Patient Perspectives: Managing Ulcerative Colitis
Butts & Guts is excited to announce our new Patient Perspectives series, where from time to time Cleveland Clinic patients will join Dr. Steele to discuss the treatment and management of their GI disorder. Today's episode features Mikayla, who shares her story of living with ulcerative colitis and being an advocate to other patients.
Patient Perspectives: Managing Ulcerative Colitis
Scott Steele: Butts & Guts, a Cleveland Clinic podcast exploring your digestive and surgical health from end to end.
So, hi again, everybody, and welcome to another episode of Butts & Guts. I'm your host, Scott Steele, the Chair of Colorectal Surgery at the Cleveland Clinic in beautiful Cleveland, Ohio. And today I'm super excited to be hosting our first Patient Perspectives, with the topic of managing Ulcerative Colitis.
Joining me today is Mikayla Finnerman and Dr. Amy Lightner. Amy is an Associate Professor of Surgery in Colorectal Surgery here within the Department of Colorectal Surgery in the Digestive Disease & Surgery Institute. And she's also an Associate Professor of Inflammation and Immunity at Lerner Research Institute. Amy's also a returning guest here on Butts & Guts.
And Mikayla, thank you so much for joining us on Butts & Guts.
Mikayla Finnerman: Yes. Thank you for having me.
Scott Steele: And Amy, welcome back to Butts & Guts.
Amy Lightner: Thank you. It's a pleasure to be here.
Scott Steele: So for all of our listeners out there, they know I like to kind of give a little bit of a background. And if you haven't heard Dr. Lightner's background, Amy, let's start with you. Give us a little bit of background about where you're from, where'd you train, and how did it come to the point that you're here at Cleveland?
Amy Lightner: Yes. I'm from San Diego, California and spent the majority of my time in California and then in Boston for medical school. Trained at UCLA for general surgery, and then went to Mayo Clinic for colorectal fellowship, where I stayed on for a few years. And then had the opportunity to come here and be able to focus my practice and research practice on inflammatory bowel disease and joined the group here. It's been a great experience.
Scott Steele: And we are so excited to have you here. Mikayla, tell us a little bit about yourself. Where are you from? Give us a little bit of background about you.
Mikayla Finnerman: So I am from Sturgis, Michigan. It's in the Southwest corner of the mitten. And I grew up in Sturgis, I live in Sturgis now. I have my Bachelor's degree in Psychology. I studied at Western Michigan University. I am 26 years old and I have a beautiful one and a half year old daughter.
Scott Steele: Well, that's fantastic. And we were so glad we were able to get to know you. So Amy, tell us a little bit about this topic we're going to discuss here today, about ulcerative colitis. What is it, how does someone end up with ulcerative colitis? And just give us a little bit of background to that.
Amy Lightner: Yeah. So ulcerative colitis is an inflammatory condition of the gastrointestinal tract that affects the colon and the rectum. And it usually affects patients when they're young. So in their 20s, like Mikayla's age, sometimes older patients above the age of 60. But a lot of times we'll see these young patients that come in and they have significant symptoms. They may have diarrhea, blood in their stool, a lot of pain, a lot of crampy, abdominal pain.
And unfortunately, we still really don't quite understand what causes it. We think that it's an over-activation of the immune system, because there's a lot of inflammation and the immune system doesn't seem to be working quite right in the gut. There are some patients that have a family history, but the majority of patients really don't even have a family history of ulcerative colitis or inflammatory bowel disease. So we still don't really have an exact understanding of what causes it.
And so what we do is we give patients systemic immunosuppression. So things like Remicade, Humira, these biologic drugs that work as a systemic immunosuppressive. And we're still not really treating the underlying cause of the disease, because we still really don't understand it. And while many patients may do well on these medications, there's still about 20 to 30% of patients that will need surgery.
And what surgery entails, and Mikayla will tell us a bit more about her experience, but taking out the whole colon and the rectum. And sometimes doing a reconstructive pouch surgery so that people can have continence as they did before surgery.
Scott Steele: Mikayla, let's start out with you. Take me back to your time when ulcerative colitis kind of reared its head. What were your initial symptoms? How old were you and what was going on in your life, and what were your thoughts at that stage?
Mikayla Finnerman: So in 2012 ... I remember this to the exact day. It was my freshman year of college, I'm 18, I'm excited to be away. And I remember this one time I went to the bathroom and boom, there was blood. So right away, I started freaking out. I had no idea what was going on. I was scared. I went to the doctors, had some tests ran and that's when I was diagnosed with ulcerative proctitis. So that's the inflammation in the rectum. It hadn't gone up into the whole colon area yet. So they had said, it's ulcerative proctitis, gave me some suppositories to kind of manage that right there at the site, and sent me on my way.
On and off for the last ... six years, so from 2012 to 2018, I dealt with the rectal bleeding, the cramping. I had chronic constipation, bloating every once in a while. Things weren't consistent though. So I would have like three really good days and then like a week of really bad days. So it was really hard to have faith in the treatment because some days would be way better than others.
Scott Steele: It must have been pretty scary. I mean, what type of emotions where you're going through?
Mikayla Finnerman: I dealt with a lot of anxiety, thinking, what else is wrong with me? What else could be wrong? What else is going on? Are the doctors doing enough tests? So I dealt with a lot of anxiety. And then I dealt with a lot of constipation, but there were days when I dealt with diarrhea that I couldn't control. So that anxiety spiked like, where's the closest bathroom? I started kind of isolating myself from social situations because I was embarrassed about having to go to the bathroom, or going and not being able to go.
And so, I mean, it took a toll on me, being my first year of college and then throughout my four years of college. It was definitely a different experience, but it did lead to a lot of anxiety.
Scott Steele: Yeah. I can only imagine. As I always say, people will talk about a lot of different things, but your bowel movements, your bowel habits might be not at the top on the forefront, especially when you're meeting new people and doing new things. So pretty scary along those lines.
So flash forward, give us just a taste of what type of treatments did you have, and then eventually, how did it come to the point that you hooked up with Dr. Lightner at the Cleveland Clinic?
Mikayla Finnerman: In 2016, that's kind of the turning point from my ulcerative proctitis to the ulcerative colitis. So it moved into my entire colon and I had gotten a couple of colonoscopies and that's how they diagnosed that. At that point, I was living in Detroit, my husband had gotten a job up there. So we were living up there, I was two and a half hours away from my family. My symptoms started getting worse. I saw a couple of different surgeons up there. And I mean, honestly, I just became hopeless.
I became hopeless that I was only going to be on steroids for the rest of my life. And I didn't really have any answers, just kind of some symptom management at the time. Every time that I went into the ER, because I was dehydrated or just in so much pain, they would just put me on fluids, up my dose of steroids, and send me home. I got a consultation at another big hospital. And that surgeon looked at me and was like, well, we're just going to have to take your colon out. And I was 23, 24 at the time. And I looked at him and I was just so scared. And I was like, no, there has to be more options.
Fast forward to last year, in 2019, I got so sick. I lost 30 pounds. I couldn't keep any food down. My stool was 100% blood. Now I was becoming so malnourished that I wasn't going to survive much longer. So that's when I found myself driving to Cleveland Clinic saying, I need more answers, this is not okay. A lot of doctors just kept telling me that it's in my head, I'm making this up, I'm making it worse by having anxiety about it.
So I went to Cleveland, that's where I met Dr. Lightner. And basically, the rest is history. She offered me support. She offered me options that no other surgeon had. And she gave me the opportunity to get my life back, which was that three-step J-Pouch creation.
Scott Steele: So that's fantastic. And now we're so glad that you found your way here. So Amy, a couple of points that I just want to get your input on. So first of all, is this an unusual or kind of a pretty usual scenario? And then can you talk about the aspect of this so-called migration of ulcerative colitis, where it starts out in one spot in the rectum and works its way backward, is that common as well?
Tell us a little bit more about your perspective of, Mikayla walks through your door and you get that first opportunity as a surgeon to kind of go through her records and then start along the treatment path.
Amy Lightner: Yeah, so unfortunately it is pretty common. I think that a lot of young people are affected, as Mikayla described, and really scary experience. A lot of unknown, a lot of uncertainty, a lot of feeling really isolated and not knowing lot of other people that perhaps have experienced similar symptoms or the same disease. And so it can be really scary time and very anxiety provoking.
And I think initially, a lot of patients, they have some inflammation in the rectum, they have some bleeding. They're evaluated and they may be put on a topical type therapy or steroids and given some pain medication. Eventually, yes, the inflammation starts in the rectum, that's typically where it starts, and then will start to migrate upward throughout the remaining part of the colon. And that is the normal trajectory of the disease.
And as Mikayla said, usually there's good days and bad days. So there'll be this relapsing, remitting. So patients will have periods of time where they feel very good, and then they may have a flare where they end up in the hospital and need IV steroids and stronger medications. And then they may go back to feeling good again. So I think it becomes a little bit confusing as to what are the best treatments and why am I in this state of where some days I feel good, some days I feel bad.
And it becomes a journey in terms of how to appropriately treat it with the right medication. So a lot of patients will start out perhaps on kind of easier medications, orally or topically from the rectum. And then they may move on to some biologics where they're either getting that intravenously or injections that they give to themselves. And they may find themselves getting a consultation with a gastroenterologist and having a colonoscopy to evaluate the disease progression and see how much inflammation there is in the colon.
And then eventually, they make their way toward ... Either they achieve remission with those medications and feel pretty good. And they may feel good for a period of time, and they may again, have to change medications. Or they may have a significant flare and end up in the hospital. And that flare sometimes doesn't get better, which is what happened in Mikayla's situation. And that's typically when the surgeon gets brought in for a conversation about, this patient's no longer responding to these medications and now we need to think about an operation.
And we're trying to slowly change that and bring the surgeon into the equation earlier when patients are more in the outpatient setting and maybe even feeling good, just to educate them about what are the options in the future. If surgery ever does get put on the table, it's nice to hear about it and learn about it, I think earlier than when you're really, really sick and in the hospital hearing about it for the first time.
But still, despite all the medications that we have, and we've made a lot of advances on the medical side, and despite all of that, there still is a significant proportion of patients that still need surgery. So it's good to have the conversations early, good to be educated early. And I think just the better and more information that we can give patients, the less anxiety and the less uncertainty like what Mikayla experienced.
Scott Steele: So Amy, we have had different podcasts in the past talking about ulcerative colitis and talking about the J-Pouch and other things. And I encourage all of our listeners to go back to some previous podcasts about that. But for the listeners who may not either remember or be as aware of it, very briefly, can you tell us, the three-step J-Pouch, what does that all entail?
Amy Lightner: Yeah. So we try to break up the surgery into three stages, because typically by the time we're operating on patients, they may be quite sick as Mikayla was. And perhaps they're malnourished, they've been losing weight, they've had blood in their stool so they're anemic, and they might be on either steroids or these other immunosuppressive drugs. So what that means is, the first stage is we take out the colon. And we usually do this laparoscopically. And a patient will have an ileostomy or a stoma or a bag on the outside and a remaining portion of rectum on the inside. And then we wait a few months.
So we wait about three months, so their nutrition can improve and the anemia to improve and to be able to get off all those medications that they've been on. And then after about three months, patients will come back and that's when we do the big surgery to construct the J-Pouch. So we remove the remaining rectum. We construct a J-Pouch with small intestine, and we bring that down and connect that on top of the anal sphincters. And then we protect that connection that we've just made with an ileostomy, or again, a bag upstream from all that. So that connection has a few months to get a chance to heal.
And then a few months later you come back again and then we take down that ileostomy. And then that's when you get to use the J-Pouch for the first time. So it's three procedures over the course of a total of six months. But it really allows us to do the procedure safely and allows us to do the J-Pouch construction when the patient is healthy, to give them the optimal chance to heal that kind of crucial connection that we make. And then to protect that connection for another few months.
Scott Steele: So Mikayla, at this stage, obviously it sounds like you were pretty darn sick. And you had given up a lot already and really been fighting hard to try to keep a hold of your colon. And now somebody comes up to you and tells you, not only do we got to take out your colon or possibly your rectum. But here you are, at whatever stage you are in life in college, or just out of college, or just married or thinking about being a mom or a new mom, and somebody tells you, you got to wear a bag. What's going through your mind.
Mikayla Finnerman: Oh, I was like, nope, it's not going to happen. I'm not going to do it. So at this point, I had been married for a year, year and a half. I had a six month old baby. And I was like, there's no way I can have this ileostomy bag. I am 26. I'm just, I'm too young for this. I'm not doing this. It was an image thing for me at first. And then, how am I going to take care of an infant and a ileostomy bag and deal with all the poop? Not just my baby's, but mine too.
So there was just so many questions and frightening thoughts that were going through my head, like, there's no way I can handle all of this.
Scott Steele: And so you unfortunately, or fortunately, did go through with this. Walk us through your journey. What did you find out? What did you find out about yourself, about dealing with ileostomy? And as well as kind of the three-step to the point where you're at the pouch today?
Mikayla Finnerman: So I remember the day that Dr. Lightner came in. I was in the hospital because I was admitted and I was so malnourished. So from that point, they were like, you're going to be on a feeding tube for six weeks. Let's start some antibiotics, let's get you healthy. And you feel better and you continue your biologics. I was at that point going to try a new biologics because I was still not okay with the surgery option.
So she sat down with me. She kind of explained everything, validated my feelings, respected my feelings. Told me that I could totally try the biologics and just reach out if I was having more problems. So I leave the hospital and I'm on a feeding tube. I get better, nourish wise. And I'm still having all of my symptoms. And I'm like, this is not a life I want to live. I messaged Dr. Lightner and said, I can't live with this pain anymore. I want my life back. Let's do the surgery.
Three days later, here I am having the surgery. I mean, she knew that's what I needed. So I had the surgery. I was so scared, but I knew at that point I couldn't live in the pain and be a mom and be a wife and live in that chronic pain and all of the symptoms I was dealing with. I couldn't live with it.
Scott Steele: Mikayla, give us an update now. How are you doing now? What do you say to the people out there that are thinking about this process? What did you find out along the way?
Mikayla Finnerman: I want to rewind just a little bit from just now. The day after I had my colectomy, I felt amazing. I so regret not doing it sooner. So then the second surgery was a walk in the park. I already knew what to expect. Nothing was going to change. I still had the ileostomy. And I almost didn't want to do the reversal because I felt so good. And I never knew that I could be so confident with the ileostomy, but I was, because I felt better and I was able to do everything. I had no limitations.
So in March of this year, I had my reversal. And I mean, it takes some time to heal, just like with any surgery, but I'm five months post-op and I'm working out every day. I'm taking care of my daughter now. I can play with her. I can eat whatever I want. I still avoid some things that could potentially cause blockages, but I feel like I have 100% of my freedom back.
Scott Steele: Amy, what's the take home message for our listeners about this entire process, what would that be?
Amy Lightner: Yeah, I think there's a few things. It's definitely a journey, and it can be scary at first. But I think that trying to get in early with the gastroenterologists and ask a lot of questions about what the treatment options are and is surgery an option in the future and just try and gather as much information as you can. And to that point, sometimes it's okay to ask to talk to other patients too.
Mikayla has been an amazing advocate for some of my other patients. I have some other young females who have come down the line and they've been so scared to have surgery and so scared to have an ostomy. And I reach out to Mikayla and say, hey, do you mind calling this patient? I think that they could really benefit from talking to you, because you've gone through it, and not just talking to the physician.
And I think getting that other perspective to not feel so alone with a disease or alone going through the surgery and reaching out to other people who've gone through it and creating a support network has been really great for my patients. And I really commend Mikayla for doing that. And I encourage my patients as they go through it that they can also give back by doing that.
Scott Steele: And Amy, one last question that may come up, especially when we have a disease process that affects young patients and young women of childbearing age. Can you talk very quickly about what to expect in that arena, and then having kids and the ability to have kids in light of the surgical or the disease process itself?
Amy Lightner: Yeah, absolutely. So in terms of the disease process itself, if you're really, really sick, it can be really challenging to get pregnant and carry a child to term, because you have so much disease and you may be on a lot of medications. So the first thing is if you are really sick to try to get your disease under better control and try and get your nutrition better to optimize for you and baby.
And in terms of surgery, now we do surgery with laparoscopy and robotics and we can really have a minimally invasive approach and not have these big incisions that we used to make with open surgery. So we're seeing a lot less adhesions and a lot less adhesive disease, and that's really been a significant impact in improval for females that later want to be able to get pregnant and have a child. It definitely allows them to do that. And certainly even with a pouch, you can get pregnant and have a normal, healthy baby and normal delivery.
Scott Steele: And Mikayla, what advice would you give, or do you give, it sounds like, to patients who reach out to you and want to know your thoughts on this whole journey?
Mikayla Finnerman: The first thing I tell them is advocate, advocate, advocate for yourself. If you have a bad feeling about something or the treatment that you're on, it's okay to get a second opinion. And it's okay to go to another place that maybe has a bigger name for that specific disease that you're dealing with.
The second thing is, never let anybody invalidate your feelings or your symptoms. I was told that it was in my head so many times, and then I started to think it was me. So advocate for yourself, believe in yourself, and join a support group if you know of any or reach out to somebody. I know that I'm in a couple of support groups and it has been the best thing ever to know that I'm not alone.
Scott Steele: Well, that's fantastic. And we are so glad that you were able to come here. And also, congratulations on all ... Your strength of character, strength of mind, and strength of body to be able to work your way through this.
And for all the listeners out there who tuned into Butts & Guts before, you know I like to end with our guests and in this case, Amy has already been through this. So Mikayla, we're going to end up with you with a couple of quick hitters. So first what's your favorite food?
Mikayla Finnerman: Pizza.
Scott Steele: Fantastic answer. What's your favorite sport?
Mikayla Finnerman: Tennis.
Scott Steele: What's your favorite animal?
Mikayla Finnerman: My favorite animal is actually a cow.
Scott Steele: I ask this of all of our guests, but since you're from Michigan, I will ask you instead, what is your favorite thing that you found out about Cleveland in coming down?
Mikayla Finnerman: I mean, my favorite thing about Cleveland is that they're number two ranked in hospitals.
Scott Steele: Well, that's fantastic. So thank you both so much for joining us on here in Butts & Guts. And I just want to reiterate to everybody out there, the importance of going to doctor's offices and hospitals for not only standard appointments, but also those preventative screenings. And definitely, if you're having some ordinary issues that just don't make sense, please, please, please seek medical care.
And here at the Cleveland Clinic, we're doing everything possible to ensure your safety and the safety of your loved ones. And if you don't feel comfortable coming in person, please understand that we do have virtual visit options as well.
And to download a free treatment guide with our information on ulcerative colitis or other inflammatory bowel diseases, please visit clevelandclinic.org/ibd. That's clevelandclinic.org/ibd. And to speak with a Cleveland Clinic specialist in the digestive disease and surgery Institute, please call 216.444.7000. That's 216.444.7000.
Again, in times like these, that's important for you and your family to continue to receive medical care. And rest assured here at the Cleveland clinic, we're taking all the necessary precautions to sterilize our facilities and protect our patients. So Mikayla, Amy, thank you so much for joining us on Butts & Guts.
Mikayla Finnerman: Thank you.
Amy Lightner: Thank you for having us.
Scott Steele: That wraps things up here at Cleveland Clinic. Until next time, thanks for listening to Butts & Guts.