An IBS Story: A Long Road Back to Full Strength | Deb Caton
In this episode of My Hero 360, Kerri Fitzgerald speaks with Deb Caton as she shares her decades-long journey with irritable bowel syndrome (IBS). In 2020, she was hospitalized at just 80 pounds due to an IBS flare-up and had to rely on a feeding tube for several months. Deb discusses malnutrition, food anxiety, and the recovery that helped her regain her strength. She also shares insights on the gut-brain connection, self-advocacy, and finding hope while living with a chronic illness. The episode was developed in partnership with the International Foundation for Gastrointestinal Disorders.
Kerri Fitzgerald:
Deb, welcome to My Hero 360.
Deb Caton:
Thank you. Happy to be here.
Kerri Fitzgerald:
Deb, you have long dealt with gastrointestinal-related issues throughout your life and you first received a diagnosis of irritable bowel syndrome, or IBS, in 2010. You managed your condition over time, but things really intensified around 2019, ultimately leading to a hospitalization and a long journey back to health. Before we get more into your story, I want to ask you about how IBS and the related symptoms have shaped and impacted your day-to-day life over the years.
Deb Caton:
I think I’ve had GI problems my whole life. They just didn’t have a name. I remember when I was young, I would have bouts of I just didn’t feel good, or I’d be in the bathroom with my mom and she’s on the phone with the doctor saying, “What do we do to help her?” As I got older, in my teens and 20s, I didn’t know what was wrong either, so I started doing things like giving up certain foods or drinks. I stopped drinking pop. I was always carrying around Pepto-Bismol. I think the older I got, the worse it got, up ultimately, to the point where it just became too much to handle.
Kerri Fitzgerald:
As I mentioned in the opening there, you ultimately had a very bad flare-up in 2020, right in the middle, of course, the COVID-19 pandemic. You had to wait several months to even be seen by a doctor, and then it was a virtual appointment because of the pandemic. What was it like going through this intensification of your IBS and your symptoms all while we’re all going through a very unpredictable time in life and society?
Deb Caton:
I was already struggling by the time I got my first appointment, and that was a phone appointment, not even virtual like this, at the end of March, so right after what we call shutdown. At that point, I was pretty worried about my health in general. Then thinking that now there’s this mysterious contagion around. I had already lost 15 pounds, and I was struggling. I was concerned that I wasn’t going to get the care that I needed just by talking to a stranger on the phone. I already am kind of a worrier, so I was already worried about germs and illnesses and all of that. I think that compounded the way I was already feeling, just having the pandemic happening at the same time as all of this. I was worried about more care being delayed, which, I guess, in some ways it was, but I got lucky with the physician that I found on the phone.
Kerri Fitzgerald:
You ultimately did wind up in the hospital.
Deb Caton:
I did.
Kerri Fitzgerald:
Just being in the hospital put you at further risk for infection. Your immune system was compromised. What was that like to have to go into the hospital during this really scary time when everybody was scared to come out of their homes, let alone go to the doctors?
Deb Caton:
We had been trying to manage my condition from home because I still, at that point, had not seen anyone except for 1 other ER visit. It was all via phone. At that point, when I went in the hospital, I was at my lowest weight. I was about 80 pounds. I was severely malnourished, and a phone call from a nurse scared me. She said, “You’re getting to the point where your heart is going to be at risk.” I decided to check myself in, and I checked in the last week of June, and I was there through the 4th of July. Being there during that time, it was definitely an added level of stress. I was already afraid for myself. I remember just being there one day, I had a roommate, and she was coughing and sneezing a lot, and I’m panicking thinking, “This is COVID, and I’m so susceptible to extra illness. This is terrible.”
I was in a place where I couldn’t emotionally handle a lot of stress because I was so depleted. That part was more difficult. I guess the only advantage to being in the hospital aside from it being during COVID was that I was able to get a lot of tests done that I might otherwise have not gotten done had I been still at home or that I might’ve had to wait months for or that I didn’t even know to ask about. In the end, by the time I left, at least I had more answers than wondering. I was on my way to a solution.
Kerri Fitzgerald:
Sure. To that point about the solution, so you mentioned you had lost so much weight, you were malnourished, this could impact other organs, parts of your body now. The decision was made to do a feeding tube, and you had that for about 8 months. Can you share more about that experience and how that decision was made?
Deb Caton:
Yeah, that was basically why I went into the hospital. They said, “You’re out of options, and you’re going to get to a point where you just won’t be able to function anymore, and we’re going to have to do it.” I went in with that knowledge. I had an NJ feeding tube placed, and that was bad enough. That provides liquid nutrition, which I also struggled with for whatever reason. My system didn’t like it, maybe because I was so depleted. They explained to me in the hospital that when people are at this point, what they usually do is they continue to make the dosage that you get in a however many hour period, certain level, 80 or 100 some, so that’s your main source of nutrition, and it was not working for me. I didn’t like it.
I ultimately stayed at a very low level and basically determined, “I’m going to get the rest of my nutrition from food.” No matter what they said, that’s what I was going to do, which meant a few things. One, that it took that 8 months instead of what my doctor expected to be 3 to get back to my weight. I had a goal of gaining 1 to 2 pounds a week, which was often very difficult. I also had to be in the feeding tube 24 hours a day. I had an IV pole by my bed that kept it going. I had a backpack so that I could go and move around the house or go do things. I had to have the tube replaced on 2 different occasions, which meant I had to go through the ER, which was frightening because it’s still the summer of COVID. I wouldn’t recommend it, but I feel like it probably saved my life.
Kerri Fitzgerald:
Yeah, absolutely. When we spoke the first time, you called this “the lost year” when you were at the hospital and then living with the feeding tube. I think a lot of people dealing with health issues can maybe relate to that feeling like time is lost. How do you describe this time period that you were going through?
Deb Caton:
COVID did exacerbate the feeling. I think that, in general, for anyone that’s dealing with a chronic illness like this or I don’t know, a point in time where it gets so bad, is your world becomes so small. Everything was about the feeding tube, eating, sleeping, doctors’ appointments, phone calls, medications. I mean, it all became so focused, and I didn’t see people very much. Even when I talked to them, I struggled sometimes to just have regular phone conversations. If you didn’t feel well on any particular day, you just don’t want to talk to people because it’s such an effort.
Then after I was better, I don’t know, I look back and it’s almost like I can’t comprehend that time in my life. It’s somehow sectioned off and that was the best way I could ever explain it, that your world becomes so small. I don’t really have a lot of recollections that other people have during that time because I was so focused on just trying to get better.
Kerri Fitzgerald:
Right. It’s all you really can focus on. The place that you were in, it was imperative that you put all of the energy towards that. I want to ask you about the anxiety around food and the potential impacts on IBS symptoms and how that can intensify that feedback loop of the mental, physical connection and symptoms that you were going through during that time.
Deb Caton:
I think anybody who’s living with any sort of chronic GI condition, I realize everyone handles it differently, but food becomes such a focus. I personally, I am always thinking of it even today, “What should I eat? How much did I eat? When did I eat? How do I feel now? How am I going to feel later?” It becomes a sort of constant state of consciousness about food that ends up creating more anxiety around food. Then the anxiety makes your guts feel worse. It becomes this gut-brain circular feedback loop, like you say, which in most cases should be good. But often for people with GI conditions, it’s negative. Then it becomes things like fear of food or fear of eating or fear of feeling bad. You do avoidance behaviors, and that’s the loop that I got into. To this day, it is still a conscious action on my part to remind myself that food is fuel, it is not there to hurt me, and to accept that I’m going to be fine.
Kerri Fitzgerald:
I can see it being stressful because food, nutrition, we need it to live. You can’t avoid it. Yet it’s something that exacerbates and intensifies also this chronic health condition that you have, so that stress is just amplifying everything that you’re going through.
You talked about the feeding tube, which helped you get back to your strength and you could get back to your nutrition and some activities you like to do, which we’re going to get into in a little bit. But you’ve also talked about how both pharmacologic therapy and some alternative kind of therapies like GI-focused hypnotherapy and relaxation techniques had an impact on your journey over the years dealing with and living with your IBS. What would you say, what treatment approaches have helped you?
Deb Caton:
I’ve tried so many and I continue to implement different ones over time. Obviously, the medications that I’ve taken, I’ve taken at least 3 or 4 different GI-related medications changing over time. But I think, ultimately, especially when I was most sick in 2020 through maybe early 2022, it was the team approach. They often call it your dream team, to have the GI doctor, a registered dietician, a GI psychologist, and I had also pelvic floor physical therapy. As I look back, I think the longest-term effects have come from the psychological aspects of it.
I also follow a low FODMAP diet and movement and water are key to that. The psychological part of it, the things I learned during therapy, including the relaxation techniques, I have been able to continue on my own because there are apps available and recordings. If you continue the practice, you can continue to help your gut through your mind and through your brain.
Kerri Fitzgerald:
Yeah, absolutely. You mentioned switching techniques, and with a chronic condition, often you do have to continuously work with your doctor and tweak and see what works. What is that like when you feel yourself start to need a different approach? Is that stressful? How do you handle that?
Deb Caton:
For me, the word I use a lot is frustrating. It’s very frustrating because I’ll feel like I’ve got it handled for a while. I’ll feel good for 6 months, and then who knows what? Something just maybe stops working or maybe a stressful situation in life causes something to take a left turn and doesn’t work the same way. It’s stressful and frustrating. I mean, that’s how it feels.
My approach now is I see a provider; it’s not my original GI doctor, but a physician in that same team. I see her about every 3 to 6 months and we reevaluate and we say what’s been working, what hasn’t, and then we tweak and titrate. Maybe we add a little something of over-the-counter or we take something out. But we always keep in mind that I have to try something for a while. I can’t just try something for a week. Oh, new medication 4 days later, it’s not magically better. That’s not how it works. I have on occasion been able to revisit things as needed, a check-in with a psychologist or repeated pelvic floor physical therapy. We just approach it as life changes, frequent check-ins. I’m fortunate to have those to make changes that I need.
Kerri Fitzgerald:
Yeah. You participated in some studies around different treatment or management options for people with IBS. Can you talk about some of those that you participated in?
Deb Caton:
Yeah, I really enjoyed doing a lot of those. The one that I think of first because it was the most physically active is I did a 12-week yoga study and they sent me the equipment and then I did…It was still during COVID times, so we did virtual 1-on-1 yoga visits, and then we saw how that impacted my symptoms and how I was feeling, and they took results and checked in with me and that after. I’ve also done studies where I was in a placebo group for medication where I send out stool samples where they take blood work, where I answer surveys and questionnaires. Any opportunity where I fit the criteria, I like participating because ultimately maybe it won’t do anything for me in the immediate sense, but I really like the idea that I’m helping forward the research so that they can come up with new treatments and new therapies and new ideas for anybody in the future who’s suffering with GI conditions.
Kerri Fitzgerald:
Yeah. That’s incredible that you do that. Like you said, you’re hopefully helping move the needle in some way. When you and I spoke, you talked about how you had this great care team, great support team. You were lucky you had good insurance, you live in an area that made it possible to see these doctors and specialists, but that’s not the case for everyone. How would you say these aspects of your life and your circumstances have made an impact on your health journey?
Deb Caton:
I think it all made a world of difference. There was a time I was on a study committee, like a research group, where we discussed the lack of access that so many people have. I had already seen several GI doctors in different cities in my state and I was ready to go anywhere. I was checking places out of state, anywhere where I could find answers. Fortunately, geography landed me close enough to 1 of the leading GI hospitals in the nation at the University of Michigan, so I feel lucky that that happened.
I also had a job that provided good healthcare, which helped me to offset a lot of the costs that came with all of the hospital stays and the feeding tubes and everything, all of the treatments. I continue to benefit from both of those things—the location, the expertise that’s in the area, the insurance that I have so I can receive continued care. I wonder had I not had these opportunities, how it might’ve turned out differently because of those things. It makes a world of difference.
Kerri Fitzgerald:
Absolutely. You said that during some of the more challenging times you…or maybe just normally, you turn to the internet sometimes like people do, the internet, social media, for recommendations. What are you doing? What works? In some ways you said you felt desperate for answers and help, but in other ways it’s very scary and easy to fall into that kind of social media rabbit hole that can leave you feeling worse. What advice would you give to others who are looking to turn online or social media to find help or relief?
Deb Caton:
I would say it’s not a terrible thing to start with. It’s always good to research. I learned about certain things, like no one had told me there were 3 different dosage levels of a medication they wanted me to take. That was helpful information so I could take that to the doctor and say, “Why didn’t you give me this one?” But when I was at some of my lowest points feeling desperate, I was looking for support groups, I was looking for anybody who could help me now instead of having to wait to go to the doctor’s office or anything like that.
What I found in the support groups is it felt good for maybe a couple weeks that other people could relate. After that, it was people all around the world explaining how bad their GI symptoms were and it was almost like a competition—who was worse. I started sensing that I was feeling worse about the potential and the hope. I was feeling like, “Great, I’m just going to feel worse. I’m going to get sicker. This is terrible.” I finally stopped and thought, “This is not good for me.”
I would say for others, be careful. There are a lot of people out there who also have alternative methods that they want to help and it might work for some people. It can also get very expensive, thousands of dollars. Always take a step back and think, “Is this really what I want to do?” If you see things online and you have a care provider, ask them about it and maybe they can debunk some myths or say, “Well, okay, but…” Just approach with caution and don’t get lost in the spiral that’s out there.
Kerri Fitzgerald:
Very salient advice. During this time that you’ve been navigating your health journey, you’ve also, when we talked, you mentioned you’ve dealt with some hormonal changes and that obviously in itself alone affects our health, impacts stress, different symptoms we may be feeling. How did that even add more to this kind of IBS ecosystem and journey you were living with?
Deb Caton:
I had no idea at the beginning because I was so malnourished, I actually lost my menstrual cycle. Then when I got my weight back, it came back, but then it disappeared again and I thought, “What is happening to me?” I really didn’t even know, “Which doctor do I ask? What’s happening?” I did, I started with some research on my own and I just started asking all of my providers. I asked my gynecologist, I asked my GI doctor, and I have since learned a lot about the fact that the gut actually is very connected to your hormonal system, especially for women and estrogen, and losing estrogen can have major impacts on your gut.
Fortunately, right now, perimenopause, menopause, is having a moment. There’s a lot going on right now about it. By asking the questions, I was able to at least continue to pursue remedies. I do think it has changed my gut, but that’s just the way it is. You get older and this is what happens. But I definitely made sure to ask and seek out treatment to make things better.
Kerri Fitzgerald:
Yeah. Talking about it maybe impacts the medical community to want to study the impact or the role of hormones as it relates not just to IBS, but several other conditions because it affects a large population of people living here.
You’ve always been an active person, but during the worst of your health journey, we’ve talked about, you were malnourished and not up to your full strength, but you said it was important for you to get back to these activities that you love like biking and hiking. Once you felt more like yourself, I think it was about a year and a half after the feeding tube was removed, a highlight for you is you went on this backpacking trip. You carried a lot of weight on your back and you camped for a number of nights. What was that like? Just that trip, but also what was it like to start to feel like yourself again?
Deb Caton:
The trip, we did that in the summer of 2022 and I was scared. I’m going to be honest. I’d never done any backpacking before, no mountain climbing, anything like that. But I was excited to go see these places that I’d only seen in pictures. We did a lot of careful planning because I was going to be without the things I had come to count on—a bathroom, a schedule, set foods that I felt safe eating, and all of that was going out the window.
But once we finally got to it, I really only had a couple of what I called bad days where I just didn’t feel well. But otherwise, it was all fine and it was exciting to feel strong again and to feel capable again. I feel like I really lost my body. My physical self was always important to me. I was a gymnast, I exercised all the time, and I was finally back to maybe not 100%, but close. It was very life-affirming, cliche, but that’s how it felt to feel strong again. It was very, very much worth it. It gave me confidence to do other things like start trying new foods or trying new adventures or not being afraid of traveling anymore. I think it had long-term effects as well.
Kerri Fitzgerald:
Yeah. It showed the physical growth, but also, like you said, the emotional, mental growth…
Deb Caton:
Oh, yes.
Kerri Fitzgerald:
…where you can go and do this trip and, like you said, without a bathroom or a schedule or whatever. That’s really incredible.
Deb Caton:
Yeah. When I was sick, I was very depleted emotionally and mentally. I couldn’t manage just general everyday stressors. That’s what I got back was those abilities and that trip helped me recognize that. Now we bike all the time and hike and get outside. We do all kinds of stuff.
Kerri Fitzgerald:
That’s awesome. Looking back from now a better place to this time, maybe 5, 6 years ago, what would you say were some of the things that got you through those really, really tough days? Was there anything that you just kind of clung to or looked to that made you keep going and keep trying to get your strength back?
Deb Caton:
Probably a lot that I won’t be able to list all here, but I wanted to be there for the people in my life, especially my kids. At the time that I was sick, I had young teenagers and I couldn’t imagine not being there to be their mom. The support that I got from everybody, my boyfriend, my parents, my sister, even friends at work, just supporting me in all the ways that I let them anyway. I go back to the GI psychologist and my GI doctor. They taught me some lessons that stick with me today.
That sense of when I was trying to gain the weight back, it often felt like 2 steps forward, 1 step back. I gained 2 pounds; I lost a pound. To me, this was the world. She really taught me to be patient, to give myself some grace when I’m healing or with anything really when you’re struggling. To know that we were going to get there. It didn’t happen overnight and it’s not going to get fixed overnight. I’ve continued to remember that and share that with other people.
The other thing was my GI doctor, he was new at the time, I didn’t know this, I was like his third patient ever, he was willing and able to provide new insights about new possible treatments and things like that. But the 1 lesson he has taught me that I, still to this day, it helped me then and it helped me now, I was always scared to try something new because a lot of times when you do anything new, even if it’s an exercise or medication, it’s going to be hard. It’s not going to feel good. He kept reminding me, “One thing at a time, slow.” You’d make 1 change. It might not feel great for a little bit, but you do that 1 thing and you wait it out and then you’ll know, “Okay, it made this change or it made this difference to how I’m feeling.” I apply that all the time now.
Those are things that definitely help me get through. I also learned a lot that I try to tell other people is you have to advocate for yourself. You have to speak up with physicians and anybody in the medical field, just anybody you’re talking to. Don’t be afraid. That’s the only way you’re going to get the answers you need.
Kerri Fitzgerald:
Absolutely. What advocacy advice would you give to people who are going through a similar challenge? Or even outside of advocacy, what advice would you give to people who are really looking for that hope when they’re in a tough time?
Deb Caton:
Keep asking those questions. There is hope. You will find a way there. If something isn’t working for you, if a doctor is making you feel like you’re brushed off, or if a treatment isn’t working and you’ve tried it forever, don’t be afraid to try something else to find somebody new if you’re able. Remember that there are more than just a medical, like a GI doctor, that there are other ways that you can help yourself through psychologists or physical therapy or other things. Ask about those because a lot of doctors don’t know about those options.
I had never heard anyone mention it until I got to U of M. No one ever said, “Well, there are people who can help you emotionally through these things.” I learned a quote from a therapist I saw once and she told me, “The only way out is through.” I know that’s not an unknown phrase, but it’s one I’ve really hung onto because it’s hard sometimes. It’s really hard, but keep going through it because you will come out at the end better.
Kerri Fitzgerald:
Absolutely. Your story shows just that. I want to ask you about how we got connected through the International Foundation for Gastrointestinal Disorders, or IFFGD. How did you initially connect with the organization, and how has that connection helped shape your recovery and the ongoing management of your IBS?
Deb Caton:
I’m pretty sure it was my pelvic floor physical therapist that mentioned it to me back in probably late 2020. She just sent me a link, so I went to their website and it’s iffgd.org and they are an amazing organization. It’s international, and they have information there and studies and monthly newsletters that I’m signed up for. They talk with GI doctors all the time. They have little interviews and articles about all so many functional gastrointestinal disorders.
It has provided me opportunities like this one or opportunities to take part in those studies. I learned about almost all of those through IFFGD. As far as communities out there, instead of a Facebook support group, I found IFFGD that has strong, valid information and resources. You can find doctors through there, registered dieticians, you name it, it’s there. I’ve recommended it to many people in my life who have been struggling as well.
Kerri Fitzgerald:
It gives you that community, but also with the research and science behind it so you can feel confident in the information you are receiving there. That’s great.
Deb Caton:
100%. Yes.
Kerri Fitzgerald:
Well, Deb, we like to conclude our My Hero 360 interviews by asking the same question of everyone. What would you tell your younger self knowing what you know now?
Deb Caton:
This one is really hard because I don’t know about which younger self I would tell, but as I think back to my 20-something younger self, I would say to not be afraid of food and not be afraid of illness and to seek out mental health support in addition to the medical support. I didn’t pursue that as much as I probably should have. When I meet younger people today who are struggling, I always say, “There’s more help than a doctor out there, and there are people who can help you through the emotional parts of this.” That’s what I would tell my younger self.
Kerri Fitzgerald:
Absolutely. The mental and physical is just so interconnected that we really have to be sure to take care of both. That’s really great advice. Thank you, Deb, so much for sharing your story with My Hero 360.
Deb Caton:
Absolutely.
Kerri Fitzgerald:
You’re incredible. I know you’re going to help a lot of other people who are listening to this, so thank you again.
Deb Caton:
I hope so. Absolutely. You’re very welcome.
Connect with The International Foundation for Gastrointestinal Disorders:
iffgd.org
https://www.linkedin.com/company/iffgd/
https://www.instagram.com/digestivehealthmatters/
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