Transcript
Dr. Buch:
What leads to the greatest success in treating irritable bowel syndrome? You might think of a physician who utilizes the latest diagnostic and management strategies. But ultimately, a truly great physician needs to guide and ultimately partner with his patient.
Welcome to GI Insights on ReachMD. I’m Dr. Peter Buch, and joining me in this unique, patient-centered discussion is Dr. Douglas Drossman and his patient, Ms. Johannah Ruddy. Dr. Drossman is Professor Emeritus of Medicine and Psychiatry at the University of North Carolina, and President of the Rome Foundation. Dr. Drossman, thanks very much for joining us here today.
Dr. Drossman:
Well, thanks for having me.
Dr. Buch:
And not only is Ms. Johanna Ruddy one of Drossman’s patients, but she is also the Executive Director of the Rome Foundation. Ms. Ruddy, it’s great to have you with us today as well.
Ms. Ruddy:
Thanks so much for inviting me.
Dr. Buch:
Our pleasure. So, Ms. Ruddy can you start off by sharing your diagnostic journey until your first visit with Dr. Drossman?
Ms. Ruddy:
Yes, sure. It was about three years ago that I first saw Dr. Drossman, and at that point, my journey had been a ten-year process of trying to find a diagnosis and appropriate management for my symptoms. It had begun with a bacterial gastroenteritis attack, after what I assume was bad chicken salad and left me that night on the bathroom floor, feverish, shaking, with very intense diarrhea and blood in the stool, and abdominal pain that was just almost to the point that you’re about to black out. My husband took me to the emergency room, and they started me on IV medications and fluids. They did a stool culture and determined it was E. coli, and did a CT scan to see if there was anything else that they needed to be aware of, and the doctor came back in and told my husband that they needed to transport me by ambulance down to the larger hospital in the main part of the city because the CT scan had showed an immense amount of swelling and she was concerned about losing blood flow to the bowel. And so they loaded me up and took me down across town, admitted me into the ICU for intermediate care and started trying to figure out how to treat this, so they started me on a round of antibiotics, and I was there for about three days while everything kind of tried to subside with the medications they were giving me. After that, I went and followed up with a GI physician; I was still having pain and I was still having diarrhea. Obviously, it was better, but it was still not what I had had prior to this attack. I was following up, and the gastroenterologist was someone different who had seen me in the hospital. I don’t even recall him ever looking at me. He was either looking at a computer screen or looking at paperwork the whole time. And he was just, you know, rapid-fire, kind of talking, and I was trying to get my voice in there and ask him questions, and he was talking over me, and it was clear by his body language that he did not want to be there, and he didn’t think it was that big of a deal, and I was trying to explain that I still had a lot of pain. The whole interaction was maybe five minutes, and I was just very frustrated, no answers, but I thought, okay, I’ll have the colonoscopy. That experience was also very traumatic, in that he, again, was very dismissive, and very rude and demeaning, and when they rolled me into the procedure room and were getting me prepped to knock me out under the anesthesia, I went to sleep thinking that, oh my gosh, this guy is not gonna be very helpful, and I was very frustrated and angry, and I woke up, and he had told my husband that they had removed some polyps. He didn’t see anything that was wrong, and so follow up with my primary care doctor, and that was it. I struggled trying to find a diagnosis. My symptoms were still there. I couldn’t eat like I used to. I couldn’t do the things I used to do. It just got worse and worse over the years. So I started adapting my life around my symptoms, and every doctor I saw told me that there was nothing wrong with me, my bloodwork was fine, my colonoscopy was fine. They didn’t know what else to do for me. This cycle just continued, and I got so frustrated that nobody could help that I just stopped seeking care from physicians, and I just tried to manage it on my own with over-the-counter medications and really it got to the point where the abdominal pain started moving throughout my entire body, and it was really like a chronic fibromyalgia-type pain that I was experiencing. It was miserable, and it wasn’t until at the end of that ten years that we ended up moving across the country and started working for the Rome Foundation and didn’t know that there was a connection between my symptoms and the work that I was starting to do within Rome. But quickly learned that there was not just a connection, but (laughs) it was what I had! And so, met Dr. Drossman and then we kinda move into the second phase of my journey.
Dr. Buch:
Thank you. So let’s get to the next question. Ms. Ruddy would you describe your first visit with Dr. Drossman?
Ms. Ruddy:
So the first thing that I noted was his body language was very different. He turned away from the computer and faced me directly, maybe three feet away from me, sitting down at the same level as I was, hands folded in his lap, and was looking directly at me when he spoke to me. And he asked me, “Tell me about what’s going on. Tell me how does that affect your life? What impact does that have on your family? What impact does that have on your job?” I mean, he was asking questions about my quality of life as well as my symptoms and the severity of my symptoms, which was very, very different. I had never had a physician ask me about the impact on my life. So right away, I knew that the experience was different, and different in a very good way and a very therapeutic way. Once we got through all of that, he did a physical exam, which again, was very different. I had not experienced, in any physician that I had seen, whether specialty or primary care, a physical exam during the course of this illness. He performed a physical exam, which again, made me feel reassured that he was really wanting to understand and make sure he didn’t miss anything. And he came back saying, “Okay, this is your diagnosis. This is why this is your diagnosis. This is what’s happening inside of your body.” He had diagrams and pictures to explain what was going on, why I was experiencing the pain I was, and the disordered bowel habits and then said, “So, this is my recommendation. How do you feel about that?” Again, there was a collaborative patient model there, as opposed to saying, “Take this drug. Call me in two weeks. Let me know what’s going on.” He wanted to know my feedback and any questions that I might have about his treatment plan. That was just really exciting. A – I had a diagnosis, B – I knew why things were going on and why I was having the symptoms I was having, and then we had a plan that we both agreed on together, which made me confident that it was gonna work, and he said, “You know, this is a long road, I’m not gonna abandon you. Chronic illness is just that – it’s chronic – and we’re not gonna magically cure you overnight, but we are gonna work together to reach a level of functionality that you haven’t had in a long, long time. I’m gonna be your partner in this.” And that was really, very exciting to hear, because I did not have that before. It’s been very much a collaborative partnership throughout the years that I’ve been working with him.
Dr. Buch:
Thank you for that insight. So, Dr. Drossman, we’ve got a two-part question for you. Part number one: What was your thinking when you first saw Ms. Ruddy? And part number two: Do you often see patients who are in this similar situation?
Dr. Drossman:
So, when I first saw Johannah, there were two things that struck me. The first was the challenge she had with this condition, and how much she struggled with her symptoms that had gone on ten years. Seeing doctors, not having good answers, really being confused about what’s going on, and the amount of restriction she had in her lifestyle, in terms of her diet, the limitations of her activities – she really didn’t show it, but once she unfolded the story, I learned how much she had to adapt to this severe pain, diarrhea bloating, and the like. The second thing that struck me was how little she knew about this condition. She had been to so many doctors, including gastroenterologists. Nobody gave her a diagnosis. Nobody gave her a plan of treatment. So those are the things that struck me when I first saw her.
I actually see many patients who are more severe than that, in terms of not only their physical symptoms, but their emotional state of feeling helpless, out of control, angry at their doctors, feeling very wary that this will get worse. So, a lot of the patients I see, we work on a plan of management, which does involve continuity of care and availability and an effort, as Johanna said, to make some suggestions, but to then say, “Here’s one option.” Risks and side effects are discussed, benefits are discussed. “Here’s option B. What would you prefer? Let’s discuss it. Let’s talk about the pros and cons.” So from the very beginning, it’s really a dialogue. That means the patient shares the responsibility. Doctors sometimes think they have to be kind of on top of a platform, but by equalizing it, you’re working on it together, and you share the responsibility and the benefits. So that’s kind of how I approach other patients as well.
Dr. Buch:
Thank you. For those just tuning in, you’re listening to GI Insights on ReachMD. I’m Dr. Peter Buch and today I’m speaking with Dr. Douglas Drossman and his patient, Ms. Johannah Ruddy, about the importance of the doctor-patient relationship when diagnosing GI disorders. So, let’s return to Ms. Ruddy. What would you like physicians to keep in mind when diagnosing and treating irritable bowel syndrome patients?
Ms. Ruddy:
Oh, goodness. Well, there’s several things, at least in my experience, and I think the message is that we want doctors to understand the impact of our symptoms on our quality of life. Many times doctors are just focused on the physical symptoms, and whether they’re functional, or whether they’re organic, and how do we treat it, and the pharmacological approach. But it’s really more about the impact on our lives – you know, our jobs, our families, our emotional well-being. We also want to feel respected. We want to provide the personal details that will assist you in caring for us, and we want to be able to give those details to you without feeling judged or stigmatized. And we know that with these disorders of gut-brain interaction, there is a tremendous amount of stigma that is attached to them because they are not organic, and because diagnostic testing shows up as normal. So really reducing that stigma by acknowledging that they’re a legitimate condition, and it’s not in your head – those will all dispel some of that fear and help the patients to relax and be able to really give you a clear idea of what’s going on with their symptoms and their impact on them. And then, finally, we want doctors to tell us that they’re in it for the long haul, that they’re not gonna abandon us in this process of care, that they understand it’s gonna be a journey, and that they’re gonna be partners with us in it, because that’s a big deal for patients with chronic illness, whether it’s gastrointestinal or not, when they do find someone that they really connect with, they want to make sure that doctor’s not gonna go anywhere, and leave them. So, making sure that they understand that you’re willing to be their partner is a really therapeutic benefit for patients.
Dr. Buch:
Thank you for that insight. Before we wrap up, I’d like to hear from each of you and share additional insights with our audience. Dr. Drossman, let’s start with you.
Dr. Drossman:
I think the insights for doctors is that you have to understand these disorders. You have to be familiar with what we’re now calling disorders of gut-brain interaction, rather than seeing it as an exclusion diagnosis. Because once you understand it as a real disorder, then you can communicate that to your patients. One of the interesting insights is that when doctors are not comfortable with the diagnosis, they communicate that to the patients. The patients then will walk away saying, “He never gave me a diagnosis,” or, “She never gave me diagnosis.” And there has been a couple of studies that showed that. So, you have to be certain about the diagnosis. Learn about these disorders, and then communicate it to the patient.
Dr. Buch:
And Ms. Ruddy, I’d like to give you the final word. Anything you’d like to share with our audience?
Ms. Ruddy:
For both patients and providers, I would just encourage that you spend a little bit of extra time – I know time is very short, many times, in clinical visits, and physicians don’t have a tremendous amount of time to spend with their patients, but if you can at least carve out three or four minutes to be able to have some uninterrupted time to educate your patient and not just give them a dumbed-down brochure in the lobby and send them on their way, because that will cause a whole lot of additional headaches, with them Googling and trying to figure out what’s going on, and bringing it back to you. So if you’re providing that education that’s accurate, it’s gonna be therapeutic for them. As Doug said, knowledge is power, and so many patients are longing for that knowledge, to be able to feel like they have some sense of control. They understand their diagnosis, they understand the treatment, and they are moving forward in that journey.
Dr. Buch:
Thank you very much. That’s all the time we have for today, but I want to start out by thanking Ms. Ruddy, for helping us get great insight into this unique patient-centered approach. I really appreciate your being here today, Ms. Ruddy.
Ms. Ruddy:
It was a pleasure, and I hope it’s helpful for physicians and patients alike.
Dr. Buch:
And also, Dr. Drossman, it’s a pleasure working with you again today. Thank you for your insights.
Dr. Drossman:
It was wonderful to speak with you again. Thank you.
Dr. Buch:
I’m Dr. Peter Buch. To access this episode, and others in our series, visit reachmd.com/giinsights, where you can Be Part of the Knowledge. Thanks for listening.