Choosing Ostomy Surgery With Hannah Martin-Spencer - About IBD Podcast Episode 159

Choosing Ostomy Surgery – About IBD Podcast Episode 159

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Is it surprising to learn that some people living with IBD choose to have ostomy surgery? Hannah, a 24-year-old woman, shares her journey through the initial symptoms of IBD at the age of 15, to getting a diagnosis of ulcerative colitis. She describes how her symptoms worsened after diagnosis, including bleeding, bowel urgency, and fatigue, which led to multiple hospitalizations. Hannah advocated for surgery to treat her pancolitis, despite an initial difference of opinion with her medical team. After surgery, Hannah’s symptoms were significantly improved and she regained a sense of normalcy in her life. Hannah discusses the pros and cons of choosing an ostomy over a J-pouch, the importance of quality of life, and how surgery could impact her future fertility.

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Concepts discussed on this episode:</p>

  • Yang X, He M, Tang Q, et al. Assessment of anti-inflammatory efficacy of acupuncture in patients with inflammatory bowel disease: A systematic review and meta-analysis. Complement Ther Med. 2023;74:102946. doi: 10.1016/j.ctim.2023.102946.
  • Bao C, Wu L, Wang D, et al. Acupuncture improves the symptoms, intestinal microbiota, and inflammation of patients with mild to moderate Crohn’s disease: A randomized controlled trial. EClinicalMedicine. 2022;45:101300. doi: 10.1016/j.eclinm.2022.101300.
  • Bae JH, Kang SY, You SE, Jeong HI, Jang S, Kim KH. The Effects of Acupuncture on Crohn’s Disease: a systematic review and meta-analysis. J Pharmacopuncture. 2023;26(3):211-226. doi: 10.3831/KPI.2023.26.3.211.

Find Hannah Martin-Spencer on:

Find Amber J Tresca at:

Find Mac Cooney (mix, sound design, and theme music) at:

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Transcript

Amber Tresca 0:05

I’m Amber Tresca, and this is About IBD. 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 0:20

Welcome to Episode 159.

Amber Tresca 0:22

If you’re a regular listener to this show, you may have heard previous episodes about shared decision making. What shared decision making means is that the physician patient team decide on a course of treatment together. Now you might be thinking to yourself, isn’t that the way it always goes?

Amber Tresca 0:37

And no, it is not, because in some cases, patients aren’t presented with all their options, or patients may only be presented with one possible option and in still others, a patient may ask for a treatment, but the physician doesn’t agree that it’s the best course of action.

Amber Tresca 0:55

And that’s exactly what happened to my guest, Hannah Martin-Spencer. Hannah was diagnosed with ulcerative colitis. As a teen, she went through several rounds of medications and hospitalizations that were ruining her quality of life. Hannah came to a decision about her treatment. She asked her team for a colectomy.

Amber Tresca 1:13

Hannah is a wonderful example of patient empowerment, and she shares her unique perspectives on living with an ostomy, including how it improved her quality of life.

Amber Tresca 1:25

Hannah, welcome to About IBD.

Hannah Martin-Spencer 1:28

Hey Amber, thank you. Super happy to be here.

Amber Tresca 1:31

I’m so excited to speak with you today. This is going to be a fantastic episode that we are doing for World ostomy day, and we will get into all of that. But first, I want to ask you to introduce yourself to our listeners, would you tell me a little bit about yourself?

Hannah Martin-Spencer 1:49

Yeah, absolutely. So my name is Hannah. I’m 24 years old. I’ve had an ileostomy for four years due to severe ulcerative colitis. I grew up in Ontario, but I currently live in Calgary, Alberta, going to school here for acupuncture.

Amber Tresca 2:06

That is, gosh, I can’t wait to talk about that with you, but I want to start at the beginning of your journey, though, because it does help to let everybody know where you started and then how you came to have an ostomy, which was by your own choice, which I think is a super important point that we want to dig into. All right, so tell me a little bit about the start of the ulcerative colitis, what the symptoms were like, and what that was like for you to get a diagnosis. So

Hannah Martin-Spencer 2:40

honestly, it was a little bit weird at the start, when I was about 15, I had noticed some blood in my stool, and then we talked to my at the time family doctor, and they did a fecal calprotectin test, and then we never heard anything back after that, and I never had that symptom again?

Hannah Martin-Spencer 3:01

Yeah, it was very weird. Like, we ended up switching family doctors, and then a few months later, after that, I noticed it again, so we went to her well, I told my mom first, and I was like, Oh, I think there’s, like, blood in my stool. And she’s like, Oh, are you sure it was in the stool? Not like, you know, something else. And I was like, pretty sure, but checked again, like the next time, I was like, yeah, no, it’s bright red streaks of blood in the stool.

Hannah Martin-Spencer 3:28

So my mom kind of was suspicious that I was showing a symptom of IBD, because she was diagnosed when she was 15. I didn’t have any other symptoms, so that was it. No pain. I was having regular bowel movements. So it’s kind of weird. But anyways, we went to my new family doctor, and we told her how I had that test and never heard back. And she thought that was super odd, especially with the family history.

Hannah Martin-Spencer 3:54

So she ordered another test, and then she wanted me to see a gastroenterologist as soon as possible. She was like, You should have already seen one. And I was like, No, I didn’t, though. But anyways, so the closest child gi was about 30 minutes away at McMaster Children’s Hospital, and apparently they had a bit of a wait, so she wanted to see if the gastroenterologist in that same building would accept me because I was 16, I was close ish to being an adult, and I did have the family history.

Hannah Martin-Spencer 4:26

So she sent a referral, and she ended up taking me on as a patient. So about a week after that, I had my first colonoscopy, and as soon as I woke up from the procedure, she sat me and my parents down, and she said I had moderate ulcerative colitis of the entire colon, so it was already kind of everywhere, which is interesting, because sometimes it will start, you know, on one part of the colon, but it was just everywhere. So she immediately gave me a prescription for a steroid and mesalamine and I started taking those right away, but my symptoms actually started developing and worsening after my initial diagnosis.

Hannah Martin-Spencer 5:10

I think in part because I was able to get my diagnosis well kind of quickly ish, after the initial little glitch that we had there. But right? Yeah. So I think after that, it kind of just started developing. I started getting, like, really bad nausea and urgency, pain, fatigue, all those kind of symptoms, and I missed like a month of school, but that was all after my diagnosis. So it was a little bit of a weird, weird start to the journey.

Amber Tresca 5:41

Right? So you started on the steroids and all of that. And so you do that in order to get rid of the symptoms, because they actually got worse.

Hannah Martin-Spencer 5:53

Yes they did. And I also was having symptoms like side effects from the medication too. So it was kind of a whole mess. But eventually, I think it was two or three months after the diagnosis and starting the medication, the symptoms kind of settled down, and I was in remission for a year, maybe two years at most, I think, and then I had to switch medications again and stuff like that,

Amber Tresca 6:24

Right? You were kind of fast tracked because you had a family history of it. So I want to ask you about that a little bit. And because you were a teen, what did you know about your family history, and what did you know about IBD in general before your diagnosis.

Hannah Martin-Spencer 6:42

Yeah. So, as I had briefly mentioned, my mom had been diagnosed with UC when she was 15, and I heard about that from her and and from my grandma as well. Honestly, my mom doesn’t talk about, like, some of the stuff she went through as much. She’s kind of just like, Oh, whatever. But my grandma has told me some interesting things.

Hannah Martin-Spencer 7:05

But anyways, so she actually had to have emergency ostomy surgery when she was 15, so, like a few months after her diagnosis, because she got so sick so fast, and then she had J pouch surgery, I think when she was 18. So I grew up kind of knowing about some of the stuff that she went through and how she had surgery and she didn’t have a large intestine anymore, and I saw her, you know, have healthy times, and also have times where she had pouchitis or bowel obstructions and hospital admissions and stuff like that.

Hannah Martin-Spencer 7:38

So I’ve been familiar with that since I can remember, but her and I did have a few conversations once, once I was about maybe, like 12 or 13, just about kind of symptoms to look out for, or kind of the possibility that I might be diagnosed, because it is partially running, you know, in families. But interestingly, we didn’t know anyone else in our whole family, like when my mom was diagnosed, my grandma kind of tried to dig into the family to see if anyone else had it, and we couldn’t find anyone so other than my mom and I, we don’t know anyone else. But yeah, when I was diagnosed, there was tons of new treatments that weren’t around when my mom was sick, so that was something that was new for both of us. But I would say I was decently well aware of the condition and the disease and kind of what that meant,

Amber Tresca 8:30

Right? I find it so interesting that it was your grandmother that kind of, kind of came to you and said, No, actually, this is how it all went down that tracks, because I’m a mom, I have teenagers, and I’m so glad that we are going through this together and having this conversation, because my kids are aware of a lot, but I have not told them everything, and I think I’m kind of on I see where your mom is coming from, I guess is what I’m saying. Because you don’t want to instill any fear or expect your children to help you process your emotions of the things that happened when you were diagnosed as a teen, as was I, so I can see like holding back a little bit, but your mom was thinking about that and had that conversation with you, so that when something started with you, you knew to go to her right away, even though you had that false start. Did you ever hear back from that fecal calprotectin?

Hannah Martin-Spencer 9:44

Yeah, I don’t know there was that. And then also just, like a regular stool sample so they could see, okay, I guess. And they told me to, like, try and get parts that had, like, the blood so they could see. Maybe it was because of my mom’s history that they asked for the fecal calcul protection Yeah. I don’t know, but yeah, literally never heard back. And then I had never had, like, that was for maybe a week or two where I was having that, like, kind of blood in the stool, and then had the test, never heard back. The symptoms went away, didn’t see it again for like, multiple months, and I honestly kind of forgot about it. And I think my mom did too, because you kind of just get busy with other things, especially if nothing’s like bothering you.

Hannah Martin-Spencer 10:22

And we just kind of assumed, like, Oh, if something’s abnormal, the doctor should let us know. And I’m sure that something was probably abnormal, because there’s no way it was completely fine. It was just super weird. So I don’t know. But luckily, the other doctor we had with the family history, she knew she wanted to expedite it, and so I was able to get that diagnosis pretty quick at that point. Yeah, I was just a little weird at the start.

Amber Tresca 10:49

Yeah, I can’t imagine. I mean, who knows? Maybe your fecal calprojection was, like, totally within the normal limits. And then they tested your stool for, you know, bacteria and all of that, and they found nothing. And they were like, you know, just gonna leave that alone. Just like…

Hannah Martin-Spencer 11:05

Or they forgot about me, what

Amber Tresca 11:06

But blood is a warning sign. Yeah, it’s like, that’s, that’s the blood. Is the thing that requires the investigation. So if they did the tests and said, Okay, she doesn’t have a bacterial infection or anything like that, and the fecal calprotectin is normal, though, I can’t imagine that it would have been. Then we still need to find a reason for this blood, like, what is causing the blood? And then you do the next thing. So, yeah, totally, totally wild.

Amber Tresca 11:34

But in case, thankfully, your your family doctor that you’ve eventually got to was moving things along quickly. So okay, so at the beginning, here you had, you had the blood, but really not a lot much else going on. But then it did get worse, because clearly you had pan colitis. What about those symptoms? What was the worst symptom free for you, for instance?

Hannah Martin-Spencer 12:01

So definitely urgency. Firstly, it’s obviously physically uncomfortable when you, like, are experiencing that and you need to, like, rush the bathroom, but it also caused, like, tons of mental stress and anxiety, and honestly, like some trauma from that experience, like most of my worst memories of when I was super sick or in a flare revolve around urgency and, like, embarrassing moments where I couldn’t make it to the bathroom in time.

Hannah Martin-Spencer 12:31

So that took up a lot of mental space. Like always kind of thinking about, where’s the closest bathroom? If I’m going out somewhere with, like, my friends or my family, is there going to be a bathroom there? Am I going to be able to get to the bathroom and even like, Am I able to leave the house right now today with how I’m feeling and how my urgency is today? Because it does change kind of day to day, as I’m sure you know, but that symptom, like having such urgency, also meant that I missed out on, like, school, a lot of stuff with friends and family and extracurriculars and stuff, which, when you’re that age, that’s kind of like your whole life, like there’s not much to your life besides doing those things. So that was pretty hard.

Hannah Martin-Spencer 13:16

And I mean, I lost friendships, relationships, memories, and that was all just due to urgency. So that’s definitely the worst symptom I’ve ever experienced of anything like anytime I’ve ever had any illness or any injury or anything. Nothing compares to that symptom, because if I just had nausea or I just had pain, and there was days that I did just have that I would still leave the house, because I could, but urgency, I felt like, pretty chopped. So that was, that was not good. That was terrible, yeah,

Amber Tresca 13:48

And I love the way that you put that, that it’s like, you know, the other things like today, I would say my worst symptom is the fatigue, you know. But definitely, when I was your age, it was absolutely the urgency like that was the like you could not control it. People don’t necessarily understand that you have, I don’t know what it was for you. I mean, it could be like, you know, 1530 seconds to get to a bathroom. Because also, for instance, in school, nobody else was dealing with this. So people didn’t understand, teachers didn’t understand, I can’t even, I can’t even take the time to ask you to leave class, like, I just need to leave class.

Hannah Martin-Spencer 14:32

Just need to run. Basically, I guess, yeah, it’s really hard. And I agree with the fatigue. Like, now that I’m not experiencing that. I do experience fatigue, but it’s just nothing compared to to that. It’s so like, even sometimes you’re basically, like, three steps away from the bathroom, and it’s not even close enough.

[MUSIC: About IBD Transition]

Amber Tresca 14:55

After the break, Hannah makes the case for surgery to her doctor.

Amber Tresca 14:58

Hannah, as you said today, you live with an ostomy, and you told me offline, but we’re gonna go through it here as to how you actually made the choice for yourself, and you had to advocate pretty strongly with your medical team in order to bring them around to your way of thinking, because the ulcerative colitis was taking over your life, you were Having hospitalizations and the urgency. So can you tell me the story of when you were hospitalized and how you brought your team around to getting you that surgical consult?

Hannah Martin-Spencer 15:54

So it was my third hospital admission of 2020, so four years after my diagnosis, and the previous two times that I was hospitalized, they were both for a week long, but IV steroids and I changed to a new biologic, basically got rid of my symptoms, and I was pretty healthy and was able to go home, but this time, I was the sickest I’d ever been in my life, and nothing was helping. I was on really high doses of IV steroids, and they weren’t doing anything like I wasn’t getting any better. I was getting worse every day. I was just getting worse.

Hannah Martin-Spencer 16:33

At this point, I had been on pretty much every possible medication under the sun, and tried and failed two biologic medications that year alone. So to put it simply, I was just really over it. You know, I was losing weight. I was in pain. 24/7, I was getting a fever every day, going to the bathroom. 10-20, times a day, I was throwing up. I couldn’t eat, I couldn’t sleep. I could barely leave my bed. It was living hell. Oh, excuse my language.

Amber Tresca 17:07

That’s fine. I think we can say “hell.”

Hannah Martin-Spencer 17:13

Anyways, at the time, my mom was coming to visit me almost every day. So one day, she just kind of said to me, I kind of have you thought about getting surgery, because, like, nothing was helping, and I was just so sick. But surgery was actually my biggest fear. The day I got diagnosed, when we got home, I remember crying to my parents because I was so scared that one day I would need surgery. I was like, Oh, my God, what if I need to get surgery one day, like, just crying. My parents are like, it’s okay, you know, cross that bridge when you get there, kind of thing.

Hannah Martin-Spencer 17:42

But I was very scared of having to have that happen. But at this point I was, like, just so desperate. So her and I sat down and made a pro con list for having surgery versus waiting and trying the next medication, because there was this one medication, and the doctor said I could try it, and his exact words were, it might help in a few months. Yeah, in my head, I’m like, I don’t think I have a few months, but that’s besides the point.

Hannah Martin-Spencer 17:42

So I don’t remember everything that was on the list, but I know that being able to live my life was on the pro side for having surgery and a con for waiting, was staying sick and being on medication for life, because obviously, with medication, there’s also side effects, so that was a con for me. But the next day, when the GI doctor came around to check in, I just really told him I was like, I want my intestine gone and I want to be able to live my life basically. And I’m sure he said other things, but the thing I remember was him saying, I don’t really want to give you a stoma because you’re so young, and you should be out enjoying your life.

Hannah Martin-Spencer 18:55

And I remember looking at him, and I was like, yes, exactly I should be, but I’m stuck here. I want my life back. I want to feel good again. This is not living like I’m 20 and I’m in the hospital, and this whole year of 2020, I have done absolutely nothing besides being sick. I want to feel good again, and I don’t want to wait for a potential, possible that a medication might help me. This will help me. I know it will help me. And that’s what I want. I want to guarantee I don’t want to wait. I honestly didn’t think I had a couple months left in me, mentally and physically. I was 20, and I’m like, five eight, and I was weighing like 80 pounds. I was barely there. So, yeah, it was terrible. I was like, There’s no way, like, I can’t wait.

Hannah Martin-Spencer 19:41

So anyways, he was like, okay, he had the soma nurse come talk to me, and then he agreed that we could go ahead with surgery, but he did pretty much like, beg me to wait for four days while trying this other IV medication to see if it would make any difference. So. So I grudgingly agreed. I was like, okay, and of course, it made no difference. So then he set up a time in the OR, and that was pretty much it. It was still covid, so they weren’t technically doing elective surgeries. So they put it up as an emergency surgery.

Hannah Martin-Spencer 20:16

So I got it a few days later, and when I woke up from that surgery, I almost cried tears of joy, because, sure, my sutures were sore, but I didn’t have that intense like ulcerative colitis pain, and I just knew that that was the best decision I could have made, and I made the right choice. Have no had no regrets, like instantly after waking up, I was like, this is perfect.

Hannah Martin-Spencer 20:44

And then at my six week post op, the doctor made a joke about how if looks could kill he would have been dead. Because the day he tried to convince me to wait those four days, my look that I gave him would have caused him to die. And then he was like, oh, but you know, you’re looking much better and healthier and happier six weeks later. And I was like, Yeah, I told him. I was like, I feel like I’m living again. I’m not just surviving. So that was that was that.

Hannah Martin-Spencer 21:12

And still, four years later, I’m like, that was probably the best choice I could have made. And I think even if I had waited and maybe those meds would have worked, I don’t think they would have worked for life, because my colitis was so severe. I think at some point, eventually I would have had to have surgery. So it was just like, do I want to keep having these cycles of flares and remission and struggling and health and not health? Or do I just want to say, get rid of it, get rid of the problem. Start over. And so that’s what I did. Yeah.

Amber Tresca 21:43

Well I’m so glad that you did that for yourself. And they didn’t, they didn’t want to give you what you wanted. You know, obviously, I personally don’t think the idea of age is necessarily a good reason to not do surgery on somebody, yeah, but it’s the one that I hear the most often, I feel like.

Hannah Martin-Spencer 22:04

Yeah, and it’s interesting, because then after he’s like, oh, yeah, you know, you’ll probably recover really well, because you’re so young, like, yeah, what if I waited and then I was old and I couldn’t recover? I just don’t I don’t even understand at all. Okay, yeah, I don’t know. It was kind of weird. I’m just like, okay, yeah, you should be living your life, yeah, living your life, yeah, okay, I’ll go live my life, but I’m tied to a hospital bed and can’t leave. Like, I don’t know how that’s living just because I’m young.

Hannah Martin-Spencer 22:04

But anyways, I was super No. I was like, nope, cut it out. It’s gone. I’m done. But I think honestly, having my mom there, she really helped, like, give me the strength to kind of fight back, because I knew how her life was after she had surgery, and it was better, right? And I think if I didn’t have that, or if no one in my family knew anything about IBD, and he kind of said that, then that might have, like, convinced me to wait. And I probably would have been, like, just hating my life and super ill for another 4, 5, 6, months, maybe even a year, like, I don’t know. So I’m glad I had my mom. I’m glad I chose that it was just Yeah, I think he could have convinced me otherwise if I wasn’t sure.

Amber Tresca 23:26

I think it’s so interesting too, because you had your mom as a positive example, balancing this idea of when with ulcerative colitis, do you do you throw in the towel and say, Okay, maybe there’s another medication that we could try, or maybe there’s something that’s going to get approved, you know, in six months a year, and can we hold out until then? But I feel like when your patient is saying to you, this is it. I’m so done, and by the way, I’m so sick, and a lot of these medications do take months to work. Some of them are quick, but you know the ones that were available to you at the time? Yeah, you’re talking like six months a year, yeah, for some of them.

Hannah Martin-Spencer 24:13

And the fact that IV steroids were doing nothing, so we’re doing nothing like, I can’t imagine how long it would have taken for this potential medication to maybe possibly work.

Amber Tresca 24:25

Yeah. So I feel like, in your case, you had to advocate for yourself, and you know, you’re providing a wonderful example to the patient community as to how you did so and how you went about it and how you worked everything out. But I feel like, yeah, surgery was, was the was the way to go. Just to give you your life back.

Hannah Martin-Spencer 24:50

And it’s weird, because even afterwards, at the six week check up, he even told me that probably more than likely, eventually, some point in my life I would need. Surgery. So it’s just weird. Like, why would I wait? Yeah, and why would I be sick? And possibly, like, older or, like, other factors that might make the surgery be harder on me, I got it out and I was happy.

Amber Tresca 25:12

I mean, you were sick, but like, you could be sicker too. Like, there’s, it’s, there’s the possibility exists that you could have gotten even sicker,

Hannah Martin-Spencer 25:19

Yeah, and I honestly can’t even imagine, or something like that, but I yeah, it, the possibility is for sure, there, and I felt like four months down the road is probably, that’s where I probably would have landed.

Amber Tresca 25:30

Yeah, and I can’t, oh gosh, I’m five one. I got down to 89 pounds. And so you’re obviously taller than me. You got even thinner. That was hard. Just being that thin was hard. It was painful. And you described something that I think a lot of it’s really hard for people who haven’t been through it to understand this, that you actually woke up from major surgery feeling better than when you went in.

Hannah Martin-Spencer 26:01

Yeah, yeah, it I was surprised, but I was like, yeah. I was just Oh, my God, this is so amazing, like, I was so happy. And yeah, it might seem kind of weird, but until you experience it, you would never understand. Even a couple months later, I think it was my two month after my surgery, my parents ordered pizza because I hadn’t. I’ve been careful with what I was eating, right? And I had taken a picture of me eating the pizza, and I posted it on my Instagram, and my caption was immunosuppression, but at least I can eat pizza. And everyone just loved it. They thought it was so funny. Like, real, like, this is just such a simple joy that I can now experience because I couldn’t basically eat anything before.

Amber Tresca 26:52

Right? And as young as you were, as you still are, yeah, you should be able to eat a piece of pizza. I mean, come on. Like, that’s, that’s, that’s incredible. Is that photo still on your Instagram?

Hannah Martin-Spencer 27:05

I think it is. I think so. Just me piece of pizza, like,

Amber Tresca 27:15

Oh, but it’s a per… it’s a perfect illustration of why you did it, yeah and why it was the right choice for you.

[MUSIC: About IBD Transition]

Amber Tresca 27:27

Coming up next, Hannah outlines her decision to not pursue a J pouch.

Amber Tresca 27:39

Hannah, so, as you know, I have a J pouch. So I want to talk for a minute about the idea of J pouch or ostomy, because it can it’s a really personal decision, and I’m wondering, though, how people are talking to you, like your family or your medical team, how they’re talking to you about the idea of a J pouch, if they’re asking you if you want one, and how you’re thinking about that right now.

Hannah Martin-Spencer 28:17

Yeah, absolutely. I feel like I might have a lot to say on this topic. So I think a lot of the time, at least from people who haven’t experienced IBD or an ostomy itself, they kind of frame the discussion in a no bag versus bag way, kind of cut and dry and like, for example, in the hospital, my medical team, like my stoma nurse, said something along the lines of, oh, but don’t worry, you could get the reversal, and then you can go to the bathroom like normal again.

Hannah Martin-Spencer 28:55

But I feel like statements like that are pretty misleading. Honestly, they’re giving the illusion of a perfectly healthy life. And that’s not to say that people who get a J pouch go on to have a great quality of life like that’s definitely possible, but never again in my life will I ever have a normal or healthy GI system. So go to the bathroom like normal. I won’t like the the anatomy of it is different, like I can sit down sure I don’t have a bag, but it’s not it’s still not normal. It’s still not perfectly healthy.

Hannah Martin-Spencer 29:36

So I just feel like framing it that way is it can be misleading, and I’m saying that as someone who knows how life can be with a J pouch, just having my mom and just knowing that that’s really not the case, it doesn’t just magically give you like normal health.

Hannah Martin-Spencer 29:56

But I think sometimes healthcare practitioners, they see. Be me. You know, young in my 20s, they just automatically assume my life would be better if I didn’t have to have an ostomy for my life. And I think a huge piece of the picture that they’re missing is my ideal quality of life, and what that means to me. As you said, it’s such a personal choice, so many factors go into it, but right now, with my ostomy, I’m so close to my ideal quality of life, mentally and physically and emotionally, closer than I ever thought I would be during those times that I was so sick.

Hannah Martin-Spencer 30:32

You know, I haven’t had very many issues or complications at all with my stoma or my ostomy. I don’t have to take any medication. My blood work is pretty stable, and I feel like I’m actually living a pretty full life, which I didn’t think that it was possible. So to me, why would I risk more surgery? Which, you know, surgery is hard, it takes a toll on you, so why would I really want to risk that just to not have an ostomy? Especially because a J pouch isn’t even guaranteed to work. I know people in the community who had a reversal, and a year later they’re back to an ostomy because their J pouch failed, or they got really sick again. And that’s not necessarily something that I really want.

Hannah Martin-Spencer 31:19

I know what J pouch life can look like. I’ve obviously seen my mom super healthy, but I’ve seen her have pouchitis and bowel obstructions, hospital admissions, all this stuff. So I know that even if after recovery, my life is great, I still need to have two surgeries in order to get a J pouch and about six months to a year of recovery in which I will be living to some degree of urgency or some type of symptoms that are similar to when I was sick and when I was in a flare up, and that really triggers, like, my anxiety emotionally, I’m like, I don’t want to put myself through that again and going back to like, paying attention to where bathrooms are and dealing with urgency, stuff like that.

Hannah Martin-Spencer 32:03

When I go out, I don’t even need to think if there’s a bathroom there or not. You know, I don’t need to, like, I don’t have urgency, even if I’m sitting on the couch and, yeah, I could go to the bathroom and, like, change my ostomy, but if I’m too lazy in that moment, I can wait. I don’t have to run to the bathroom so, and I don’t know, like, like I kind of mentioned before there is some like degree of trauma to that, so sometimes I relive those memories mentally. But why would I want to relive them in real life?

Hannah Martin-Spencer 32:32

And I’ve also never had a doctor or anyone from my medical team give me another reason to have a J pouch, other than to not have an ostomy bag, even when I googled it like before this podcast, because I was curious, and I found no other reason other than go to the bathroom like normal, and that recovery rates are high, but no other reason. So to me, it just feels like it’s really not worth it.

Hannah Martin-Spencer 32:57

So to touch on the IBD ostomy community itself, I find like on the online community, it’s pretty 50/50, for people who are happy with having their ostomy for life, versus those who aren’t and wish they could have a J pouch or eventually do go on to get a J pouch surgery. And I totally understand some people have had terrible experiences with their stomas, with tons of complications, they can’t find a product that works for them, you know, leaks and hospital experiences and all this, all these things, just bad overall experience. So for them, maybe trying the J pouch surgery would be worth it, because that might give them a better quality of life.

Hannah Martin-Spencer 33:40

But I think people kind of forget that everyone’s experience is so different. No matter if you have the same diagnosis, the same surgery, the same everything, each person will experience everything differently. But unfortunately, I think sometimes people who’ve immensely struggled with their ostomy, their voice sometimes becomes the loudest online, and people might be led to believe that they can only live a good, happy life with J pouch surgery or without having to have an ostomy for life like I’ve seen people comment things online about their life With a stoma that don’t ring true for me at all, and that’s fine, but I think people should focus on how they feel their quality of life. If you’re living a great life, do you necessarily need to have J pouch surgery just because someone else thinks that in their experience, it was better.

Hannah Martin-Spencer 34:42

And I also think that belief of living with an ostomy being kind of negative. If you’re seeing that online like as a common thing between people who have or do have ostomies, then that thought that belief is probably pretty cemented when you have your. Healthcare team saying things like, Oh, get the reversal. You can be normal again, or you won’t have to have the bag for life, as if having an ostomy for life is the worst thing that could possibly happen. It’s really not. So I don’t know.

Hannah Martin-Spencer 35:15

I think quality of life is kind of the main thing to consider. And unfortunately, people do have biases with ostomies, and they kind of automatically assume the experience is negative, or that, you know, they kind of feel sorry for you, they kind of feel bad for you. They’re like, Oh, that sucks. But I mean, obviously, if I could just have perfectly normal health, that’d be great, but that’s not the life I was given. So now with anostomy, I do have the health and the life that I want, which I wouldn’t have when I was sick and might not be guaranteed to have with a J pouch, it’s not guaranteed to give me a better quality of life, or even the quality of life I currently have.

Hannah Martin-Spencer 35:57

So I feel like it’s such a huge risk for very small reward, in my opinion, and for my story, in my situation, in my life. So I have talked about it with my family, and my mom’s kind of asked me. I’ve talked to her about that, and I told her, like, honestly, I’m just really scared to have to have urgency again like that does not sound fun to me at all. And she was really real with me. She’s like, Yeah. I mean, if having an ostomy and having to order supplies and think about like, when to change it and all this stuff is something that is okay with you, then maybe that’s okay with you for life, so you don’t have to have urgency. Because she was like, I do, and I always have, to some degree, even when she’s like, not in any sort of pouchitis or anything like that, she still kind of has to watch what she eats to some degree.

Hannah Martin-Spencer 36:52

And she still, you know, you go to the bathroom more than a regular person with a J pouch, because you don’t have your colon. So there’s that to consider, and myostamy, just it really saved my life, and I think that’s a key that people don’t consider. Sometimes. I don’t care if I have to have a medical device, if it’s saving my life and giving me a good quality of life, if I have it and my life sucks and I’m don’t have a good quality of life. And if that’s some people’s story, then they maybe should try J pouch surgery. Maybe they’ll, you know, be able to live a better life.

Hannah Martin-Spencer 37:27

But I think the quality of life and the emotional aspect should be the main focus of healthcare practitioners, not the ostomy bag itself. Because if I’m happy and healthy, then why does my doctor care if I have an ostomy or if I don’t have an ostomy, either way for me, right now, it’s out of the question, because I’m in school for three more years, and there’s no way I’m doing surgery during school, and who knows. I mean, maybe I’ll change my mind in three years, but I highly doubt it, because it’s been four years and I’m, you know, enjoying my life. So right now, it’s not worth it for me.

Amber Tresca 38:04

I don’t. I don’t think it will you, just, you, just you said a word here. I love the way that you framed it. I’ve never thought about it in that way before. Let’s bring it back to that pro and con, you could make the case for, as you were saying, you do need supplies, and you do have to order them. That is something to manage. I don’t think that’s a big lift. I don’t think that’s a huge problem. Thankfully, you know, you live in a place where you can obtain your supplies, and you obviously have a strong voice, and you will make it known what you need and when you need it, and I’m sure that you’ll get it.

Amber Tresca 38:46

But other than that, you’re, you’re totally correct, other than Okay, going and sitting on a toilet, like, like, there’s not, there’s not really another reason. Now, as we discussed, you experienced so much trauma around urgency, so that makes sense. You say, Okay, I have a stoma now I’m good. No more urgency. Somebody who perhaps has trauma around having a stoma, which you also talked about. Then, yes, then that might be a compelling reason to go on to have more surgeries, either a J pouch or some other kind of continent ostomy or a pull through. There’s different things.

Amber Tresca 39:36

But at the end of the day, this is about personal choice, because your mental health and your quality of life are leading the conversation versus thinking about it in a very detached, like unemotional, clinical way.

Amber Tresca 39:56

And the last thing which you didn’t mention, and I and I hope it’s okay to ask you about this. But the other reason that I see given in a lot of spaces, particularly when it comes to young people living with a stoma, is that people want to tell you, Well, what if you meet someone that you want to partner with later in life, and the stoma is a problem for them, and I have thoughts around that, but I wonder if, if, if you have any thoughts on that that you can share?

Hannah Martin-Spencer 40:31

Yeah, absolutely. I’ll start off by saying, If I met someone and that was their issue, that is not the person for me that I want in my life, and I’ll say that as a partner, as a friend, anything like that, because it’s just, in my opinion, it’s a really weird thing to be hung up on. Like, imagine I went and I met someone and they had a Dexcom because they have diabetes. And I’m like, Oh, that’s really weird. Like, I don’t want to talk to you like that’s just so weird, and I understand like people are like that, but that’s not the people for me. Like you’re not on the same emotional maturity, you’re not on the same like level as me. So if that’s your viewpoint, fine, whatever, but you’re not going to be part of my life. So that’s not really a factor for me to consider.

Hannah Martin-Spencer 41:24

But that being said, I do, I do have a boyfriend. We’ve been dating for three years. I met him, actually. I met him in first year on move in day. So that was before I had surgery. We were just sort of like acquaintances. We had, I had gone to a couple of his, like, kind of parties in first year, and then in second year, covid happened, and we didn’t really talk or see each other. We just followed each other on Instagram. But then after my surgery, and I had stayed home for a couple months after that, and then I ended up moving back to where I went to school, which is in BC, and he just replied to one of my stories over something. We started talking again, and then we ended up going out on a date.

Hannah Martin-Spencer 42:13

And that first date, because I wasn’t sure how much medical kind of history I wanted to share. I did let him know that I had had surgery and I was super sick a couple months prior, and I was still kind of, you know, recovering, gaining weight, that sort of thing. But didn’t really allude at all to the ostomy or the stoma itself, just because I, you know, kind of wanted to see how he was as a person, how we kind of because in my head, I was like, if we go on one date and it’s like, not that good, and I probably won’t go on another date, then I don’t know if he really needs to know kind of thing.

Hannah Martin-Spencer 42:55

But anyways, so we continued hanging out. We went on multiple dates and stuff. And then I still never said anything, and it came along where it was, you know, we’re about to become intimate. And I didn’t want to just randomly pause and explain, so I didn’t. I just went for it. And then he was like, you know, hand went in, like, on my stomach, and obviously it’s there, and he’s like, oh, like, what’s this? And I was like, Oh, it’s just because of my surgery. Like, it’s just from my surgery. And he was like, Oh, okay. Like, can you take it off? And I was like, No way. It has to stay on.

Hannah Martin-Spencer 43:38

He’s just like, okay, so whatever, nothing was said about it again, continue hanging out, continue seeing each other. At this point, I was still very like it hadn’t even been a year after my surgery, so only like my very close friends and family even knew about the ostomy. I wasn’t really sharing anything much, and I wasn’t really talking about it online either, which now is obviously a lot different, but so I still just said it was from my surgery. Like, I didn’t really give much details after that. I mean, if I was him, I would have Googled it.

Hannah Martin-Spencer 44:10

But anyways, I guess he ended up googling it. I think he ended up googling it because, like, I remember, like, a few weeks later, I got a text from him, and he was like, is the thing on your stomach an ostomy? And in my head, I was like, Oh no. Like, I should have just told him. But anyways, I replied. I was like, yeah, it is. And then he was like, why didn’t you just tell me? And I was like, honestly, I don’t know, but now you know, and that was that. And yeah. Anyways, so we started dating. It’s never been a thing at all. He is super, like, supportive and proud of all the things that I’ve been doing, like, for the community and stuff.

Hannah Martin-Spencer 44:50

So just knowing, even if like, we were to break up, just knowing how he, like was with it, yeah, I know that there’s people. People who would, you know, be like that. And if there’s not like, if there’s someone who’s not, then, yeah, goodbye,

Amber Tresca 45:08

Yeah, Bye, Felicia. Don’t let the door hit you where the good lord split you.

Hannah Martin-Spencer 45:14

I think it’s kind of like, I think it’s kind of like a weird reason to kind of give like, Oh, what if someone you date doesn’t like it? That’s like saying, What if someone you date doesn’t like how your face looks? Just weird.

Amber Tresca 45:38

That’s…yeah. Also to me, it’s like, okay, so for for a hypothetical person that’s not currently, you know, in my life, I’m gonna make decisions I don’t like, I don’t understand that. Um, I love your answer. I love how you described what happened with your boyfriend. Um, it’s very cute. I might advocate for maybe talking about it a little bit before?

Hannah Martin-Spencer 46:03

Yeah, no, I would definitely say, so yeah. And I mean, now, from that experience, I have learned, so if in future, I would definitely want to disclose, and I would say, like, talk about it when you’re ready. Like, if you want to the first date or not, but I would say probably you want to before you’re about to become intimate, because that might not go over well. In my case, it was fine, but I feel like if it didn’t go well, that probably would have caused, like, some emotional problems with myself, like issues, maybe self confidence stuff would have been a little bit damaged for a little bit of time, right? At least, it worked in my favor. But, yeah, don’t do that.

Amber Tresca 46:48

Clearly you, you chose well. So it all, it all worked out in the end, yeah and yeah, and the idea that you have to take some future hypothetical person into account. I don’t, I don’t understand that. And it is true that if a person couldn’t deal with a stoma, and I’m saying this as a older person who who has been married for 25 years, like there’s a lot more that you’re gonna face. So if a person can’t deal with that, then there’s gonna be other obstacles that you’re gonna come up against, that you’re that that person’s not gonna be able to overcome either. So and also, to me, when you love a person like that is whether or not they have a stoma. Like, that’s not of consequence. You love that person. You love that whole person.

Hannah Martin-Spencer 47:48

Yeah. I think about it sometimes and like, what if I, like, I didn’t have one, and I ended up dating someone, and whether or not they had one when we first started dating, what say you got you get married, and, you know, some people get diagnosed later in life, and then all of a sudden, they then need one. Am I just gonna divorce this person because they need to have surgery and they now have a stoma? No, so if I’m not going to do that, there should be, and are people out there who wouldn’t react kind of in that way?

Amber Tresca 48:20

So right at 100% and I have a J pouch, it’s not guaranteed that I’m going to be able to keep it until the end of my life. So there is the possibility to having a stoma again, and yeah, if I wasn’t married to somebody who was already with me through the first round of surgeries, that would be a worry, probably, you know, like, what would happen? What would happen then? And you shouldn’t have to have that. You shouldn’t have to have that worry then, like you said, That’s not your person. That’s not your person. So, yeah, it’s not a valid reason to not get stoma surgery to literally save…

Hannah Martin-Spencer 49:03

Yes, like I don’t get surgery because of this hypothetical person, but then maybe I don’t even live because I didn’t get surgery so completely I’m not there for this hypothetical person.

Amber Tresca 49:16

Yeah. Another thing that is a big issue, especially for people who can and want to get pregnant, is that going on to have J pouch surgery can cause scarring pretty deep in your pelvis, which can obstruct your fallopian tubes and then prevent eggs from getting to where they need to go in order to become pregnant. So I’m wondering the kind of discussions that you’re having around this, if people are pushing you to or not pushing you, but if people are advocating or asking you if you want to go on for J pouch surgery, if this is something that is also. Entering into into your thought process?

Hannah Martin-Spencer 50:03

Yes, absolutely. I’ve had conversations before kind of about the kids topic, especially with my mom. I do want kids for sure one day. So it has crossed my mind plenty of times of how this would all kind of play into that. And I mean, pregnancy is hard and scary for anyone, but especially if you have more complex medical factors to consider.

Hannah Martin-Spencer 50:29

One thing I was kind of unsure about was how being pregnant with an ostomy would kind of be, because logistically, in my mind, it kind of seemed hard, but I have since seen a few moms online sharing their kind of journey of pregnancy with stomas, with ostomies, and so that’s kind of eased that side of it, but it does definitely play into the possible J pouch discussion, because, as you said, surgery can cause risk for not being able to get pregnant.

Hannah Martin-Spencer 51:06

So then that kind of leads into the question of, What if I do get J pouch surgery and I’m unable to get pregnant? What I do? IVF, what about surrogacy? What about adoption? Would I be okay not having kids? It’s a little more complicated family planning than just like a simple let’s have kids. So that’s probably another reason that I would hold off, even if I do decide one day to get J pouch surgery, I don’t think I would want to risk that before having kids potentially, and, yeah, I think it is a real thing to consider. If you never want to have kids, then it doesn’t really matter.

Hannah Martin-Spencer 51:49

But if you’re thinking that you do, it’s definitely like, what other options would there possibly be if I do have surgery and I can’t get pregnant, but because I don’t necessarily want to deal with all those other options. I would rather just wait and do it myself.

Amber Tresca 52:09

Wait and do it myself…

Hannah Martin-Spencer 52:13

Yeah, I just feel like it’s more realistic for me. And, you know, just Yeah, so yeah, it’s, you know…

Amber Tresca 52:21

It is your body. It’s your life. And again, this is a hypothetical situation, so, but it is. It is one that I think does need to be talked about and considered when these surgeries are in play, even if you’re not even sure if you want to have, you know, want to become pregnant in the first place. It’s still something that needs to be discussed and brought out into the open. I think sometimes it gets avoided a little bit in the gastroenterology space, because there’s also the idea of maybe needing medications again, you know, and then how that gets dealt with, I don’t know. I guess I just err on the side of, let’s talk about, like, all of these things, and get them out and get them, you know, in the air and in the sunshine, before you ever even have to consider making a choice. That’s, I guess that’s just totally things.

Hannah Martin-Spencer 53:15

Yeah, no, totally. And I feel like some people might not have even thought that that would affect it if they’re not told, if it’s not brought up. Yeah. I mean, my surgeon did say, like, if I wanted, I could wait till after having kids to get the reversal. I know he did mention that, but it was kind of just like there wasn’t really much discussion, much more discussion to it. But yeah, it’s definitely like there’s so much, so many things, so many aspects that are pretty important to consider for everyone and should be talked about. Definitely agree 100%.

Amber Tresca 53:54

Well, Hannah, I’m sure you’ve been told this before in your life, you are a very practical person, and I love that about you, and I want to thank you so very much for sharing your thought process, sharing your journey and the more personal aspects of it, because it will absolutely help so many people to feel less alone and help them in their decision making process as well.

Amber Tresca 54:20

So All right, let’s talk about it. Let’s talk about where can people follow you after they look at the show notes and get your social media information. You’re on the you’re on the Instagram. Tell me about your Instagram, and are you also on Tiktok?

Hannah Martin-Spencer 54:35

No, I’m not, actually, but I do want to get into it. So if you follow my Instagram, then you can stay tuned for when I do do Tiktok, because I want to start getting into it. But anyways, my Instagram is at hans, underscore colitis journey, and I post a lot of educational content, but I also post just about like my life with an ostomy, life after surgery, that. Kind of thing, and some stuff that I do in the community, and some blogs and stuff that I’ve written are also on there. So you can follow me. I’m super happy to answer DMS. I love when people message me, so…

Amber Tresca 55:15

Awesome. I hope you’re also going to continue posting about your journey to becoming an acupuncturist, because I think that’s so interesting. It’s so needed. And so how long before you’re out in the field and practicing acupuncture?

Hannah Martin-Spencer 55:33

So I’m entering my second year of four years. So got three more years to go, but this year is when we start learning to actually insert the needles, and we start having our own patients in the student clinic. So I’ll be starting to practice on real people soon, and and then I’ll be out in the world. So yeah, it’s super exciting.

Hannah Martin-Spencer 55:58

I think a lot of good can come from acupuncture, honestly, especially for people who do have IBD or do have mental health issues or chronic illness, fatigue, anything like that. It’s a great kind of adjunctive therapy to go along with your typical doctors, your typical medication, that sort of thing. I get treatments all the time. It’s super helpful.

Hannah Martin-Spencer 56:25

I always tell people they have issues that they should just give it a try, because it really might work for you. It works for like. It’s worked for everyone I know that has tried it. So you can come find me in four years and I can treat you, or you can go, go and try a treatment from someone else. I’m sure it would be great.

Amber Tresca 56:44

I agree it is proven to work for some people with IBD. So it is one of those things that I think sometimes gets sort of some bad press, but there is some good research on it, and maybe I’ll put some of it in the show notes for people to look into for themselves. So Hannah, thank you so much for coming on About IBD, for going through your journey with me, and I can’t wait to see what you do next. So thank you so much.

Hannah Martin-Spencer 57:12

Thank you so much for having me. It was great to be on here and chat with you. Had a lot of fun. So thank you so much.

Amber Tresca 57:24

Hey, super listener

Amber Tresca 57:26

Thanks to Hannah Martin-Spencer for reaching out to me to create this episode celebrating World Ostomy Day. We know that every journey is unique, which is why it’s so important to not make assumptions about how anyone would prefer to manage their IBD, whether it’s based on their age or anything else, Hannah clearly knows her own mind and is more than capable of making decisions about her care.

Amber Tresca 57:48

You can follow her on Instagram at at Hans. Underscore colitis, underscore journey. I will put that in the show notes, along with links to some of her writing. You can also find all of that and more, including a written transcript on the episode 159 page on about ibd.com

Amber Tresca 58:05

Thanks for listening, and remember until next time I want you to know more about IBD.

Amber Tresca 58:14

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. 

Hannah Martin-Spencer 58:30

I love to yap.

Amber Tresca 58:36

So do I.

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