. I don’t know if I’d recommend anything straight away or if I would just be there to listen. I mean, that was really the thing. Like there’s so many points during this whole thing where I, I just really felt like no one listened. And, you know, I might have had doctor’s appointments scheduled and whatever, but… everyone, it was just whether it was like people at the hospital or or people at home, it was always like, “Oh, you’ll get through this. You know, God never gives you more than he can handle.” Like that sort of thing. No one ever like took the term time to like ask me like, “How are you doing?” And I think it’s because it’s really tough to kind of ask that question and mean it because you might not like the answer. So I think people kind of tend to wanna avoid asking how and just say, “Oh, you’ll be fine. You know, you just gotta do this. You’ve got that doctor’s appointment next week. Go to that doctor’s appointment, they’ll still solve everything, they’ll help you out.”

And so really, if someone was kind of going through what I went through, the first thing I would do is just honestly, let ’em, let ’em speak, let ’em get stuff out. Let them feel anger, frustration, sadness. This, it was sadness. I, I gave up, like I said, I was looking to go into the military after this, or honestly, if that hadn’t worked out, then I didn’t get diagnosed with Crohn’s, I’d probably be some bum living in Yosemite in a van climbing every day. Like, so there, there is a lot of sadness about kind of what was taken from me or, or what, what I didn’t end up doing. And I, I really think, I really think people need to be heard and people need to have an outlet to, to get those negative emotions and get those feelings out.

Sarah Jenkins: I think unfortunately a lot of people who are diagnosed with IBD, you know, it takes a really long time to receive that diagnosis and sometimes they aren’t believed. ‘Cause so many, there are so many different symptoms that people could…

John: Like even, even before this before I got the diagnosis, I would get fistulas and like abscesses that need to be drained in the rectal area. And no one ever like made the connection between that and Crohn’s, of course. But yeah, like the symptoms for Crohn’s are pretty embarrassing.

Like, yeah, I’ve got like a giant pimple on my butt that needs to get drained. Let’s talk about it. Like it’s really kind of embarrassing disease. Or like, oh, I, I look at this type of food and I immediately get diarrhea. I poop my pants. Like it’s, it’s. It is, it’s tough. Like it’s a, it’s a tough disease and like I said, I, I don’t think, I don’t think it’s easy for people that haven’t been through it or don’t have it to understand, and the people that are going through it… and like I said, it’s just kind of the way that we deal with medical stuff in this country. We, we just, people don’t want to hear about what you’re going through, don’t want to hear about how you’re actually doing. It’s kind of easier just to do the, the simple, like, “Oh, you’ll, you’re going to do great. Like, you’re doing fine. Don’t worry.” 

Sarah Jenkins: Yeah. Well, for those people who are going through this now and maybe aren’t being believed or are not sure is going on with them. Do you have advice for how they can approach their healthcare team or how they can… 

John: You have to, I mean, advocate for yourself. That’s, if there’s one thing I could go back and like do through that is, is really advocate for myself. Like kind of push back against what I was getting told was wrong with me or push back against the narrative that I was just a drug seeker. ‘Cause, ’cause I didn’t, I never advocated for myself and it’s hard, it’s easy for me to say look back 20 plus years as an adult now and say to my younger self like, “Hey, you’ve gotta stand up for yourself.” It’s easy for me to say that in this position, but I really understand that it’s not and like I said, it’s, it’s going to be so hard and you’re going to feel like it’s not working and you’re going to feel lost. But if you advocate for yourself and you really push for your medical team to take you seriously, then diagnosis is, is possible.

I hope at least. What I do now. Kind of spent almost 20 years in law enforcement. I’ve got two great kids, a wife, great career competing in the strong man. Like I at least hope that someone might see this and be like, “Hey, this diagnosis sucks, but it’s not the end of the world.” 

Bruce Kassover: There’s a great sentiment and you know, I hope that other people really sort of take heart knowing that, look, you can go from literally being passed out in the bathroom to, you know, in a much better place if you not just seek help, but connect with people who really know what they’re doing and can really give you treatments that make a difference. So that’s awesome to hear. 

John: Yeah. And like I said, having, having like a friend group or whatever that doesn’t treat you like a sickly human being… that was like the biggest thing when it came to that, that’s when I really started to recover, like having people that, that pushed me, that didn’t treat me like I was a, like a wilted flower or whatever… that, and I, I see that so often, like the fitness industry and I’m, I’m, there’s been like a real push that strength training is for like everyone, regardless of age, fitness level, and it’s just I don’t wanna say that, like you’re stronger than you think, but like, when it comes to being able to like recover, having people that are going to push you, having people that aren’t going to let you whine and feel sorry about yourself… it, it really goes, goes a long way. And I mean, that’s a fine line. You don’t want the, like the the toxic positivity. I really think that’s can be negative. But I really just having people that can go like, you know. Feel your feelings, get it out, then suck it up and let’s, let’s go, go do this. 

Bruce Kassover: As we do a lot of these patient interviews, one thing we hear time and again is just how important community is that if you can build a community and again, you will thrive in a community in ways that you can’t on your own. So that’s great. Excellent. John, thank you so much for your very, very distinct and unique story because it’s really fascinating. And man, I’m really happy to hear that you’re in such a better place. It’s, it’s really great. 

John: Of course, of course.

Sarah Jenkins: The only other question that I have is , where did you go for information? 

John: That was an, I could talk about that… so at the time, that’s kinda like the start of the internet and all that. There is you, one of the really kind of frustrating things with it was at the time you go to like Google or whatever the search bar was and you type in Crohn’s disease. All you saw was these horror stories.

Literally just everything that I saw online about Crohn’s at the time was negative. It was, “This happened to me, this happened to me. I’m on every single drug imaginable. They’ve taken all my in inte…” it was, it was, honestly, I, I stopped looking pretty fast.

And it also, it was one of those things too, it took me a little while to realize like, no one wakes up in the morning and thinks, “Hey, my Crohn’s disease has gone great. I’m going to have a great day. Let me post about it real fast.”

And I, I, I really caution people to, to kind of watch out what you kind of take in online just because so much of it is, is negative. If you go to like the Crohn’s Reddit, it’s just horror story after horror story and if I ever see someone like type come in like, “Hey, I just got diagnosed, I’m scared, what do I do?”

The first thing I recommend is get offline, like stop reading horror stories. And like I said that’s something I had to do back then because everything I was seeing online was horror story after horror story. And it really, it really had like a pretty negative impact on me for a little bit until I got got offline.

Because I remember there’s like a couple months in 2005, like early 2005 where I, I was just kind of a mess reading those stories and thinking it was like the end and finally got off. Like I literally stopped using my computer for anything but schoolwork. I wouldn’t let myself go on and, and look up anything about Crohn’s ’cause it was just so, like I said, so, so negative… and there’s a lot of really fake, I mean the, all the nonsense cures and stuff.

Remember the big one was like horse ligament, DSMO? There’s like 20 websites saying if you have Crohn’s disease, get DSMO, rub it on yourself, gets the free radicals outta your body. So I, I think the Internet’s gotten a little better since then, but that the horror stories and the DSMO or the big things I remember from the early internet and Crohn’s disease… 

Bruce Kassover: Don’t be so sure. I’m sure there’s plenty of other crazy things that are still, that are out there also. 

John: Yeah, I, I’m sure, try not to think about it.

Bruce Kassover: At the same time, Crohn’s disease and a lot of these diseases are finally starting to get some attention. I mean, you see commercials about it. So with any luck, this, this interview will help contribute to that, you know, change where people are comfortable talking about it. Yeah. That’s great. 

John: Yeah. And like I said, it’s, it’s one of those things I, I hope it does, and it, it. And like I said, it’s a, it’s a scary, scary disease without having to go online and, and see all this, yeah. I, I hope it, hope it does help, help some people. 

Bruce Kassover: Well, it sounds like in particular, yours was especially scary. I mean, it sounds like you were like close to sepsis or something… 

John: Yeah. I, I should have, I mean, like I said, my doctor said I was too dumb to die. I, I really should have. She said I probably should have died like two, three weeks before even having the exploratory surgery, it was so bad. But I don’t know, my mentality, like I said, it’s, I have trouble just stopping, so I just, you know, would just… 

Bruce Kassover: Yeah.

John: What else am I going to do? I’m just going to keep going. 

Bruce Kassover: You know, it probably helped that you started from a place of fitness to begin with as well. 

John: Yeah. Oh, if I didn’t have that weight to lose, like I would’ve been like in a really bad position. 

Bruce Kassover: Well, that’s good news for me because that means that I can probably come with that with any disease and I’ll be fine for like years. Well again, John, I really do appreciate it. It looks like we just ran a few minutes over, so I apologize for the extra time, but no, thank you so much. 

Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin McLeod. More information about NAFC is available online at nafc.org.