Severe Diarrhea in Carcinoid Syndrome

Larry Pleasant explains how he has managed and adjusted to diarrhea, a common symptom of carcinoid syndrome.
PUBLISHED October 27, 2017


Transcript: 

Shubham Pant, MD: So, Larry, as we were discussing different side effects, you said you had flushing and then you had some diarrhea, which started later. Tell us a little bit about the diarrhea—how did it start, how many times did you have to go, what was it like? And you’re a professor, you drive around all the time, you give lectures all over the state in North Carolina. How did that start?

Larry Pleasant: What a topic.

Shubham Pant, MD: I know.

Larry Pleasant: The diarrhea actually, in my particular case, was more debilitating than the flushing, because of my lifestyle, because I spent so much time in the car driving from campus to campus to teach courses. And I was having 3, 4, 5, sometimes 6 episodes of diarrhea a day.

Shubham Pant, MD: A day?

Larry Pleasant: It would often happen very shortly after meals. Sometimes it would happen regardless of whether I had eaten or not. I began to skip meals because I didn’t want to risk having an episode of diarrhea while I was on the road. And I hate to say it, but there were some situations in which I wasn’t able to avoid that. And you can imagine that when you’re in the middle of nowhere driving late at night and there’s nowhere to stop and nowhere to go, it’s a very difficult situation. So, the impact of that on my lifestyle was much greater, for the most part, than the flushing.

Shubham Pant, MD: You’re exactly right because that’s like a big effect on activities of daily living, regular living. This is a chronic thing that you have to live with. And did you have like an app to find all the bathrooms?

Larry Pleasant: Oh, I knew where every bathroom in eastern North Carolina was. Yes, I knew where they all were. I knew how many miles it was to each one. And it’s an insane way to have to live.

Shubham Pant, MD: Is that common Dr. Morse, diarrhea? How do you talk to your patients about that, about this diarrhea coming on? What’s your conversation with them?

Michael A. Morse, MD: One of the things we try to understand from people is what their regular activities are like and how the illness is affecting them. In some people, the diarrhea is so debilitating that they really don’t leave the house very much. They can’t participate in the social activities that they want, or it affects their job. And if that seems to be the aspect of the disease that’s the most debilitating, that is where we want to at least focus our efforts initially to try to control it.

Shubham Pant, MD: Right. Flushing is flushing. You can stop drinking the wine. But diarrhea is different. So, did you plan your lectures around it also?

Larry Pleasant: I did, I did. I planned my lectures around it. I’d make sure that I allowed plenty of time. I always carried with me a go-bag with extra clothes. I did all of those things.

Shubham Pant, MD: Thank you for sharing that fact with us, Larry. I think that’s very powerful and that’s very important for patients to hear that, that they’re not alone. Normally it’s something that people don’t talk about a lot. They can talk about flushing, but diarrhea is something that people don’t talk about, so I really appreciate your talking about it so our patients and other people who hear this say, “You know, we’re not only ones. This is what’s happening.”

Larry Pleasant: It’s part of the package, I’m afraid. I didn’t like it. I found it really distasteful to have to deal with it and I’m thankful now that I’ve been able to get a solution for it.

Michael A. Morse, MD: You brought up some aspects of the diarrhea that I think are important to mention. It doesn’t take very many diarrheal stools a day to affect people’s lifestyle. In fact, there have been studies where they looked at measures of depression, anxiety, and social functioning that, even at about three or four stools a day, changed very dramatically.

Shubham Pant, MD: Which doesn’t seem like very much.

Michael A. Morse, MD: Which doesn’t seem very much; it’s also the characteristics of it. It’s the suddenness, the unpredictability, and the concern about, can I eat or not? Where can I go? Where can’t I go? Or even if you just had a few stools a day, that aspect of the worry about it can have as much of an impact as the actual physical number of events in a day.

Larry Pleasant: I would agree.

Shubham Pant, MD: You’re very right, Dr. Morse. Unpredictability, I think that’s the problem. Because, Larry, I think you dealt with that sometimes after food. But otherwise, it could be unpredictable. If you’re driving at midnight or on a highway and boom.

Larry Pleasant: Yes. I could easily find myself driving late at night on an almost deserted highway, 50 miles from the nearest service station or restaurant or a place where I could use a restroom, and be hit with a bout of diarrhea. So, as I said, I always carried a bag with extra clothes. I always tried to plan my route to know where all of the bathrooms were. And it became a daily part of life for quite a while.

Shubham Pant, MD: Larry, thank you for sharing that. Dr. Morse, thank you about that.

Transcript Edited for Clarity 

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