Learning to Live and Thrive with Disease, with Jon Dannemiller

In 1984, Jon’s life took an unexpected turn when the first symptoms of ulcerative colitis started to appear. In addition to the health hurdles, the disease brought with it various other social, athletic and just practical life challenges. Treatment options at that time were limited to steroids which brought such side effects as weight gain and trouble sleeping. Diet choices and awareness of the nearest restroom became part of the day. Jon initially kept his diagnosis private and he just tried his best to live normally. With newer medications, he learned how to manage his condition and obtained his degree from the University of Notre Dame in 1991. But shortly after college, it was recommended that his colon be removed, again the best option at that time for what he was facing. The surgery brought some relief and Jon continued to make the lifestyle adjustments with grace. Over the last few decades, he has built a successful career, has 3 kids, and makes time to help others who are facing similar medical obstacles. Through his strong faith, family support, and resilience, he has truly created an amazing life and found more joy than ever. He is engaged to Leesa who he will wed later in 2023 and is excited about the path ahead. Jon is currently a Sales Executive for Oswald Companies in Cincinnati and is a trusted resource for his clients in developing risk mitigation strategies. To learn more about Jon’s story, listen here or watch here.

Transcript

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Well, hello with gratitude Matt listeners, my name is Matt Murray and I'm the host for the With Gratitude Matt Show. Our goal with the With Gratitude Matt Show is to inspire our eliciting audience to practice gratitude regardless of how powerful their storm is. We've learned that the practice of gratitude works much like a muscle. The more you use it, the stronger it becomes. I'm so delighted to have today's guest on the show. Today's guest is John Danna Miller, a high school classmate of mine. When we were juniors in high school, I did not realize that John was diagnosed with ulcerative colitis. He brought that to my attention recently when we reconnected. John has three beautiful children and he is planning his wedding to Lisa within the next year. John is a graduate of Notre Dame University in South Bend, Indiana, and I'm so delighted to welcome John to the show. John, welcome to the show. Thanks, Matt. Glad to be here. John, I mentioned, you know, what transpired in our junior year of high school. I think it's important to maybe go back to what your life was like pre diagnosis and what your family experience looked like leading up to this. Sure. So prior to getting sick, I mean, I would just consider myself have been a pretty normal kid. And I was the oldest of five. The first one to go to Saint X was healthy and hardly ever got sick. And in that and I was not the terrorist that great of an athlete because if you've seen me, I'm not that big of a guy. But I did wrestle at Saint X and did pretty well my sophomore year and I just started as a freshman. So from an overall health standpoint, I think I was pretty good. But the summer of my after sophomore year, I started going to the bathroom more frequently and then having some blood and and and at the point when school started and I was so excited to I mean, that's like a pretty cool time. Your drive in, you're going out with girls, you're going to parties. And so I was pretty excited and I don't I can't remember how long it lasted, maybe a week. And I just I just couldn't go to school. I mean, I was four. They were going to be a little bit if it's okay, be a little bit off color here. And that I mean, I was shitting my pants and I couldn't I couldn't, you know, keep it from happening. So now that gives you a little bit of background as to what it was like before it took a little bit of time to to get diagnosed because, you know, back then you didn't necessarily go to a specialist right away. And so we're going to the family doctor and the GP and and I still kind of remember this. He he did a colonoscopy and the doctor is colorblind and he's like holding the scope up for my dad to look at. And he's like, Can you help me? Tell me what this looks like because I'm colorblind. Oh, so in and I won't go into the gory details of what that was like, but that was the start of of, you know, from a diagnosis standpoint. And so once they figured out that it was in all likelihood ulcerative colitis because there's some other gastrointestinal disease as Crohn's disease, just, you know, irritable bowel syndrome, there's some upper GI things that you can have going on. But once they were able to kind of figure that out, I started going on to medication and the only medication that really worked. And things are a lot different today. If this had happened today, it'd be a whole different story. But the only medication that worked was steroids. So and not the kind of steroids the beefy up like the the weightlifters do. But these are not anabolic but catabolic steroids where they would actually could potentially have the ability to break down muscle tissue. And so I think the other problem that you have with it and if anyone's been on in before, you tend to balloon up. So I went from being pretty emaciated, thin. You know, you have then in the face to getting a moon face and and having I mean, I've got it's funny, it's every once in a while Lisa would be like, what's that? And like, those are stretch marks because I just put on weight so fast and that in with being on steroids, your body just doesn't heal like it would otherwise. So I've got permanent, permanent reminders. Jen, Question along this, I remember when you first brought this to my attention we were just talking about how things happened chronologically, if I remember correctly. You're talking about putting on quite a bit of weight because of the steroids. But am I right in that you early at some point you lost a bunch of weight? Oh, yeah. Because you were able to keep things down and yeah, what did this happen was that prior to the steroids that you went on to? Yeah. So think of it as the summer when I started to get sick, I lost weight, which was interesting because when I wrestled my sophomore year, I wrestled at No. One, two, eight, I guess one if five one, two, eight and. And was that dry or wet? And that was after after sweating out a lot. But I remember Dick Murphy, the wrestling coach, came up to me and asked me if I could drop weight the following year and wrestle at 98 or one, two, three and four. And so through that summer I'm like, Oh, this should be no problem and losing all this weight. But then, you know, I probably went from £100 to £140. Wow. Yeah. So and I have to imagine, you know, I mentioned we met in high school. I don't remember recall this at all. And I was so grateful that you brought it to my attention, because I think one of the things that I talk about all the time is just being present to those you're with. And I feel awfully bad that I was just not aware of the pain that you were going through as a sophomore. And I guess question I have for you, when you talk about, you know, putting on that weight and ballooning up, because I've I've seen and witnessed what steroids can do to people, I would have to believe that that brought probably a little anxiety towards yourself with respect to showing up to school. And many people like looking like you totally transformed your body for some reason or another. And probably not understanding what really happened. Was that a difficult for you to show up? Yeah, I mean, I don't recall like like being scarred by some big things people would have said at school and in honestly, I think I'm not saying the situation would have been different in a different school. But, you know, as you know, at the the culture in Saint X is pretty cool and the guys there tend to have each other's backs. But but I think more socially I mean, I remember being super awkward with girls and, you know, trying to date girls and, you know, because it wasn't like I gained the £40 and then it didn't it didn't change it. I mean, because the way the way the treatment would work is they would put you on steroids until you would go into what they thought was remission and then they would wean you off the steroids, in which case, when that happens, you're losing weight again. And then I would have a flare up and then back on steroids and ballooned back up again. And that that went on for another six, six years. So not and not just not just high school either. So you know it in and I honestly wasn't it wasn't like I was telling everybody. I mean there may have been a handful of people that knew at school what was going on. I mean, the the administration did, but it wasn't like everybody, you know, you're why I've been out and yeah. So and I think I think it just takes time to be able to and just maturity to be able to to know that at the end of the day, you know, you're not the only person that stuff like this happens to and that there's there's a grace in a way of of being able to tell your story to other people. I look at it that way. So that's beautiful. Yeah. I think I mentioned to you when we connected on this, I have a friend of mine up here in Buffalo, Brian, who was diagnosed with the with same sickness in 2011 and I was recently talking to him knowing that we were going to connect. And I know that you're grateful for a lot of the advancements that have transpired as it relates to this to today and some of it even standard protocol, probably different today than they were back in 85. But he was on a drug called ENTYVIO. Does that name ring a bell to you by chance? It does. But you know what? If you're if you listen to any of the news casts, there's all kinds of drugs out there today. I mean, I remember even when just to kind of go through the story a little bit more, you know, I struggled back and forth with things for for, you know, many years. And when I got out of school, I was having issues with being able to work. And at that point, my gastroenterologist in Cincinnati told me that I needed to have my colon removed and sent me up to the Cleveland Clinic and had my entire large intestine removed. And at that time, there wasn't there wasn't any other options. The shortly thereafter, we have a family cousin who is also a gastroenterologist, and we were at a family reunion and I was telling him what was going on. And I mean, literally the drugs, there's a there's a drug, Remicade, that came out like maybe like a year later. Wow. That, you know, who knows? I don't I don't really look at what happened to me as like a bad thing. I look at it is I don't know. I just I just look at it is okay, yeah, that happened. But I've moved on and I've had a very normal life. I've been able to do a lot of cool stuff and I wouldn't trade any of it for. I mean, you can't. It's not like you can just take parts of your life and say, Let's trade these in. That's beautiful, that you look at it that way. And I think it's it's remarkable. You know, Brian did say where I connected with them. He mentioned that he was on this in TiVo, but he said the greatest medication was prayer. And I know that you've you've leaned into that quite a bit. How did prayer help you through your most difficult times? Well, I think that when especially at that age, it's probably logical for people to have the feeling of, you know, why me? Why? Why? I mean, this this sucks. And, you know, I don't get to do the stuff that I wanted to be able to do. And I think you have to you really just have to take a step back and say, okay, you know, maybe, you know, God has a plan for all of us and you really do need to have faith in that, that it's, you know, it's going to work out based upon he how he wants it to work out. And if you have that faith that that's what's going to happen, I think, you know, at the end of the day, that's what it happens. So that all sounds it's not surprising for me to hear that. But but if you back up to when you're 19, 20 years old, 21 years old, and you're in the thick of this right now and you're going through that, I have to believe that your family, your parents, instilled in you the importance of prayer because that doesn't just happen, you know, without good foundation prior to that. Oh, for sure. I mean, and this is, you know, you've said at the beginning of the show that that gratitude is kind of like a muscle It had. Absolutely is. And if you I've I've since found in and I think it's just a combination of your of all the things that happened to you that when you're when you're in a situation where you think things just aren't going your way, if you start to think about all of the things that you should be grateful for or thankful for, it puts it all in in the perspective it should be in, in that whatever it is you're dealing with right now isn't that big of a deal. You've got a lot of stuff going on in your life that's really, really great and focus on that and it allows you to get through those tough times, too. But for my my parents, though, I mean, they were especially my mom, incredibly prayerful. I mean, I don't remember ever having dinner. We didn't say grace. And it wasn't just grace, like less so in these I guess it was afterwards, we would be talking about things that we're thankful for. We want to pray for things going on in our lives. And then that generated family discussion, too, which is, I don't know, probably doesn't happen as often now as they used to. But no, they were they were extremely faithful people. They got me involved in a lot of stuff through through the parish that we were in at the time. I got involved in them Archdiocese Youth Commission through high school and and then in college was involved in stuff there too. And it just it's continued. I mean, every parish and I've been a member of, I just feel like you've got to give back. But in order for the whole thing to work. That's awesome to hear the background and the foundation that your parents built for you with respect to faith. And that is one of the things that I'm most grateful for with respect to my parents as well. And I want to move because, you know, we this all popped up when you were a junior in high schools, would talk about that. You had the good fortune of going to Notre Dame in South Bend, Indiana. Your sickness, It didn't end in Cincinnati. It continued while you were at Notre Dame as well. And maybe speak to what happened when you were a freshman in college there. Yeah, so this is kind of a part of my background that would a lot of people would just call being stupid. But I got connected to a gastroenterologist in South Bend and that I was monitoring my health, etc. And I had a, um, a colonoscopy. So I would have regular colonoscopy. So I started my colon. At this point, I would have regular colonoscopy, who said they would just check things, make sure everything's okay and went out to a party the night before the scheduled colonoscopy. And I you know, sometimes drink at parties in college. And so I had had a few to drink and I was actually extremely hung over the next morning going to this this colonoscopy. And I mean, honestly, I could it could have died because the the doctors thinking that green from the fact that I'm going to go under because they put you under anesthesia. So he's thinking I'm green from that not knowing that I'm hung over and then puts the anesthesia on me. Luckily, I was able to get up and liquid up later. But, um, but yes, the things like that. There was another time where I went to a dance. So they've got these crazy screw your roommate dances at Notre Dame and went to a dance and was having this great time. And I literally walking the girl back to where she started her dorm or whatever, and and I'm getting ready to kiss her. Or maybe I started to kiss her and all of a sudden. Mike. Oh, crap. And I, I was like, Cut it off. It's mid kiss and said, Got to go. That must have been hell. Just very nervous. It definitely was. But the, the, the ironic say or liner irony, the funnier part now anyway, is looking back at the time it wasn't funny. Every single time that girl looked at me later, she's like, What is wrong with you now? I appreciate you sharing that with us. You know, we we connected. One of the things I loved about just reconnecting with you, John, was you shared with me, I would say, a unique way of praying. And you learned this from a priest friend of yours. And I think it it emphasizes starting prayer with gratitude, praising God for all of the awesome things that he's put in your life and just be so appreciative, you know, also at the same time exemplifying forgiveness for the faults that you might have done or been part of, and then talk about the things that you want or need God's help in. And maybe if you could speak to a how you first became aware of that order of praying and then to what it's done for you. I think the air and again, those forms of prayer are not and they're not earth shattering. I mean, people do it all the time, maybe not necessarily together or all in in order, but I was involved in the RCI program up at Holy Cross Immaculate of Mount Adams, and I think that if I recall, the reason how this came up was somebody that was going through RCA, which is the right of Christian initiation for adults, where someone is studying there to come into the Catholic faith. They asked, you know, his father, Stan Nye Hazel, who was the pastor there at the time. They said, you know how you know, how shall I pray? And he he talked about this four things. And the thing that I always think is interesting is that I usually don't get past the gratitude part. That's the first thing I do, you know, thankful for, you know, all the people in my life and the things that I've been able to do. I mean, mainly just the people and the relationships that I have. And a lot of times I don't get any further than that, especially if I'm praying before I go to bed. I fall asleep. But it is you know, if you think about it, you mean God gives us some pretty cool, pretty cool stuff. I mean, people in our lives and those relationships are really the foundation upon, you know, who we are as people, how we act, how we how we interact. And that, you know, going on from there, you know, praising God for, you know, he is without what without him, nothing in here would be possible. And I think, you know, you need to be sorry for things that you do wrong. So you need to be able to do that with God. But then finally, the last thing that I get to is, you know what I want. And that's usually where people start. Prayer is, you know, think about the things you want God to help you out. But I think the perspective of doing that last allows you to realize that sometimes there's things that you're asking for maybe early aren't that, you know, needy. You don't really need them. Well, what's interesting to me is I think about just my prayer life and we get to that last point. The most difficult part of this is really deciphering the difference between God's will in your will. And what I've learned over time is I feel like the most beautiful things that happened to me in my life are, generally speaking, not things that I dreamt up in my own head. It's just stuff that kind of organic just happen. And that's really because it's happening in God's will. But it is difficult when you find yourself ill or sick. Not well to not pray for specific things that you want. This really just ultimately we're asking for God's will to be, you know, clearly visible to us. But it's very difficult. Very difficult. Yeah, for sure. And it's it's definitely easier as you get older to be able to have a different way to look at our perspective. But, you know, the that point is is is one that bare God's will. I mean, I remember being sick and thinking me and I just want to get better and but also thinking, you know, maybe, maybe there's a reason for this. Maybe there's, you know, some other good that's going to come come about. You know, I've I don't think I mentioned this to you before, and it doesn't happen as often now as it did shortly after my surgery. But my physician here in Cincinnati, he would ask me to talk to people that he had recommended to have surgery or that were having difficulties with with whether it was Crohn's disease or ulcerative colitis. And, um, and it's, I don't know their total frame of mind, but I would have to think that some of those folks were pretty down and, you know, being able to communicate, you know, my story and that you've got the, you know, it's this isn't a death sentence. You know, you can you can definitely get better from this. And um, and then them also hearing things like, you know, I got married, had kids, you know, have they have normal jobs, you know, nobody is unless they hear my story, they would never know that, you know, that I went through what I went through. Then I don't have a colon. So I think that that that if you if you look at it from that perspective, if I was able to help, I mean, just one other person, let alone, you know, several. Well, I, I know you're you're going to and that's why I was so excited to have you on today's show. Let's move to kind of now like today. And, you know, your surgery was at midnight, is that right? Originally. Yeah, it was. It was 1993, so. 93. Okay. Yeah. So I was 23 years old at the time. So I've lived the majority of my life now without my colon and, and with it. And so it, it's, I mean, I don't know, I mean I think if, if people out there have even just like an irritable bowel syndrome on occasion they know are certain foods might trigger it. You know sometimes stress for me will or will make it worse than the better. Some foods make it worse than better. Um, so you just learn to kind of deal with it if you're, if you're going to have something spicy, which I like spicy foods, you know, you're going to deal with it later. That that's something I for me per se, I used to like spicy foods too, but my wife, I can't do spicy anymore. Just it's it's just too risky, too risky, not willing to take that risk today. So I mentioned you're, you know, planning a wedding coming up. You've got, you know, your beautiful children. I mean, are there is there any activity that you cannot do today that now you would like? Yeah, that that's awesome. That's what I was thinking. I mean, I mean, I threw my twenties. I played with the Notre Dame Club. I played flag football. I, I coached lots of coach, lots of teams. Both of my boys have played competitive baseball and my youngest is a senior high school. And I bowed out of coaching a few years ago. Not because I couldn't, but I just wasn't that good at that age. I wasn't good enough of a coach coach. Their basketball teams coached football before. I've coached soccer, I've done and there there really isn't anything I can't do. I mean, it does it does kind of stink sometimes where you for I have to make sure if I'm going to be in somewhere for a long period of time, I might want to make sure there's a bathroom there. But other than that, it's been never comes into play. I mean, I I've it's it's amazing as to, um, number one just my overall health it it's it's good. I mean, I don't take any medications. I've got some hypertension and cholesterol but all this guys in their fifties have that probably but you know I don't take any medications none of and no no medications impact my my life I'm able to work out I I've ran the marathon in 2000. I've run a bunch of ten ks. My knees are shot now but so there really isn't anything I can't do. What marathon you do in 2000. The The pig in Cincinnati. Okay. I did Chicago right around the same time. I think I did Chicago in 99 might have been 2000. I said, I'll never do another one in my life. That's exactly what I said it was. It was killer on my knees. And it which has nothing to do with with any of my health problems. So you still run today? I don't run. I will do other cardio just because it my knees will just, you know, I'd prefer to keep my existing knees as long as I can. So. John, I just want to for a first off, I really appreciate you sharing your story. And I think what I've learned just through all the guests that I've had on literally everyone in the world deals with some sort of hurdle that they can that they're going through and many are going through right now. And I think the more we are open to sharing how one might get through that hurdle, it can only help others that are dealing with it. It could be anything. It could be addiction in the family, it could be depression, you know, cancer, whatever. And I know that your story will resonate with classmates. I share with you. I got a call from a classmate of ours just last week, Jeffrey's server, and he was recently diagnosed with kidney cancer. And I was honored that he reached out to me. And I was just I that alone gave me evidence that what I'm doing here with this show is helping others. And Jeff and I had a wonderful conversation. And I'm very confident that he's going to do very well because they've just they just made radical advancements in the this that diseases as it as well as ulcerative colitis as well. And so I just thought I'd bring that up just because he's he's a classmate of ours. Yeah. Well I think I think you have to if you get to this point, if you get to the point of a mindset of that, your life can be a benefit to not just the very small people group of people around you. I mean, not just your immediate family, kids and stuff like that. But if you can realize that your life can impact other people, oftentimes people you don't ever meet, um, it's, it gives you I don't know, for me, it gives even more of a credence and a hope in a in a solidifies my faith that, yeah, you know, God put us here for a reason and we need to fulfill that reason. What you just said reminds me of the motto that we heard every single day. Well, I'd seen every school, and it was was really the Jesuit mile, being a man and or woman for others. What impact do you think that had on you thinking the way you think today with respect to help, you know, doing things to benefit others, not necessarily yourself? Well, again, I had this happen to me when I was at St Luke's, so it's hard to imagine what how things might have turned out if it wasn't if I wasn't there. But it's not that I've been that involved with the school. My oldest graduated from X, my other son went there for two years, so I saw a lot of of the impact it has, you know, not just being a student, but seeing it from the eyes of a parent and it it's it's an unbelievable motto if you if you really think of it. Because if we if every single one of us devoted ourselves to others, we would all get taken care of. And what we need in the world, we would actually experience the kingdom here. So true, so true. John, as we kind of wrap up this really remarkable story that I think a lot of people are going to find valuable as they think about their hurdles. But if you know, and I close really each one of my shows very similar, but I'm going to ask your question in a little bit different mindset. So dealt with this hurdle of yours call it you know early on mid high school and then beyond into college and and still deal with some of the side effects of that today. So grateful that you are healthy and doing well but as you look back on what you experienced as it relates to your sickness, is there any part of it that you can say, you know what, I'm so grateful that I had the opportunity to go through that because it allowed me to do X, Y, and Z. And if if the answer is yes, I love to hear from your perspective what that X, Y, and Z are that perhaps you wouldn't have been able to experience had it not been for this number one. I, I wouldn't want to change any part of my life that I've had. I've been incredibly blessed and so many different levels. So I don't ever have that discussion. Sometimes I laugh about it and say, Man, if I hadn't had this, then, you know, who knows what would have happened? But I don't want my life to have changed. So I don't really want I wouldn't want that to be the case. But to think about what what's transpired, you know, I had I think that I may not be as kind of a person and I'm not saying that I'm a super kind individual, but I don't know that I would be as kind of a person that if I hadn't gone through this, because I can't tell you the number of times where, you know, you see something happen in like we just moved into our house a couple of years ago and I'm going out of the neighborhood one day and there's this school bus and it's like taken forever, like the red lights are on and and I'm starting to get upset, and I'm like, you know why? There's probably a reason why this school busses is having issues or whatever. And sure enough it there's a handicapped person that lives there and the mom has to get on the bus to, you know, take the kid off the bus and and and like, you know, I'm not getting mad about that at all. And you have to think of it that way as you deal with people. I mean, that's I don't think about how many people you come across every day. If you were able to have a smile on your face or if they all had smiles on their faces and, you know, said, hey, how you doing? And just generally kind of the world would be a better place. So I would like to think that as a result of this, you know, maybe others have experienced some of that kindness and, you know, their lives might be a little bit better. Now, I have empathy and just awareness of other people's struggles, I think is I, I, too have found that. I think I have a little bit more empathy as it relates to what I've had to go through and the world would actually it would be such a beautiful place if everybody thought beyond just their selves and. Yeah, well, scientifically I've actually tested I mean, just because the sales programs and stuff and, and I have a really, really high level of empathy from a testing standpoint, and there's just no way I would have that high level if I hadn't gone through what I went through right now. That's, that's awesome. Well, listen, John, I know that your story is going to resonate with so many, and I'm so grateful that you were able to share your story with us today. The one thing that I've also learned through this, because, yeah, there was there's questions early on for myself as to how public should I be with respect to that. But what I found is because I have been pretty public with respect to the kidney cancer that I've been successfully managing, there's so much more love and support out there. If you're true to yourself and you don't share it, you may not get the love and support from others that you might get. It had just been open to to sharing. And I know it's difficult to sometimes kind of relive that pain, but that pain that you lives, John in particular right here, others can certainly learn for it and grow from it. Find the courage to be grateful, like when they're right in their their valley, you know, kind of goes hand in hand. What I talk about when I close each one of my shows, it's find the courage to be grateful regardless of how powerful your storm is. We secondly, we talk about truly being present. If you're really present to those you're with, you'd be amazed at the love and support that's right in front of you right at the time that you may need it. So just be present to the love and support that's around you. And lastly, it's pay attention to how you're feeding your mind, your body and your soul. Today's guest was my high school classmate, John Dana miller. John, such an honor to have you on today's show. If today's show inspired you in some way, shape or form, please subscribe to the show, comment on it, and share it with others with gratitude. Matt Listeners. Until next time, find the courage to be grateful. Godspeed, my friends.