The Medical Detectives - Claire & Suzanne's Story: TwinTuition

Episode Date: October 8, 2025

Get ready for double the mystery and double the disbelief. In this episode of The Medical Detectives, identical twins Claire and Suzanne share a lifetime of parallel symptoms, and a decade of debilitating GI problems, that left doctors baffled. From years of being told it was “just IBS” to being dismissed as psychosomatic, these sisters prove what happens when intuition, persistence, and a little “twintuition” collide with medical bias.Join the conversation! Have a medical mystery or story of your own? Send it to [e-mail]. ***The information provided on the medical detectives is for informational and entertainment purposes only and should not be considered medical advice. While we may feature licensed medical professionals, including doctors, we are not your personal doctors and no doctor patient relationship is established by listening to this podcast or interacting with our content. All discussions are general in nature and may not apply to your specific health situation. Always seek the advice of a qualified healthcare professional before making any medical decisions or taking any action based on the content of this podcast. Never disregard professional medical advice or delay seeking treatment because of something you have heard on this show If you are experiencing a medical emergency, please contact emergency services immediately or consult a qualified healthcare pro***

Hello, Erin. How are you doing? Hi. Well, I am on Cloud 9. I would tell you that I just had a successful launch of Feel Better to all of our 10,000 waitlisters who have all been patiently waiting for almost two years for me to build this app. So I'm so really. that everything went great. So funny, guys, I did not know that Aaron had just launched it and it actually came up in the episode, which is kind of cool because I was talking about this in need for more information around root causes of multiple issues around the body. And Feel Better actually does offer that, which is really cool because if you have, for example, connective tissue issues, you can then

go see all the things that are related to connective tissue issues, which honestly, I'm going to be checking out because it's helpful knowledge for me to have because I do have multiple connective tissue issues. That is why I used that specific example. But it's a real cool platform. This episode is a feel magical, though, because we've got twins. You can't see. And identical twins, identical twins.

Identical twins. That's even another level. That's another level. It's another level. We didn't bring you just fraternal twins. No. No. That's child's play.

We brought you identical twins. Yes. So get ready for double the mystery. Double the fun. You could say this episode. Double the trouble. You could say on this episode, we're twinning. Okay.

Before we put any more terrible, terrible puns on this, we should probably get into the episode. Let's do it. Hi, Claire and Suzanne. Welcome both to the medical detectives. We're so excited to have you. Thank you. We're so excited to meet you. Well, for all our listeners who cannot see what is going on,

we have, for the first time, identical twin guests on the show. Yes. Hi, this is Suzanne. Hi, I'm Claire. And we're identical twin sisters. Why don't we start, if either of you want to start about how this medical journey started for the two of you. It's always been true throughout our lives that we pretty well had the same medical conditions around the same time throughout our whole lives. We both were diagnosed with

dermoids cyst on our ovaries. I had mine on my left ovary and Claire's was on her right ovary. Then we both had to get tonsils out in our late 20s because we were both getting constant strep. Yes. Then when we were both in our 30s, we both, we both, started experiencing significant GI symptoms. The first symptoms that I started noticing was a change in bowel habits. I started having episodes of diarrhea unexpectedly, and it just never got better. In fact, it progressed from having maybe a few times a week to almost on a daily basis. By the end, I was having, oh, at least four or five episodes.

a day. And then I actually, before I ever started this, I used to be on the other end of spectrum where it wasn't unusual for me to constipate. So to go to this other extreme where I started having loose bowel movements and cramping and just my stomach hurting and then going to, like Claire said, I would have sometimes six or seven bowel movements of diarrhea a day. It was just, I couldn't understand it because that was just so the opposite of the way I had always been in my life up to that point. So it just didn't make any sense to me. And at one time, I went to the movies by myself, thank God. And I was eating from popcorn and my stomach starts cramping.

And I had diarrhea before I could even stand up. I had to get out and walk out of the movie theater. got her hat a jacket so I could tie it around my waist and go home. I mean, this is how bad it was. I remember Suzanne telling me about the episode she had when she was at the movie theater, and it's happened to both of us. You're out in public. There's not a restroom close, and you just absolutely cannot control your bowels. And it's just so embarrassing and humiliating. Yes. I ended up having to have my gallbladder taken out. But then after that, I just still never felt right. I was starting with chronic diarrhea.

I was playing tennis at that point in my life on competitive women's tennis, Dan. I would have to go out on the court and say, but the ladies ahead of time, this is terrible. I have to say this to you, but I may have to leave the court, like, on an emergency, right, in the middle of the point, you know, because this is my life right now. I don't know what's going on, but this is it. And it did happen where I had to go to the bathroom and wash out my skirt. I mean, it was just embarrassing, but that was my life at that point. But it was so frustrating because at that point, my family doctor was wonderful. I loved him.

He listened to me. He never acted like I was complaining of things. I shouldn't be complaining. He sent me to a GI doctor. And initially, I really liked this doctor. And I felt like he was doing what he needed to do. I ended up in my hospital with a partial bowel obstruction. I just had horrible, horrible abdominal pains.

And I called Claire that time. And I said, Claire, I don't know what to do. You know, I'm starting these cramps again. It just feels horrible. It feels like I'm in labor. My husband was at work. I said, should have to try to drive myself. And she's saying, no, don't drag yourself.

You need to get him to come get you. I didn't even know if I could drive. because I was in such severe pain at that point. It was like I was in labor, having a child again, and ended up going to the emergency room. And they did a CT scan, and I had a partial ballot instruction, so they had met and made me to the hospital. It took about three days or so, and it cleared, and they sent me home.

They did do, they did the CT scan. I never was told the results of my CT scan from that time. Just a quick question. A bowel obstruction is basically like advanced constipation. Is that a way of looking at it, Aaron, or like where it's just? It's typically associated with a physical block in the intestine. So there are different ways why you could have a block. You could have a mass inside that's causing a block, similar to our patient, Ivan,

who had, in essence, what was a small bowel obstruction? from Crohn's disease, right? That was, it was so narrow that that caused a blockage and then a backup. Yep. You can have the bowel can twist on itself and cause a backup. You can have something called a volvulus, which is where the intestine almost folds in on itself. So there's a lot of different ways that you can have a small bowel obstruction.

But then, so I was discharged. I was still having a diarrhea. Still, I had been to the GI doctor. they had done fecal testing, I started having flushing episodes. Claire was visiting one time with her then husband and my husband, and my face turned absolutely beat red. It felt like I had a thousand fire ants burning my skin. I jumped up and opened the freezer and stuck my head in the freezer. And they're all laughing because they didn't know what I was doing. And I was like, it's funny. this really hurts. And so I go to the doctor. And of course, I'm in my, you know, getting close

to my 40s at this point, right? Because this has been going on for a while. And so it's perimenopause, right? So the GI doctor is telling me I have IBS, irritable bot syndrome. They're telling me I have paramenopause. It was always an excuse for the symptoms that we had. And we could vent to each other about that which was very helpful because it just was so frustrating yeah and then like a year after my first bowel obstruction I had another one I went to a different hospital because I thought you know maybe somebody else will know something the doctor that I had it was very frustrating because I you know same thing again CT scan I had a bowel obstruction they put me in the hospital Claire, you just IV fluids, not eating nothing.

Again, it cleared up. I'm sitting home. Supposedly everything's good, right? Still having the chronic diarrhea. Still having the flushing. This was really funny. Claire and I were together at a dinner with our husbands, and we drank wine, red wine.

And immediately the same time, both of our faces turned to be red. And they're looking at us and we're like, oh my gosh, you know, this hurts and it's the flushing again. And so we just quit drinking wine because we're like, this is something. And again, the doctor's student that was going on. I also got, and nobody has ever answered this for me, but I got like a almost a ring on the front of my neck of dark, my skin darkened, almost like what it would look if somebody had been strangled. And people would ask me about that. What is that?

And I'm like, I don't know. You know, I don't know what's going on. I don't understand. So it was just very, very frustrating. So I've had two bowel obstructions. I end up in the hospital again, almost exactly a year after the second bowel obstruction. I went back to the first hospital I went to. And I'm admitted.

CT scanned the whole thing again. The GI doctor that I was seeing, one of his partners came in because my GI doctor was on vacation. And that poor man, I was asking question after question after question. so frustrated at this point. And he took a step back every time I asked a question. And he was at the door before I knew it because, you know, he couldn't tell me anything. So at that point, the surgeon that was called in for me, his name was Dr. Louis Tibido, the most wonderful man. He was from page of Louisiana, which is near where we grew up. So we had a lot in common. And I'm just talking I mean, I was calm, but I was pulling up. I'm so frustrated. I had been living with

this since I was 35 years old. I have chronic diarrhea. I have flushing episodes. My stomach, like with even still today sometimes, my stomach will cramp when I'm asleep and wake me up to have to go back. And I said, this is just not normal. I don't understand what's going on. And I can't keep living like this. It's just so frustrating. And so he said, Mrs. Montgomery, I don't ever say this, but I think we need to do an exploratory surgery and see if we can figure out what's going on. So I said, okay, my husband and I both like, that's fine. At that point, we were both so frustrated. Because, you know, when we would travel every hour almost, we would have to stop for me to go to the bathroom. And I would just say,

this is you're not the first person you've heard where something that most people would be like hell no I don't want to do that you're like oh yeah okay that's I was like I was like I know I was not and so Suzanne before this no one had suggested doing an endoscopy or a colonoscopy I had a colonoscopy done and they said they didn't find anything I didn't have an endoscopy done And did I crew? I don't think so. I don't think so. You have to ask you.

I know, because we're good. Her joint medical address. She was a nervous. And so I would call her and I would say, figure, this is what happened. And so he ended up doing the surgery. And he ended up opening me from basically right above my pubis area to right below my breast. I have a scar. See if I can get both my fingers in.

I mean, it's wrong. all the way up and he started feeling my he took my entire small intestine out of my stomach and started manipulating it and he found that we call that run the bowel yes he found it was either seven tumors and 10 lymph nodes or 10 tumors and seven left nuts I get it's been so long I just kind of get confused but he found that all in there so he did a resection he cut that entire part of my bowel out. So he removed all that, resets it it. And he came to me the day after my surgery. I was, you know, and overnight. He came the next day. And he sat down next to me. And you know, this isn't good, right? But he says, so I found carcinoid tumors in

your bowel. And he said, okay. I'm like, okay. You know, I don't know what that is. And he says, So I've called Dr. Mark Andalina to come in and see you, Suzanne, to consult with you. He's an oncologist. And I'm so like, okay. And I call Claire, and I'm telling her about it. And Claire, tell them what you called. Our dad is a retired physician. Oh, Suzanne calls me.

And she's like, so they said that I have carcinoid tumors, but I don't have cancer. But an oncologist is coming to see me. I'm like, okay. So then I call my dad, who is a doctor. I'm like, Daddy. this is what Suzanne said I'm telling him she has cancer and he said well neither am I

I let Dr. Andalina explained that yeah this wonderful man he is just he has the calmest demeanor he has the best bad sad manner he came in he pulled his stool up next to my bed and he had a packet

papers and he said so Dr. Tibido did the surgery and they found that you have carcinoid tumors which is cancer. And he said, I have all this information for you, but I am going to sit here as long as you need me to, and I will answer any questions you have. Because he said, I know this has to be shocking. I'm going to get a little bit teary. And so I started asking questions. Well, I said, will you explain first? And so he starts talking to me about it. And when I finally

got my diagnosis, I had been struggling for 13 years at that point. trying to get a diagnosis. And I'm thinking to myself and talking to my husband and saying, you know, if they had diagnosed this a long time ago, would I have had this many tumors? Would I have had this many lymph nodes involved? Because it was a lot. It scared me that it had gone on this long and wondering if they had caught it a lot earlier, what difference would that have made? And that was very frustrating. And so he talks to me and explains as much as he knows about it, but he's never see anybody that this kind of cancer me for. So he said, we'll follow up in the office. We'll do a nuclear scan called an optrio. And with that scan, he found another tumor in the mezzanitary area

of my stomach. And he said, we can wait a while to do something about this. I said, no, I don't want any cancer at me. If we can get it out, I want it out. But I just had surgery. So they made me wait And that was in October So they waited till December To do the next surgery And I just want to For the listeners Who may not know what mezzantery means

So when you I'm gonna ask I can see it in your eyes When you have the intestine And if you Actually lifted up someone's intestine It's not just the tube Right

There's like an apron That is attached Throughout the entire intestine And that apron is called The Mesentere that's what keeps everything together. So I was very anemic. So I had to get iron transfusions before I could have the next surgery.

So I had to do that. And then we did the second surgery. And, you know, same incision, same area. And it's a horrible recovery from that kind of surgery. But then I start to feel a little bit better and I'm moving. So then things were quiet for a while. So at that point, they ordered another scan. I think after three months, they were planning another one.

They did another scan, and they found another tumor. It was in my left pelvic area at that point. And that was just dead for me. You know, I had been so strong, I had been okay, and I just started crying. And I thought, was this ever going to end? They keep finding more. And at that point, he looked at me and he said,

Suzanne, I don't know what to do for you. He said, my partners and I cannot agree about how to treat you. We have never taken care of this kind of cancer before. We don't know any doctors who do. We just have never dealt with this. And he said, I'm going to start doing some research, and I suggest you do some research. And let's say we can find someone who can know how to treat you properly. So I felt clear, of course, because I would call her about everything, with things like this especially. and I told her about it and she went to work. And she said she needs to go to New Orleans

Louisiana. It is a group that specializes in this kind of cancer. At that time I think there were only about five doctors in the whole of the United States who did it. I called Cleveland Clinic because we were in Ohio but it was going to be six months before they could get me in.

I called New Orleans and they got me in like six feet. So when I contacted New Orleans, And they said, we need all your medical records. So I had to go, that was before electronic records, right? So I did get all that paperwork from all the hospitals, doctors off, everybody, to send down to New Orleans. Well, in the process of doing that, my husband and I are reading all these reports, trying to figure out what's been going on.

That very first bowel obstruction that I had in 20, was it, 10 or 11, the radiology report said the radiologist suspected that I had nerve endocrine tumors. Nobody had ever said anything. Never, the entire time. And, you know, of course, I didn't have access to my records at that time. You didn't have it like you do now. Yeah, there's no like my chart, right? There's no like a little magical place you see everything. So my husband and I were livid.

I mean, we were so mad. And we actually, you know, we're talking to our family and some friends about it. And they're saying, well, are you going to see the doctor? And I said, no. Because it's not going to change anything. All that we need to do is just move forward and go to the right doctors and figure out what to do. That's just, that doesn't make sense to us. So I went to New Orleans, the surgeon that I was going to see down there, he did my surgery.

He went in, opened me up, went in, and went over my entire abdomen, and took out the one tumor that they knew about, and there was nothing else. So that was my journey of being diagnosed. And then in the meantime, Claire, you come in, what was going on with you. Right. So when I was around 35, well, so I started having issues with the diarrhea as well, the blushing, you know, same thing, diagnosed with IBS. And I think because I was told I had that IBS for a while, I just accepted it. I don't think it was until after Suzanne was diagnosed, probably, that I really started pushing so hard for myself.

Because once I found out that's what Suzanne was diagnosed was, I was absolutely convinced that that's what I had as well. Yes. So you were all like, we're just, that's a twin thing we have. Yes, because I mean, we have not everything identical to that. point in our history. She had a fibroid cysts on her ovary. I had one on the other ovary. I mean, like everything had been identical. So it's basically like copy paste. You know that there's going to be the same issue. Yes. Yeah, exactly. Yeah. And I was having the same episodes of severe abdominal pain like Suzanne was. And I know I have four different episodes over, I think like

three years where I went to the hospital. They did a CT scan. They said nothing's wrong. Go home and then I had more where I wouldn't go to the hospital because I thought all they do is sending home and I'm paying for an ER visit and a CT scan and I'm just being sent home. So I would just stay at home and ignore it and it would eventually get better. So when Suzanne started finding out results, then I went to my GI doctor and I work in the GI field. I'm an endoscopy nurse. So one of the doctors that I work with, I went and saw him in his office and I'm like, hey, look, I'm an identical twin. This is what my sister got diagnosed with. Can we check me for this? So they did the 24-hour urine test. They did the blood work.

Everything's coming back negative. So he's like, no, you don't have it. You're fine. So, you know, he's totally dismissing it saying, I think this is just coincidence. You know, everything's coming back negative. There's no way that you have this. And it was frustrated because I could understand his point of view because the test were coming back negative, which was very frustrating for me. But at the same time, I still thought that I most likely did have it. So I could kind of understand, but at the same time, I was also very frustrated because it was definitely affecting my quality of life. I was working 10-hour shifts, four days a week, and I did not eat during my shifts. Or if I did, it was very low.

little because I was in a procedure room and I was terrified that I would have to go to the restroom and I couldn't leave the room. So I just avoided food while I was working for that reason. And I did this for years where I ended up going to a different doctor because I've changed jobs and I went and saw a young doctor and I went to saw him in his office. And I said, please, by that point I'd found out about the gallium scan. I said, please, will you order a gallium scan? I just want to be checked. I want to be sure because I really feel like I have this too. And he said, well, I'll order it, but I'm sure it's going to come back negative.

And I said, that's fine. I just want to try it and see. So I got the scan done, and he called me a couple of days later, and he said, well, they said it's equivocal. It's not negative, but it's not positive. And they recommend that you get repeated in six months. And I was like, okay. So then Suzanne talked to her oncologist and asked if he would see me. And he said he would.

So again, I gathered all on my paper records. They told me I had to FedEx it down there. I paid like $65 to send all that paperwork down there. And I'm looking through my medical records. And one of the GI doctors that I saw earlier in trying to get my diagnosis, he actually wrote in my chart. She's an identical twin and she thinks she always has to have what her twin sister has. He actually wrote that in my chart. That is like a competition. Yeah. Who can be sicker? Like how dare Suzanne get the sexy cancer? I know. I've got to have

the sexy cancer too. Oh my gosh. Yes. So I went for the appointment. And And by the time I went to see the oncologist in New Orleans, I had already been struggling for the last two to three years, trying to get the diagnosis that Suzanne had been diagnosed with. And I have never been so distraught when I left a doctor's appointment. Then I did that one. I could tell when he walked in, he had not looked at any of my information. He said that my scan was negative, that there was nothing on there. He didn't see anything.

and again, that you just have IVS. You know, I'll send you to my GI doctor here. You can go see him, which I did, and he told me to start taking a modia for diarrhea. I mean, I literally walked out of his office sobbing. I was so upset. He made me feel like the biggest hypercontriac when I was there. And it was very upsetting and frustrating to be treated that way. When I drove from Nashville, Tennessee to New Orleans, Louisiana to see him,

and he really did not give me any time or consideration when I was there. It's the most upset ever of a day and leaving the doctor's office. And I honestly was so angry with him. I called the practice and I talked, I don't know if I talked to, I think I asked to speak to one of the nurses that helped me there regularly. And I told her what had happened, how this doctor I treated my sister. And I said, I'm the one who sent her there. and they agreed to take her because she was my twin sister and we have had an identical medical history

and he didn't even look at her chart or the scans or anything and i said i refused to go back to him i said either you allow me to see a different doctor in this group or i will find a different practice to go to because i will not continue to see a doctor who treated my sister like that that is an excusable behavior. So I went back home after that appointment, and my older sister, Beth, lives in Iowa. And her husband is now a retired orthopedic surgeon when he was practicing at the time. And he researched and found that there is a clinic in Iowa City, which was an hour from where they love. And they begged me to come up there and go to that clinic. And by that point, I was so done. I've, you know, been dismissed for years at that point that I just said, I'm just going

to wait. The six months, I'm going to get re-scanned, and I'll wait and see what it says at that point. And so I did. And they did the second scan six months later, and it was more positive than the first one was. All of my loves were still negative. You know, I never had any positive blood work or urine test or anything. So then I told my sister that if he could get me into that clinic, I would go. So I did get into the clinic. I mean, it's really hard to get in to be seen when you don't actually have a cancer diagnosis. It's very difficult to get seen by anybody. But they did agree to see me. So in June of 2018, I went to the clinic in Iowa. And it's my sister. My daughter was with me. And my husband at the time, we're all four sitting in there. So we're waiting for

And they had drawn all kinds of blood work on me while I was there. And so I was sitting in there waiting and then inbox a medical student. And I was like, oh, my God, you've got to be kidding me. I came all the way to Iowa from Tennessee to be seen by a medical student. My junior. And no offense to medical students. So the medical student asked me all these questions and then he walked out of the room. And then he comes back in.

And he asks me all kinds of more questions. And he walks out. And then it comes in a third time. And I mentioned that one of the times when I was going to the ER, that before we could get there, I just started throwing up violently. And I felt like a gallon size back with green biofluid, which is gross, but I did. And so he goes back out. My sister said, you know what he's doing, don't you? He's going out there and talking to the doctor, and the doctor's going to be in here soon to talk to you.

Oh, 100%. The doctor I saw in Iowa's name was Dr. Howell. He had like an 8 by 10 sheet of paper, and his handwriting was small. It was completely filled from top to bottom where you could tell he had lived at my medical records. And so he's started asking me a lot of questions, and he said, we're going to look at your scan. And I want you to come over here and stand next to me, and we're going to look at it on my computer. So I did. And he said, we're starting at your head.

And then he worked his way throughout my body, where they did scan. And he's like, this is negative, this is negative, this is negative. Then it got down to my small bowel. He said, okay, you have a tumor and it's right there. And he's pointing at it on the screen. And I said, oh, wow, okay. I said, you know, I went to New Orleans six months ago where they did my first scan. And I was told it was negative.

He said, well, let's pull it up and look at it. So he pulled it up. And again, he looked at it. And he said, no, it's right there. And he saw the tumors on my first scam that I originally had done. So you just wanted cancer, Claire. So why would he actually get your school to your scam? I know. I had to just be the same as my sister.

That's right. I couldn't let her do it without me. I was so upset when that happened. I heard a letter to the CEO in the hospital. And the response I got was, do you advise to follow up with the scam? That's the advice you got. You know, he really, they did not care. So I went on Google and I wrote a scathing review about him. It's still there.

Yes, Claire. Them Google reviews, drop them. Yes. So that was in June that I saw the doctor in Iowa. They did all that lab work. And he said, I will do surgery on you if you want it. And I said, yes, I do. So they put me on the schedule for July.

In the meantime, I also saw the endocrinologist in the group because this is a neuroendocrine tumor. It affects your endocrine system. So he had me start giving myself injections, I think it was like three or four times a day, that were helping the symptoms somewhat until I had surgery. And all of my blood work back from June came back positive at that point for the serotonin level was elevated, the chromagrin in A, all of the markers specifically for that kind of cancer. They came back positive at that point in time. So I just want to add some clarity because people may not know what endocrine means

or what application that has with a tumor. A neuroendocrine tumor is a very unique. type of tumor in that a neuroendocrine cell is a cell that has two jobs. So most of the times you have a muscle cell or a nerve cell and they're in charge of the wiring and the communications and an endocrine cell makes hormones, which is like a messenger sending letters with instructions. Whereas a neuroendocrine cell is both a nerve and a hormone producing cell. And they are normal within your body. It's normal to have neuroendocrine cells throughout your body. But when they go rogue and they start to multiply, that's when they form a neuroendocrine tumor. They have the

ability to both send faulty wiring and faulty hormones or messages. And that's why they had the flushing, right? That's part of the serotonin, which is the hormone that was being abnormally produced from this endocrine tumor was causing havoc. Same reason why you probably had the diarrhea was because of the elevated hormones. So it is a fairly unique tumor in that sense. Yeah. Yeah, it is. So I went back in July and I had my surgery and I was by myself.

It was early on a Saturday morning after my surgery that Dr. Howell came in to talk to me. And he said, so it did come back positive for the neuroendocrine tube. And I was like, okay. Truly, I wasn't upset because I already was convinced I had it anyway. I felt vindicated. And it just felt like I, to know I was right all along, by the time I had my surgery and received my diagnosis, I had been having symptoms for 19 years. And even though the test weren't coming back positive, even though I didn't really have any proof that it was correct. It made me feel better about myself that I had pushed so hard and worked so hard to get where I did. And he said, you have positive left notes. So it was stage three. And that did surprise

me because he really expected it just to be stage one. He didn't expect the lymph nodes to be involved. But it's not surprising considering how long we were experiencing issues without being able to get diagnosed. And he ended up finding, I thought it was four or five tumors in my small bowel, but I also had three positive love notes. So I actually ended up being stage three, same as his own. Of course. And, yeah, so. We couldn't out do. I didn't just want the sexy cancer doctor. I actually had it. It's funny, though, Anna, because the doctor that wrote in my chart that I felt like I always had to have the same thing as my sister. I went back to that hospital because I went to see some of the nurses that I worked with. And he happened to walk on the

unit. And he's like, what are you doing here? I said, oh, actually, I'm recovering from having a small dowry section. I said, I got diagnosed with neuro and carcinoid tumors. He said, just like your sister. I said, just like my sister. It was awesome. So Suzanne is nine years out from her diagnosis. I'm seven. We both have been doing very well. And then in August, Susan? Yes, it was August. I ended up getting a small bowel obstruction and I ended up in the hospital. So I had a scan done in September and it came back negative. They were able to resolve the small bowel obstruction with medical management. And it came back negative. Thank goodness. My labs were fine. So it probably was because of adhesions like Dr. Nance was talking about. So my,

yeah, one of the GI doctors that I work with now here in Texas, he's amazing. I just love him. And so he was texting and calling me when I was in the hospital at the small ballot obstruction trying to convince me to come to the hospital downtown where I work because I'd gone to one near my house. And he's made me promise that if it ever happens again, I'm coming to my hospital. I'm supposed to calling day or night so he can take care of me. And he has one of the surgeons that we really like lined up

to do surgery for me. So that's my future most likely. Suzanne, have you had a bowel obstruction recently? I have not. No. Questions that I didn't have not. I still, like Claire said, at first, I was having to go to the doctor. What's it every six months

Claire? I was going for checkups. And because we have in Ohio, at the town, Cincinnati, and we run down in New Orleans. So my husband and I would either drive or we fly, and I was seeing the director of the program at that time, Eugene Waltering, he's an amazing doctor. He ended up retiring, and a new doctor had come into the practice. Her name is Dr. Mary Meluccio, and she's amazing. I mean, I love her.

My husband loves her, and she was sad because she told me this. year, I went in July, and she said, I think next year is going to be our last time. You know, we're not going to be able to be buddies anymore because you'll be 10 years out and I have no evidence of disease. But she said, of course, I'm always here. If you ever feel like it's starting again, just call us and you'll immediately be back in. Has any of your doctors asked to run a genetic panel? Yes. My oncologist did that in Cincinnati. And it came back negative. for it being genetic. Yeah, and mine did also.

I was worried about my kids. I had four boys, and I was so worried because I have, at least I know my youngest son, he's in his 30s, he flushes when he drinks alcohol. And so now there's always that worry for me that he could have it, but they did tell us it was not genetic. So I don't think they really... I mean, flushing specifically with the alcohol, you know, that is a known genetic. And it's an issue with ability to make an enzyme that degrades alcohol.

And that's why it manifests as flushing. But it's just absolutely fascinating to me because you are both identical twins. So you have really the identical risk of your cells acting out. And the fact that it did act out at the exact same time. right, in your life, to the exact same cells where a neuroendicumor, I mean, we're talking about less than one percent, right, of probably like all bowel tumors, super, super rarer. There just has to be some connection. After I got my diagnosis, I was working one day, and I was in the room with a female GI doctor,

and she had heard about it. And she said, Claire, can I pick your brain? She said, as a GI doctor, it is so hard to decide which patient should you take that step and order that gallium scan because she said it is so expensive. So it's really a concern for them to try to decide which patients fit in that profile and who should they really do it for. So I can understand. I had Molly ask me if I was really angry at a lot of my doctors.

And I said, no, I really wasn't the oncologist in New Orleans is the only one. have any resentment towards because all of my tests were coming back negative. CT scans were negative. The blood work was negative. The urine test was negative. So, you know, what can you say? And I hope that in the future, if people are listening to this, the doctors are, that they will listen to people that are in our situation, where if it's inside of identical twins, they really need to consider the genetics of that. And to understand that there is a strong likelihood that the medical conditions are going to be identical in them as well. It's a little frustrating for the community of people because we are a community like on

Facebook. I'm part of Facebook group. And I made friends actually in Cincinnati, two women. I felt blessed because one had it in her long and had to have part of her lung removed. Another one had a heart attack because of it because there's something called the neuroendocrine crisis in that serotonin level gets so elevated and so. bad that it made her have a heart attack. So I honestly felt less with how limited mine was, even with the direct diarrhea and everything else. But what's frustrating with is that there are

people, like famous people who have had this, Steve Jobs died from neuroindocrine tumors. They called it pancreatic. But it was neuroindocrine tumors of the pancreas. Aretha Franklin, the same thing. It was actually neuroendocrine tumors that she died from, but it affected pancreas, you know, whatever. And so they say it's that kind of cancer. And this could be alerting more people. Claire, to your point, which is, gets to the larger conversation about healthcare resources, right? How many women in this country have been diagnosed with IBS who have diarrhea issues, right? Is it effective to run a multi-thousand-dollar scan on all of them when this tumor affects 0.5 percent of all possible tumors. And maybe the answer is still yes.

You know, we we screen women for breast cancer. Every woman in this country over the age of 40, every year with the test. And I think that there are a lot of women who are given the diagnosis of IBS. It is not IVS. It is you have not found the problem yet. Okay. Right. That should be the name. IBS not found out real problem. Right. Not otherwise. That's fine. Okay. Should be the name of the entire diagnosis. I mean, you guys with a fibromyalgia in as well. I feel like that's another line. Yes. You have to validate that something is wrong. Yes. With the person. And so it is helpful to have a name to it, to have that diagnosis. But the problem is that for a lot of physicians, they just stop there.

Yes. Right? They're like, okay, you have IBS. And then that's the end of the road. There's no more investigation. And I was texting with a friend earlier because I was telling him he was recently diagnosed with a neuroendocrine tumor because he had appendicitis. Yes.

But the cause of the appendicitis was the neuroendocrine tumor in the appendix. And he had had symptoms for. I think he said well over a year. And sometimes it's only until you get to the stage where you have the bowel obstruction. Yes. Right. That then something serious enough happens that warrants an investigation. Yes.

But you had been complaining for years. We were like 15 years. Yeah. And the thing, Aaron, the gallium test, the pet scans are so expensive. But at a minimum, they could start with the testing the serotonin levels. doing the crem of renin and a test because they could test positive for that and then that's an indicator

that the scan is necessary at that point and that was never suggest well my I did I did see a GI doctor eventually my last GI doctor in Cincinnati and I think his mother along had had it so he was doing those tests on me but like Claire said it would come back and then sometimes

well I told Suzanne I was listening I listened to your podcast driving into work every day. And I came home one day, one Saturday, and I went to her house. And I said, Suzanne, they always end the show by saying, if you have an unusual diagnosis, you need to write in. I said, we're writing in because this is so rare. And it's embarrassing the symptoms. So a lot of people don't want to talk about it. And I said, we're going to do it. So she's like, okay, so we did. I can't believe after this is a one episode. And like, oh, my God, we have the most amazing. Twins for us.

Well, you know, it's funny. My husband and I will be married 40 years next April. And, you know, we were close. You know, you have your life together. You get used to daily life. But when when I started going through this, and I was having this diarrhea, and when I talk, I mean, when we talk about this diarrhea,

it's like an explosive. And, I mean, it's embarrassing when you're out in public because it's loud, it's explosive, it smells. And my husband and I finally looked at you, she had to I finally looked at each other and I just said, you know what, shit happens. And we're just going to have to deal with it. It's going to have to be discussed. It's going to have to be part of our life because this is it now. I mean, this is just what it is. Well, if anything, I'm glad at least you had each other to lean on during this process. And you had, you know, I talk about North Star believers all the time

and you are both obviously each other's North Star believers, but it must have meant the world to you to at least know that you have someone who really understand and believes what you're going through. Definitely. Yes, definitely. Because was it Molly maybe was saying something about, or one of you about twins and the intuition and all that?

And people would ask us that. And I don't feel pain, clear is in pain. It's not like that. but we get this nagging feeling. Like, I'll get this nagging feeling sometimes. And it just wouldn't go away, and I'd pick up the phone and call her, and something was wrong. And she would do the same thing. So there is that connection, like you say, about being at each other's mild star that

even though our spouses couldn't understand, like, we could with each other. Before we came on the show today, I called Suzanne on my way home from work. And she said, what are you wearing? And I said, I have all my aqua scrubs. And she said, I was going to wear an aqua shirt. I'll go get peace because we are notorious. They ended up resting a life without knowing we were doing it. We do it all the time.

You know, she's at her house. I'm at my house and we get dressed. And we are wearing almost identical outfits, and it's closest to be. Sometimes they're even identical. Winter clothes, comforters. We do it with everything. People have playing board games with us because we were playing scatical. Was it scattered?

Taboo. Taboo one time. And they said, it's a chip, but it's not. Claire did. And I said, Petzel. And our husband said, and it was right. And a husband said, and I was like, chips, peanuts, popcorn. Come on.

How many things are there? That's not fair. You're just keeping my twin dreams alive. I love it. I love everything. about this conversation it is so fulfilling and so valid to know that the twin reality is real well thank you both for coming on and this is your sign if you are a listener to the show that you and i know i know you as listeners have your own stories to tell so thank you for writing and thank you for sharing your

story we know so many people are going to relate and probably be a little bit jealous so they don't have this one. Yes. This was a very fun episode, and I think that the twins definitely had a very good sense of humor about everything. But I think we need to go back to something that we talked about in this episode with a lot of humor that is actually kind of scary, which was entries in the charting of the patient that were really more opinion-based than fact-based.

and also, you know, harmful and detrimental to someone's care. Yeah. So I'm going to say, actually, that that was not an opinion what that doctor wrote. When that doctor wrote, hold on, I'm going to read it. She thinks she always has what her twin has. That was a message. So that was documentation, planting the seeds that I think, there is a psychiatric component because everything that we write in a chart is intentional.

There is no reason. We don't just copy what everyone's what you say. We synthesize what you say in a chart and we document things for legal purposes, for communicating with other doctors. And to me, the reason why that was. put in the chart was very intentional to lay the groundwork that he thinks that this is not a real medical problem, that this is something that she is making up or conjuring. I don't know if I've ever talked about it that directly before, that charting is that

intentional. Because in my mind, as a patient, it's just some notes that a doctor has scribbled in there. But what you're telling me is it's actually, it's not those notes. It's taking those notes and saying, okay, what are the most important things I need to pass on to somebody else? Correct. And it's not even so much about what makes it into the note, but also what we omit from the note, right? So that's part of, there's a whole new use of AI in medical note taking that the AI is synthesizing, it's listening to your conversation, it's synthesizing the notes. And yes, I hate at the end of the day, I am spending hours. writing notes. And I'm not even that accurate because I'm trying to remember what I saw and the patient, you know, two hours ago. So I certainly see value in using AI for medical note taking. But yeah. Again, when I write a note, every word has meaning behind it. Every word is a signal not only to me, but to anyone who I think is going to read this chart. Whereas when I was,

you know, a resident, patients weren't reading their own notes. So we probably were talking about things without the filter of thinking that a patient was ever going to see that note. And I guarantee you this doctor did not expect his patient to read, she thinks she always has what her twin has. My father was a medical lawyer and he would always tell me, whatever you write in the chart, you have to expect to read in front of a judge because if that case ever goes to court, they will have you read your own words. and that is what is most likely to indict you. So medical charting is very serious. It's so, so serious. And because it's become just this like burdensome problem,

I think doctors don't think of it in that terms. And now, to be honest, it's just become a billing mechanism, right? It's just let me do the check, check, check, check box so I can get to the 99213 level or whatnot. But at its core, it's a. supposed to be communication between other doctors, and it's supposed to be the legal record of the visit. Yeah, that changes everything in how I look at charting. I think in hearing it that way that, like, a doctor should say, don't put anything in there unless you feel comfortable staying in front of a courtroom. Well, she should have taken that man to court is what I'm thinking now.

That's all I'm saying, because that's pretty damning. That's all I'm going to say. yeah i think it was very clear that this doctor did not think that she had a medical problem going on wouldn't be the first time one of our guests that was the yeah no i'm just i don't even know what to say like do you get what i'm saying like i don't even i don't even have like an answer for it i'm just like he's going to find out you know he's going to fat he told her she she she she checked him in the hospital right yeah But she actually confronted him. Someone needs to check him with a checkbook, you know, because people don't change unless there's consequences that affect them.

I think the vast, vast majority of issues need to be communicated, but not in a legal way. But it is hard to change behavior if there is not consequences. And right now, we have a system of self-policing. and that is what our morbid mortality conferences about, right? It's supposed to be presenting a safe space for doctors to talk about their mistakes and their errors. But I guarantee you, this doctor did not self-report this misdiagnosis to the M&M board. Absolutely not. He did nothing.

Yeah, but I mean, it just goes to show that literally, you know, Claire had an identical twin sister who had just gone through the same exact symptoms. is a same exact diagnosis. She herself is a nurse who works in health care. And even with all of the, she literally had the path, everything, and she could not get her own diagnosis in a timely manner. Because she just wanted to have what her twin had,

you know? Cancer's just like a nice bag. Oh my God. It's just so dumb. It's so dumb. Also, I did research while we were in the episode. And like, it is extremely common in identical twins.

if a condition like this manifests, for it to also manifest in the other twin. So just in medical research, not so true with like autoimmune disorders, that's a little bit more fuzzy, but like with cancer specifically, it's like 21% more likely if they're already predisposed those that they're just going to, they're going to get it than then even fraternal twins. So that's just in comparison to fraternal twins. Yeah. Well, again, it's very brave for anyone to come on.

talk about these really embarrassing symptoms, and I'm sure even for Claire, embarrassing that she couldn't even get a diagnosis as someone in the medical community and trying to work through this. So I really commend them for coming on. And as we said at the end of the show, you know, you are one of those listeners who are like, you know what? I should write in and tell my story. Please do.

Molly, our producer, she loves talking to our guests. The email is Stories at the Medical Detectivespodcast.com. And yeah, if you like this episode, please share it with your friends, share it with your family members, write a comment. We, I, well, here's something, okay, my husband's going to kill me. I didn't realize that because we have, when I listen to the episode, we have a shared Spotify account. And so sometimes I'll respond to the comments as me, but it's in my husband's name.

So if you see. so if you see a comment from nance but it is not erin nance it is me your dad your husband's just a very avid it's a very avid commenter all right anyway what a great episode what a fun episode you know this is kind of a fun one a sensitive topic but i had a lot of fun and i think that's a Good way and the show. I hope you guys had fun too. And we'll see you next week. We'll see you next week. the medical detectivespodcast.com.

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