Cooking show host Sunny Anderson was only nineteen when she was diagnosed with ulcerative colitis, a form of Inflammatory Bowel Disease. But as Sunny puts it, "it sure as heck didn't pick the weak one!" Alongside board certified gastroenterologist Dr. Aja McCutchen, our guests discuss how this disease specifically affects women and Sunny shares her experience of living loud and proud with UC. If you've been recently diagnosed, this candid and informative discussion is an excellent starting place as you begin to navigate a life with UC.
Cooking show host Sunny Anderson was only nineteen when she was diagnosed with ulcerative colitis, a form of Inflammatory Bowel Disease. But as Sunny puts it, "it sure as heck didn't pick the weak one!" Alongside board certified gastroenterologist Dr. Aja McCutchen, our guests discuss how this disease specifically affects women and Sunny shares her experience of living loud and proud with UC. If you've been recently diagnosed, this candid and informative discussion is an excellent starting place as you begin to navigate a life with UC.
Resources:
Note: This podcast is provided for educational purposes only and is not meant to replace discussions with a healthcare provider. Please speak with your healthcare provider regarding any health questions. The opinions expressed in this podcast are the opinions of the individuals recorded and are not necessarily opinions endorsed by Pfizer. Guests in this podcast were compensated for their time. This podcast is only intended for residents of the United States.
Living Fully with Ulcerative Colitis feat. Sunny Anderson
Sunny Anderson:
I moved to Korea in November of 1993. I immediately was having symptoms within a month. I thought it was because I was eating new Korean food, and I liked spicy food, and I had rectal bleeding. And I was like, I need to, you know, curtail some of that spicy food eating. Which wasn't logical, but still, you know, I'm stupid. I was young, whatever I was making up why this was happening to me.
DR. KULISEK
Sunny Anderson was just 18 years old when she started experiencing painful, persistent abdominal cramps, bloody stool and sudden, urgent bowel movements.
Sunny Anderson:
You start saying to yourself, something different is happening here. And those symptoms all together made me say to myself, this isn't right. After a couple of things weren't working all in concert, I was like, alright, I gotta talk to someone about this.
DR. KULISEK
I’m Doctor Nicole Kulisek, a pediatric gastroenterologist and the US Gastroenterology Medical Lead at Pfizer. Welcome to this special episode on the Pfizer Women’s Health channel all about Ulcerative Colitis.
Ulcerative Colitis and Crohn’s Disease are the two most common types of Inflammatory Bowel Disease that cause inflammation in the gastrointestinal tract1. Ulcerative Colitis, or UC, is the most common, affecting an estimated 1.25 million people in the United States2. UC is a chronic relapsing and remitting condition – meaning symptoms come and go, with periods of remission and periods of flare ups. With UC, the body mistakenly attacks the lining of the colon leading to ulcerations and inflammation3.
For some, Ulcerative Colitis symptoms can come with feelings of stigma or even embarrassment, making them difficult to confront head on. And women with UC face unique challenges that can impact their reproductive and sexual health. That’s why today, we’re pulling back the curtain on the realities of living with UC. We’ll dive into symptoms, barriers to diagnosis, and the power of sharing your story.
To do that, we’re first joined by Sunny Anderson, a cooking show host, New York Times bestselling author, and UC patient. As you heard at the top of the show, Sunny was a teenager when she first started to feel that something was not right.
Sunny Anderson:
I had gone through the symptoms for what I felt was a long time, three months of random rectal bleeding, random cramping, the urgency to go no matter where I was, oh my God, I have to find a bathroom.
DR. KULISEK
Sunny decided she needed to talk to someone she trusted.
Sunny Anderson:
Thankfully my dad is a doctor, so I felt very comfortable first calling him and saying, daddy, this is happening, this is happening, this is happening. What does that mean? And thankfully, he knew the department to go to. He said, well, you need to go speak to a gastroenterologist. The first time I'd ever even heard of that type of a doctor.
DR. KULISEK
A gastroenterologist is a doctor that specializes in the digestive system. This can involve treating anything in your GI tract, including the esophagus, stomach and intestines. As well as other organs that contribute to digestion, like the liver, pancreas and gallbladder4. Sunny followed her dad’s advice and made an appointment with a gastroenterologist. After biopsies and tests of her upper and lower digestive tracts, Sunny’s doctor was able to diagnose her with ulcerative colitis5,6. The diagnosis was a relief to Sunny – and made her feel more prepared to navigate living with what she had come to see as a “silent partner.”
Sunny Anderson:
Any disease that's just hanging out in your body or on your mind, it's a silent partner because it doesn't talk to you every day. It doesn't provide something every day. But when it feels like rearing its ugly head or providing something to the situation, here it comes, right? I think in talking about my diagnosis, it makes it less and less of a beast in my mind. More of like, I'm putting you where I wanna put you, right? Like, I'm not afraid. The more information I have, the better. So to me a diagnosis is like a roadmap to figuring out what to do next.
DR. KULISEK
As doctors can attest, the roadmap for UC is one that winds through almost every facet of a woman’s life.
Dr. McCutchen:
Ulcerative colitis affects every single pocket of your life, from your mental health to your relationships, your sexual health, your ability to function at your job. All the things that are impacted are not just unique to women, but women carry a special burden.
DR. KULISEK
Meet Dr. Aja McCutchen, a board-certified gastroenterologist and co-founder of Pandora Health. She currently practices at Atlanta Gastroenterology, a division of United Digestive. Dr. McCutchen has treated thousands of women in the course of her career, and continues to be fueled by the joy of helping patients get their disease into remission.
Dr. McCutchen joined us to share what she’s seen firsthand in terms of how UC can affect women at every stage of life. For example, Dr. McCutchen says that women with UC may experience sexual symptoms like pain during intercourse.
Dr. McCutchen:
The data shows us that about 40% of women with inflammatory bowel disease will experience, vulva vaginal symptoms as well as sexual dysfunction7,8. Then we already have an orgasm gap between men and women9. And this can further be potentiated by the fact that there is active inflammation.
DR. KULISEK
Outside of sexual satisfaction, women with UC who are trying to conceive may face additional hurdles. Menstrual cycles, fertility and pregnancy can all be disrupted due to disease activity10,11. Dr McCutchen says the most important factor in reducing these risks is to have the disease in remission at the time of conception12.
Dr. McCutchen:
It's better for us to go into a situation where we have your ulcerative colitis controlled. A lot of women are concerned about some of the medications that we use, but we know that the pregnancies can be very successful in ulcerative colitis if we have disease under control.
DR. KULISEK
And for health later in life, Dr. McCutchen adds that UC may affect menopause as well.
Dr. McCutchen:
What the data is suggesting is that women are entering menopause earlier when they have inflammatory bowel disease, in particular ulcerative colitis13. But again, we need rigorous studies to understand if this is actually the case, why is this happening and what we can do to prevent or mitigate that particular situation.
DR. KULISEK
Women are already at a higher risk than men of developing anemia14,15. But these risks are intensified with UC patients16. And as Dr. McCutchen points out, this can create ripple effects.
Dr. McCutchen:
When we think about the causes of anemia, well guess what? Women also can additionally lose blood through heavy menstrual cycles. So you compound that with what they're losing in their gastrointestinal tract. And now you have a woman that is very fatigued and she's supposed to show up in all of these various aspects of her life and, and potentially be a mother, wife, whatever else she chooses to be and it is basically, a double stigma that they're experiencing. Now I'm having fatigue. I'm, I'm having to talk about my physical symptoms, but there is a significant mental impact as well, and the mental impact can be amplified in women.
DR. KULISEK
As we heard earlier, Sunny’s gastroenterologist listened to her symptoms and arrived at a clear diagnosis. But Dr. McCutchen says women often face far more difficult diagnostic journeys.
Dr. McCutchen:
In our traditional healthcare system, women are more often dismissed than men. Now in the case of ulcerative colitis or inflammatory bowel diseases, the statistics still show, and the data still shows that it takes women about double the amount of time from the onset of her symptoms to her diagnosis as it relates to her male counterparts17.
DR. KULISEK
Dr. McCutchen explains that many of the patients she sees come to her after having their symptoms misunderstood or dismissed by other providers.
Dr. McCutchen:
If women present with abdominal pain, for example, they are more likely to be misdiagnosed. They are more likely to have this abdominal pain attributed to either their gynecologic health such as endometriosis or related to their menstrual cycles, or they are what they call gaslit, and what I have to agree with, to believe that this is all in their head. It's not all in your head.
DR. KULISEK
While Sunny’s diagnosis journey didn’t involve a misdiagnosis or gaslighting, she did run into what she perceived as gendered misconceptions about the disease.
Sunny Anderson:
First off, the idea that stress caused this and that I just need to calm down, right? I think every single woman I've talked to about this has heard this, but the men, for some reason, they don't get that symptom. They don't get that, that, that story. I'm like, honey, first of all, I'm gonna always be stressed, and I know you're stressed too. So do you have this? No, you don't. You know? But then also, like, what happens when I calm down? It's not gonna go away, so it can't be the stress. Right? Stress is not causing UC. Diminishing your stress is not gonna get rid of UC. Your colon doesn't care if your boss is marginalizing you or not. Okay? It's gonna bleed. It's gonna have the urgency to go, it, it has no idea what's going on in politics or religion. Your colon's gonna do what your colon's gonna do.
DR. KULISEK
And while stress does not cause UC, Dr. McCutchen explains that patients with inflamed intestines are significantly more at risk of suffering from depression and anxiety18,19.
Dr. McCutchen:
If a woman comes in and she's experiencing GI distress and you're thinking she's anxious, she very well may be anxious. And it's not that she's making it up. It's not reactive. It is actually chemical changes that are taking place. What do those chemical changes look like? There is neuroinflammation that is occurring in the gut that is causing chemical changes in the, in the brain as well. The brain and the gut are like two besties. They're constantly texting with each other, or they're like two siblings, however you wanna describe it. In fact, in utero, they are born from the same parents, the neural crest cells20. And that's why the gut is the second brain. The brain has billions of neurons21. The gut has 500 million neurons22. And these two are in constant communication right? And so what happens is, I also tell my women, you're not making this up. 90% of your serotonin, your feelgood hormone is produced in the gut23. Now, this doesn't mean that it's necessarily crossing into your brain, but it is impacting motility. It is impacting gut microbiome. There's all kind of processes that are taking place.
DR. KULISEK
Another misconception sometimes faced by patients is that only certain demographics are affected by ulcerative colitis. For the record, anyone can be diagnosed with Inflammatory Bowel Disease, no matter their lifestyle, age, body type, race, ability, ethnicity, sex, gender identity, sexual orientation, or culture24,25,26. In fact recent studies have shown us that the rate of cases of inflammatory bowel disease in minority populations increased by over 130% from 1970 to 201027.
And Sunny says that common misunderstandings around IBD still persist.
Sunny Anderson:
I think the most surprising is actually from IBS patients not understanding the difference between IBS and IBD. Yeah. So I, I think that a lot of times people think, oh yeah, I've, I've got issues with my stomach as well. Like, you know, but this is different, right? This is the, the end of your, your intestinal tract. This is the colon, it does so much work for your body.
DR. KULISEK
Let’s take a moment to clarify – Irritable Bowel Syndrome refers to a group of symptoms primarily concerned with a disruption in bowel function. There is no inflammation in the colon28. Inflammatory Bowel Disease, however, is a disease with potentially destructive inflammation to the intestines29. Getting this distinction right in a diagnosis is essential. Dr. McCutchen says the best way to make sure you understand your condition is to ask your doctor outright.
Dr. McCutchen:
So the patients should go in and ask the question straight out, does this sound more like irritable bowel syndrome where there is no inflammation, but there may be some bloating and abdominal pain that's relieved with bowel movements? Or are my symptoms more consistent with inflammatory bowel disease or ulcerative colitis?
DR. KULISEK
Another helpful thing to have when speaking to your doctor is a record of your symptoms. Dr. McCutchen says you can start tracking your symptoms with one easy move – she wants you to, “look back at it”.
Dr. McCutchen:
The reason I always tell my patients to look back at it, just take a minute and look back at it, is because if the belly is the seed of the soul, the stool is the messenger, literally the stool should be considered the sixth vital sign. And the stool is a critical data point that allows us to understand what is going on with our gut. And you know, the way that I think of the gut is it's a garden and it is complicated, it’s teeming with organisms. There's all kinds of processes happening there. That's where 70% of your immune system lies30. And so the only thing that we can do, in order to understand what's happening on a day-to-day basis, is to take a look at the output. And so everyone should take a look at what is coming out of their body, in particular looking back at their stool.
DR. KULISEK
Because UC affects everyone differently, there is no one recommended diet for those affected by the disease31,32. And for someone like Sunny, who has made a career as a caterer and cooking show host, she didn't want UC to alter her connection with food.
Sunny Anderson:
The relationship that I've had with food has always been my happy place. And so I was kind of, like, angry I think when I was diagnosed with UC, because I was like, oh, you're not about to boss me around and tell me what I can and can't eat and can and can't do.
DR. KULISEK
Even still, Sunny has found that “looking back” at her stool has helped her to identify patterns.
Sunny Anderson:
But then you look in the toilet after you do a, a number two, and you're like, oh… so… the lettuce is not working, you know? Oh, interesting. You know, and then you start realizing, I can't, you know, I just, I can't do this to my body. And I've talked to some patients, and this is the beauty of having this community is you can kind of say the things that you don't normally say is, we all agreed one time we were all chatting, there's a smell to a flare up. There is a specific way our poop started to smell when we were in a flare up, we could tell it. And so, you know, there they came those moments where I was like, ah, you know, lemme pay a little bit more attention to what's happening when I'm in a flare up, because I could see what wasn't happening in my intestinal tract.
DR. KULISEK
Once you’ve gathered some data by “looking back at it”, Dr. McCutchen recommends you then bring this information to your gastroenterologist and ask a simple question:
Dr. McCutchen:
Are my symptoms normal? And then that allows us to open this conversation around what exactly does normal look like. Because some people don't even know what normal bowel movement frequency is and what that consistency is supposed to look like.
So what is normal? So normal is anywhere from three bowel movements per week to three a day. This is typically not associated with bowel urgency. There is not persistent abdominal pain after bowel movements. And so that's something that patients need to be aware of.
DR. KULISEK
And while it may seem simple to just ask, “are my symptoms normal?” In the case of UC, people are often hesitant to share symptoms with their doctors.
Dr. McCutchen:
We have so much stigma around conversations related to our bowels. We don't necessarily go around saying, hey, you know, how was, how did your stool look today? You know, how many bowel movements did you have today? Did you have any bowel urgency? Was there any blood in the stools? And that's why I think it's so important that we begin to normalize these conversations because normalizing these conversations can really lead to not only improve quality of life for our patients in terms of being able to communicate their lived experience, but, you know, quicker time to diagnosis and ideally a quicker, time for them to get to into remission.
DR. KULISEK
For her part, Sunny, has described herself as –
Sunny Anderson:
One of those humans born with zero shame…
DR. KULISEK
Sunny sees her experience with ulcerative colitis as an opportunity to help end the stigma around her disease.
Sunny Anderson:
To me, it's more of an empowering thing, you know, it sure as heck didn't pick the weak one. It picked the girl that's about to get out there and talk, so jokes on you, UC.
DR. KULISEK
And talk she certainly has.
Sunny Anderson:
This is a disease that can make people shy in, in talking to their coworkers, their friends, their family. And because I never really have felt that, I want to empower people that need to, to do it. I think that there are some people that wanna stay quiet and like, why? They don't have to tell anyone it's their business. But if you feel like I need to find a path to telling my boss what I'm dealing with or my family so they understand and have more compassion, I would offer, just rip it off like a bandaid. You know, just sit 'em down and say, Hey, I got something to say.
DR. KULISEK
Sunny has found that when she speaks directly and honestly about her experience, people respond with kindness and care.
Sunny Anderson:
When I first got my jobs at radio stations after I got hired, like, you know, I would say, hey, just so you know, I might have to take a break to use the bathroom, and then I'll put on a long song. Or what's the contingency plan here? You know, but I've never had a problem talking about it. And I really would encourage anyone that wants to, to just, just do it and dare the person to judge you. Like, how can you judge someone that's pouring out their heart and their fears, and telling you what they're handling day to day? Most people don't have a disease where they have to think about it day to day. And then most people might have a disease where you don't have the same indicators where you're not bleeding, you don't have cramps that are, like, debilitating. You're not out at a festival or on a, a car trip or walking into a building immediately trying to figure out, where's the bathroom? Just in case you need it. You're not packing a bag, like a go bag for your car with like wet wipes and panties and things to clean up and an extra pair of this, you know. So when we're in the disease and we have to do these things to take care of ourselves, when we finally decide to tell someone else, I hope conversations like this not only make the person that wants to tell their story comfortable, but the person that is to receive the story, able to receive the story. So that's what I hope.
DR. KULISEK
And this honesty and openness extends to Sunny’s personal life as well – starting right after her diagnosis.
Sunny Anderson:
The guy that I was dating at the time, I used to have, uh suppositories that I had to use because of this disease. And I'll never forget, pretty much every day the sheets were ruined, waking up. And it was just like, this is what it is dear. You know, deal with it. I, I feel like if I'm okay with it, everyone else should be okay with it.
DR. KULISEK
Far too often, however, Dr. McCutchen sees people in her practice who are hesitant to share their diagnosis with their intimate partners.
Dr. McCutchen:
I've had so many women, especially that are just completely afraid to divulge their illness to their partner. I had that recently and what I told my patient was that, guess what, if you are that afraid to divulge this to your partner, that may not be your ideal partner. Because why would we want somebody that is going to judge us internally? We have to step outside and be judged all day, every day, right? In our everyday lives. And you confound that with the fact that you may have some, you know, external situations going on. You may have an ostomy bag, you may have to wear a diaper at times. There are some things that can happen that are beyond our control. And so, we want our patients to have a restoration of quality of life in this condition that is part of our goal, and to meet that, it takes a village and a healthy village to do that.
DR. KULISEK
While the “healthy village” Dr. McCutchen mentioned certainly involves friends, family and supportive partners – there’s also a community of fellow UC patients who are ready to share in the journey. Here’s Sunny again.
Sunny Anderson:
Let me tell you something. When I was diagnosed with UC, it was 1994. So I call it the dark ages, meaning there was no internet, there was no social media. Most of your information came either from your physician, folklore or maybe you went to the library. Now, if you're diagnosed, my goodness, I believe the first place after your doctor is go online to trusted sources and, and read up and learn. And I say trusted sources by meaning, you know, not the blogosphere, not the people that say they can cure a disease. You know, I'm not into that. I'm more into leaning on my physician and my doctors, and, and things that are pretty solid in science, to be honest with you. But find your community online because it's there. Now, there are Facebook groups, there are organizations dot orgs that do events year round around the country and the world. There are just so many outlets for us right now, which is why I continue to do this, because these are the things I wish I had when I was diagnosed.
DR. KULISEK
The solidarity Sunny has experienced among fellow patients has felt invaluable.
Sunny Anderson:
What I feel like I'm getting from the UC community and being a patient that's out loud, it's the same reason why there are book clubs. You could read a book by yourself, but don't you want to talk to someone else about what you thought about this and that. It's the same reason why people have knitting clubs. It's a club. It's a club of, of not our choice. We didn't decide to get this disease, but now that we have it, I wanna talk to people that get it. I wanna talk to people that are okay with me crying about something simple to someone else being stressed out about packing my bag for a long trip. Or, even the smell of, of what we're doing or the looks of what we're doing. And I wanna talk to someone that's got pictures of their poop in their phone, right? That's okay with showing me a picture of their poop. And it's not gross. Ah, I get goosebumps, right? These are my people. And it's, uh, it's a lonely world in your head until you open your mouth and you say the thing that you think is so unique to you, and you realize, you too? And then you realize you've got a defacto friend for life, right? If you so choose. So that's what I really like. I know I have met so many people that have ulcerative colitis. I cheer them on, they cheer me on. If they're on social media saying they had a bad day, or their colostomy bag just popped, you know, girl, how'd you clean that up? I hope you had enough wet wipes. Like, these are your friends that are going through something that is so unique and, and so different to everyone, but you still have a shared experience. So for me personally, there's no cure for UC. All we can do are things to help us live a little bit of a better life with it, hopefully get it into remission, hopefully have more days at work or more days in life. It's not going anywhere. It's literally a silent partner. So I'm dealing with it, and I'm dealing with it the way that makes me feel powerful and not weak.
DR. KULISEK
If you’re listening to this and either you or a loved one has recently been diagnosed with UC, Dr. McCutchen wants you to know that your gastroenterology team can help you reach those good days.
Dr. McCutchen:
We are here to work with you. We are here to instill hope. We are here to make sure that you do have a normal quality of life, that you are not significantly impacted by this disease in a debilitating way, and if you are, that we will continue to work relentlessly to try to find solutions for you, in a holistic manner. And I just wanna tell women, listen, advocate for yourself. Track your symptoms, show the data. It is not all in your head.
DR. KULISEK
And if you’re comfortable speaking out and sharing your symptoms with the people in your life, Sunny says it can pay dividends.
Sunny Anderson:
So if you're 18 or 19, or any age young, just being diagnosed, and you have a little bit of trepidation about talking about this, just know that whoever you're talking to, they either have had symptoms of something or they know someone that's had symptoms, and all you're doing is really educating. So if you could put yourself in the mind of a teacher, that will make you feel a lot more comfortable. Instead of you're talking just about you, you're talking about this entire disease, and you might be helping someone down the line. I cannot tell you how many times I have told someone about my symptoms and I've seen it click with them. Or they'll say to me, I gotta go to the doctor. Or they'll say to me, I think I should talk to my friend about this. So it sounds cliche, but one by one, you can literally make some change.
DR. KULISEK
If you’ve been diagnosed with UC, please visit ThisIsLivingWithUC.com, to find resources and tools to help you have a productive conversation with your doctor. We’ll have a link to ThisIsLivingWithUC.com in the show notes.
Thank you for listening to this special episode on the Pfizer Women’s Health Channel.
[Credits]
This podcast was created by Pfizer and hosted by me, Dr. Nicole Kulisek. It’s produced by Acast Creative Studios. Follow the Pfizer Women’s Health podcast, wherever you get your podcasts.
Special thanks to all our guests and thank you for listening.
This podcast is provided for educational purposes only and is not meant to replace discussions with a healthcare provider. Please speak with your healthcare provider regarding any health questions. The opinions expressed in this podcast are the opinions of the individuals recorded and are not necessarily opinions endorsed by Pfizer. Guests in this podcast were compensated for their time. This podcast is only intended for residents of the United States.