From Silence to Diagnosis: How One Conversation Changed Everything

In this episode of Life Without Leaks, we speak with Andy, a 40-year-old truck driver from Utah, about his 12-year struggle with urgency and bowel incontinence and the turning point that finally led him to seek help.

After years of attempting to mask his symptoms with daily, over-the-counter medication and suffering in quiet isolation, a public accident pushed Andy to have the difficult conversation he had avoided for over a decade. What followed was a diagnosis of celiac disease - an autoimmune condition triggered by gluten - and a treatment plan that transformed his quality of life.

Andy shares what it was like to live in silence, the fear of speaking up, the relief of finally getting answers and the dramatic improvements that came with dietary changes. His story highlights the emotional toll of untreated symptoms and the power of persistence, proper testing and lifestyle adjustments.

If you’ve been coping alone, this episode is a reminder: answers are possible, and relief may be closer than you think.

For more information about the National Association for Continence, click here, and be sure to follow us on Facebook, Instagram and Pinterest.

Music:
Rainbows Kevin MacLeod (incompetech.com)
Licensed under Creative Commons: By Attribution 3.0 License
http://creativecommons.org/licenses/by/3.0/

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Transcript

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 as always is Sarah Jenkins, the executive director for the National Association for Continence. Welcome Sarah. 

Sarah Jenkins: Thanks Bruce. I'm so happy to be here. 

Bruce Kassover: Today we have a patient, Andy is going to be talking with us about his issues with bowel incontinence and I think it's going to be something that's really illuminating for our listeners. So Andy, thank you for joining us today. We really appreciate you being here.

Andy: I appreciate the opportunity to be on here.

Bruce Kassover: Well, tell me this. Before we even get going and start talking about medical things, maybe you want to tell us a little bit about yourself, what you do, and who you are outside of the purposes of this call. 

Andy: Well I'm 40 years old. I live in Salt Lake City, Utah. I'm a truck driver by trade. I ran over the road long haul for years and years. And then I currently work in the dewatering industry, so I work with a lot of pumps and stuff. I do a lot of stuff in mining and construction, wherever there's a need to move water, I'm there. 

Bruce Kassover: That's a very interesting profession. Tell me this. You have anything to do with like, fracking and things like that? 

Andy: Sometimes. I mean, I don't do the actual fracking jobs, but I do provide a lot of the products that they use.

Bruce Kassover: I can imagine that keeps you very busy. 

Andy: Oh, yes, very much. 

Bruce Kassover: Tell me this, you are here, not because we're talking about moving water or trucking, but because you had some medical issues that you had to seek trouble for. What were the first signs that you knew something was not right?

Andy: So I had been dealing with a lot of, urgency and frequency when it came to having bowel movements? I was having accidents. I had, for years prior I had experienced some bladder issues, so I was kind of already familiar with using products, but when the bowel issues started, I really had to step things up as far as managing it, and that was, that was a huge step for me.

There was that huge mind block of having to be willing to step up to use that level of protection. And I kind of, it was such a isolating thing, that because you're going through it and you feel like you're so alone and you don't want to say anything to anyone 'cause you are afraid of being judged. And so you just do what you can to deal with it and to live with it 'cause you don't want to talk to anyone about it. And so that's what I did for probably over 10 years. I just dealt with it until I got to be too much. 

Bruce Kassover: Really. Now how old were you when you first started to notice this happening?

Andy: Late twenties, when I first started to experience the bowel incontinence, I was approaching a major life change. At the time, I was a really bad alcoholic and initially I thought that it had to do with my drinking, and eventually I was able to quit drinking, and then the incontinence persisted once I got sober, and then it progressively got worse and worse over the years. 

Bruce Kassover: And certainly congratulations on getting sober. I'm sure that's an absolutely incredibly difficult thing to do. So that's really nice to hear that you're able to get past that. That's for sure. So you said that you started to experience urgency. Now everybody's experienced urgency to a certain degree at certain times.

You know, either you have to go all of a sudden, or maybe, you know, people get stomach bugs and things like this. But you could tell from your symptoms, the way you were experiencing that this was abnormal. Is that right? 

Andy: Oh, most definitely. It was to the point that I was having to. Use medication every day. I was using Imodium multiple times a day to try and fight that urgency 'cause I was having multiple episodes a day to where I was either barely making it to the restroom time or not making it at all. And it was, it was definitely a very trying time, you know, having this suddenly happen.

Bruce Kassover: So tell me this, so how long did you live with these symptoms and just sort of try and manage them on your own before you realized, I got to talk to a doctor about that. 

Andy: Probably over 12 years before I finally had enough and it was having a very public accident. I was with some friends. I was, attending church and, and out of nowhere, I got the urge and before I could even make it out of the room, I'd had an accident. And I just remember going home and just, you know, crying. It was a very emotional thing 'cause I, you know, I had to, you know, people had to have noticed and I thought, I'm just, I'm just done.

And so I, that day I reached out to a family member to get a name of a gastroenterologist they had seen. And the following Monday, I called in and made an appointment, and within a week I'd gone in and had that very uncomfortable conversation, you know, you know, explaining all the years that I'd had to, you know, where I was taking Immodium daily, where I'd had to start wearing protection, just to get through the day.

And it was not... it was terrifying at first, but I never, but the physician that I saw ended up making me feel at ease. She immediately had a suspicion as to what was wrong. Recommended some tests. We did the test and I was able to, got a, get a diagnosis and made the lifestyle changes that I needed to make that drastically improved my life and decreased significantly the episodes of incontinence I was experiencing.

Bruce Kassover: You know, for a lot of people who are listening to us, they're at the very beginning of their journey and they're really, like you, they waited a long time before they decided that they needed to seek help. And one of the big things is that it's just, the idea of speaking to somebody about it is horrifying.

And they would never want to, you know, they have to reach like you did, you know, some sort of episode that's so bad that it forces them. So maybe you could put their minds at ease about how difficult it was or wasn't having that initial consultation. How did your doctor make you feel and how easy or not easy was it to actually talk about it to somebody?

Andy: My doctor made me feel pretty good about, I mean, she sat there and she'd ask, "Well, what brings you in?" And I just kind of explained. She sat there and she kinda listened and she says, "You know, that happens more than you think. People just don't talk about it." But she says, there's things that we can do for you that can make it better.

And so from there she went and was, you know, asking all kinds of questions that I thought had nothing to do with my incontinence. And I think the consult lasted for maybe 15 minutes, it was a very short conversation, but she was pretty suspicious, you know, going into the conversation what it might be.

And once, we had those answers, it was that wave of relief, you know, once I had the answers, once I'd done the test, it was probably a month before I did the test. And getting those answers and, you know, being able to make those changes and see those changes in my life, it was such a relief; for the first time in my life I was able to go several days without taking any medication for it. Based on how many years I'd taken the medication, I have to slowly wean off a bit because my body's just so used to it. But you know, seeing those changes and seeing, getting that relief made me wish I'd done it sooner. Like it was terrifying at first, yes. But being able to give that relief just made all the difference in my life. 

Bruce Kassover: I can absolutely imagine that, and the fact that you waited 12 years before you got help, I think that sort of waiting period for a lot of people. But I don't think it's that crazy. I mean, Sarah, correct me if I'm wrong. Well, maybe you could tell us, typically how long do we find that the patients wait before they actually seek help? 

Sarah Jenkins: On average about six and a half to seven years. Hard thing to talk about. So people cope for a long time, as you were mentioning. So it's kudos to you for speaking up because it, it is difficult. But I'm really glad that you did and found some relief. 

Bruce Kassover: Now tell me this, you said that she ran some tests. Do you remember what sort of testing you had done?

Andy: So what they recommended was an endoscopy and a colonoscopy to check the condition of both my small intestine and my large intestine.

The reason why they recommended that was 'cause they suspected celiac disease to be the cause of a lot of my issues. And upon doing the test, they found clear indications of celiac disease, which is it's an autoimmune condition where your body, when it senses gluten, it actually attacks the villi which are like finger-like projections in your intestines. It attacks them and tries to destroy them, and that causes you to not absorb nutrients and it causes all kinds of issues. And they ran the test, they did biopsies of both my intestines and it came back positive for celiac disease.

Bruce Kassover: Well, that is something that we certainly know there's a lot more awareness about that and gluten lately. When you got the diagnosis though, was it something you were familiar with at all? 

Andy: I was a little bit, I have a couple of family members that have it, and then I have a sibling that for years and years had been telling me that she thought I had celiac disease, but I was so resistant to the idea that, you know, it couldn't be. So I was a little surprised, but not really surprised when it, it came up.

Bruce Kassover: And when it did come up, what did the doctor recommend in terms of a treatment path for you? 

Andy: As far as the treatment path, there's really only, really the only thing that you can do is to cut out gluten, you know? And it's all amounts. I mean, it's, it can be the smallest amount that can trigger an attack.

And I was told that it was going to take time to heal. It was going to take time for things to get better, and it was going to take time for my body to adjust to not having that. And then the other part of the treatment plan was to slowly wean off of the Immodium that I'd been taking over the years 'cause I'd been taking two or three doses a day to try and stop the urgency, stop my incontinence issues, and, so that was the main treatment and there was the, we had to add in, you know, various vitamins and stuff to kind of make up for the fact that I wasn't absorbing nutrients for so long. 

Bruce Kassover: So tell me this , beforehand, were you like a gluten addict? Was some of your favorite foods? The gluten heavy ones? 

Andy: Oh yeah. I was a huge, huge , huge pasta addict. I love pasta, ate it multiple times a week. You know, pizza, bread, you know, anything. And then having to suddenly cut that out, it was definitely a big adjustment. 

Bruce Kassover: How was it, were you able to find a good diet that satisfies you and still helps prevent flareups? 

Andy: For the most part. I mean, there's definitely a learning curve when it comes to going gluten-free 'cause gluten is in everything.

I had to get really good at reading ingredients, you know, and looking for those little things that it, where it can hide. Like even seasoning, like it hides in that. And, even just the smallest amount, you know, is enough to trigger that. So it makes me very cautious when it came to food.

Bruce Kassover: I would imagine though that considering now that you understand what the ramifications, what the repercussions are from eating gluten, that probably made it a lot easier to sit there and say, "Eh, maybe I'm not going to have that carbonara tonight." 

Andy: Oh, definitely, most definitely. Especially once I saw the results of, you know, how much my life improved.

Bruce Kassover: Well, let's talk about those results. So you started to go gluten-free or as gluten-free as you could. How quickly did it take to see a change? 

Andy: Probably two or three months before I started to really notice a change. But once I noticed it, it was, I mean, it was the best thing ever. For the first time in my life I was able to, not have to worry about wearing a diaper while going out and about. You know, I could, be a little bit more spontaneous when it came to, making plans and stuff.

Bruce Kassover: So I could imagine that in terms of liberating you in that regard, it's got to be great. But I would imagine that the mental health improvement had to be pretty dramatic as well. I mean, because a lot of people, when they have these sorts of issues, feel in some ways, like, infantalized almost, you know, because it brings you back to, you know, childhood and when everybody's sort of first learning how. Did you feel that your mental health improved substantially when you started to see improvement in your symptoms? 

Andy: Oh, most definitely. I mean, it was, I no longer had to worry about being as embarrassed, you know? There was no longer that loss of control. At least as long as, I wasn't experiencing any symptoms.

And yeah, it was definitely a huge improvement mental health wise. Socially, it made things easier to some degree. I mean, there was new challenges when it came to food, but as far as not having to worry about being close to a bathroom all the time, I mean that, that made a huge difference.

Bruce Kassover: Yeah, I could certainly imagine that. I would also imagine that nowadays because there is so much more awareness about gluten and celiac, but also people who just find that they're sensitive to gluten, even if it's not officially celiac, i'm hoping to hear that, that you find that there are a lot better options when you do go out to eat and that it is easier to accommodate that type sort of diet. 

Andy: Oh, most definitely. A lot more places are more aware of it. I mean, I still have to be really careful, but there's, from what I'm hearing from people that have had celiac disease for a long time, the options are astronomical compared to what they used to be like.

Even going to the grocery store, you have a pretty decent selection of not only gluten-free, but celiac safe foods. Where they actually test to make sure that the gluten levels are below the required amounts to where it is safe for someone with celiac disease to eat.

Bruce Kassover: So now that you've found you have a way to manage and that your symptoms have been reduced by... would you say that you're symptom free as long as you maintain that diet? Or do you find that you still have to be careful and you may find you have flareups on occasion? 

Andy: I still have to be pretty careful. I mean, I'm still having to wear protection, for instance. I'm still having to take Imodium to kind of, as I'm weaning off of things. But I'm no longer, I'm no longer having accidents every day. So it definitely makes it, it's definitely helped a lot mentally and it's made things easier to do things socially, to be willing to go out, and spend the day out with friends. I don't have to plan on only going out for an hour or two or a couple of hours. I can help plan for full day outings. I can help plan trips even.

Bruce Kassover: This has me wondering if you could go back in time and tell yourself back when things first started, is there a bit of advice you might have given to yourself or something you would've told yourself? 

Andy: I would've told myself to just suck it up and, and go talk to doctors. Not going to be as bad as I, as I thought it was going to be.

You know, I would've told myself that, you know, listen, you're not the only one going through this. You're not going to be the first person that doctor's ever seen with these issues. Yeah it's going to be embarrassing, but if you get the help now, you'll save yourself so many headaches and so much heartache, so many frustrations with life. You know, if you just get the help now and make the changes now, things will be so much better. 

Bruce Kassover: The great thing about that bit of advice is that it's not only good advice for a younger Andy, but it's also good advice for anybody who feels like they're in a similar situation who's listening to this now.

So I hope that some people take that to heart, recognize that, like you said, you know what? The doctors who treat this see this every single day, and you are not going to be the first, you're not going to scandalize them or anything like that. So that, yes, absolutely, get the help you deserve because you deserve it.

So with that being said, Andy, I want to thank you for joining us today for sharing your story, and I hope that it really does make a difference and that people out there take it to heart and say to themselves, you know what? I'm going to be like Andy, I'm going to go find a physician and get this thing treated. Because as you can see, it really can make a difference. So thank you for joining us today. 

Andy: Thank you so much. This was a wonderful opportunity and I really do hope it helps someone. 

Bruce Kassover: 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.