Severe Ulcerative Colitis at 26: Olivia’s Fight for Remission

In this deeply personal episode of Life Without Leaks, we speak with Olivia about her life-altering battle with severe ulcerative colitis.

What began as worsening digestive symptoms in her mid-20s quickly escalated into relentless pain, 30+ bathroom trips a day, extreme blood loss and multiple emergency room visits. After a delayed diagnosis and ineffective treatments, Olivia faced life-threatening complications, including a hemoglobin level so low doctors told her she might not survive another day.

Refusing to give up, she advocated for herself, found a new specialist and ultimately enrolled in a dual-drug clinical trial that changed everything. Today, she’s in remission, traveling freely, regaining healthy weight and living without the constant fear of urgency or accidents.

Olivia shares candid advice about self-advocacy, overcoming embarrassment, finding the right care team and preparing for the unexpected. Her message is powerful: don’t lose hope. Effective treatments exist, community matters and you deserve to fight for your health — and your life.

For more information about the National Association for Continence, click here, and be sure to follow us on Facebook, Instagram and Pinterest.

Music:
Rainbows Kevin MacLeod (incompetech.com)
Licensed under Creative Commons: By Attribution 3.0 License
http://creativecommons.org/licenses/by/3.0/

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Transcript

The following transcript was generated electronically. Please let us know if you see any transcribing errors and we'll get them corrected immediately. 

Bruce Kassover: Welcome to Life Without Leaks, a podcast by the National Association for Continence. NAFC is America's leading advocate for people with bladder and bowel conditions, with resources, connections to doctors, and a welcoming community of patients, physicians, and caregivers. All available at nafc.org. 

Welcome back to another episode of Life Without Leaks. I'm your host, Bruce Kassover, and joining us today is a patient, Olivia. She is going to be sharing with us her story about how she has discovered that she has an incontinence condition and the treatment that she's been getting for it to overcome her challenges. So welcome Olivia. Thank you for joining us today. 

Olivia: Thank you so much for having me Bruce. 

Bruce Kassover: So tell me this, you are not on this podcast because we're just going to talk and have a conversation. There is a significant medical problem that you discovered. When did you first start noticing symptoms? 

Olivia: Yeah, so it's actually pretty interesting. I've always struggled with having regular bowel movements and in Thanksgiving of 2020, I did have an incident of noticing darker stool but it was just like, it only lasted for a few days, so I didn't really think anything of it and I just kept it moving. But in, I want to say, end of June, early July of 2021, I had my very first flare up episode that was just excruciating. And the symptoms I was having, was just I couldn't, I was using the bathroom nonstop. I had a lot of pain in my abdomen. And I also experienced a drastic weight loss within two to three weeks time of about. 35 to 40 pounds. So something was clearly wrong and I, so I was trying to I didn't know exactly what was going on at first.

So I would go to the emergency room and they, of course, the emergency doctors, they couldn't diagnose me with anything. So I would go in, go back and forth, and then they finally sent in a specialist to come speak with me so I could start figuring out what was going on and getting a, a colonoscopy.

Bruce Kassover: Now you are a young person. How old were you when this first started to happen? 

Olivia: Let me, I've got to think back now. So 20, 21... I'm 32 now I want to say I was about 26 or 27 at that time, and that is pretty young. Yeah. 

Bruce Kassover: So you're really in the prime of your life. You're supposed to be the healthiest that you are, or right around that age. What were you thinking? What was going through your mind when these things started to happen? Especially when you would go to the ER and they couldn't give you any, help figuring out what was happening.

Olivia: I was really devastated and overwhelmed because my family has never experienced any severe health issues ever. I mean, we hardly went to the doctor because we were for the most part, very healthy individuals. And I grew up with the notion that you don't go to the emergency room unless it's like a life or death situation, or you have a broken bone something that you can't get over yourself. And at first I would, I would just kept pushing through it and seeing if it would just dissipate on its own. But it just got to the point where I was in tears and could not move from all the pain I was in. So that's when luckily my parents stepped up and helped me find the help that I needed.

Bruce Kassover: Wow. So if you really had that attitude that, you don't go to the ER unless it's truly an emergency, that gives you an idea of just how severe your symptoms had to have been. I think a lot of people when they hear about, bowel conditions like, IBD or IBS, that they don't really understand exactly how significant they can be. This was like a real life changer for you, wasn't it? 

Olivia: Oh my gosh. Yeah. And it only proceeded to get worse after, after my, my first few ER visits. Unfortunately. And this kind of just dives into a little bit of advocating for yourself and finding the right specialist to treat you. I did not have the relationship I wanted with the specialist I was initially seeing.

And over time my symptoms got progressively worse. I, I was definitely an extremely severe case. Even after he officially diagnosed me, he said, so himself; I am a very extreme case in an critical condition. And of course, at that point in time. Because it was so new to me, I didn't know what the protocol was.

I didn't know what specific things weren't normal or again, were too severe for someone with my diagnosis. So I would go into my appointments and let them know the, everything I was experiencing. I was, after my diagnosis in August of 2021, I noticed that I was using the bathroom way more. 30 times a day and I was also filling up the toilet with blood, like complete... sometimes it was only blood. So I was bleeding severely... 

Bruce Kassover: That had to be horrifying.

Olivia: It was. But at that time, like my brain wasn't processing that. This is extremely abnormal. There is some blood that comes along with the early stages of this, but I didn't know... that wasn't supposed to be happening. And when I, conveyed my symptoms to my doctor and his assistant that I had severe, severe migraines to where I couldn't open my eyes, every time I would sit up, it would take me about five minutes because my heart rate would skyrocket to about 182 and it took me about, like, I couldn't walk upstairs. I could barely walk. And again, all the bowel movements that were 30 times a day. They tried saying Hi, well maybe you need to see like a neurologist, or maybe you have a blood clot or something. And so finally I had to do another ER visit. And when they were checking me out, this was October of 2021, my hemoglobin was dropped down to a two and they told me if I didn't go in that night, I wasn't waking up the next day.

Bruce Kassover: Wow. That's got to be absolutely the most frightening thing that you could possibly experience. 

Olivia: It, it was, it, it really put things into perspective for me as far as, "Oh my gosh, like this is actually, a serious thing." It's more than just like not being able to go to the bathroom normally. It's debilitating and it can take your life away from you.

Bruce Kassover: So you decided that you were going to have to see a different specialist. So what was that process like? What did you do and how did you arrive on somebody who was able to get you the help that you were looking for? 

Olivia: So while I was in the hospital I ended up receiving a blood transfusion, of course. And the doctor unfortunately did not take any accountability. He told me, well, you are going to end up here anyways. And I conveyed that, but I told you all my symptoms and you didn't do anything about it.

And so at that point he decided to turn it around and be like, well, I guess I'm just not the right specialist for you, which obviously he wasn't. So I ended up, another specialist ended up stepping in and he was great. He was a lovely man to work with. But he tried all different kinds of therapies that were standard protocol for someone with my condition, but my body was not responding to any of them. And I was still just experiencing a lot of pain, but it wasn't as drastic as my initial diagnosis, I did continue to lose some blood and have another blood transfusion, and I think this was back in 2023. He decided that he has done everything he possibly could and that he knew a wonderful specialist at MUSC, Dr. Forster, who he thought would be a better fit and would actually be able to get me the assistance I needed. 

Bruce Kassover: We're familiar with Dr. Forster because she is actually on the board for National Association for Continence, and we love her. She's an amazing physician. So at this point, though, before you went to see her had you officially been diagnosed at all or was this still 

Olivia: No. So, in 2021 or, yeah, 2021, August, 2021 they did officially diagnose me with severe ulcerative colitis. And that was with the first specialist. I just, the hospital assigned me basically.

Bruce Kassover: So you had a diagnosis, so at least you knew what you were up against, and you go and see Dr. Forster. Before I even talk about your treatment, I just want to reiterate that point you were making about how important it is to advocate for yourself because so many patients do wind up giving up or getting frustrated if they don't receive this sort of treatment that they expect, or that they're hoping for. And so really, you know, got to say you should be really proud of yourself for doing that and, you know, not just sort of taking things as they come. That's really excellent. So you went to Dr. Forster and what happened then? What was that experience like? 

Olivia: So I went to Dr. Forrester. It took me a few months to see her. So it was summer of 2023. I finally actually, my, just like my consultation with her and her assistant it was, it went very well. But then it so happened that day as they did like all the protocols of, okay, let's check your blood let's just make sure we have all of your symptoms recorded, all that kind of stuff.

And later that day, her assistant called me and said, you need to come to the hospital right now. You need a blood transfusion. So I got to her just in time. And with being in the hospital with her her and her team decided that I qualified to participate in a clinical study trial that they were doing for a dual drug therapy.

And that was just a huge blessing because I conveyed to her that all the other treatments I've tried have not worked. And she saw my condition and she I could tell by the way she spoke to me and just her energy in general, that she really wanted to see me live a normal life again, because at that point I was hardly leaving the house.

And if I did, I was constantly soiling myself, like whether it was in my car while I was grocery shopping, one time in an airport right before I boarded a plane. And she, I could tell like she didn't want that for me anymore, and she was going to do everything she could to help me get my life back.

Bruce Kassover: It's so nice when you get somebody understanding, especially with the condition that's so difficult to talk about. It sounds like your symptoms were so severe that you really didn't have any choice. It's just, " I'm going to go see a doctor and I'm going to talk about it," because you can't live otherwise.

But even then, did you find it difficult to have those conversations because of the nature of the condition? 

Olivia: Honestly. No, no. I, I wasn't, because I realized nothing was going to happen. Nothing would progress or move forward towards healing if I didn't share every single detail because I think you, you shouldn't, you should not like.

Not share details with a specialist. Share every single thing so they can find the best route for you and know exactly what's going on. And not only share those details, but be confident in what you're sharing. Because the doctors or specialists cannot help you if you don't tell them everything that's going on.

Bruce Kassover: You know when we post this, I'm going to see if we can turn the volume up on that message because it's such a good message and so encouraging that I hope people really, really take to heart exactly what you're saying, that you should not be ashamed and you shouldn't hide anything and to really speak up.

And if people get that one message, that's going to make a tremendous difference for people. So I really do appreciate you saying that. So I'm wondering now, before we even start to talk about some of the treatments or the clinical trial that you participated in. It's not a surprise to hear that the treatments that you tried beforehand didn't work for you, 'cause we know, look, not every medicine or every therapy works for every person. That's why there are so many out there. But, and it doesn't mean that the things that didn't work for you wouldn't work for somebody else. But just so we cover all the bases, I'm wondering if you could share with us a little bit about some of the things you did try that weren't successful for you. 

Olivia: Oh goodness. Okay. So I do not remember the names of the therapies. But the first therapy treatment, I tried it, it worked for, it worked briefly. I, I felt a little bit more control over my body.

That's the biggest thing, too. You feel pretty helpless when you have zero control over your body and you're scared to leave the house, socialize just all kinds of things. So for a few months I was able to get a sense of normalcy again. And I'm not exactly sure why my body stopped responding. It just did. The other treatment I took was in a, not injection form, but it was a pill form. And that, I just, it was not agreeing with me. I just knew immediately that I could not do it. I wasn't... I wasn't seeing any results with it. And I think for the most part, I was basically living my life off of this prednisone steroid. And i'm going to be honest. I hate I hate, hate taking prednisone. It helped relieve my symptoms a little bit, but I, I just don't think anyone should have to be on a steroid like that. And it was really frustrating that my body was only responding to the steroid and not the actual therapy treatments.

So I've, those were the again, I'm so sorry I don't remember the names of the other ones, but, I think they were the primary therapy treatments that most of the specialists and the gastros will start their patients on. 

Bruce Kassover: But I'm guessing that then you started this clinical trial and you've gotten better results.

Olivia: Oh my goodness. Oh my goodness. Yes. I cannot tell you how thankful I am for this trial. It took a little bit, it took a little bit for the therapy to get into my body and start working, but it's been, I want to say, so I started that in, I want to say October or November of 2023. And I do have the therapy treatments names.

So it was a trial for to see which groups of people would respond to which drug and or if they responded better to a dual therapy treatment. And I ended up being in the group of the dual therapy treatment. Which was what they were testing out. And the names of them, forgive me for butchering them is guselkumab and golimumab... 

Bruce Kassover: Sounds like it's typical medicine name. They're impossible to pronounce and figure out. 

Olivia: Yes. 

Bruce Kassover: But that's okay. So tell me, so, so what did you experience when you started taking this and when it started to kick in? 

Olivia: I think what I started to experience, it took about I want to say a couple months to kick in as far as reducing my bowel frequency.

So it reduced the bowel frequency, I would say is the first thing that I noticed when I initially got on the therapy treatment. And then over time my stools would had solidified so it was less liquid no more blood, and it was just more solid stool. And then the frequency of the stools also dropped.

And I would say over. Over the year that I was able, that I was on the treatment, I was able to gain weight again. That was another thing that I was suffering from too. I was, my body could not retain nutrients and it was so weak and sick that I was underweight for the longest time. And so on this therapy treatment, my body was able to retain nutrients and put a healthy weight back on again.

So I would say the stool frequency. The type of stool and the actual healthy weight gain is, are the biggest things that I've noticed. 

Bruce Kassover: So do you still have issues on occasion or is it generally cleared up for you? 

Olivia: I would say it's generally cleared up and I would, I would diagnose myself saying that I'm in remission right now.

Bruce Kassover: Well, that's outstanding. But I'm wondering, you said that you were on it for a year. Are you no longer taking the medication? 

Olivia: No. So I still am. So I would say I am coming up on year two of taking it and I plan on staying on it for as long as I possibly can because I just, I just am so thankful for it, and I think be, I, I don't know yet because I haven't tried it if my body would stay in remission if I wasn't on the dual therapy. So I have not tested that out yet. 

Bruce Kassover: Yeah, I certainly would... 

Olivia: and I don't know if I want to risk that. 

Bruce Kassover: Yeah, I can imagine that, yeah, I'd be happy to stay on it if it's working. So in addition to the medication, have you had to make any other changes in terms of lifestyle or diet or behaviors or anything like that?

Olivia: So yes. So well prior to me getting diagnosed, I was in the gym a lot and but what I didn't realize is that I had a gluten intolerance also. So I had to cut out all gluten and which I mean, it doesn't bother me one bit. It's not that difficult to live without the typical wheat products.

And I incorporated more proteins and more whole foods instead of processed foods. And I would say probably my body just doesn't really digest raw vegetables well still. So I try to stay away from raw vegetables and eat more cooked vegetables. But I would say overall, just staying active in the gym and eating just nutrient rich foods has been what I've had to change with my nutrition.

Bruce Kassover: It sounds like, you know, you've really gotten your life back. 

Olivia: Oh, yes. I, you know, I was thinking about it recently. I, so I had traveled a bit while I was really sick, and it was difficult for me because again, my brain was always thinking. What am I going to do if there's not a restroom nearby while we're in the car? While we're on the plane? All this kind of stuff. And I, I traveled Europe in 2023 while I was sick, and that was very difficult for me because I was still constantly thinking, oh my gosh, oh, what if I have to use the bathroom? And this past year I've been able to travel with zero issues at all, and I was just like, "Wow, a couple years ago I was in so much pain and I didn't enjoy my traveling, or I was embarrassed for with sharing a bathroom with my group of friends." Be that, I think that's probably the most embarrassing thing is. It's not necessarily soiling myself, but it's having to share a bathroom with other individuals. And this time around I don't, I don't have those worries anymore. I'm able to actually enjoy life. 

Bruce Kassover: That's great. And yeah, especially for somebody who likes travel, it's got to make an enormous difference. I mean, first you have to be able to know how to say, where's the bathroom in a hundred languages. And you don't have to do that anymore .

Olivia: Nope. No, not at all. 

Bruce Kassover: That's great. I love hearing that. Now, Olivia, so I'm really happy to hear that you have really returned to a normal happy life with this medication. And I really want to put you on the spot right now. I'm going to spring something on you.

 One of the things we always like to do On Life Without Leaks before we get finished, is to leave our guests with one little hint, tip strategy, bit of advice to help them live a life without leaks. Now we're not talking about bladder leaks, but we still are talking about incontinence, so I'm wondering if there was any little bit of wisdom you might want to share with listeners as well.

Olivia: I would say that do not be embarrassed, do not be embarrassed at all. I think that those of us that have dealt with this are the strongest people to exist because there's not that many people that would be able to live their life this way, and I think that it speaks volumes about who we are as individuals.

If we can get through this, even on the hard days, even on the days where our mind is just, just in the gutter with all of this, because I've experienced that sense of darkness, also, just feeling like I don't have any purpose. I'm not like, I can't go out and do things for people. I can't really work normally just to not lose hope because there is a solution out there.

And to really fight for yourself, you're worth fighting for, and you deserve to have and live the beautiful life that you want. And this might be a little silly piece of wisdom, but please pack a pair of extra clothes or diapers because you, because that's one thing that I regret that I didn't do. I like, I think I was really stubborn and just, and wanted to believe like, oh, well maybe I can get through this trip or go to the grocery store without needing an extra pair of clothes. Like I pack a, an extra pair of clothes. Because you just be... 

Bruce Kassover: Be prepared. 

Olivia: You never know. Be prepared. Always be prepared. 

Bruce Kassover: That's great. That's really good. But, you know, you said something else that I think is every bit as important, and you were talking about how the community of people who are in a similar situation are really strong and that sense of community of other people who are going through this is really important because we keep on reminding people that they're not alone. They're not the only person who's experiencing this, and that's why the help is out there in the first place. And so I was wondering if you have any thoughts about that. If you've had a chance to experience is sort of the community of people who are going through the, these issues and how you've been able to get help from that?

Olivia: I'm going to be honest, I did not feel that way when I was going through everything. I felt extremely alone because I didn't have, I didn't have anyone to relate to. And I think at that time, my mind, I, I was just so overwhelmed. Overwhelmed that I thought it would be pointless. But now when I look back I feel like I, I recognize how important it is to have community to be able to uplift you or relate to you.

Because during that time, no one around me knew what it was like. No one around me could relate to me whatsoever. They, they did the best they could, but there were also individuals that. Did not live this life at all. So now what I personally try to do is I am very open with the people I interact with, whether it's at the gym or friends online, or my close friends and family and person.

I am not shy at all or embarrassed about what I've been through and if they ever have any questions. Do not be embarrassed to come talk to me about it because I have , I mean, it doesn't get much worse than soiling yourself in public. So if anyone ever had any questions or they were noticing things, I would want to be there for them because I didn't have that.

Bruce Kassover: I love hearing that, and I'm going to put a shameless plug for the National Association for Continence as well, because while you're open with anybody around you, I can't imagine that everybody listening is going to be able to reach out to you. However, we do have message boards, right there on the website at nafc.org where there's a whole community of people who are going through these and all sorts of incontinence issues, and they share advice and encouragement and motivation.

So I definitely encourage anybody who feels the same way that you are feeling, if they feel that isolation or the loneliness, the desperation to visit us, visit the message boards and you'll find people to talk to. So that's a great point. I want to thank you for bringing that up. 

Olivia: Of course. Yeah. I think that is the biggest thing is you do tend to isolate yourself out of embarrassment and feeling like you can't relate to anyone. So I definitely encourage everyone to visit those message boards. 

Bruce Kassover: Excellent. Well, thank you so much and thank you for sharing your story with us today. I know that it's going to be really important to a lot of people out there, so we appreciate it and we look forward to your continued good health. 

Olivia: Thank you so much, and thank you for having me.

Bruce Kassover: Life Without Leaks has been brought to you by the National Association for Continence. Our music is Rainbows by Kevin McLeod. More information about NAFC is available online at nafc.org.