About IBD Podcast Episode 142 - Saffron Cassaday - Designer $hit: A Microbiome Love Story

Designer $hit: A Microbiome Love Story – About IBD Podcast Episode 142

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What options are you wiling to try to manage your ulcerative colitis or Crohn’s disease? How about putting someone else’s stool into your own colon? Fecal microbiota transplants (FMTs) — using stool from a donor to repopulate bacteria in the colon — are being studied for use in treating inflammatory bowel disease (IBD). Filmmaker Saffron Cassady decided to try do-it-yourself FMT to treat her ulcerative colitis, using stool from the healthiest person she could find: her husband. The journey is captured in her film, Designer $hit, which explores both the science and potential behind FMT. Learn about why she decided to take a chance on FMT, how it has impacted her life, and where you can see Designer $hit.

Learn where you can attend a screening: https://designershit.eventive.org/schedule

Find Saffron Cassaday and Designer $hit:

Find Amber J Tresca at:

Credits

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Transcript

[Music: IBD Dance Party]

Amber Tresca 0:00
Hi I’m Amber Tresca and this is about IBD.

Amber Tresca 0:07
I’m a medical writer and patient educator who lives with a J pouch due to ulcerative colitis. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease, and to bring awareness to the patient journey.

Amber Tresca 0:19
Welcome to Episode 142.

Amber Tresca 0:22
Fecal microbiota transplant, or FMT is a type of therapy that is being studied for use in IBD. And especially for ulcerative colitis, it is the process of taking the stool from a healthy person and transplanting it into someone who is living with a health condition. Currently FMT is only being used in clinical trials and to treat infection with a bacteria called C. difficile. Even under controlled conditions, FMT comes with some risks. The goal is to colonize the colon with beneficial bacteria. But there is the potential for infection as well as some long term consequences that aren’t yet well understood.

Amber Tresca 0:58
My guest is filmmaker saffron Cassidy, who is both the director and the subject of a film exploring FMT, the title of the film, which I have to partially believe in order to keep a clean rating and podcast apps is Designer $hit. In the film, saffron explores FMT from the scientific perspective, but she also gets up close and personal with the subject when she undergoes a do it yourself fecal transplant.

Amber Tresca 1:25
Saffron, thank you so much for coming on about IBD.

Saffron Cassaday 1:28
Thank you so much for having me.

Amber Tresca 1:30
Oh, it’s my pleasure. I can’t wait to dig into your documentary film. So but let’s begin first by having you introduce yourself.

Saffron Cassaday 1:40
Sure. My name is saffron Cassidy, I am a filmmaker. And I am also an IBD patient. My condition is all sort of colitis.

Amber Tresca 1:50
Yeah, and so this all plays into this very personal film, which I’ve had the pleasure of, of watching. So I can’t wait to ask you about some of the things that are in it. And so the film is called designer, Shi T, which we’re gonna say, um, and so in the movie, you talk very candidly about your journey with ulcerative colitis, and how it has affected you over the years. I wonder if you could give a little more though, about the background, like, When did your symptoms start? And then what was that diagnosis process like for you?

Saffron Cassaday 2:28
Sure. So I was diagnosed when I was about 21 years old, I’m in my mid 30s. Now, so about 15 years ago, my symptoms started, I had kind of a few gut infections, I would say like, it felt like they kept getting food poisoning, like something weird was going on with my gut. And then finally, I saw a bit of blood in my stool, got an appointment with a GI, we did a colonoscopy and woke up from that colonoscopy, and was told, you have ulcerative colitis.

Saffron Cassaday 2:57
And my first thought was, well, are you sure? Don’t we have to wait for some sort of biopsy. And it was just like, No, it’s clear as you this is what you have. And this is what you will have forever. And that was a really difficult thing to wrap my head around at 21 years old, I consider myself a very healthy person, I’d never had any health problems. And I think I very naively thought, oh, other people have all sort of colitis their entire lives, I probably won’t. So give me the drugs. And I will take those and this will go away. And in a year from now, I will never think about it again. But of course, I was wrong.

Amber Tresca 3:33
Okay, so you woke up from this colonoscopy? I think many, many people with IBD will identify with that experience. And that then you had a doctor telling you, you’re gonna have this disease. Did they say forever? Did they tell that to you right away like that?

Saffron Cassaday 3:50
I think the conversation went something like, we’re going to give you medication to handle this. And I said, How long do I take that medication? And he said, you’re probably going to take medication forever. And I said, Well, what if I’m feeling better? What if this goes away? Can I get off the medication? And he said, we can experiment with that.

Saffron Cassaday 4:09
But no, generally, I think he wanted me to understand what to expect, which is, I was probably very typical, I bet you a lot of patients who are diagnosed with colitis, say the same thing. I think he wanted me to manage my expectations, in the sense of you will probably be on this medication or some form of medication for the rest of your life.

Amber Tresca 4:29
On the one hand, that’s a lot. But on the other hand, I have spoken with patients who maybe didn’t understand right away that it was a chronic illness that they thought it was something like an infection that you could take a round of antibiotics and then you would do better and then that would be that, you know, so I’m not really sure whether it’s better to ease someone into it or whether it’s better to just, you know, tell them everything right right at the outset.

Saffron Cassaday 4:57
Yeah.

Amber Tresca 4:58
So did they see so obvious See they saw ulceration in your colon and other things. Did they go through that with you that what? Because for myself hearing ulcerative colitis for the first time, I had no idea what that was or what that what that meant? Did they explain that to you very well, at that point?

Saffron Cassaday 5:16
Not very well, no. I remember being handed a bunch of pamphlets and being like, so high from the surgery or the procedures still and walking out with like, my pamphlets and being like, okay, I guess I’ll go home and start reading. No, I think, yeah, it took a bit of research after that, to really wrap my head around it.

Amber Tresca 5:39
Did you read a lot of things at that point that just scared you? Or anything reassuring or no, nothing

Saffron Cassaday 5:45
too reassuring. But like I said, I mean, yeah, once my research began, it was this, what I kept seeing was that I probably will be on some form of medication for the rest of my life. And But despite all of that information, I think I was still in denial, thinking, that won’t happen to me. I’m young and healthy enough that I will be able to turn this around. But of course, a lot of people diagnosed with this illness are young and healthy. And it is what it is.

Amber Tresca 6:15
Yeah, 100%.

Amber Tresca 6:38
All right, so let’s circle back around to your film. I really can’t imagine how you pitched this project? I imagine it wasn’t easy. And then how did you get buy in from all of the people that are close to you that are in the film.

Saffron Cassaday 6:57
The actual making of the film was such a closed process, because it features myself and my partner, some of my family members. But we had one camera person who was a good friend of mine. So the actual filming process was us having these very intimate conversations. But it was with people that I felt comfortable having intimate conversations with.

Saffron Cassaday 7:20
Likewise, we interviewed a lot of researchers and experts for this film. These are researchers and experts who work in this field. So talking about fecal transplant wasn’t outrageous. So the whole process of filming, it was, I was kind of in this bubble with people who totally understood and were totally supportive. It’s only now that we’re coming out with the film, that there’s this weird thing of telling other people, acquaintances, and strangers about my condition, this process. And, you know, opening people’s eyes to this fecal transplant procedure that a lot of people have not heard of.

Amber Tresca 8:00
I don’t work in the film industry, but it’s my impression that it might not be very kind to people who live with a chronic illness. So I’m wondering, did you keep your ulcerative colitis under under wraps? Have you is this sort of like you’re just right into the fire here that not a lot of people knew about it, and now, everybody knows about it?

Saffron Cassaday 8:28
I would say that people who are close to me definitely knew about it. I mean, over the course of 10 years, there were times when I was suffering quite badly that there was no hiding it if I was out working, or in social situations, it came up, because inevitably, there was always an emergency where I had to run to the bathroom. And I had to be frank about it. Yeah. And I was really lucky that a lot of people in my life were very supportive.

Saffron Cassaday 8:51
But of course, I had some people where, you know, I would be on set and say, I’m so sorry, guys, I need to take 30 minutes. I’m not feeling well, I have all sorts of colitis. And I’ve got jokes like this. And the thing where you just poop yourself all the time. Yes, yes, it is. Exhausting. And yeah, I mean, if you want to laugh about it, that’s fine. I think it’s important to laugh about it. I think everybody has like a poop story. So they feel that they can relate because of like, oh, well, I almost pooped myself once. And I’m like, yeah, it’s kind of like that. But it’s a lot worse. Because it’s not just once it affects every day.

Amber Tresca 9:27
Yeah. Everybody does have a poop story like 100%. And if they tell you that they don’t, they’re lying.

Amber Tresca 9:36
So I want to talk for a minute about your partner because he’s a huge part of the film. He’s a major part of your journey with FMT, how did this affect or change your relationship or did it?

Saffron Cassaday 9:53
It didn’t really, I mean, so I only say that you know, people whether you suffer from this illness or not People just have different degrees of comfort on how much they like to talk about poop and bathroom habits. And I tend to be shy talking about these things, even with people who are close to me. My husband just happens to be one of those people who does not care. You know, he’ll just be like, I had a great BM today, how are your bowels doing today? And I’m like, Oh my gosh, you’re so embarrassing.

Saffron Cassaday 10:24
But it’s really helpful to be suffering from this illness and be with somebody who has no shame or embarrassment around this. So when I spoke to him about this procedure, he was fascinated when we decided that he could potentially be a good donor, he was excited, because he’d seen how badly I had been suffering. And if he could help in any way, he was really eager to do that. And then throughout the process, you know, people asked me, Did it kill the Romans? It was, it wasn’t romantic while we were doing it, but I think we’re both able to compartmentalize it and kind of go, this is like a medical procedure. This is to help my health. And yeah, didn’t bother him.

Amber Tresca 11:11
Marriage is not 50/50 Marriage is like 90% 10%, sometimes you’re the 90 and sometimes you’re the 10. So and that’s a was just watching the film, I was so impressed with, like, he was immediately in, he was like, This is great. You were like, This is wild. But I think it’s worth trying. And he’s like, Alright, let’s do it. And it was very funny. It was also very sweet.

Amber Tresca 11:39
And I think it also goes to show maybe people who live with an IBD that who who don’t currently have a partner, that there are people out there that can help you live with this condition and will be that supportive. So I just loved that aspect of the film.

Saffron Cassaday 11:55
Absolutely. And it does make having this condition just a bit easier when you have somebody who is totally understanding and helps you kind of eliminate some of that shame and embarrassment around it instead of hyping up that sense of embarrassment. You have to hide this aspect of yourself from this person.

Amber Tresca 12:13
Right? Because I don’t know how you would…

Saffron Cassaday 12:15
…especially if you’re sharing bathroom.

Amber Tresca 12:18
Yeah, I should say that there’s you have one bathroom in the film Correct?

Saffron Cassaday 12:26
A lot of barging in on him. He was very patient with me. Yeah.

Amber Tresca 12:30
Yeah, sharing a bathroom. I’m lucky enough now that we have more than one bathroom in the house, but going through college and everything, like sharing one bathroom with three other women. I mean, there was a lot of barging in, I did a lot of apologizing in those years.

Amber Tresca 12:47
So all right, so the topic of this film, FMT is not without controversy on a lot of different levels. So I’m wondering, I know you have gotten some pushback. I know there, there had to have been some challenges. I’m just wondering if there’s anything that you can share about the feedback that you’ve gotten so far?

Saffron Cassaday 13:09
Yeah. So obviously, DIY, fecal transplant is not recommended by any anyone, or researcher that I’ve spoken to. I was aware of that. When I did it. I was aware of that when I made the film. I had my reasons for choosing to do it this way. But it was very important to me that researchers and doctors who work in this field didn’t see this film as promoting DIY fecal transplant or being irresponsible.

Saffron Cassaday 13:38
Because truly, when this film comes out, and we talk about this film, and we do panels and conferences on this topic, I want it to be backed up by these people who are doing the research. I want them on our side. I don’t want to do anything that alienates them. And I really think that there’s an opportunity for us to work together where my story shows the patient side of it, why a patient would choose to do this. I think what do you hear? This is a film about somebody who does DIY fecal transplant or you see the trailer you think it’s going to be kind of medically misinformed.

Saffron Cassaday 14:12
But a lot of the doctors and researchers who have seen the film, say, I actually liked that film, I actually thought that it was well balanced. And that is like, so comforting to me. That’s all I wanted. I think that my whole point was to bring this topic to a wider audience so that they understand that this is a procedure that has been studied and researched right now. It’s not snake oil. There’s promise there. We are seeing interesting clinical results, but it’s not ready.

Saffron Cassaday 14:39
So being really careful not to over promise what fecal transplant can do at this point for any given condition, just saying it’s something to keep an eye on. There might be a clinical trial near you. And I think that we should all be keeping an eye on it. But not necessarily doing DIY people. That’s my disclaimer. I did I’m not saying you should.

Amber Tresca 15:02
Well, I have to say, that was a concern of mine, as well. I have spoken with several people who have done the DIY, and this is going back many years, people are out there doing it. And I also think it’s worthwhile to sort of, but you know, talk about that, like people are doing it. And so we might as well bring it out into the open and discuss what it means.

Amber Tresca 15:29
And I think the in the film, you did a wonderful job of that of speaking to researchers, and why this therapy is being studied for so many different conditions. And then also talking to people that have done the DIY, but then also circling back around and saying, but kids, don’t don’t try this at home. So I really appreciated that aspect as well.

Saffron Cassaday 15:54
Oh, thank you. Yeah, it was something that I had to navigate throughout the process of doing fecal transplant throughout the process of making this film of, you know, what is my responsibility as a filmmaker here, what is the message I want to put out into the world, and I don’t want to cause harm to anybody, by suggesting you should go out and do this. So we’re very clear throughout the film about the risks involved, because it’s not risk free, I took on a certain degree of risk. In my decision, I lay out my reasons for why. And I don’t want to push anybody in any direction.

Amber Tresca 16:28
It is very interesting, the way in which you dealt with the physical aspects of it, FMT does involve using someone else’s stool, processing that stool, so that you can put it into your own body. And I had a certain amount of sort of wonder, I was kind of like, well, how are they going to do with that? It’s a film, it’s not just audio, it’s not just discussing, like, how are we gonna do that? And it was just very clever. And so I would say that the that the film goes through it so well, and that nobody should be concerned about that aspect of it is, you know, because as a filmmaker, you made really clever choices about how you dealt with the whole idea of blending up poo.

Saffron Cassaday 17:17
Oh, thank you. Yeah, I mean, that’s something that we thought about a lot of this making a film about this topic. You’re right, it could be very salacious, like you can push it so far, one direction that totally turns people off, we really wanted to keep it as PG as possible. So we were really lucky that we found a great animator to work with us on this film.

Amber Tresca 17:37
Yeah.

Saffron Cassaday 17:37
And the idea that we came up with was, you know, when we’re discussing this, we don’t want it to ever be poop on screen. There are a little cartoon poops here and there. But generally, we use this metaphor of bugs and guts city, and there’s these bugs driving in cars. And, you know, always using these metaphors to try to make it a little bit cuter and more digestible, excuse the pun, because we want it to be accessible to you know, a wider audience without completely turning people off.

Amber Tresca 18:04
Right. Yeah, that’s super important. And I think you achieve that really well.

Amber Tresca 18:31
This is going to bring IBD and FMT, which still a lot of people don’t know what what that is, or what it entails, it’s going to bring it in front of a lot more people. So what do you hope happens next in terms of the research, and then also how FMT is thought of by the general public?

Saffron Cassaday 18:52
Yeah. So I think that I hope that this film brings this topic to the attention of a wider audience. But it’s not just this film, I think there are a lot of things happening in this space. At the same time, we just happen to be one part of it.

Saffron Cassaday 19:06
For example, in the US, there has been a fecal transplant pill approved by the FDA. Some people that I’ve spoken to have said, you know, this could possibly, hopefully advance research further, because now we have an easy to use pill that can be used in research trials. So what I’m hoping is that we’re going to see this increase in research trials, we’re going to see an increase in patients who are curious about this, who are willing to join these clinical research trials. And all of this research is just good for all of these conditions.

Saffron Cassaday 19:39
You know, we need a lot more science and data before this can be available to the wider public and it does seem like you know, all the pieces are falling in place that we’re all going to start hearing about this more often and hopefully, hearing good things about potential treatments.

Amber Tresca 19:56
Right, right. 100% Yeah, it’s been kicking around for a long time. I’m and I’m really hoping that things start to move forward, maybe a little quicker. And this whole idea because it does seem very promising in a lot of different ways. All right, saffron. What do you do after this? What do you what’s coming up next for you, professionally, anything you could talk about?

Saffron Cassaday 20:18
Yeah, I mean, I am a filmmaker and a video editor. So I’m always working on various projects. But this film was a labor of love that I’ve worked on for five years. And it’s just coming out now. So I anticipate being on this topic for a while for at least the next year or two. I want to be involved in conversations around this. So you know, if organizations or universities want to use this film to spark conversation, I’m very happy to kind of continue using my voice to talk about this subject. So professionally, I think this is something I’m going to be on for a while. And yeah, I look forward to it.

Amber Tresca 20:57
Yeah, me, too. I’m so glad that you’ve made this film and that it is coming out in the way that it is. And that we’re going to get as many eyes in front of it as we can. Because we really need to be moving this moving FMT forward and learning more about it. And then just learning more about the microbiome, like we just, there’s so much promise there. And yet, we it’s still just feels like throwing spaghetti at the wall. We just don’t really know what to do with the information that we even have right now. So yeah, I’m so glad that that the film came out that you decided that you decided to put your own guts on the line. That was really fantastic.

Amber Tresca 21:34
So let me ask you, though, like more personally, what’s what’s coming up for you personally, in the next few months?

Saffron Cassaday 21:44
Well, in the next few weeks, I will be having a baby. I am nine months pregnant. So yeah, that’s coming soon. So I’m birthing two babies at the same time, this film and an actual baby. So lots of excitement. Lots to be grateful for. But very busy.

Amber Tresca 22:02
Yeah, very busy. You already have what a son, right?

Saffron Cassaday 22:08
Correct.

Amber Tresca 22:09
Yeah. So is there anything you’re looking forward to about being a mom of two?

Saffron Cassaday 22:15
Yeah, what I’m finding myself more excited about this baby. And this not to insult my first son. When I was pregnant for the first time, and everybody tells you, oh, when you hold that baby for the first time, or when you see these milestones, I was like, I’ll take your word for it. Because I have no idea what that feels like. Now I have an idea of what that feels like. And I’m just so excited to do it all again, I just feel so lucky to do it all again. And I feel a little bit more relaxed this time. Now talk to me when I’m like, right in the postpartum phase. Soon, but for now, I’m really excited. And I’m feeling relaxed and good about it.

Amber Tresca 22:55
Yeah, well, I would say that if you’re feeling like that, right now, at nine months pregnant, which I don’t, I enjoyed my pregnancies, truthfully. But it does get uncomfortable towards the end. Especially living with a bowel condition. So I think that if you feel that way right now, like, it’s, it’s just going to be, it’s just going to be so, so wonderful. Although, you know, you’ve got this film coming out, too. So it is it is gonna be a lot for you. I don’t envy you that. But I’m so excited for you.

Amber Tresca 23:27
And I think it’s also great for other people who live with IBD. To also see your journey with pregnancy and and now that you’re going to be a mother of two to know that women with IBD have babies have healthy babies and healthy pregnancies all of the time. So thanks for sharing that aspect of it as well.

Saffron Cassaday 23:46
Of course, yeah, I mean, thank you for talking so much about IBD and pregnancy, because it was something that prior to having children, I had so many questions about, you know, you think this is something that consumes every aspect of my life, and how do I manage that with motherhood. And I think it’s really good to see these positive examples of, you know, having IBD should not slow you down, especially on something as important as family planning. So having those kinds of resources and support to be able to do that. It’s really important. So thank you for that. Yeah.

Amber Tresca 24:18
You know, when I got pregnant for the first time, which was only in 2006, it wasn’t really that long ago, but I kind of went around to all of my specialists and there still seem to be so much. That wasn’t known that wasn’t understood that they kind of said, well, we’ll do the best that we can. We don’t really know the best way forward. But this is what we’re going to do. And then we’re going to have a plan B and A Plan C. But even in the time since I last gave birth we know so much more now. And so it’s really wonderful to see young women like yourself, going through pregnancy with IBD. Letting people know that women with IBD can have healthy pregnancy and babies and we’ll just do the best that we can.

Amber Tresca 24:59
Well, I want to make sure that everybody can find the film can find you can follow on social media, because the social media for this film is on fire, which I think is like, when you think about the topic, that kind of makes sense. So how can people find the movie? When and where can they see it? And then how can they follow across social media?

Saffron Cassaday 25:26
Sure. So if you Google the film name, designer, S, H, I, T, to find our website, designer documentary.com. On that website, you’ll find all the information on where to view the film. So the film will be widely released on November 14 on iTunes, and Amazon. And yeah, find us on Instagram, follow us, you’ll get all your updates there for when the film’s coming out.

Amber Tresca 25:57
Right, and you’ll have some really good laughs as well, which I enjoy makes my life easier because the I just I love resharing all the things that all the memes that everything that you guys have made, so it’s um, it’s pretty good. And there’s some particularly good ones of you saffron in the middle of the FMT, DIY process, so everybody should check it out, if nothing else, just just to see that.

Amber Tresca 26:26
So thank you so much for all of your work in this space. It’s so critical and impactful. And thank you for speaking with me. I can’t wait to get this film in front of more people and to hear what everyone is going to have to say about it. So thank you so much.

Saffron Cassaday 26:41
Thank you, it was great talking with you.

Amber Tresca 26:50
Hey, super listener.

Amber Tresca 26:52
Thanks to Saffron Cassidy for taking the time to talk with me about her film during such a busy and pivotal time in her life. You can head to the film’s website to learn where you can see it. Plus, there are many more resources about FMT available there including screening events and panel discussions

Amber Tresca 27:08
Links to a written transcript, everyone’s social media handles and more information on the topics we discussed is in the show notes. And on my episode 142 page on about ibd.com

Amber Tresca 27:20
Thanks for listening. And remember until next time, I want you to know more about IBD.

Amber Tresca 27:28

About IBD is a production of Mal and Tal Enterprises.

It is written, produced, and directed by me, Amber Tresca.

Mix and sound design is by Mac Cooney.

Theme music is from Cooney Studio. 

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