Chad Ball 00:12
Welcome to the Cold Steel surgical podcast with your hosts Ameer Farooq and Chad Ball. We’ve had the absolute privilege of chatting with some amazing Canadian as well as international guests over the past year. While the topics have been broad in range, whether clinical, social or political, our aims for the podcast continue to remain the same. We hope to inspire discussion, creativity, scholarly research and career development in all Canadian surgeons. We hope you enjoy our second season as we continue to highlight some incredible guests, deliver detailed masterclass sessions on a myriad of clinical topics and introduce some fresh new features such as debate and companion formats. We hope you relish the podcast as much as we do.
Ameer Farooq 01:12
Jessica Grossman is a digital marketer, actress and model. She also is a powerful advocate for patients with Crohns disease. And she specifically has done so much to destigmatize what it’s like to live with a stoma, which is a surgically created opening that allows stool to exit the body into a bag. Her work with her website uncoverostomy.org has garnered widespread attention and is an incredible resource for patients with inflammatory bowel disease. In this episode, we explored what it’s like to live with a stoma from Jessica’s perspective, and what physicians and surgeons can perhaps do better when counseling patients who might have or need a stoma. Checkout Jessica on Instagram and Twitter @JessGrossman. If you’re comfortable with sharing with us your journey, can you talk to us a little bit about your experience with Crohn’s and how that has evolved in your life?
Jessica Grossman 02:09
Yeah, I mean, I love that you’re asking if I’m comfortable when I’m basically naked on my Instagram showing off my ostomy so definitely comfortable talking about it. Um, well, I was I was diagnosed with Crohn’s disease at the age of nine, I was actually sick, starting around the age of eight. And I was always a kid who likes sweets, and my parents, you know, I was young. So this is from what my parents told me. Um, but they remember there was one night when I didn’t want dessert, and it started to make them a little concerned. And I was having stomach pain and just wasn’t eating as much. And I don’t I still to this day, can’t even remember why I did this. But for some reason I got on the scale. And I had realized that I had lost five pounds. And so my mom obviously you know, an 8-year-old shall be losing weight. So my mom took me to the family doctor, who then referred me to to GI specialist at Sick Kids. And then I started to have a bunch of tests done. And so by the time I was diagnosed, I was 9, but my my dad’s brother, my uncle had grown since he was 13, so we kind of already suspected that that’s what I had, but just needed it to be confirmed. And after both the scope up and a scope down, it was determined that I did have Crohn’s disease. And I was relatively okay, between 9 and 13 or 9 and 11. I was you know, on different medications, went to school, had to you know, not eat stringy vegetables or seeds or popcorn or anything like that. I still remember my mom used to peel strawberries for me because it couldn’t have the seeds, but she didn’t want me to miss out on strawberries. So she put in a lot of effort into my food. And then when I was 11, there was one one week where I had a stomach bug and it was completely different than Crohn’s. Like I could tell the difference, but it never really went away. It had flared up my Crohn’s and it just kind of threw my whole body for a loop. I’m supposed to go to sleepaway camp at the age of 11. And I was late by a week because of how sick I was. And then my parents really thought you know, just go it’s new kids and you know, a new experience, try it out. And they thought I was just kind of being nervous, but I still just really wasn’t feeling well. And I basically spent I can’t remember how long because I slept every single day and night at this camp, running to the bathroom, which was unfortunately up a hill and a little bit of ways away from the cabin that I was sleeping in. So I had to do that for a couple of nights and ended up in the nurse’s cabin and it was just a bad situation. So my parents came and picked me up and then essentially I was taken to Sick Kids hospital where I spent the better part of two years living there. Going through more tests, more medications, more diets, I was on, you know, NPO for a while. I even ended up having my own IV machine at home. They sent me home to hope that I could go to school, where I would be plugged in to TPN at night and unplugged to go to class, you know, throughout the day, but things just ended up getting worse and worse, none of the medications were working, I was bleeding more, I was extremely tired. I was bloated from steroids. And, you know, at the age of 13, the the surgeon at the time Dr. Langer, who’s actually a family friend came in and sat down and asked me, you know, if I would be okay, having ostomy surgery, and that, you know, if I didn’t, there was a good chance that I was going to die. And so I said, yes, like, better than what’s happening now. And on January 30, 2003, I had ileostomy surgery. Now, here I am.
Chad Ball 05:57
That’s an amazing story, Jessica. You know, to be honest, every time you you tell about you tell it with such grace and elegance and enthusiasm, maybe it’s the wrong word. But that’s really how it feels. You know, you’re, you’re remarkable. And, you know, I’m curious at a 30,000 foot level, and you can go deeper if you want. You know, having a chronic illness sort of defines so many, so many aspects of so many people’s lives. I think it’s safe to say and you’ve clearly as we’ve heard done so many amazing things and continue to be an advocate on the on the medical side, but there’s so much more in your life. I’m curious how having a chronic disease that certainly you’re now maybe ahead of has really impacted your view of life and and how you you interact with with all the obstacles that that come in life, including, say COVID and everything else we’re dealing with, you know?
Jessica Grossman 06:50
Yeah, well, specifically to the COVID thing. It’s funny, because I haven’t I haven’t left in a while. I know e’lwl speak about that later. But everyone’s like, are you going crazy. And I’m like, I trained for this. I spent two years in a hospital. Like I’m so used to being in a bed this is, you know, I have a bigger condo, I’m totally fine. And now we know, portable video games. I didn’t really have that back then I’m old. Right. So.
Chad Ball 07:13
Yeah, you’re you’re almost. That’s right. You’re almost COVID Special Forces now.
Jessica Grossman 07:17
Yeah, exactly. Exactly. But, you know, just in terms of how the illness kind of defines me, I don’t think it defines me, you know, if when I explain who I am to learn, introduce myself, that’s not part of how I do that. But I think it turned me into the person that I am. It’s really given me the ability to push through pain to you know, focus and get things done to make tough decisions. You know, you really have to mature quickly, when you’re when you’re sick, and figure out how to get through life even, you know, even as a kid, I still had to do school. And you know, even though I was given a, you know, a lot of help and ways around it, I still tried to study I still knew that I couldn’t be left behind because of this. And so I guess just the, the skill that I developed from that were just skills that have turned me into who I am today.
Chad Ball 08:13
That’s amazing, whatever you’re doing, keep keep that. You know, you mentioned Dr. Langer. And obviously, you’re talking about Jack Langer who has had you know, contributions to a lot of our training that have come through Toronto and of course, his dad Bernie Langer is an icon in in specialty that I that I work in, so two pretty amazing gents an amazing family. But, you know, if I, if I push you a little bit and ask you, when you when you talk about him coming as a family friend sitting at your bedside, and sort of giving you that semi-option of moving towards a stoma, I’m curious about two things. Number one, how did Jack do that? How did he frame it? How did he table it to you? And then part two is for those of us that, that either do a lot of that or do a little of that, what are some of the the sentinel points and and, and recommendations you’d have for that conversation? Whether there are things that you know, maybe can be done better? Or, or typically, you know, the opposite of that as well.
Jessica Grossman 09:20
Okay, there’s a lot there. So, first of all, when I say Jack was a family friend, I was 13. So I didn’t have family friends, my parents did. So I wasn’t that well acquainted with him, but they were, which I guess help them feel more comfortable with the situation. So me sitting down with him was actually the first time I had really met him except maybe when I was really young, but I knew who that he was connected to my family. So I did feel a little bit more comfortable. But I was on a lot of painkillers and I had such a low hemoglobin that everything was a blur. So the only thing that I really remember from that time was me being in this bed, him sitting very close beside me and him saying this is this is the choice that you have to make. Your parents have said that this is your choice. And the options are surgery or you may not survive. And that’s, that’s all I really remember. But what’s really important, and I’m sure that he doesn’t do this with every patient, and that I did get special treatment. But his wife, Fern, actually has an ostomy. So he arranged for her to come visit me before I had surgery. So to be quite honest, she made a bit more of an impression than he did. I hope he’s not mad if he listens to this, but but.
Chad Ball 10:38
Wow, that’s amazing.
Jessica Grossman 10:40
She came in and she was wearing jeans and tuck it tucked her shirt into her jeans. And I remember like lying back in bed and her kind of modeling what she was wearing. And I was like, I don’t like I couldn’t even tell. And it wasn’t that it was like I was waiting to make the choice, I had already made it. But it didn’t really help me accept what was happening, and that the choice I had made wasn’t going to be the end of the world. So again, I’m not gonna promise that he’ll do that for anyone else. Or he will. But I do think that having her come in and just seeing someone else with it was was really helpful. Um, and then to the point about how other doctors can have this conversation with their patients and what they can do to improve. It’s a really, it’s a really tough question to answer because everyone who has to face the surgery comes from a different situation. And I’ve, I’ve talked to tons and tons and tons of different people at different stages of their lives saying I have to have ostomy surgery, like, here are my questions. This is what I’m worried about. I’ve got moms coming to me with young sons and young daughters who are worried about their future. I’ve got, you know, girls and guys in their 20s saying, how am I going to date again. Or I’ve people who are married saying I don’t know if you know, my husband or wife is going to be able to accept this. And so it really just depends on the stage of life that they’re in where that conversation is going to be different. And it also, you know, there’s people that come to me and say, I have the choice, it’s not dire yet, but should I just do it, and save all the pain, right. And so I think the key points that really, really matter is directing the patient to find people, not just like me, but there’s a surprising amount of of ostomy advocates now that weren’t out there when I was when I was facing surgery. And so you just go on Instagram, and you do hashtag ostomy. And just make sure that they know that that’s there, because you’re gonna find so many people who are just embracing who they are now, and it’s just that that level of comfort that sometimes a doctor just just can’t, can’t show, they don’t have an ostomy like, yeah, you’re a doctor telling me this, but do you even know? Right? So just just helping them find other people I think it’s important.
Ameer Farooq 13:01
That a whole point about like, do you even know, I mean, we can talk about these abstract things like, you know, recurrence rates or bleeding or complications, but do I really know what it’s like living the stoma? Absolutely not. And so I’m kind of curious, like, you know, when when we think about, you know, this whole process of informed consent, you know, we we tell people, you know, this is the surgery, these are the risks, these are the options here, make a choice, you know, how, and obviously, you just said this, this discussion needs to be tailored to the patient, but, but how do you think about, you know, when we’re giving that kind of information to people, like, you know, do you think that telling everyone, every patient, all the risks, and going through that in such detail is critical for everybody? I mean, we certainly feel like that because we feel worried about the legal implications of it. But maybe we do people a disservice by going into all the the risks and the benefits and giving them all these options when it’s such a complex, confusing thing, even for us sometimes. What how do you think about that?
Jessica Grossman 14:11
I think that you’re right, that it is complex, and you are coming at it from the medical pros and cons kind of angle without potentially really understanding the psychological and the sociological sides of it. And it’s just not something that they train for. It’s not something that you I mean, unless you have one, like how do you know you just can’t. And so I think, making sure that you approach it, being completely honest about that and saying, I haven’t lived a life with an ostomy I can’t say that I will know what you’re going to go through if you choose to do this. But I do know that there are lots of people out there who are living their best lives because of surgery. So I think as long as you add that to the medical and then you know the the step-by-step pieces that you need to tell them. Again, it goes back to the individual doing their own research, which everyone who should, you know, doing anything medical, should be looking at right? Is just, like making sure that they know, to look elsewhere and to go to the community. And there’s a lot of Facebook groups again, Instagram, there’s just a ton of people, or you know, of course, myself, anyone can always reach out doctors can tell people to DM me on Instagram, that’s totally fine. But asking questions before making a decision, you know, it’s a good thing to do. And I’m sorry to some of the doctors out there, but you just may not have the right answers or know how to answer. So sending them into the community for sure.
Ameer Farooq 15:43
Can you give us some examples of things that you think physicians maybe don’t even aren’t even aware that they don’t know about when talking about stomas or this type of operation that you think if people talk to someone with a stoma they would that would like, come up right away?
Jessica Grossman 16:01
Oh, my God, so many, like how to dress, how to have sex, what to eat? Can they swim? Can they got like, what exercise can they do? Like, literally how to live life is just what it is. And again, it’s circumstantial, right? Like, what’s a mom going to ask for their child who’s young versus, you know, a grown adult who’s their life is flipped upside down, right? I think, I always say it was really lucky that I had surgery when I did, because I hadn’t fully developed into a human being with a, with a routine and a schedule and, you know, a social life. So I developed mine around that. But it’s, it’s for everyone, it’s just how do you live life? And, again, unless you’ve experienced what it’s like you, you just can’t answer that, honestly, you can try. But you know, it’s not going to be the truth.
Ameer Farooq 16:53
Yeah, and for sure, we’ll put all the links, obviously, to your Instagram page, and to your website, and blog, and to some of the other resources that you think are valuable, because this is gonna be so important for other patients and surgeons, frankly, so that they can give this to their patients so that they can really reach out to people and ask those kinds of questions. Because you’re right, we would have no clue, really about how to approach all of that. We’ve been talking sort of about the situation where you’re, you were in the hospital, and, and you maybe had a bit of time to think about what to do. Sometimes we run into this situation where, you know, it’s an emergency, and, you know, someone’s bleeding or has a perforation or something like that. And we have to do this, you know, in the middle of the night. And obviously, that’s a very kind of different discussion. And I know your situation was a little different, but in your discussion with other patients, is it something different we should be doing for those types of situations, emergency situations? Or maybe we should just be simplifying things, you know, either we do this or you die kind of thing. What how do you think about that emergency type of situation?
Jessica Grossman 18:04
I mean, technically, mine was emergent. But I think I had like three days before I got scheduled in. I was told after the fact, by the way, that even if I said no, they were gonna do it, but they weren’t they they knew I would be smart enough to make the right decision. But I have spoken to people who, who have said, I woke up from a motorcycle crash and suddenly had an ostomy. Or, you know, something to do with pregnancy, it went wrong and I ended up with an ostomy. I think that it’s the same conversation. It’s, this wasn’t your choice that we had to do it because of X, Y, and Z. And it’s going to change things. But there are other people out there. And again, it just goes back to you’re not alone. And I think that it’s even more important, the the factor that they’re not alone, to get that across. Because they didn’t even have time to look for people. So maybe putting an emphasis on you as the physician or the surgeon to come prepared with resources. Again, uncoverostomy.org first place you send them, you can just read about all the stuff that I’ve dealt with. And from there, they’ll know there’s other people out there. I think yeah. And then I think two is making sure that they’re connected with a really good intrastromal nurse. I haven’t mentioned her yet, but I had one who was absolutely amazing. Like, I’m pretty sure her and my mom still keep in touch. But she also really helped just get used to everything, tried out different products. You know, just have someone to talk to who knew a little bit more of the ins and outs then then the surgeons did.
Chad Ball 19:45
Yeah, I think that’s a great point. You know, for a lot of us, I think we truly deeply believe our stromal nurse folks are some of the most important individuals in a hospital in an outpatient setting. So that’s great advice. Jessica, I want to I want to break this down into really short snapper questions, and I hope you feel free to pass on any of them. But.
Jessica Grossman 20:12
Oh god. Okay.
Chad Ball 20:13
Well, what do you have in terms of tricks and tips for managing your stoma in particular, you know, we’re thinking about things like when you go to exercise, when you’re riding a bike, when you’re in the gym, so on when you when you want to work out when you want to be more physical, what are some of the points of advice you have? And you know, we’re biased in Calgary a little bit, because a lot of us have looked after a very famous professional hockey player, complete for a long time with a stoma in the NHL, and you sort of see that and you realize that at an early stage, if you’re if you’re, if you’re just training anyway, that that really the potential is massive. And I don’t think, you know, when I bring that story up, most folks that sort of blows their mind, they don’t think that’s possible. So I’m curious, what are your trick to try mechanics, tips and tricks are as well as your view of that?
Jessica Grossman 21:04
Everyone always asked me for tips and tricks, and it’s like, this is like, this is just how I am how I have to be. It’s, I’ve made sure my my bag is empty, and I put on my yoga pants or my bike shorts. And I just work out. That’s it. That’s all it is. There’s nothing special, I’m sorry to disappoint.
Chad Ball 21:24
You know what you’re, you’re you’re not disappointing. And I was hoping that’s what you’d say. Right? Because, because that sort of is the point. You know, it’s, it’s like so many other things we deal with and we live with, in life, you sort of get on with it. I think that’s part of what’s amazing about your outlook and your, your your action in your, in your life. What are some of the biggest obstacles or hurdles or sort of mechanical challenges that you’ve had to deal with over a long period of time?
Jessica Grossman 21:57
Definitely figuring out how to dress both for my ostomy and just to not dress poorly. Again, I had an ostomy when I was young, so still figuring out my own fashion sense. And I look back at photos and I cringe a little bit not gonna lie. But I think being able to find clothes that felt comfortable, but also looked good was you know, it’s a challenge for a lot of women just normally anyway. But also figuring out what underwear and you know, I wear shorts underneath a lot of my pants, or I wear tight leggings. So just getting getting that feel down for what was comfortable for me. I think that was really the the biggest thing. You know, with certain companies who offer different products, trying them out and trying different ones until you find what works. I did find one that worked really well. And then they stopped making them as well. So I switch it’s always scary to have to switch products for for an ostomy because you get so used to something. But I was having a couple of malfunctions with some old products. And as long as you know you try other things and find the best one that works then everything’s pretty, pretty easy after that.
Ameer Farooq 23:12
I know this is probably very individualized for the person and their body habitus. And where the stoma is, but are there any products that you really love and you find to be something that like a lot of people seem to like?
Jessica Grossman 23:26
Well, I can’t name companies because that’s how I get funding for uncoverostomy when I’m sponsored. So I’m not gonna say anything, but I’m open to sponsorship if anyone wants to talk, but I have really opted for the closed end pouches which most most ET nurses are like, are you kidding? Like, you have an ileostomy like how often you have to empty it. So it’s not the norm, but I actually love it way more because I don’t have to worry about the open end. Like that’s what always freaks me out is the end. And it just being open, you know, like where you have to clip it close. I just like it full full circle, take it off dump it. I’m good to go. It doesn’t work for everyone. I do have to empty it more often. Especially if I’m out which I have not been in a while. But that’s one of the downsides of it. And then I also don’t eat a lot like I sometimes I do but what if I’m out and about it’s like I’ll have small little meals or snacks or whatever. So it reduces the amount I do have to empty so that’s why the closed ones really work well for me. Yeah.
Ameer Farooq 24:34
Yeah, that makes total sense. I wanted to draw attention obviously to your blog and your website uncoverostomy.org. It’s been really fun in preparing for this to read through a lot of your entries and watch your videos like they’re they’re like remarkably frank blog posts and like really, really, really, really enjoyable to read. One of the ones that really caught my attention was this one where you you say it’s entitled, “It’s Time to Stop Showing Off Your Ostomy.” And you kind of argue that it’s time for you personally and it was kind of a call to your readers to stop drawing attention to how you are different. Can you tell us a little bit about what you wrote in that piece that post and and what motivated you to write it?
Jessica Grossman 25:20
Yeah, so that was for our 10 year of uncoverostomy anniversary. I have been doing it for, I guess 11 years. And it’s it really came to me because of how far the movement has come. So like I said, when I was 13, you know, there wasn’t Instagram, there wasn’t a lot of places to look for the community. And when you googled things, there were not great photos out there anything related to ostomies was like 60 plus. So I built uncoverostomy with the idea of showing that you can have a stoma, and you can have an ostomy and be young and be active and live a normal life and look good and dress well. Because it wasn’t out there. And but it also wasn’t that well known. Like when I would tell people about my journey and then I had an ostomy they’d be like, what is an ostomy? So there was a learning element, not just about teaching, that the ostomy can be accepted, but just even explaining what it is. And that was half the battle. Now with Instagram, with Facebook with social media, and just the body positive movement, I think had played a really big part is so many more people are sharing now that there’s less of a need to actually explain what it is. Because so many people are just saying that they have them that it’s become a little bit more well known. But on top of that, because we don’t need to explain it, we don’t need to show it as much. Now now people know what it is. And there isn’t a need to draw attention to it. So what I said is, if you look at my original photos, my older photos, you know a bit for uncoverostomy and what I used to post, it was very much like, hey, look at my ostomy, let me tell you about this, how it saved my life, like what it is how it works. But now I don’t need to do that I don’t need to say look at it. Instead and with the more recent photos that we’ve put out, it’s about how the ostomy can help you and save your life. But it’s not the focus of who you are. So my photos, actually what we did is we recreated Top Model photos. And I like posed exactly like them. And I had an ostomy. But the ostomy the focus of the photos. And the point was to show that you can do all of these things, you can be a model, and have an ostomy but you don’t you might not even notice the ostomy. And that’s the point. So, you know, there are a lot of people who have made the ostomy their entire personal definition. Like that’s the first thing they tell people about themselves. That’s how they, you know, decide is the most important thing about them and their lives. But I don’t think that that needs to be true. I think the ostomy has allowed you to be other things. And so that’s kind of what I’m trying to get out is let it just be a thing that saved us let people know what it is. Now look at all the other things we can do because of it. And that’s that’s kind of what the point has been.
Ameer Farooq 28:30
I think for me what that what that blog post really emphasizes like, you know, that is sort of the message that we that I need to remember as a as a surgeon or as a physician talking to patients is like, I think a lot of people are like you that they don’t want to be defined by the fact that they have a stoma. And there is so much more to life than then focusing on this stoma. And, you know, you can go out and do amazing things like you have. So I really learned a lot from that post. So thank you. Thank you very much for doing it. You know, you talked about starting the uncoverostomy blog and congrats on 10 years. What else have you kind of learned from the process of doing this? Have there been any, you know, unexpected things that you’ve learned from from doing the blog and putting yourself out there and talking about your journey?
Jessica Grossman 29:17
Things that I’ve learned?
Ameer Farooq 29:19
Yeah, like, like, I’m curious if there have been things that have happened or people, you know, stories that people have told you that that have surprised you and things that you’ve learned about other people’s experiences through doing this blog?
Jessica Grossman 29:31
Well, I mean, I’ve learned to not be surprised. Because there’s a lot that people have gone through and dealt with. I think one of I don’t think this was a learning. I think this was just a really great story that I really like to tell. And I think it really speaks to the volume of that community element for patients and why it’s important. I was living in New York at the time, and I got a Facebook message from a guy. I think he was 16 or 17, at the time he was in the UK, and he had very bad Crohn’s disease. And, you know, he saw uncoverostomy and said, my, my doctors have said I should probably get an ostomy. But they’re also telling me that I could get a bone marrow transplant as what’s the term, it was like a test to see if it was a trial, I guess, where they were trying to do bone marrow replacements to reset the immune system. And so he came to me saying these are my two options. And that he didn’t want to get an ostomy because he really wanted to be in the army. And he didn’t think he could be in the army with a stoma. So he was going to opt for the bone marrow transplant. And coincidental enough, my father had actually died two years before after having a bone marrow transplant, because he had a rare blood disease called myelofibrosis. And he didn’t actually die from the bone marrow transplant, but he died from the chemo to have the bone marrow transplant. So not only was this something I was very well aware of, but I couldn’t believe that a doctor was suggesting it. As like I have chosen, like, why would you choose to do that after what I had seen my father go through. So we talked a lot, I explained exactly what I watched my dad go through, how hard it is on the body, like just what’s involved, and also how easy it is in comparison to just have ostomy surgery and that it shouldn’t have stopped him from from being in the army, or, you know, even becoming a police officer or a cop or anything like that. And, you know, of course, I said, and I say this all the time, I am not a doctor, I am not giving you medical advice, I am just sharing my stories with you to inform your decision in you know, another way than a doctor. And eventually, after a little while of chatting, he said, okay, I’m going to go and and have the ostomy surgery. I don’t I think you’re right. I don’t know if I need to go all the way to bone marrow transplant. And he did. And he ended up in the army just like he wanted, and I still have him on Facebook, and he seems to be doing really, really well. And so I think I think what that taught me is really the power of, of having someone who just has been through it, to talk through it. Because you just can’t be someone having literally experienced both options.
Chad Ball 32:40
Yeah, that’s a beautiful story. You know, you know, and I couldn’t agree more. I think a lot of us as physicians and surgeons do a pretty poor job of connecting patients sometimes with with some of these harder diseases, whether that’s pancreatic cancer, pancreatitis or gastrointestinal diseases, as you’ve described. And it’s something I do think about on a daily basis and some disease processes, as you know, have really good patient support networks and collegiality and collaboration, and other ones really don’t. And I’m curious, you know, how you’ve seen that progress or or not progress with regard to inflammatory bowel disease over over your, your pathway in your course?
Jessica Grossman 33:29
I mean, I will get emails from my doctor, from doctors who know me, hey, can you talk to this patient? Sure, no problem, but they have to reach out to me. And that’s the extent of it is I, I am an example that the doctor share as a potential option. And I coordinate with them. And it’s only a couple because they know me, they have my email address. And that’s it. That’s all I’ve experienced. It’s just hey, you want to do this? Cool. Yeah, I’ll help. But there’s no, at least from where I am and what I’m connected to. I haven’t really been a part of a patient program. There was a support group at Sick Kids. After I had surgery that I was enrolled in by my parents. They were really convinced that I’d have a really hard time mentally with the ostomy. Little did they know what I would become. But I think that was unique because it was Sick Kids, right? They have support groups for parents and kids for literally everything that you could imagine. But when it comes to more of the adult hospitals, it really is just an email between me and some doctors. And that’s it.
Chad Ball 34:42
Well, it’s amazing again, you know, as Ameer said, that you’re willing to put yourself out there and and to have those interactions. Because I have no doubt that they’re life changing for a lot of the folks on on the other end, given your dynamic personality and your experience. You know, I’m curious if we come back to the comments about about COVID? You know, I, I know you haven’t been out of the house much except to get maybe your vaccine, but how has COVID affected, you know, IBD patients or you in particular, beyond the obvious, obvious stuff? How’s it impacted your life?
Jessica Grossman 35:19
I mean, besides a couple times in March 2020, when we were all a little bit like, what’s going on, like unsure about it, and then going to my cottage a couple times, and then going to the ER, because, of course, it wouldn’t be an ostomy journey without an ER trip at some point. Yeah, I haven’t left. And I think, like, I made the decision to take this extremely seriously for two reasons. One of them is obviously my health and knowing that I am immunocompromised, because then you don’t have a colon, you know, your whole system is not that great at fighting things. And so it was just a risk I didn’t want to take, you know, they don’t know, really, if COVID is worse for IBD patients. But I didn’t want to be the case study for that. And then the second reason is, how many people are putting their lives on the line. And people that I know personally, or professions that I have benefited from, like doctors and nurses and medical staff, they don’t have a choice. And the little bit that I can do is to stay home. And I chose to do that to help them. And even if it’s just me and my husband, and everyone else is terrible, and they’re still going out running around, at least it’s two less people that are standing in the way of us getting rid of this.
Chad Ball 36:47
I wanted to sort of move towards the end there and ask you, maybe a couple of philosophical questions. I’m curious if there was one or two pieces of advice that you could give someone, really at any age demographic that’s recently diagnosed with Crohn’s disease? What would you tell them? What would that be?
Jessica Grossman 37:08
Cool. With Crohn’s disease. I think what I would tell them is, it will suck, it might suck for a while. You might wonder why you were one of the chosen ones to experience the wonders of Crohn’s disease. But there are a lot of solutions to the problem. And maybe an ostomy is one of them, it is more on the severe end. But if that is where you end up, it is not the end of the world. It could be the start of a new one.
Chad Ball 37:44
But let me ask you the flip the flip side of that, what’s the what are some of the pieces of advice that you would give physicians who look after patients with with IBD? And in particular, maybe, I don’t know if it’s just too parsed and too nuanced, but you know, at the surgeon side of things, and then maybe on the more long-term family physician and gastroenterology side of things as well.
Jessica Grossman 38:10
Oh, I’ve had very good care. So I, when I say this, it’s it’s not something that I’ve experienced, but it is that I’ve heard from others is that physicians should listen and really, really listen to their patients. Because IBD manifests in so many strange and weird ways beyond just gut health, that if someone who knows their body is saying that something is not right, or something new has developed, to really listen to them, and to really help figure out how to solve it, whether it’s under your specialty, or you need to bring in someone else. But they’re your patient, and they’re dealing with something that may be really impacting their lives. And they’re, they’re going to need you to help them.
Chad Ball 39:04
That’s great advice. Thank you. You’re right, you know, and it’s certainly not an excuse, but, you know, with, with how busy folks are and how rapid clinic visits can be, it’s easy to slip away from that really important truth no matter what we do, whether it’s gastrointestinal diseases or not. And I think that those reminders are always really important. So so thank you.
Jessica Grossman 39:27
I think a lot. Yeah, I was just gonna say I think one of the things that a lot of IBD doctors don’t really think about, and again, not my personal experience, but is that you would never really think that Crohn’s can affect so many other things. But the gut is really like a main part of the body that can manifest so many different ways. Like I have a lot of skin problems. You know, I get migraines and headaches and I’m sure it’s related somehow to you know, my ability to absorb food. And so it’s easy to kind of cast it aside is oh, you know, it should be under this person or that person. But the gut really is the main part of the body that affects a lot of other pieces. So yeah.
Chad Ball 40:11
Yeah, that’s a great point, right? It’s it’s such a central hub, it’s so important. There’s no doubt. The last question we ask Jessica, really, of all of our guests, and it’s always interesting to hear the answers. And I’m particularly excited to ask you, it’s a bit of a build up, but I think it’s pretty simple which is, if you could go back and visit your younger self and, and the time point is up to you, whether that’s at your initial diagnosis or beyond that, what advice would be would the experienced and mature you have given yourself back then?
Jessica Grossman 40:49
Oh, God, I think it would have been to be more confident. I, I didn’t find my confidence until I finished high school. Um, it didn’t really have anything to do with my ostomy. I was just always a weird kid, and then getting sick definitely didn’t help. But I in some weird way, I think my ostomy gave me a weird confidence eventually, that it would have been fun to have been more confident earlier on. I think I could have, it could have saved a lot of time and effort if I had loved myself when I was when I was younger than than when I had finished high school for sure.
Ameer Farooq 41:36
You’ve been listening to Cold steel, the official podcast of the Canadian Journal of Surgery. If you’ve liked what you’ve been listening to, please leave us a review on iTunes. We’d love to hear your comments and feedback. So feel free to email us at firstname.lastname@example.org or connect with us on Twitter @CanJSurg. Thanks again.