How to Have Uncomfortable Conversations With Your Gastroenterologist
If you live with ulcerative colitis (UC), you have probably had at least one uncomfortable discussion in your GI’s office. A GI doctor, or gastroenterologist, is a doctor who specializes in the health of the digestive system, or the gastrointestinal (GI) tract.
To be frank, it can feel scary and embarrassing to talk about bowel movements and blood with an otherwise perfect stranger, especially as a brand-new patient. It actually took me close to six months to finally disclose that I was seeing blood to my pediatrician; when she heard that, she immediately referred me to a gastroenterologist, and I was diagnosed shortly thereafter.
Why do I share that? Because had I shared earlier, I probably could have saved myself some months of pain and gotten on a treatment plan much sooner. I spoke with my own GI, Dr. Gauree Konijeti at Scripps Health, about how to start these types of conversations around UC and its varying symptoms. “Dr. K” is the head of the Scripps IBD program and specializes in both Crohn’s disease and ulcerative colitis. She’s been treating my UC for several years. While I’ve grown to be filter-free when it comes to discussing my symptoms (20 years will do that to a person!), I remember vividly a time before I felt that way. I hope this conversation makes having your own difficult talks a little easier… and remember: There’s nothing to be ashamed of when it comes to managing your UC.
Caitlyn: In the beginning, I know so many people are scared to talk about blood and diarrhea and all of that stuff. How do you support a brand-new patient you’ve never seen who doesn’t want to talk about UC symptoms? How do you create a safe space for them?
Dr. Konijeti: I think it’s something we talk about all day, every day as gastroenterologists, and maybe sometimes we forget how hard it can be for patients to talk about these types of symptoms. When people have felt anxious to talk about it, I’ve reassured them not to worry and that I know all about UC. I just acknowledge that it can feel uncomfortable to talk about these symptoms with somebody else, and say that I want to know everything — there’s nothing you can tell me that I haven’t heard before. I want to know all of it, so please don’t feel shy or embarrassed. The more I know, the more I can help you.
Caitlyn: I know when I was first experiencing symptoms, I was seeing a lot of blood and didn’t tell my pediatrician for six months. When I finally did, I was rushed to a GI. Do you encounter that a lot — patients who are withholding? How do you encourage them to disclose everything, especially if there is blood in the toilet?
Dr. Konijeti: Since UC is something I specialize in, by the time people come to me, they’ve already had to discuss symptoms on some level. They’ve already gone through testing or imaging of some sort. So I tend to see a lot of patients with established IBD who are actually ready to talk about it. But if I were to see someone without the diagnosis and wanted to guide them, I would ask them if they look at their stool. If they’re not looking at their stool, then it’s going to be hard to answer a lot of these questions. From a gastroenterologist perspective, I want to know if they’re seeing blood in it. Most often in the setting of UC, we’re thinking about bright red blood. I’d also want to know if they’re seeing blood on the toilet paper, on the stool or mixed with the stool. Are you seeing blood by itself? How much is it? How often do you see it? These specifics give us an idea of inflammation severity.
Caitlyn: That makes sense. And when I think of my own experience, I’m 120% comfortable talking about my UC now. But so many people aren’t there yet, and it’s still a very emotional experience at each visit, especially if they’re seeing you or someone else after months of looking for answers. How do you comfort them in your office if they are really having a hard time?
Dr. Konijeti: First of all, it’s perfectly normal and acceptable to feel that way, so I really try to acknowledge where they are and that this is hard. It’s been a long road, and I’m always glad that we have an answer, but I know that can be hard to face as a patient. Especially when it’s something chronic like UC, it may not be what they were expecting to hear. Many don’t know what to do with that information. Of course we want to get the diagnosis and symptoms under control, but that can happen over a series of visits. I let patients know that if they want to talk about it tomorrow, I can have my nurse call, or they can come back in at another time. Sometimes they need a moment right then and there, and I’ll offer to step out and give them privacy. I think it depends on the patient and how much it’s impacting them. It’s also really helpful to have loved ones at these appointments, if possible. They can help ask questions that maybe the patient hasn’t thought of or isn’t ready to ask themselves. I do refer a lot of patients to the Crohn’s and Colitis Foundation to let them know they’re not alone and that there’s a community out there who walk in your same shoes. There’s a lot of good resources because a lot of patients at that point want to just get more information.
Caitlyn: That’s so helpful, and I know that the foundation has helped me tremendously with connecting with others and supporting my own journey. It also helps with stripping away the stigma that this “bathroom disease” can carry. It’s much more than that, as we all know, but do those stigmas around bathroom talk or invisible illnesses impact your ability to treat patients?
Dr. Konijeti: Well, you know me! I want to know everything from the beginning, and it always amazes me how much time can go by between the onset of symptoms and a diagnosis. For some, it can happen right away, but for others, they’ve maybe been told a bunch of different things, such as irritable bowel syndrome (IBS) or hemorrhoids. So by the time I see them, they already have those other possibilities in their mind. I can see how if someone was talking about milder symptoms how it may go overlooked, especially if they’re younger. My best advice to patients is that if your symptoms are persistent and not improving, seek medical attention, specifically a gastroenterologist.
Caitlyn: That’s good advice to not ignore symptoms and seek specific support from a GI. And as we all know, mental health can be greatly impacted here too. How much does the discussion of mental health come up for you? What role do you see yourself playing there?
Dr. Konijeti: Mental health is really something I think we should be evaluating more, or at least assess and talk to patients about. It’s certainly very common, and it can also affect disease activity, disease behavior and medication compliance. I wish we had more resources for patients. For example, in our own health system, I don’t have a pool of psychiatrists and counselors that I can refer patients to, but I have a list of resources in San Diego that I can send them to. I think that’s helpful, but it’s also still putting the onus on the patient. In a perfect world, I wish that it was more integrated. Anxiety and depression are so common and expected, especially when you’re going through something so significant. It’s important to build that support network through the foundation, and we need to do a better job of supporting patients. A lot of them also tell me their doctor dismisses the fact that stress impacts their symptoms, and I just acknowledge that stress really can affect symptoms. So then the conversation can turn to, OK, what can we do to manage it? I do tend to send patients to integrative medicine as well; aside from psychiatry, counseling and therapy, other measures like meditation, acupuncture and mind body-work can make a big difference.