Bowel Moments
Real talk about the realities of IBD...On the rocks! Hosts Robin and Alicia interview people living with Crohn's disease, ulcerative colitis, or indeterminate colitis (collectively knows as Inflammatory Bowel Diseases or IBD) and the medical providers who care for our community. Join us to meet people affected by IBD- we laugh, we cry, we learn new things, we hear inspiring stories, and we share a drink.
Bowel Moments
Meet Tish, the Creator of Luminous Wounds!
Imagine navigating a life filled with complex medical diagnoses while juggling the everyday challenges of parenthood. That's the reality for our guest, Tish, the insightful creator of Luminous Wounds. Her journey with Crohn's disease, endometriosis, and other autoimmune conditions is not just a story of survival but a testament to resilience and advocacy. Tish shares her experiences of battling medical gaslighting and the importance of finding compassionate healthcare providers willing to listen.
The path to motherhood wasn't straightforward for Tish, and she courageously shares her struggles with fertility. Despite the heartbreak of miscarriage and the challenges of pregnancy during a pandemic, Tish now cherishes life as a mother to three, including twins. Her experiences bring to light the emotional and physical trials of fertility issues, alongside a narrative of hope and triumph over adversity with complications like hyperemesis gravidarum.
Yet, through all these trials, Tish emphasizes the significance of advocacy, trusting one's instincts, and the power of sharing stories. Her creation of Luminous Wounds is a beacon for those facing chronic health challenges, encouraging listeners to find humor amidst difficulty and the strength to speak up. Join us as we celebrate Tish’s journey and the impact of her story on the IBD community.
Links:
- Tish's instagram account
- "Life with Crohn's and Endometriosis: An Overlap of Painful Symptoms"- article at Endometriosis Foundation of America
- Link to Mara's episode
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Hi, I'm Alicia and I'm Robin, and you're listening to Bowel Moments, the podcast sharing real talk about the realities of IBD Serve on the rocks. This week we talked to Tish of the blog and Instagram account Luminous Wounds. Tish lives with Crohn's disease, endometriosis and other autoimmune conditions. We talked to her about the journey that she went through to get diagnosed with all of these conditions and the medical gaslighting that happened along the way. We talked to her about the importance of finding the right healthcare provider that listens to you and will work with you on your diseases. We talked to her about her pregnancies and parenting and, finally, we talked to her about her experience with fecal microbiota transplant. Cheers.
Speaker 2:Hi everybody, Welcome to Bound Moments. This is Robin.
Speaker 1:Hey everyone, this is Alicia. We are so excited to be joined by Tish Tish. Welcome to the show. Hi, thank you for having me. We are so, so excited for people to get to know you and to hear your story. But first, our very unprofessional question for you is what are you drinking and?
Speaker 3:to hear your story, but first our very unprofessional question for you is what are you?
Speaker 1:drinking Very, very exciting water. Well, and we should tell people that you are living in Australia, melbourne, australia, so it is an entirely different day and time for you, correct? What day and time is it for you right now?
Speaker 3:Yes, I'm living in the future, so I'm Friday morning for you right now.
Speaker 1:Yes, I'm living in the future, so I'm Friday morning. Yes, so fair Friday morning. Water makes a lot of sense. It makes a lot of sense, Robin. What about?
Speaker 2:you. I am drinking one of our faves Topo Chico lime with mint. It's just flavored sparkling water, but it's so refreshing. I love it so much and you know we love a good Topo Chico.
Speaker 1:We love a Topo Chico. Yes, I am drinking a decaf latte, so I'm sort of pretending like it's breakfast for me as well. Very excited to be drinking. I think I told him decaf it may not be and that I guess I'll find out when I try to go to sleep. Terrible, terrible. Well, tish, we are so, so excited to have you on the show. Welcome again, cheers. I forgot, we always say cheers.
Speaker 3:Cheers. Thank you for having me Cheers.
Speaker 1:Well, again, we're so excited to hear your story. So next question for you is tell us your IBD story. What brought you into our community?
Speaker 3:Yes, so I'm an IBD patient. I have Crohn's disease. I was diagnosed back in 2015. However, I've suspected, I've had IBD for quite a while, maybe 20 years or more. My story is a little bit more complicated because I do also have endometriosis and I had its evil sister, adenomyosis, for quite a while as well, which at last has been cured. I had a hysterectomy this time last year, so I got rid of one finally. So hopefully a little less complicated now, but that does convolute my journey just a little bit, because symptoms of endometriosis and Crohn's can overlap sometimes. So that's been a hard part of my journey, but that's basically where it began.
Speaker 2:Okay, you said you were diagnosed in 2015, but you suspected that you had Crohn's for 20 years, but you suspected that you had Crohn's for 20 years.
Speaker 3:Yes, because my symptoms were all very much GI related. I also have a cousin who has ulcerative colitis, so I suspected something was up, bowel related. Whether we called it IBD or Crohn's, I knew something was wrong with my gut because I was fine for a long time and then I just got hit with certain symptoms you know, urgency frequency or lovely jazz that we all know about when I was in university, again complicated by the fact that I had very intense periods. So I hope that's not too much information for your audience, but I've got used to sharing a lot of intimate details. But yeah, back in 2006, I had migraines, I had very intense cramping, I had severe period pain, I had abdominal cramping, urgency frequency, you name it. So the doctors were very confused. I kept rocking up to emergency departments in severe, excruciating pain and they just kept dismissing it as irritable bowel syndrome or at one point they were looking at abdominal migraine and they did go down that pathway for a long time. And then, a few years later, I had an episode of pancreatitis which led to them removing my gallbladder and and unfortunately, because of that mistake, I ended up with, like a very rare side effect of that surgery, which is called sphincter body dysfunction. So now when I'm given pain relief, I get severe chest crushing pain. It's like, it's almost like a feeling of a heart attack, and the first time I had it I didn't know what was going on. It was after that gallbladder surgery, when they sent me home with pain relief and I ended up back in the doctor's office and the nurse said she's not in a good way, doctor, and he said tell her to get over it. So you know, that's yeah. Unfortunately, that's been a big part of my journey is the misdiagnosis, the medical gaslighting you know from day one, and unfortunately it's just been a case of learning how to keep fighting and keep advocating through all these missteps and mistakes and living with the consequences of those mistakes as well. So, yeah, I did.
Speaker 3:Finally, in 2015, I again ended up in hospital with a few flare-ups of pain and an increase in uptake in symptoms. It actually happened because I was coming off some medication that I was put on for my jaw. I have quite severe TMJ dysfunction, transmenstrual jaw dysfunction and so they put me on a muscle relaxant. When I came off that, because we wanted to start a family, I ended up in ED with pain, abdominal pain and the CT scan suggested inflammatory bowel disease. So it just so happened that because I came off that medication, that medication was masking my Crohn's for quite a few years. So they've kept me on that particular medication. They don't want me to come off that, but it's because of that that, yeah, but I happened to find out. I don't think I would have had it had I not come off that medication.
Speaker 1:There's a lot. There's a lot here. I have a lot of questions. I mean it's interesting because Robin and I were just talking about this the other day about hormones, and actually just spoke to Marla Dubinsky the other day and she runs a preconception conception clinic for people living with inflammatory bowel disease and talking about hormones and that kind of thing and just how little it's studied about the interactions of hormones for women, especially with inflammatory bowel disease. So I am curious, when you did finally figure out the Crohn's, have you figured out perhaps, what was what? Or was it just all so meshed together that it's like difficult for you to be able to say well, this, I think, was the endometriosis, this was the Crohn's.
Speaker 3:Yeah, it's like difficult for you to be able to say well, this, I think, was the endometriosis, this was the Crohn's. Yeah, it's like a puzzle that you have to try and figure out, basically because there are hormones that I think it's prostaglandins that when those hormones are released it causes contractions of your bowel. So when you have your cycle, some women will have more intense cramping than others, and this wasn't during necessarily like my period. This was in the weeks leading up to. So deciphering whether that was endo or Crohn's was tricky and prior to having the diagnosis of Crohn's, it was really like confusing, because and there's a lot of misconceptions about Crohn's and there's a lot of misconceptions about endometriosis too, so figuring out what's's going on can be very, very confusing. But basically, for a while I had a focus on endo and that was kind of stealing the spotlight, and I had six laparoscopies, quite a few back to back every year, and each time they went in they would find endoolesions. So that would be the explanation of the pain. Then, in 2015, there was a difference in the pain and my Crohn's has always been small bowel Crohn's disease and mostly located in the ileal region. So I have a very specific feeling of the pain on one side and I can tell certain symptoms now separate to the endo and the endo after 2015, because what they did actually is they made me have a laparoscopy to confirm that it wasn't endo related. So, even though they saw on imaging like thickened loops of bowel, the doctor said you need to go and talk to your endospecialist and make sure this isn't endo related. So we didn't. So we actually went into his office. We didn't say anything. We just showed him the scans and showed him the results and made him make up his mind. I didn't want to influence the doctor. So the doctor said we need to do a lap, which we were trying to avoid, because with endometriosis you want one surgery done really well instead of multiple surgeries done incorrectly, and you want it done with an excision specialist, not someone who's going to burn it off. So this is an excision specialist I went to. He went in and found no endolesions. So they concluded then this must be inflammatory bowel disease. It was a shock that they found no endolesions as well, because every other lap had found endolesions. So they said finally, the treatment that you've been on has hopefully been working.
Speaker 3:So that went quiet for a little while and then the spotlight went to Crohn's. Then I was asked to see a IBD specialist from my GI. Within a few minutes the red flags went up with that specialist because he started asking me about my childhood and if I'd been abused as a child. And he went through all my family members and asked how my relationships were with them and if I had any abuse. It was very confusing and he said he concluded that he didn't think that this was Crohn's, he thought it was an incidental finding and that I needed to see a psychiatrist to talk about the stress from my childhood. So the worrying factor there was that I had just started on Budesonide, my first ever treatment for Crohn's disease, and it had made me functional. So I'd gone from bedridden and in pain with all these horrible symptoms to back to work and my worry was that if this specialist went and told my GI this, that they'd remove the treatment.
Speaker 3:But luckily, the moment I got out of that doctor's office I got on the phone to my GI and I said look, this is what he said. I don't know why. And my GI said did you show him your results? And I said yes, I had everything he told me to give, right there in front of me. He didn't want to look at it, but he insisted I see a psychiatrist and he apologised. The GI apologised and said I'm sorry, I thought I was sending you to the best. We'll keep treating you this way and we'll see how we go. So I kept taking Budesonide for about another year and a half year or two, and I'd have to increase it when there was, you know, a flare up, and then, basically, it was time to start a family, and so we had to reconsider a few things as well. So, yeah, so it's been a confusing, confusing journey.
Speaker 1:Oh my gosh, I am so sorry that's that is so invalidating. It's so incredibly invalidating. I'm so sorry. I give you very high marks for not punching that person in the face the moment that came out of his mouth, because, yeah, that's, that's really terrible. And I'm glad that your doctor responded. Your regular, your first GI, responded in the appropriate way to say that is not okay and continue to help you the funny thing is is that my endo journey followed a very similar path as well.
Speaker 3:So they found endometriosis in 2007 in a laparoscopy and she said I don't think this is endometriosis. In 2007 in a laparoscopy. And she said I don't think this is endometriosis. This is stress, and if you don't quit your job, you won't feel any better. So her recommendation was that I stopped teaching and that that would cure my endometriosis. So I didn't get any treatment for endo for another two years after that, and then I found a different gynecologist and when she went in for the second lap for endo, when I woke up, she said no, no, no, this is definitely endometriosis, you need treatment. We're going to start you on treatment and it's not in your head, it's definitely in your pelvis and we're going to fix this up. And so both endo and Crohn's were misdiagnosed was found, and then I was told no, so yeah, it's been a journey.
Speaker 1:Yes, yeah, I mean, and again like what a thing to mess with your head, where you're like no, no, no, I finally have an answer. And then this gets like the rug gets completely pulled out from under you to be like no, no, it's not actually that thing twice, not just once, but twice. That is very, very, very frustrating, is not even a valid enough word for it, but that's incredibly frustrating for you. So, talking about starting a family, I don't know a lot about endometriosis, but I know of course that does complicate getting pregnant and staying pregnant. So does Crohn's. So I am curious about your journey there. I'm guessing it took a fair amount of medical intervention and a lot of talking to a lot of people about it.
Speaker 3:Yeah, so luckily, because the endo was being I guess I say luckily, but a funny, I guess, coincidence of fate in it being misdiagnosed is that I finally did get onto the right track. And so, in seeing an endospecialist, they were actually a fertility specialist as well, and so they were very fast to ask are you wanting to start a family? And so, without even basically meaning to, they did all the testing and everything to make sure I didn't need any further assistance. They found out I wasn't ovulating naturally because I had a high AMH level and that indicated that I haven't been ovulating correctly. So they started me on some medication to help me ovulate. I did get pregnant quite quickly.
Speaker 3:Unfortunately, my first pregnancy did end in a miscarriage, which was quite devastating because you think that the hurdle is getting pregnant and then, once you're pregnant, you think, yes, you've done it, you don't need to worry anymore. And I didn't realize how common miscarriage is. So one in four is the number, and so I kept blaming myself that I'd done something wrong or that this was because I've been told for a long time, since I was 19, that I probably wouldn't be able to have a child. Based on all my symptoms and misdiagnoses, I was misdiagnosed with polycystic ovarian syndrome as well. So they told me that based on that, I wouldn't have children. So that, yeah, that was ringing, felt like it was ringing true. Then my specialist said after my miscarriage that around six weeks post my miscarriage, that the new research is indicating that if you try again after that amount of time, that you're more likely to carry to term. So I, even though it felt like I wasn't ready, I desperately wanted a child and I knew I wanted to be a mum and to try again. So, you know, went with whatever the odds were and I got pregnant again and was the most stressful pregnancy because I was scared every day. You know I didn't want to tell anybody till she graduated, so I just because I just the fear, you know, um, and yeah, so I was able to carry her to term. She, when she came out, she wasn't breathing as well, so the scariest few minutes of our lives, but. But they did get her breathing and luckily she's earthside now and she's turning seven this year. And then when, funnily enough, during the pandemic, they told me if you want to have a sibling for your little one, you know, now's your chance.
Speaker 3:Your adenomyosis looks like it's actually getting better, which never happens, according to them. So the size of my uterus had gone from being, you know, quite large and it was very obvious. My adenomyosis was diagnosed after I had my daughter, which they had suspected, but you, unless you can see it on scan, will actually get a biopsy. It's very hard to diagnose. So it was very obvious, though, on scan, and so they said back in 2020 now's a chance. So we went through the process of starting the ovulation medication again, but I got something called ovarian hyperstimulation, which is not a fun side effect. I ended up in hospital. I was in an excruciating amount of pain. Basically, the ovary is obviously overstimulated and you feel very, very unwell, and this is just before the pandemic started. So they switched me to a different type of ovulation induction medication, and a side effect of ovulation induction medication even though I was told I would never have children is twins. So in May of 2020, I found out I was pregnant with twins. So, yeah, 2020, I found out I was pregnant with twins. So, yeah, I'm surprised. Everybody, including I'm still surprised. They've turned four now and I'm still in shock. So I went from fearful that I would never be able to have a baby, to being able to be blessed with three beautiful kids and they are so again.
Speaker 3:That pregnancy then became the most stressful and probably the most difficult thing I've ever done in my entire life because of all the complications. All manner of complications arose from that pregnancy. Twin pregnancies are very high risk, and so I was alone when I found out that I was pregnant with twins, because what happened is I had hyperemesis gravidarum. It's like severe morning sickness. It's 24-7 morning sickness. You can't eat, you can't drink, I couldn't even brush my hair without vomiting. So it was intense.
Speaker 3:That happened within three weeks of finding out I was pregnant because I was always being. I had so many blood tests very early on with my specialist. So when they told me I was pregnant, they said your HCG is quite high, so we just need to make sure this isn't, you know, a multiple pregnancy. And I said you said that with my daughter, so I'm not worried. And then I ended up in hospital because of the hyperemesis and I was alone with the pandemic and they made me do a ultrasound. They said let's just check. We need to check because your HCG is actually skyrocketing and it indicates twins. So I was like, okay, you can do it, but I doubt it. And they did the scan. I was alone for the scan and I saw the two. They said they won't see heartbeats or hear heartbeats, but we'll see the two sacs. And lo and behold because I know a little bit now, quite a lot, being on this journey I saw the two sacks and the swearing just did not stop and the sonographer actually got really worried. They were like are you okay? I was like no, I said where are they going to go? Where, how, what? Like? My worry was where is it going? Like? How are two babies gonna fit? Because I'm very little.
Speaker 3:One pregnancy was I had pelvic instability with one pregnancy, so I was. I had to walk back to my hospital bed and, um, my nurse saw me and she's like are you okay, honey? You look like you've seen a ghost. And I just said twins and she's like yay, and I said no, no, no, no, no. So, yeah, so twins. So surprised everyone. But yes, it also led to some complications, so I can bring it back to IBD, if you like it.
Speaker 3:Um, based on my body being put through quite a rough run, the following year, I actually contracted a very intense and very horrible infectious disease, like a gastric infection called C diff, and it's not a fun one. Normally, though, the symptoms cause like extreme diarrhea, like 20 times a day, and vomiting, and all that kind of stuff. I didn't have any of those symptoms, though, which I'm very grateful for. That's the one good thing that happened is it didn't present normally, but because it didn't present normally, I had to again check off all the lists. Is this endopain? Is this because I suddenly got abdominal distension that made me look like I was pregnant, and I was just crippled with severe systemic nerve pain like aching, and I was bedridden for weeks and we thought Crohn's flare. We thought endoflare adenomyosis, but we got everything checked off. I went through everything. I got all the scans tested. They're like no, your adeno is under control, your endo is under control. No, the Crohn's is under control. But then, when I asked for the stool test, that's how they found the C Diff, and C Diff can be a very stubborn infection.
Speaker 3:I first contracted it in Bali in 2017 after I'd had my miscarriage. My family took me away to try and get away after the miscarriage because I was in such a bad way, so they took me on a holiday, and then I got Bali belly, which ended up being cdif. And if you get cdif once, unfortunately it can stay dormant in your system, and so after the intense pregnancy and in being in hospital basically all of 2020, with hyperemesis and all the other colorectal complications that came with having twins, somehow I contracted cdif again. Or the antibiotics they put me on after having the twins for some random infection I got may have triggered it again and it just wouldn't go away. They tried antibiotics for the rest of the year this was May of 2021. And for the rest of the year it just kept being a cycle of antibiotics. It'd go away.
Speaker 3:It stopped the antibiotics, the C diff would come back, and then, unfortunately, towards the end of that year, my calprotectin started to rise, and so that really alerted my GI and he said we need to get you in for a colonoscopy. But because I don't know if you knew, but Melbourne had some of the harshest lockdown restrictions in the world during the pandemic, and so in January of 2022, we actually had a code brown in hospitals, where they were only taking really urgent cases, so any electives were cancelled. So my colonoscopy got cancelled and about two weeks later I landed in hospital because the C diff just went insane and my Crohn's blared because of the C diff. Tragically, my GI decided to retire at that time and with that came a new GI who decided to make my life miserable and questioned whether I'd ever had Crohn's yet again. And yeah, I know, you thought it was only twice. It happened three times.
Speaker 2:I have to stop you for one second, like what in the world? What in the world? First of all, as patients, we gaslight ourselves right. I mean I do, especially when I'm having symptoms and all my labs look beautiful and I'm like my body is a liar. But then I'm like, well, am I making this up? I literally say that to myself. Am I making this up when I know that I'm not? And now you have had not one, not two, but this is the third doctor who has said this to you. It is infuriating. I'm so, so sorry. Oh my gosh.
Speaker 3:Some doctors forget is that these are individual cases. We're looking at human beings who have very different bodies that work very differently, with a whole host of other external influences, and so they don't individualize the cases, they just some of them, not all of them. Some of them just think Calprotecta needs to be this high for it to be of an issue, or, you know, inflammation needs to be seen on scan for there to be this high for it to be of an issue, or, you know, inflammation needs to be seen on scan for there to be Crohn's where we all, as you're saying, you know, robin, you can have your labs come back all clear, but you can be so symptomatic. So finding a doctor who listens to you as a patient and looks at the patient and says how's the the patient has been the key for me. And so in February, when I met this doctor, all the red flags went up because at first he was, you know, charming me with. You know, I have an IBD nurse and I think that the problem is that your Crohn's has never been treated properly and I was like who is this? You know angel, who I've met, who wants to take my IBD more seriously? Wow.
Speaker 3:But then, within less than 48 hours, he says I think this is all incidental, I need to actually educate you on the difference between IBD and IBS. And I said I know the difference very well. And then he said you know, I have a patient next door whose calprotectin is in the thousands. And I said so what I said? If you talk to my GI the one who retired he would tell you that I'm very little and these things affect me very differently. So three milligrams of budesonide is very effective for me, whereas for a lot of other patients that might not be enough. So he said I don't think so. And I said if you could start me on budesonide, just so that I can function I've just had newborn twins, please do something. And I felt like I was begging to be taking taken seriously. And he said well, look, we'll trial you on it like a like, let's see.
Speaker 3:And within less than two weeks I went from being bedridden and in hospital to functional again and able to move house. We happened to be moving house at that time, so I was able to do that. But again the red flags were going off and he was the one that said you know, this C diff we really need to take seriously. He got an infectious disease specialist to come and see me and they put me on insane levels of vancomycin, which is one of the harshest antibiotics and strongest antibiotics, and I was on like 2000 milligrams a day for months and then the doctors just started disappearing. I just couldn't get hold of them, I couldn't talk to them and I'd run out of scripts and so I'd be without medication and that risks the C diff coming back whilst I was waiting for this procedure that he was convinced I needed.
Speaker 3:And the procedure was something that at first, when I heard it, I was so scared and really didn't want to do it. It's called an FMT fecal microbial transplant, and just the idea of that was putting all sorts of fears into me. And I asked could a family member be a donor? And he laughed and said oh, no, no, no, no, not at all, whereas my previous GI had said you could just get a family member to donate. So I was being told different things. It was all very confusing. So I decided look, I think this is kind of like what happened with my endo. I think it's time I find my own specialist.
Speaker 3:So I did some research. A friend of mine who had Crohn's disease, raved about her IBD specialist. He's a professor at one of the top universities here. So I made a call and they said, look, we can't get you in till June. And this was in February. And I was like, look, I'll wait. You know, put me on the waiting list, put me on a cancellation list, please.
Speaker 3:And then in May, when I got to May this you know, gaslighting GI that I had been given he made me. He made a phone call and said you know, I think it's time I pass you on to one of my colleagues. And I was like, why? And he said you know, there's nothing more I can do for you, tish. And I said, but what about the FMT that you've been going on and on and on about and telling me that you were organizing? And he's like I don't do them? I was like how do you go from organizing it to suddenly, six months later, not doing them?
Speaker 3:And having had convinced me that this is my only hope, because C diff, if left untreated, can be life-threatening. That's the other thing I should mention. It can cause horrific consequences. So you can get something called toxic megacolon. And when you see your bowel inflating like the distension of my stomach looking pregnant, you get really worried that at any time this is going to switch to life threatening and you land in hospital and you'll need parts of your bowel removed, and you know so.
Speaker 3:I knew enough to know that this is a very serious infection to have, especially when it's refractory and won't go away. It's very hard to treat. So when he was chopping and changing his mind, it was talk about medical gaslighting. I just felt like I was going insane because one day he was all about I need this and then he was like no, I don't do this. It was very, very confusing. So I'm glad I made the call to find my own specialist. It just so happened that I had to wait just a few more weeks to see him. But the other thing is this doctor left me. That phone call was the last time I spoke to him, with no exit strategy, for the C diff Didn't leave me with any scripts for vancomycin or any other antibiotic.
Speaker 3:I was just left alone. I never knew what would happen. I didn't know if I'd end up in hospital dead because of this infection. So I was terrified, and trying to look after newborn twins at the same time. So it was shocking.
Speaker 3:Thankfully I went in to see this new doctor but I was terrified. I was so scared that he would do the same thing palm me off. But thankfully he agreed that the vancomycin dose was at stupidly high levels and that's the first thing that had to go. So he helped me wean off that. He said budesonide can make C diff worse. So he wanted me off the budesonide and he made a plan. So the first plan was to obviously treat the C diff and he said he's able to do the FMT and that a family member could donate. And so now it's a long running joke in my family because my husband saved my life, because he was my donor.
Speaker 3:So you know there's a lot of shame around this kind of procedure and at the time it's taken me till now to really talk about it. I have my little blog, luminous Wounds, but I've never actually spoken about the FMT because it's taken me a very long time to process it and to try and dissolve that shame that's attached to it. You know, because it wasn't a fun thing to do. You know none of this is. But I do want to kind of break the shame and stigma that's attached to these kinds of diseases, just IBD in general, endo all of this. You know talking about periods, talking about going to the toilet and bowel habits and you know frequency and urgency and all that kind of stuff. There's just so much stigma attached and I just want it to go away so that we're not left feeling so alone and so scared. Because I was terrified. But yes, having my husband be the donor was the thing that helped me get through.
Speaker 3:I ended up having a colonoscopy. It's a procedure where they take the sample and basically, while you are under and they do the colonoscopy, they're able to basically fill the bowel with that sample and the theory is that that gut flora can annihilate the C diff. And he warned me that for some people it works and for some people they need a few procedures. So I was very scared but thankfully, touch wood wood, it worked, yeah. And then he went on to treat the Crohn's because while I was under he said with the colonoscopy, it's very obvious that you do have Crohn's disease. And again it was that sigh of I do, because the other doctor said I didn't. And you know, he said it was incidental. He's like no, no, no, you definitely have Crohn's and we're going to do a pill cam because he wanted to find out the extent of the disease.
Speaker 3:And back in 2015, I don't know if I mentioned it, but I had three colonoscopies. I remember waking up from each one with my GI at the time saying, sorry, we can't get far enough to get to the point on scan, so we need to repeat the scope next week. And then I did it the next week and then I woke up again and he said I'm really sorry, but I'm going to send you to another hospital to have something called a double balloon enterography where they hopefully can get far enough. And they did it. But again when I woke up, they said we couldn't find the source. So it's always been a case of we think this exists, we just can't find it.
Speaker 3:So when this new doctor said we want to do a pill cam, that's what I'd been waiting for for so long because I knew it existed and I remember seeing it on the notes of my previous doctor. It said pill cam question mark. And I always wondered why don't you just do it? But I felt felt like if I pushed, they'd think I'm, you know, crazy or they already. I felt like they already thought I was crazy. So I never. I kind of felt like I had to stay a little bit quiet and not push too hard, whereas this new doctor, he took it upon himself and said no, you need the pill cam.
Speaker 3:And the pill cam found extensive small bowel cramps. And that moment I broke down in the car after the appointment because they just make you feel like you're insane. So to be validated and to find out that I had extensive, not just cranes, it was all through the bowel now and I wasn't insane, I was right. And he said we're going to make a plan to treat you properly. You need to be on long-term treatment, not just Budesonide. So he tried methotrexate. Unfortunately that didn't work for me. I got every side effect possible because of that gallbladder removal. I have lots of issues post-gallbladder removal. So they have to be very careful with the medication they use.
Speaker 3:Then they tried it's called Humira, but is the name for it, but the actual chemical name I think is Adalimab, I think is how you pronounce it. So they tried Humira and the thing was it was kind of like what comes first, the chicken or the egg, because the exact same time I'd had the fecal transplant as starting treatment for Crohn's. So I felt really good because of the faecal transplant. But it turns out the Humira wasn't working. But I didn't know. I felt good. I felt so much better so we thought it was working. So they kept me on it for it's been almost two years.
Speaker 3:But unfortunately last year in August my symptoms started going berserk again and I ended up having to say to the doctor look, I think my Crohn's is starting to present itself again. Can you check? And he's willing. You know I'm always scared now when I approach my doctors. But he really listened and he said no, no, let's do another pill cam and let's just change you. He said I'm not even going to wait for the pill cam, let's change you. He said I'm not even going to wait for the pill cam, let's change you. And thankfully he did, because the pill cam showed that my Crohn's has actually got worse.
Speaker 3:So the pill cam was in September last year and it was devastating to see that Humira hadn't done anything. But I'm glad I spoke up and then they've started me on Stelara now. So I had my first loading dose in September and I'm about to have my second maintenance dose next week. So touch wood, it seems to have already been helping. Again, it's just my story is just basically one of a person who has constantly had to raise her voice and just keep fighting the system that's a little bit broken and, yeah, just not give up in terms of trusting pardon the pun trusting your gut and making sure you don't give up and find a doctor who will listen because they're out there. So that's basically been my story with IBD to date.
Speaker 2:I want to just emphasize something you said about not giving up, because we know our bodies best and while it is frustrating and sometimes demoralizing for medical professionals to tell you that your labs are in normal, it took the benefit of age for me to reply to that. Normal for who? Exactly? So I mean now, whenever anybody says, oh, it's a normal range, I'm like great. Normal for who? Not normal for me. Normal for the 45 to 55-year-old men. 50 years ago, when these normal ranges were established, Normal for who?
Speaker 3:Exactly? Who was the standard tested against? You know, because research is mostly done on men, you know, that's right. It's not done on women. So how can they look us in the eye and say your labs are fine, you know?
Speaker 2:Yeah, alicia. Please correct me if I'm wrong, but, tish, I think you are the first person on this show that has actually had an FMT, yay, no, who else had it Mara, don't you?
Speaker 1:remember Mara's dramatic story about like having this super cute nurse. So we had lovely young Mara came on and she did FMT and they didn't warn her that afterwards your body may expel things very quickly and this very like frankly hot nurse, male nurse, came in and she was like hello friend and he kept being like you're feeling okay, you should, you should, you sure?
Speaker 2:oh, my gosh.
Speaker 1:I remember now yeah all of a sudden she was like and she said, all of a sudden she realized why he kept asking that way, because all of a sudden she's like I almost pooped all over the floor okay, because she had to get all the tubes off and she like ran to the bathroom and she's like there's like she was so mortifiedly embarrassed it was a very, very funny story. She's over it now. But same thing where, like she like nobody warned me that this was going to be this way.
Speaker 1:I'm grateful I didn't have that reaction. Oh Well, and she was so upset afterwards because nobody warned her that this may happen, and so she thought she had just pooped out all of the progress that she just made. How did I?
Speaker 2:not remember this story.
Speaker 1:Oh my gosh, oh my God, I can't believe you don't remember this story. It was so funny, like she was. She was laughing too, but I mean cause she's told it in a very entertaining format, but like, yeah, she was very upset. Afterwards, like she said, I just started crying on the toilet because I'm like, oh my God, what have I done? You know kind of thing.
Speaker 3:I was warned. I was told if you have to try and lie down the rest of the day so that you can not go to the toilet, if you can avoid it, and if you do go to the toilet, you need to take some gastrostop or lamotil or whatever it is to try and stop it immediately, because you don't want that being flushed away, because that's like the gold stuff that you've been good stuff. Yeah, but my husband did do something that was quite funny. So I had to. My procedure was like 6 a 6am and I stayed at my parents because I had to do like a full colonoscopy prep and so, because I have little children, I didn't want to be up all night and wake them up.
Speaker 3:So I went to my parents' house that's like my home away from home to do the prep and then in the morning we had to come and pick up the donation that my lovely husband had made and he decided to make us a laugh and not just put it in a regular container like the hospital had given us. He put it in the container and then he put that container in a chocolate box. So I rocked up to the hospital with this big chocolate box and my doctor looked so confused when I walked into the thing and he's like no, no, no, no, this is my husband's sick, warped sense of humour. And so he took it and he laughed. And I heard him walk into the like little you know, the prep area of the day surgery, and the nurse said, doctor, you brought us some chocolates. And I was just like oh, no. And he's like no, ladies, this is not what you think. And I'm just like great, that's my husband.
Speaker 1:Oh, that's so cute. I love that. I do love it too.
Speaker 3:If you don't laugh, you'll definitely cry with this kind of stuff you got to find the funny, 100%.
Speaker 1:Well, I will. I will add a link to Mara's episode in case somebody would like a slightly alternative story to their experience of a fecal matter transplant. Sorry, fecal microbiota transplant. I got that wrong once. Abdominal migraine I'm curious. Why did they think it was abdominal migraine? Is it like? Were there specific symptoms that you were having that they're like? Oh, we think that's this.
Speaker 3:Just because I had migraine, I was having migraines from probably hormonal based or cyclical based migraines. They hormonal-based or cyclical-based migraines, they were connecting that. And because I had bowel symptoms, they just joined the two together and said this must be abdominal migraine, whereas I have someone I know, someone who has abdominal migraine presents very differently. So they feel a little bit of a headache before their symptoms set in and then maybe a day or two later they'll get like crippling nausea and reflux and abdo pain that doesn't respond to Zofrin and any antiemetics or a lot of treatment and they're bedridden for a few days. So that is more abdominal migraine than what I was getting, which was severe migraines that you know. I was photosensitive and would have me lying down for a long time, but the migraine wouldn't be at the same time as the bowel symptoms. That's the thing that made me think this isn't right.
Speaker 3:And then I started tracking my symptoms and I started noticing cyclical patterns. So a week prior to my period I'd be getting the urgency and the frequency. It wasn't just then, but that's when there would be a big uptick in symptoms and the first GI that ended up retiring he's the one that listened to me when I was in ED because they called him just because GI symptoms. So this has to be GI, right? I said to him I really think this has something to do with my cycle and they found endometriosis two years ago but they never treated it.
Speaker 3:And he said look, I really think you need to see another gynecologist. So then again, finding someone who someone else recommends is also a very good idea, someone who someone else trusts, as opposed to being with a doctor that the hospital just gives you because they're not necessarily the best. So this new gyno she said, look, we need to do a lap. And then they found the endo and said no, this is all. This explains a lot of your symptoms. And then she was still willing to discuss my case with my GI. So when it became we don't think this is endo anymore she called the GI and they would talk very regularly. So they became like a team and so that was really important. But, yeah, abdominal migraine for me, I knew that that wasn't what it was.
Speaker 1:No, does not sound like it, that's for sure. At what point in here did you start Luminous Wounds, and what was sort of the impetus for you to get started with that?
Speaker 3:So it's been like more than 20 years now. I was in university when I first started getting symptoms and this was before social media, before anything like that, and I couldn't find anyone or anything to help me go through the beginning of the journey, which is one of the hardest parts of it, especially when you're being thrown from specialist to specialist and hospital to hospital and being told all the different things. It's so confusing. And so the last time I was in hospital when I met the new GI after my regular doctor retired, when he started questioning the diagnosis again and this was the third time that happened just said I can't. You know, I think my story could help some people and I had done a campaign with an Australian non-profit for endo and that was quite successful and a lot of people resonated with my story there.
Speaker 3:Because the other thing is, every time I go into ED with this amount of pain and this chest crushing pain where I can't take a lot of normal medication, they presume I'm a drug seeker. Because I say I can't have this drug. I can't have this drug, just give me this. If you go into ED saying just give me this drug, and you're a regular visitor of ED, they immediately think drug seeker. So they withhold treatment and they treat you horribly. So all of these experiences they withhold treatment and they treat you horribly. So all of these experiences.
Speaker 3:I just decided, hopefully, I could be of help, and so by sharing my story with that campaign, I did end up helping a lot of people. And then I realized, you know, hopefully I could do the same with IBD as well, and just in navigating the medical system it's called Luminous Wounds because I have quite a few different, you know, chronic health issues and I didn't want to focus particularly on one thing. A lot of people have told me if you change your name to make it more specific about endo or IBD, you'll get more followers. So it's a very little blog. I don't have a bazillion followers, but I have quality followers. I will say that. But I didn't want to change it because my whole thing has been that, yes, these horrible things have happened to me, but at the same time it makes me so much more grateful for the little joys in my life and the big joys I think I've recently.
Speaker 3:I talk a lot about my blog, glimmers.
Speaker 3:You know it's the opposite of a trigger and it's something that makes you feel joy and makes you feel calm and, you know, centered, and so I try and focus on all of that. So one of my favorite quotes by Rumi is the wound is where the light enters, and that's basically like summing up my experience as a spoonie, and so you know someone with chronic, so many chronic health issues. So I decided to call it Luminous Wounds because, yes, there are many wounds, but I have three beautiful kids, I have a beautiful family and I am always trying to find the joy wherever possible. And I think, if I can teach other people to do the same thing and not give up no matter what they tell you, to keep trusting that voice and to speak even if your voice shakes because mine has been shaking a lot lately, but I still speak up when I know something's wrong and I trust that. So advocacy now is part of my journey. So I just thought starting a little blog, see what would happen, see who I can help.
Speaker 1:I love that. What a great quote too. No, I think that's really beautiful and I think it's good that it's not disease specific too, because I think it is going to be more impactful for the people like you that it's not just one thing, it's multiple things and unfortunately, with our community, there are a lot of people that it's not just their IBD, it's something else on top of it, Even if it's just the mental health struggle of living with a chronic illness and you know that, gut brain connection being a comorbid thing that goes along with it.
Speaker 3:Exactly, and you know I've had complications from twin pregnancy, from pregnancy that I've had to go in and have, you know, pelvic floor Botox all of last year to try and reverse all the complications from my twin pregnancy. So there's been so many different things. So I talk about all sorts of things fertility, ibd, endo, I don't know, tmj, nerve pain, pain, life in general. So yeah, I try and touch on everything and hopefully can help some people that way.
Speaker 2:There's no way that you're not helping people, I'm sure of it. Even though you said you have a small quality following. We have a small following as well, a small quality following, but we have kept you talking for longer than an hour now. It's now time for me to ask you our last question, and that is what is the one thing that you want the IBD community to know?
Speaker 3:I would say for the IBD community and for chronic illness warriors in general, to trust your gut and find a specialist in your disease. So not a general doctor, not a doctor that can necessarily look at a whole bunch of stuff, but that is focused in on the disease that you have specifically, because for me that has been the difference, the key difference. Making sure that they have that expertise is really key. If I had known that 20 years ago, I think my life might have looked a little bit different. I can't cry over spilt milk, though, so it is what it is. But now I tell anyone who asks you know I have these symptoms. The first thing I say is endospecialist, ibd specialist, not GI, not gyne. Very, very specific. Second is that you've got to speak up. You know, trust your instinct and they might be doctors, but they're not gods. We shouldn't be afraid of them. There are wonderful doctors out there, so keep going until you find one.
Speaker 1:That's really great advice. I mean, I totally understand you're like I can't cry over spilled milk, but it's hard to also say I should have done this when you were being told it wasn't what they said. You know you kept being gaslit into what it actually was. So it's hard to find the right specialist when you don't really know what's going on or you can't Exactly, you don't have the correct information to find the best person to really treat you is so helpful and you know having these social media communities is beautiful.
Speaker 3:You know we're here to help each other and so if you recognize your symptoms or you're hearing someone's story, you recognize your story by sharing stories on podcasts like these and in. You know, online communities ask the question. You know don't be afraid to get on there and search for the answers yourself. You know we're made to feel like don't Google anything. Yes, I agree, because there's a lot of misinformation. You do have to be careful what you believe. You know. If you hear someone telling you they can cure your IBD, run a mile Because there's no cure. We know that. So we do have to be careful what we believe and listen to online. But trying to navigate that as best you can and following people that have references and trusted sources is, I think, just really invaluable very wild ride with you, and so I can't imagine being you.
Speaker 1:To be honest, this is where I joke that I really wish we used the video, because Robin and I definitely were reacting to your story quietly while you were talking, yes, but thank you, thank you so much for sharing it. We know that's not always easy, and so we really, really appreciate you doing it, and I know sharing your blog is incredibly impactful for our community, so thank you for doing that as well.
Speaker 3:Thank you for giving me the opportunity to come on and have a chat and to share my story. I really appreciate it.
Speaker 1:We love it. We love it. Thank you everybody else for listening as well. So cheers, guys, cheers.
Speaker 2:Cheers everybody.
Speaker 3:Hi, this is Tish, and if you enjoyed this episode, please rate, review, subscribe and share it with your
