The Social and Lifestyle Challenges of Living With Ulcerative Colitis (UC) [transcript] [audio]

Guest: Dr. Marla Dubinsky and UC patient Jordan Wilson

Presenter: Neal Howard

Guest Bio: Dr. Dubinsky received her medical degree from Queen’s University, Canada. She completed her Pediatric Residency at Alberta Children’s Hospital, Calgary, Canada and her Clinical Fellowship in Gastroenterology and Nutrition at Sainte-Justine Hospital at the University of Montreal, Canada, She then completed her Research Fellowship in Inflammatory Bowel Disease at Cedars-Sinai Medical Center in Los Angeles, where she then served as the Director of the Pediatric Inflammatory Bowel Disease Center before coming to Mount Sinai as the Chief of Pediatric Gastroenterology and Hepatology at the Kravis Children’s Hospital at Mount Sinai. Her primary research focuses on the influence of genetics and immune responses on the variability in clinical presentations, treatment responses and prognosis of early-onset IBD. Her other interests include the impact of IBD on fertility and pregnancy. She has lectured widely both nationally and internationally and has published in 83 peer reviewed journals including Gastroenterology, The Journal of Pediatric Gastroenterology and Nutrition, Inflammatory Bowel Diseases, and the American Journal of Gastroenterology. She also currently sits on the editorial boards of several leading journals, including Gastroenterology, American Journal of Gastroenterology, and Nature Clinical Practice Gastroenterology & Hepatology.

Segment Overview: Dr. Marla Dubinsky and UC patient Jordan Wilson share some of the ins and outs of living with ulcerative colitis and discuss preliminary findings from a new survey.


Neal Howard: Welcome to Health Professional Radio. I’m your host Neal Howard. Glad that you could join us. With the New Year, everybody wants a fresh start. From new social activities to new relationships, but if you’ve got the chronic disease like ulcerative colitis you might be a little bit reluctant to meet new folks or even talk about your condition. Joining us now to share some of the ins and outs of living with UC, Dr. Marla Dubinsky and she’s joined by Jordan Wilson, a UC patient. Welcome to the program both Dr. Dubinsky and Jordan.

Jordan Wilson: Thank you for having us.

Dr. Marla Dubinsky: Thank you.

N: Dr. Dubinsky, a little bit about yourself, some background.

D: I’m the Director of the Inflammatory Bowel Disease Center here at Mount Sinai Icahn School of Medicine, Mount Sinai and I’m the Division Chief of gastroenterology here at Mount Sinai.

N: We’re talking today about UC or ulcerative colitis. What are some of the symptoms that we should be looking for?

D: Ulcerative colitis is a disease subtype of a bigger umbrella term called inflammatory bowel disease which translates to inflammation of the bowel but for all sort of colitis it’s specifically located in the large intestine or the colon. Since one of the predominant functions of the colon is to absorb water and if there’s inflammation, it can’t do that, so patients end up with multiple bowel movements, often hurried, often associated with abdominal pain tied to needing to run to the restroom. It can happen out of the blue but there’s also this concept of I don’t know if something I’m eating is going to make me feel worse etc, and so there’s this constant feeling like the symptoms will emerge and there’s also patients present with blood in their stool.

N: Now Jordan as a patient, when did you realize that there was something wrong other than just a run-of-the-mill stomach ache or something like that?

J: Back in 2010 is when I was diagnosed and I started to experience symptoms like Dr. Dubinsky just described. Then soon shortly after I kind of knew something was wrong, so I went to the doctor and I was referred to a gastroenterologist and that’s when I was diagnosed.

N: We’re talking about relationships starting afresh in the new year. How has your personal life been affected by UC?

J: Sure. From my personal experience it’s not just these physical symptoms that affect me. My entire support system is affected as well and with all those relationships I had kind of zero social life. I had to put my career on hold. I had a personal relationship that failed unfortunately. And we’re looking at this UC narrative survey, the preliminary findings are showing that I’m not the only patient going through this. There are patients that are putting major life decisions on hold because of their disease whether it’s to have children or to adopt or almost three-quarters of patients that were surveyed said that they felt like they would be more successful if they didn’t have ulcerative colitis in their careers. It’s not just the physical symptoms that are affecting our bodies. It’s every aspect of our life is being affected.

N: Would you say that the physical symptoms and condition outweighed the mental aspect, the psychological or even the stigma of having such a condition as far as your social life was concerned?

J: One kind of leads into the other. You could imagine if you’re having these urgent needs to run to the bathroom sometimes double digits every day., it doesn’t make you want to do much else. One kind of lead into the other and I would say these physical symptoms definitely take a mental and emotional toll on you. They wear you down and as patients we kind of learn to accept this new normal, we say. It’s about bridging this gap in communication between the patients and our physicians to hopefully do away with that new normal because we’re accepting this and it doesn’t have to be that way.

N: Dr. Dubinsky, who’s at risk – old, young, male, female? Who’s at risk for UC or does it not matter?

D: In essence, UC doesn’t kind of discriminate based on any type of gender, for example. We don’t see a significant increase in males versus females. We see disease down to the very young, even in the first year of life up to patients who are in the 70s or 80s presenting. But at the end of the day, if you take the whole spectrum, the average age of diagnosis is smack dab in the middle of college which would be sort of 19 to 20, 18, 21 age range which you could imagine if you have, you’re just plugging along, you go to college and then you get sudden change in how you feel. It can be extremely disruptive and part of the work that we did that we’re really talking about today is the findings from a UC narrative survey but the US findings in particular that actually showed, we have too many patients who are really living with what we define as a new normal. Meaning they were good one day and bad the next and now they think, “Well, this is just how it’s going to be.”. But we’re trying to educate that, it just doesn’t have to be like this and we want them to advocate and share their short term goals with us so that we can reframe our conversation, and one patient to be more proactive and share their experiences and goals with their healthcare professionals. What the survey taught us is that whatever management style you’re choosing, it’s really about that partnership between the patient and physician, because if the patient doesn’t disclose or feel comfortable talking about their symptoms or how the disease is impacting their day to day life, it’s really difficult for physicians to kind of think that they need to change their strategy. I think what the survey really teaches us is that, that kind of symbiotic on the same road trying to achieve the same light at the end of the tunnel is really what allows patients to restore themselves back to health.

N: As a gastroenterologist, is this the first survey that you’ve participated in? What in your opinion the difference in the questions that made this survey a little bit more revealing than maybe some of the others that you’ve been aware of?

D: I think what it validated the idea of this new normal. There has been discussion around them dancing around the idea that – Why aren’t we able to improve patient outcomes when it comes to their day to day activities? And I think what this did is, one it’s very large because it’s part of a global program with over 2,000 respondents or surveys that have been sent out to thousands of individuals. We’re just showing a snapshot of the US component just to say that, we understand that this is still a problem despite changes and advances in therapy, we still have some work to do as a community which includes all stakeholders involved in managing UC.

N: Jordan, you mentioned your support system. When it comes to a support system where can we go and find out about UC? Where can a person who’s suffering or think they might be suffering find some support, some information in some local support groups that you maybe you’ve discovered?

J: Sure. The big one that comes to mind, right at the top of my head is obviously the Crohn’s and Colitis Foundation, and they’re at Where there might be some local support groups, whether it’s through their gastroenterologist office or even a local hospital. They’re out there. It’s just a matter of spreading awareness about these support groups exist.

N: Dr. Dubinsky, Jordan, I thank you both for coming in today. It’s been a pleasure, most informative. I’m hoping that you’ll come back and talk with us, see how things are shaping up with you Jordan and maybe talk some more management strategies for our listeners.

D: Thank you very much.

J: Thank you very much for the opportunity.

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