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
Living with Whoopie: Rachel's Crohn's Journey
For two decades, Rachel Gebhardt has navigated the complex terrain of Crohn's disease with a refreshing perspective shaped by her father's experience with the same condition. Where her father let illness define him, Rachel chose a different path—one filled with humor, openness, and resilience—despite her case being more medically severe.
Rachel's journey encompasses four bowel surgeries and fourteen hospital admissions since 2020 alone, including a colostomy she affectionately named "Whoopie." With disarming candor, she shares the moment her surgeon showed her a photo of a woman in an American flag bikini with a matching ostomy bag cover as encouragement—a moment that eventually inspired her own celebratory beachside photo years later. Through skin infections, bowel obstructions, and dietary restrictions, Rachel maintains her commitment to living fully and modeling positive coping for her children.
The military healthcare system presented unique challenges, but also connected Rachel with Dr. Anish Patel at Brook Army Medical Center, who became not just her gastroenterologist but her advocate and ally. Their relationship exemplifies the profound difference compassionate, specialized care makes for patients with complex conditions. Rachel details her experience with hyperbaric treatments, medication complications, and the surprising remission she experienced only during pregnancy and breastfeeding—highlighting the understudied connection between hormones and IBD.
What resonates most deeply is Rachel's transformation from initially viewing her ostomy as "the end of the world" to embracing it as a source of freedom. Now training for a half marathon and hiking mountains previously inaccessible when bathroom urgency controlled her life, she's become an outspoken advocate for ostomy awareness. Her message is clear and powerful: life with an ostomy can be not just manageable, but genuinely good—a perspective desperately needed by those facing similar paths. For anyone navigating IBD or supporting someone who is, Rachel's story offers both practical wisdom and heartening hope.
Links:
- United Ostomy Association
- Our episode with Dr. Anish Patel
- Pregnancy and Crohn's - video from Brigham & Women's IBD Center
- Pregnancy & Breastfeeding info- Crohn's Colitis UK
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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 Rachel Gebhardt. Rachel is living with Crohn's disease and her dad also had Crohn's disease. They took very different paths in dealing with and managing their Crohn's disease throughout their lives, and so we hear about her story of growing up with Crohn's disease throughout their lives, and so we hear about her story of growing up with Crohn's disease in the family and how she decided to change how she deals with her Crohn's disease with her family.
Speaker 1:Rachel also has a very complicated case of Crohn's disease, and so we talked to her about how she decided to get an ostomy and what it was like to deal with her Crohn's disease while also navigating the military healthcare system because of her husband being in the Air Force. And we talked to her about how she met and is working with our friend of the show, dr Anish Patel, at the Brook Army Medical Center and what that has done for her care and so much more. We had such a great conversation with Rachel. We know you're going to love her as much as we did, cheers.
Speaker 2:Hi everybody, Welcome to Vow Moments. This is Robin.
Speaker 1:Hi everyone, this is Alicia and we are really, really excited to be joined by Rachel Gebhardt. Rachel, welcome to the show. Hello, thank you so much for having me. We are very excited to have you, but first of all, we want to ask you a very unprofessional question of what are you drinking?
Speaker 3:I am drinking my 19 Crimes Cabernet.
Speaker 1:Yes, I like a 19 Crimes's, like a good, like solid choice. Robin. What about you? You are traveling, so I am traveling.
Speaker 2:I am attending um the child life professional conference this weekend in downtown la, and so time zones are hard and they have an illy coffee shop in this very fancy hotel where I'm staying, and so I went and got fancy coffee for this call yeah, and again, I'm a fan of illy coffee, so so that's a.
Speaker 1:That's a yummy one. Well, yesterday I had a friend come over and we hadn't seen each other for a little bit, and my husband, who is a kind, kind soul, put a bottle of Vouv Clicquot in the fridge, and so I am drinking fancy champagne tonight, and so. I'm feeling very, very, very like a boss over here. I'm feeling very, very, very like a boss over here. So, but, and it is delicious, I'm a giant fan. So cheers, guys.
Speaker 3:Yes, cheers.
Speaker 1:So, rachel, next question for you is tell us your IBD story. What brings you into our community? So?
Speaker 3:interestingly enough, dr Patel, my gastroenterologist, reached out to me and he was a previous guest on your show and Dr Patel has come almost like a best buddy of mine. He tells me he can recognize me by pictures of my colon. So he has been my doctor for eight years now and this is actually my 20th year anniversary of being diagnosed with Crohn's disease. But Crohn's has been kind of a staple, just name that I've always understood since I was a young child, because my dad also had it and he passed away young. He did not take care of himself and sadly was not able to get the medications that we have today. He got diagnosed back in the 70s, where they handed you prednisone and opioids to deal with Crohn's disease, and so after years of that he had osteoporosis by the time he was 50. And then he passed away by the time he was 55.
Speaker 3:And my Crohn's has been much worse than my dad's, but I just have an entirely different attitude about it. My dad, kind of like, became his illness. He was always sick and wanted everyone around him to be miserable too, and that's sadly what I remember of him in my childhood. And so when I got diagnosed and my husband and I decided to have kids, I always said that I was going to be as lighthearted about it as I could be, because I never wanted my kids to look back and be like, oh man, mom was a drag when she was sick. Sadly, I have had four bowel surgeries and 14 hospital admissions since 2020. I ended up with a colostomy and I have had every complication that you can ever imagine from the colostomy. Eight of those hospital admissions were last year alone due to skin infections and I had a bowel obstruction. I had kidney stones, which were entirely unrelated, but this entire journey, I've always been able to joke about it. I am one for a really good poop joke and that's why I get along with Dr Patel so well, because he loves to tell those and he's taken me under his wing and is just making sure that I get the best care and the best treatment possible. And so, despite the illness and despite this long journey with Crohn's disease, I feel like I have a really good attitude and a really positive outlook because I do have such great medical care and I am grateful for that because, again, my dad did not have that and so I feel like his life may have been different had. He have had all the care and the options that I have.
Speaker 3:But I love to talk about Crohn's and IBD and especially colostomies, because it's kind of a taboo subject. People don't talk about having a colostomy, they're almost embarrassed. And it's one of the first things that I bring up when I meet people, because I never know if it's going to make a noise and I don't want to be humiliated. So I tell people hey, just so you know, I have a colostomy. So if you hear me rip, one totally have no control over it. And then I tell everybody my kids helped me, picked out the name Whoopie. My colostomy's name is Whoopie because it's like a Whoopie cushion. So we call it Whoopie and we have a code word. If I spring a leak, our code word is mom is being a party pooper and that means we have to go.
Speaker 3:So I am really blessed that my kids have been along on this journey with me and it's been more of like a humorous one. If anything. I've definitely had some scares where I'm not sure I'm going to make it out of the hospital just because they're not sure what's going on or I have a random infection that they don't know. They've had to call in infectious diseases a couple of times, but I keep coming out on top and I'm just so grateful to be here. I'm grateful to be with my kids, to have this time with my kids, and to Dr Patel, whoi was actually just talking to him earlier. I'm one of his few patients that he texts back and forth with because that's how close we've gotten.
Speaker 3:I've been pretty frustrated with the medical system. You know, in the military Sometimes you feel like herded cattle and I kept getting bounced around and couldn't get an appointment. You know, I kept getting bounced around and couldn't get an appointment. They'd be like, oh you have this going on, but our next appointment's in 12 weeks. So Dr Patel gave me his number and now he just personally walks me in and schedules me, because my journey has been such a tough one and I go from feeling great one day just to completely falling into a flare. But one day I was getting an infusion and Dr Patel came and sat next to my bedside while I was getting an infusion for an hour and just talked to me and kept me company. And that's how I knew that he really cared, because most doctors don't do that and to this day he has a vested interest in making sure that I'm getting good care and that I can live my life to the fullest so I can be here for my kids. So I'm really appreciative to him. I was actually messaging with him because last week I had another colonoscopy.
Speaker 3:I get those every single year. I still have my rectum intact, so they go in and do those once a year just to make sure there's no cancer or anything in the pouch. So they called it. I didn't even know it was called a pouch until this last colonoscopy. But the doctor said they were going to check up in my pouch and I said, great, okay, and they did. At this last one they found another stricture in my bowel that they've already had to dilate three times. So that's more than likely going to call for another bowel surgery. But it is what it is. I'm just going to keep chugging along until I can't anymore.
Speaker 2:Pretty intense, okay first of all, we love some anish patel around here, yes, yes. And second of all, I have some clarifying questions, and it's just because I'm curious. So you said you have a colostomy. So you have. Your ostomy is in your colon, not your small intestine which is not usual.
Speaker 2:That's not usual, and usually they, you know they have to take out more of the colon or something. And so for everybody who's listening, who doesn't have an ostomy, you have an ostomy with your colon or an ostomy with your small intestine or your ileum, and so you've heard me say ileostomy, and a lot of our guests say ileostomy because we don't have any of our large intestine left, and so the ostomy we have was with the small intestine, and so yours is with your what's left of your large intestine or your colon. But they left your rectum and all. They didn't give you a Barbie butt.
Speaker 3:Nope. They decided that the recovery for that was going to be really intense, and at the time my kids were seven and five and we are military, we don't have family close, and so the colorectal surgeon said why don't we go in? So what caused me to get this was I developed a fistula, and so they decided to reroute the bowels, you know, through my colostomy and which would would stop the fistula and would heal it, and so I did a temporary colostomy at the time. Then I went and did treatments in the hyperbaric chamber and then they started me on Remicade and Remicade is currently the only FDA approved drug that will treat or prevent fistulas and so that's why they put me on it. But I developed an immune response to the Remicade.
Speaker 3:After being on it four years I started just breaking out into rashes and got what looked like chemical burns all around my stoma, and last year that's what put me in the hospital eight times. I ended up developing cellulitis that went down into the fatty tissue in my stomach and I had to be treated several times for that, and that was pretty horrific. I think what little dignity I had left, having Crohn's disease and having to get this colostomy, having to have a nurse bathe me with a sponge with no bag on was probably one of the lower points in my life and I didn't know if they were going to be able to fix it. They had no idea what was causing it, but thankfully they figured out. A med student, of all people, went and looked back into my records and figured out that my skin would flare and have these spikes of just rashes all around right after I would get my Remicade infusion. So when they took me off the Remicade within two weeks my skin was completely healed around my colostomy.
Speaker 3:But the bummer about that is now because I've had a fistula. A fistula can come back at any time. So Dr Patel had to take a gamble and he said the two new ones out on the market were Sky Rizzy or Ren Vogue, and he felt like Ren Vogue had more support in showing that it would be able to handle a fistula. So I'm currently on that. I can't say for sure if it's working because I have this, this strictured area in my small bowel and it's got two bleeding ulcers next to it.
Speaker 3:But I'm really hopeful that if they can resect that and get it healthy again ulcers next to it, but I'm really hopeful that if they can resect that and get it healthy again, that the RENVO will be able to keep on top of it, which I'm just going to have to live on a prayer for that, because I've tried everything else I've been on Simzia, I've been on Humira, I've been on Remicade, I've been on Pentassa you name it, I've been on it and now Antivio I was on that one too, and so Remicade was actually working very well for me in managing the Crohn's disease, but then it was causing so many other adverse side effects, like migraines and the skin issues, and so they did determine that it was best to take me off of that. So I've been on the Renvogue now for the past three or four months and I feel like I'm doing pretty good on it, minus the stretcher area.
Speaker 2:We know somebody else that has been on the show that is on renvoke because of a fistula, and it was the only thing that helped them. So fingers crossed, yes, fingers crossed that it works for you too, although, um, there is such a thing as renvoke acne, so just if you start to, that's the renvoke, just so you know. In advance.
Speaker 3:Good to know, because I have gotten it all over my arms and back and the doctors put me on steroid cream to help with that, which is helping. But it's like any other drug you take it for one thing and then you get 50 side effects.
Speaker 1:I think I'm still a little bit confused anatomy-wise, and you can tell me if you can't explain this. But so when they did your colostomy like there's the other part that's still connected to your rectum, like did they like sew up the end of it or is it just floating around? Like that doesn't feel like that's a good idea, but I don't know. I'm also not a medical professional. So, yeah, yeah, I'm confused, like what's happening?
Speaker 3:Yeah. So what they did? They originally went in and did a temporary colostomy, but I was having a lot of leakage problems with that because the colorectal surgeon explained that the temporary ones they have to keep pretty flush with the skin and so, because it was so flush with my skin, I was leaking all the time. So four months after I had the temporary one done, I went in and got a permanent endostomy done, because when they had gone up through the rectum for the first surgery, it was so diseased down there that the colorectal surgeon said I am not hopeful that you'll ever be able to be successfully reconnected. He said we could reconnect you at some point, but it would probably include a lot of like bowel incontinence, and wound care would be an issue too that they would be concerned about for healing. So he said, honestly, you could go through the reconnection process and go through all of that, and I give it six months and you'll be back in here needing another ostomy just because my Crohn's became so aggressive and we don't know what made it aggressive. I had my first bowel resection in 2015 in my small bowel and I had a stricture there and they took it out thinking, oh, they'll reconnect the healthy tissue and then this will be great. Well, it had the opposite effect. It spread. It jumped from my small bowel and went down into my rectum and my colon and just started spreading everywhere down there. And then I got the fistula in 2020, and the fistula became an emergent thing because I spiked a fever and started having just symptoms of infection and so they had to go in and thankfully they were able to schedule it, so it wasn't like an emergency colostomy, but they admitted me and then two days later, I had the surgery and, even though I've had all the complications, I am grateful for it because, surprisingly, it does give me a better life than what I had before it.
Speaker 3:I used to go to the bathroom 10, 11 times a day. My life was controlled by needing to always know where the bathroom was or when we would get on the road to take a road trip 30 minutes in. I'd be like, oh, I got to go to the bathroom and it was like that urgency of I can't wait. I got to go and now I go into a bag and it's great, and I've developed a routine of I can feel when I'm about to go, I empty the bag at certain times a day. I'm a pro ordering my supplies and now I can't imagine like what my life would be without the ostomy, if that makes sense.
Speaker 3:That's why I'm so glad that y'all had me on here to talk about it, because I love telling people about ostomies, mainly because there's so many people on like the Facebook support pages I'm on that feel like it's a death sentence. They feel so embarrassed about it but they feel so humiliated by it and I can't tell you how many people say like this makes me want to commit suicide or I feel like my life is over, and I am the person that has had every complication that you can get with them and I still think my life is better with it. My husband will tell you life is better with it and I just want people to know that you don't have to be scared about getting one of these. Your life is not over. Yes, it's something to learn, just like riding a bike or learning how to write cursive. There's a learning curve with anything that you do and there's so many support groups out there. There's even YouTube shows on how to dress with an ostomy or what to wear, how to style them, and I love talking about it, and I love talking with people who've had one before and, believe it or not, there are so many people who have had them and get a reversal, or they have them, but they're just too embarrassed to talk about it, and so I feel like the more we talk about it, the more it becomes a normal thing and people don't have to be ashamed.
Speaker 2:Agreed. So I'm going to ask you a clarifying question for Alicia's sake, because we've had this on between an end ostomy, which you said. So when you said the temporary one, they gave you a loop which had to be close to the skin. Those look I don't want to scare anybody, but loops are really hard to manage. Loop ostomies are really hard to manage. Like you said, they're close to the skin. They leak a lot. I have had an ostomy twice. I had an ostomy when I was first diagnosed and then again in 2020. And the first time I got an end and I was like this is the best thing ever and I had a baby, not a no-transcript, yes. So yes, I'm glad that you said that, because that loop man, it could be a bugger sometimes.
Speaker 3:Yeah, now that I have this end colostomy, they tied off the part of the bowel that would go down into the rectum. But the only reason they left the rectum intact was because it was going to be such a major surgery and so they wanted to give me a little bit of time to get my kids older and I actually set a five-year goal with my surgeon. I'm going to make it five more years with my rectum and this April was five years and I'm still going strong. The surgeon that operated on me three times he's no longer at BMC but I have two new ones that I see and they said they're optimistic that as long as I do the colonoscopy once a year and they go and check, I could keep my rectum as long as I want to keep it.
Speaker 3:They did say the Barbie butt surgery is major recovery, especially if you have like slower healing wounds because you think about like when you walk in, that wound rubs and, um, I have a friend who had a colostomy that had the Barbie butt surgery and it took her a year to really get back on her feet. And I'm just a busy mom right now. I don't have a year. I I live in the car, driving my kids everywhere, and I can't imagine like not being able to sit on my rear end for a year, you know. So my goal is to make it until they, like, get to college and I can just veg and, just, you know, have Barbie butt surgery, you know.
Speaker 2:Um, it's good that you get that surveilled every year, because wasn't it Courtney who didn't get it surveilled and then she ended up having a? She ended up having to have the Barbie butt because she yeah. So, anybody listening, this is great news, but you have to get it surveilled. It's too many things that can go wrong down there.
Speaker 1:Even if it's not in use, unfortunately.
Speaker 3:Yes, I know, and when they went up there they said like the last time they went up there they said that the tissue just looks like white and I mean like what? What you would imagine like tissue that never gets used anymore, like that's what it looks like. I've been lucky. A lot of people who still have their rectum intact with in colostomies still get quite a bit of like mucus that comes out and you still feel that urgency Like you got to go. Mine is only like once a month, very small amount. So that's good. I've been blessed in that regard that I don't have a lot of that. But on my support groups I see other people have a lot of issues with that and a lot coming out. So I'm thankful that mine's been pretty manageable with that.
Speaker 3:But it's crazy how so many people have had these and usually it's Crohn's or colitis or cancer colon cancer that causes people to get them and people either love them or they hate them. It's like there's no in between. So I just try to have the mentality that because I have this, I'm here and I'm spending time with my kids and I decided to take it from a positive perspective early on and that's definitely helped me be able to manage having one of these, just being as positive as I can and also having really good spouse support or your spouse or your partner. I know a lot of people that have these deal with having troubles with their marriage or their partners grossed out by it. And I will never forget about a week after I got my colostomy I was having all sorts of leakage issues and we decided to have some friends over. They wanted to bring dinner to us because I was still recovering and I went into the bathroom to change my or to empty the bag and it ended up just going everywhere Like the bag came off. It looked like a crime scene. When you walked into the bathroom and I had my phone with me and I texted my husband and I said 911, please come to the bathroom now.
Speaker 3:And he walks in the bathroom and he opens the door and the look on his face. It looked like he'd walked into, like a scene from Dateline. I mean there's just poo everywhere because unfortunately when it falls on tile it splatters everywhere. So it was just everywhere, on every surface. So he said stay still, I'll be right back.
Speaker 3:And he goes in the living room and he tells our friends. He said hey, rachel needs some help in the bathroom. I might be a minute, but y'all stay here, enjoy some wine. You know I'll be right back. And then he came back into the bathroom and he scrubbed every inch of that bathroom with wet wipes, then he got bleach and then he helped clean me up. And I just stood there I mean I was completely mortified, but he didn't even miss a beat, he just hopped in and did it. And, yeah, he was helping me at that point to still change my bags. And then one day Whoopi decided to blow air right in his face as he was leaned over helping me change the bag. So that put an end to that. Then I got a real quick lesson on YouTube on how to change it myself, because he's like never again.
Speaker 2:That has happened over on my side. We were Matt and I were just talking about that. He was like man, that gas from that ostomy yeah, Brutal, Brutal, it's bad, it's bad. I mean, let me just say this we say that you don't stink walking around wearing an ostomy bag, Like you don't know if your bag is closed. You don't smell like a walking bag of poop. You're not smelling like poop as you're walking down the street. It's only when you empty the bag or, in my case, when you have a lot of air. If your bag fills with air like a whoopee cushion does, and you just try to release some of the air, then but it's, it's just like anybody else passing gas. So, but you don't smell like poo as you're walking down the street.
Speaker 3:No, no, and it took me a good couple of years and an obsessive hoarding problem with poopery and a lot of therapy to get to that place that I can say I'm good, like I don't smell. Sometimes I feel like I can smell a smell on myself and I'll ask my husband oh my God, do you smell that? Do you smell that? He's like no, I don't smell it. And that's gotten better over time. But I kid you not that first couple of years I did, I struggled with anxiety and depression. After getting this I feel like anxiety and depression go hand in hand with Crohn's disease anyway, especially just because, like when you're when you feel sick, you feel sick and your life changes and you just you can barely get out of bed, you know. So I've always battled that. But getting the ostomy was when it I hit a very low point, especially when I was having all the skin issues and they weren't sure what was going on or how to fix it. And I did. I told Dr Patel, I said I'm really struggling mentally, like I'm, I'm in a really low place, and so that's why he's like, he's fierce, he's like we're going to, we're going to fix this. There's no delaying, there's no outpatient this out, like I'm admitting you and we're figuring this out, you know, and I just am so thankful to him for that because they did figure it out and so I am in a really good place with it now.
Speaker 3:I can say I wasn't a couple of years ago, so I definitely can identify those people that do struggle with it or do struggle with the news of getting it. I know what that feels like and it's almost like you know people who they lose a leg or they they have a disability. It's just because you can't see it, it is still there and you're self-conscious about it. You feel like, oh my gosh, people are going to notice. I mean, even even today, I still do not like to wear something so form fitting that you can see the ring of the bag through it and nobody would know like I don't even think anybody would look or even care. But it's just something about me, I just want to keep it disguised.
Speaker 3:I am not to that point of people on my support groups are like, oh, they have a whole bag, what bag thing that they talk about? And it's people who post pictures of themselves all glammed up or looking great and it's like you can't even tell they have a bag. A lot of people who say, bag what bag? They let a bag. A lot of people who say, bag what bag, they let their bag hang out. They're at the gym, lifted weights and a sports bra. I will probably never be that person that has the self-confidence to do that, but good on those people that do. I love that I have bought so many bag covers. I will post pictures of all my bag covers. I have a lady that custom sews them for me, so I have all different holiday ones and I like to get the ones with the puns. You know any. I love any good poop jokes. I talk about stuff like that, but yeah, as far as wearing it out, I don't do that. I keep it pretty concealed and tucked in.
Speaker 2:The favorite thing I've seen was a Halloween costume that was like a shark bite out of the side. They made it look like a shark bite with the ostomy. That's my favorite thing that I've seen. It was pretty creative.
Speaker 3:Yes, I love that. I think I've seen that. I do have a funny story. I can tell you about the day I found out I needed it. My colorectal surgeon was a guy, absolutely brilliant. He would never look you in the eye. He was real, you know, kind of kooky, real funny, and he was very blunt and he told people how it was, you know.
Speaker 3:And so I come in and I sit down and they asked me this was after they found out I had the fistula and my gastroenterologist that I was seeing at the time did not give me a heads up whatsoever that they would even consider doing an ostomy as a treatment for a fistula. I thought it was going to be something like a string. There were different things that I read that they could do and so I went in there planning on I'm going to go to this quick doctor's appointment and I'm going to spend the rest of the afternoon shopping and it's going to be a great day. So I go to this appointment and they asked me what my goals are for Crohn's disease and I said my goal is to never have to get an ostomy bag. I said that would be like the end of the world for me and it got real quiet in the room and both surgeons that were in there said so. That's the thing. The only way we're going to be able to treat this specific kind of fistula is you need an ostomy. And I literally it was like the rug got pulled out from my feet and I just started bawling Like I was crying and sobbing. And these surgeons they're not used to this, they're brilliant minds and they were like veering headlights and all at once, his name is Dr Chauvier. He ever hears this. Just know, I love you, dr Chauvier.
Speaker 3:But Dr Chauvier got real quiet and he was on his phone and he was scrolling and he looked up and he said, hey, I know it's not good news right now, but eventually this could be you. And he shows me a picture of a skinny blonde standing on the beach in an American flag bikini with an a matching American flag ostomy bag cover. And I just died laughing in between the sobs and the snot coming out of my nose. I was just like, oh my God, that's so funny. And I always remember that because he tried to relate to me and he tried to show me that it really wasn't as bad as I had worked it up to be in my mind and so now I can laugh about it, because now I'm in that place where I do see that it is such a great thing and it does help so many people. And so last year for the 4th of July I wore an American flag bikini with a bag cover and I took a picture of myself wearing the bag cover. So that was a huge milestone could get Tricare to pay for it.
Speaker 3:If I ever needed another surgery I would go see him because the guy is brilliant. He writes down his plans on napkins and then shows you like he did a hernia repair for me. That by far was the worst surgery I've ever had in my life. So if anybody ever needs a hernia repair around an ostomy, prepare yourself. It's brutal but you will survive.
Speaker 3:But I ended up having to have 60 sutures that were sewn into my abdominal wall and the sutures that they use feel like thorns. So he said it literally will feel like a thorn in your side for six months until they dissolve. And he drew up this plan of how he was going to do the surgery on a napkin and handed it to me and I'm like okay, and I trusted him because he had already saved me twice, you know. So I'm like great, I trust you. Surgery went great and most people who have had hernia repairs around their ostomy have a pretty high reoccurrence rate. I believe it's like a 30 or 40% reoccurrence rate within two years and I'm four years out so far. I should probably knock on some wood, but I'm four years out and I'm still doing great and have not needed another repair.
Speaker 1:I mean, does he know that notebooks exist? I mean, do we need to send him one, maybe like a picture of you in your bikini and also like a notebook to be like I know I know, I've always thought about that.
Speaker 1:I should just mail him his office a picture of me in my bikini and say, hey, you said one day this would be me. And look, it is, I'm here. I love that. I support this fully. I think you need to, because I bet he would be so stoked. And now I also wonder who this blonde woman was. Now I want to know who she was so that we can send her the picture. To be like you know what, I know you were an inspiration that moment.
Speaker 3:Yeah, I know, I don't even think I can find the photo now. It was just like one of those random Google images he pulled up on his phone in the moment, you know, and you had to have been there. I mean, it's like he's got a med student standing next to him who's like, oh my God, I don't know how to process this woman crying, you know. And then him, yeah, it just it really. It really changed the changed the day for me and made things like so much better.
Speaker 3:And I wasn't laughing about it then. Believe me, I was a little horrified then, but now I'm like okay, that was hilarious and that's. I wish I could tell everybody that, like, your definition of beautiful, like being beautiful, doesn't change just because you have a piece of your intestine hanging out now, or or you've lost a leg, or whatever. Beauty is in the eye of the beholder, but it's also in the eye of the way you see yourself in the mirror, and it's taken a lot of time for me to get there, but I feel like I can look in the mirror again and not be completely disgusted.
Speaker 1:Well, and there is something to be said about the beauty of having quality of life improved. Being able to live your life makes you feel more beautiful. It definitely does. If you're sick on the couch and you're not able to do anything, that's not helping.
Speaker 3:Yeah, yeah, I've been able to do so many more things that I was never able to do.
Speaker 3:I've been training for a half marathon and I got to hike. It was my goal to hike up Old Baldy at Garner State Park in Texas. I got to do that. I would have never been able to do that before because I always had to use the bathroom, so I used to have to just stick really close to bathrooms, and so now I've been able to do that and we're traveling a whole lot more. I successfully just took my first trip for a four-day trip with a carry-on, and so that is huge for the colostomy supplies, because I tend to panic when I travel and think, oh my gosh, I need like 12 changes of supplies for a two-day trip, and so I end up having to check a bag that is mostly ostomy supplies, but this time I did it with pre-cut wafers and everything just in one small little bag and a carry-on, and so it's things like that that you realize are like huge milestones for you too when you have one of these.
Speaker 1:Well done, that's impressive. Four days on a carry-on for me is difficult, so I, but I also travel with too many shoes, not as a difference. You are the first person we've talked to that has used, I think, hyperbaric treatment to deal with skin issues, so can you talk about what the heck that is and what might people expect if this is proposed to them?
Speaker 3:So they actually used the hyperbarics to try and treat the fistula in addition to the temporary ostomy, and the belief is that the hyperbarics increases the oxygen and increases cellular regeneration, and so their hope was that me being able to do the hyperbaric chamber would heal that fistula faster. Unfortunately, I was only able to do about three treatments, and the reason why is the pressure in there. If you have like issues with your sinuses or you can't ever really clear your nose or your ears, the pressure can be unbearable. And so I made it the first two times and it was pretty painful but I like I suffered through it. But then the third time it got so bad I felt like my skull was being crushed and it I mean you just the pressure is so much on those sinuses. It's almost like being on an airplane when your ears get really clogged and then the pressure starts building in them. So I had to tell them to stop. They had to stop the treatment and I had to get out and unfortunately I wasn't able to do all the sessions. They had ordered like six months of sessions for me and it was going to be hard because you would you have to do it like three or four times a week and it was like a commitment to be able to go and do this to get the healing. But I just I couldn't tolerate it. And Dr Chauveur was like you know, I'm not going to make you miserable trying to heal this. You know fistula. So and then at that time we had already decided that ostomy life was better for me and so I was going to be getting the permanent one anyway and ultimately the fistula did heal without the treatment.
Speaker 3:But hyperbarics are definitely a newer thing. At BAMC they have them for the? Um. Most of the people who use them are like burn patients. Um, it helps their their skin heal faster and it helps them grow new skin faster. So a lot of burn patients use it. But there's just so many things that they've been exploring using hyperbarics for, so I definitely think it's neat. I wish I could have done it because I probably would have been healed faster, but I'm thankful for the people who are able to do it because it is really beneficial.
Speaker 3:What's a chamber like? So it actually you feel like you're on an airplane. It feels like you're walking onto an airplane. It even has like the same, like leather type seats, and I believe there was six or seven seats in it and you get in and everybody sits in their seat and they lock the door and then you can see it's got dials that'll show you the pressure, the pressure that's changing and they put it to a certain negative pressure and then what they do is, while you're in the treatment, they just play a movie, or you can bring a book or an iPad or whatever and sit there and no, actually you can't bring a tablet. So I remember I had to bring books, actual physical books. But yeah, you feel like you're just on an airplane ride and the treatments are usually about an hour and a half long.
Speaker 3:So it was, it was perfect timing. You could I. Sometimes I slept, but the pressure was so bad that it was a hard. It was hard sleeping for me, so I would just try and sit there and read to take my mind off of it. But yeah, like I said, I only made it through three. It just it was too much.
Speaker 1:I didn't realize that you did this with, like other people. That is so wild. I guess I'm thinking of like I don't know, like float chambers or whatever. Where are they? Like thinking I didn't realize. Like legit seems like you would just boarded an airplane for an hour and a half yeah. That's weird yeah.
Speaker 3:They did have private ones for people who who needed it if they had like an infectious disease or or like severe burns. They did have like private chambers that you could do, but this one was just kind of like a group one. And yeah, it was. It was definitely neat. It's not something that you see all the time or hear about, so it was pretty cool.
Speaker 3:Bamc is the place to be when it hits the fan for you. And it's crazy because we came to San Antonio because my husband he's in the military and he was deployed, and our daughter had some health issues and I was up in living in Utah by myself with two toddlers in the winter while my husband was in Afghanistan and my husband returned home. On my 30th birthday on May 4th and May 10th, I had to have my first Valerie section because the stress of all of it, I just couldn't manage it. I've never been like one of those military wives who has, like you know, my kids, you my first Valerie section because the stress of all of it, just I just couldn't manage it. I'm I've never been like one of those military wives who has, like you know, my kids, you know walk in a straight line like little ducks in a row and I have it all together. No, I've never been that. I I'm like I need my husband here because all the bad stuff always happens to us when he's gone.
Speaker 3:So he decided to interview um and got a permanent job with the gunfighters. He's an F-16 pilot at Lackland. He was able to come and get a permanent job here. I got assigned to BAMC. We were told BAMC is where you go when it hits the fan. That's how I met Dr Patel. He's definitely who you want to go to if you have really, really bad Crohn's disease, because he knows the ins and outs of all of it.
Speaker 2:And he's always trying to learn new stuff. I mean he doesn't just rest on his laurels and say, like I know all this stuff, he's always trying to. If something new is coming up, he's one of the first ones to sign up to learn what's happening.
Speaker 3:Yeah, he actually just did a long course in like Crohn's specific nutrition and it's funny because they gave me a referral after my bowel obstruction. They gave me a referral to go see a nutritionist in the hospital and Dr Patel laughed. He's like, don't waste your time, they don't know anything about Crohn's disease, I'll help you. And so he's been helping me With this ostomy. Now that I've had the bowel obstruction, there's actually a lot of foods that I can't eat anymore and it's pretty similar to the foods that I really should have stayed away from just anyway having Crohn's disease. But a lot of people don't realize. Like I can't eat nuts anymore unless they're really really like finely ground up like fresh pineapples off the table, any like fresh vegetables. I have to have everything steamed or cooked or softened, because they explained to me that every bowel surgery that you have creates scar tissue in the bowels. Explained to me that every bowel surgery that you have creates scar tissue in the bowels. And so a person that has healthy bowels, their bowels feel real slick on the inside and you just you know everything just glides through them. Scar tissue makes you have like these like fibers kind of come out and makes the inside of your bowels rough and so anything that you swallow that can't be digested easily. What gets passed through that damaged bowel with the scar tissue can get caught on that tissue and so basically, I would have the perfect life if I would just drink liquid everything.
Speaker 3:And I felt great for the month I was on a liquid diet because I didn't have to really work at digesting. I lost so much weight and I felt great. But then I also like really missed food. But that's what that stricture is causing. I'm not able to eat like more solid meats, like steaks, or even like the steak fajita meats, and so anything that takes my body longer to digest and it's already hard to break it down. I'm supposed to completely stay away from that and I'm not supposed to have anything with fiber in it unless I'm drinking it. So I've been doing like green smoothies with like the green powder. Those have helped a lot and those they just go straight through me. They help, you know, keep me regular and I can eat like chicken and ground beef. Things like that are fine. But anything too solid and it's very painful to digest and I struggle with that.
Speaker 2:When I had the ostomy the second time, I was so looking forward to having an ostomy again because I hadn't been able to eat fruit for like 20 years and I went really hard and ate a lot of fruit and vegetables and I was it was like mulch coming out in the ostomy. I was texting Stacey Collins, friend of the show, stacey, because we actually had our J pouch surgeries at rally like around the same time and I was like I just I just went too hard.
Speaker 2:I ate fresh vegetables too close to the sun and now I just am producing mulch and she's like me too many, too many vegetables, but I was like I don't, I'm only going to have this ostomy for a little while and I don't know if I'm going to ever be able to eat it again, so I can't stop. I feel like in my situation with the J pouch like I have a J pouch now I am finding that I'm having to be very mindful when I'm eating. I'm pausing a lot, thinking about how to put that so I don't scarf food down. But because of some of the challenges that I've been having, like we've talked about, when we first got our J pouches, stacey was on the show and we talked a lot about gas and we were laughing about gas and texting each other about PSIs, like the force of the gas coming out of our bodies, kind of thing.
Speaker 2:But I'm several years in and I'm still experiencing a lot of gas and recently I had a small intestinal bacterial overgrowth. That was the first time for that and the amount of gas that was produced there. And she's like let's start with like, chew your food even more to help, like with that digestive process, to make it easier on your body. So I'm like every time I take a bite, I just sit here and chew until I'm like okay, this is pretty much like digested in my mouth. I don't know, I just chew so much to try to help with the gas to slow down the PSIs.
Speaker 3:So I did the same thing, like, especially popcorn is like the biggest, you know, like no-no.
Speaker 2:I don't care, I'm eating it, I know I did too, but I'm still eating it.
Speaker 3:I'm still eating it. Yes, I did too, up until so. I had my bowel obstruction in January. I'm telling you what I thought I was dying. That was the worst pain I've ever had in my life, and so now I'm like I'm a little traumatized by that. So now I'm like scared to eat this stuff because I really don't want to get another bowel obstruction.
Speaker 2:It was bad and I was that's true when the pain is bad. I, the couple of times that I probably had bowel obstructions, I, yeah, just laid in the bed, and my husband the last time he was like if this ever happens to you again, I'm taking you to the hospital, like I'm not going to sit here and let you talk me out of taking you to the hospital. I'm like I'm fine and look, everything worked out, it's fine.
Speaker 3:Yeah, I had a couple of them that weren't like a complete obstruction, they were just like they took some CT scans and they're like girl, you are loaded, you just need to like go. I had a couple of those and even after those I still ate the popcorn and did all the things. But this one we were all out at a military graduation down on the river walk in San Antonio and I literally thought I was like what is going on? This hurts, and I made it four hours with this pain and then I had to go home. I just I had to go home and I ended up getting sick when I got home. Well, that made it worse and I ended up collapsing and not able to move. It was awful and my husband had to call an ambulance and they got me into the hospital and then I laid there for a week with an NG tube down my nose and I'm like I was like God, I will never eat popcorn again if you just get this tube out of my nose.
Speaker 2:Yeah, I do understand that.
Speaker 3:Yeah, I still got some PTSD going on from that. But I did take my son to the movies a couple of weeks ago and I did have some popcorn and it was worth every bite. It was that good.
Speaker 1:It was so good, apparently, chew it really well. Yes, like Robin's tactic and just chew and chew and chew until it's basically popcorn butter, and then you're fine.
Speaker 3:Yes, and drink a ton of fluids with it too, and drink water and you flush all that out. It goes right down.
Speaker 1:We do not provide medical advice on this show. Everyone that's listening. We are not providing any sort of medical or nutritional advice. Please consult with your doctor.
Speaker 2:Don't, especially me. If you have listened to this show at all over the past four years, you know that I do what I want. I love it. So definitely don't take medical advice from me unless I'm saying get a second opinion, because I feel very strongly about that.
Speaker 3:Oh yeah, second opinions don't exist for us in the military. So that's why I am glad I have Dr Patel, because we don't get second opinions unless we want to pay a hefty fee.
Speaker 1:Yeah, and it is a shame that I know Dr Patel has talked about how, like he's kind of the only guy in the military, like he's like the one IBD specialist and it would be great if other people could get flown to see him. I'm curious about that, though. So like when you were in Utah and you were struggling with this, did you? You had to go to the military hospital system and you had to just see their general GI. How did that work?
Speaker 3:So we were at Hill Air Force Base in Utah and they did not have a military hospital close and so in that circumstance you're able to even if you have TRICARE Prime, you are able to still see what they consider like an off-base provider because you have to be, I believe it's like 50 miles away from the nearest military hospital. If you do not live within 50 miles of one, then they allow you or they give you a referral to see an off-base provider. So I just saw a general gastroenterologist at that time. My Crohn's was pretty well managed when I was living in Utah, especially when I was pregnant with my daughter and then nursing. Believe it or not, that was the only time since I'm 18 years old that I was in remission was when I was nursing my daughter.
Speaker 3:I think the human body is just crazy and can do amazing things and I nursed her for up until a year and had I had known the Crohn's would have come back like tenfold. I probably would have been that mom that like nursed until she was a toddler just to give myself some extra time, but because I felt great and then a month after I stopped nursing, I got a stricture and ended up having to have the first resection surgery in my my ileum, but yeah, so at that point I didn't really need like an expert, it was just like, yep, I got Crohn's. It's pretty well managed. It had been managed at that point with like Humira and Simsia and just the injections and it was always just a really small spot when they would find it, but when it spread everywhere, that's when I started seeing Dr Patel.
Speaker 3:So I have been blessed. I know not everybody has that and it is hard when you go see a regular gastroenterologist and you get a bill for $800 and they talk to you for five minutes. So I really am blessed. And my husband's about to retire and we're considering moving to the Houston area and one of the big reasons on our list of why we want to stay in San Antonio is Dr Patel, because he's kept me alive this long and I I keep saying like when I move I'm never going to have my gastroenterologist number again.
Speaker 3:You know what I mean. Like nobody gets that. So I just feel really blessed.
Speaker 2:You mentioned that you were well during breast feeding and this is I wanted to stop you and say any researcher who's listening hormones, women's hormones and IBD please study. It doesn't necessarily have to be focused on pregnancy or menopause. It should be hormones in the female body and IBD, because I can tell you before I was menopausal, hormones affected how my IBD was, even when it was controlled.
Speaker 3:Oh, absolutely, I 100% agree. I mean I ended up having to have an ablation because my periods would be so heavy that I would lose so much blood and then I was anemic. And so I was anemic until I had the ablation done and then I was able to stop getting iron infusions. At that point that was hormones. And then, I find it interesting, I have this stricture in my small bowel. Well, I had my first mammogram on Christmas morning.
Speaker 3:I woke up and found a suspicious lump on my breast and I went and saw my PCM who put in for me to get a sonogram done. And I went to BAMC to get the sonogram done. And BAMC automatically has a protocol that they won't just do a sonogram, they also do a mammogram. Even if your doctor doesn't order it, they still do the mammogram. And I'm so glad that they did because they found two suspicious lumps, one in each breast, and they turned out to be benign Thank you, God for that but one of them tripled in size. So I had to have a lumpectomy last month to get it cut out. And I've had so many other like hormone issues going on and I'm, I guess, flaring at this point because of the structure. So I definitely think hormones and Crohn's disease and IBD go hand in hand for sure.
Speaker 1:I mean I would be curious for the women who are on the show, like whether when you're tracking, like in your cycle, what happens, kind of when you're having these different hormone fluctuations, we're going to do our own research study on bowel moments.
Speaker 2:We're just going to have everybody track their period and let us know, are you going to be the primary investigator?
Speaker 1:I mean, listen, yes, you and I primary investigators, pis. You know what? No, we'll make Anish Patel that. We'll make him do it, and we'll get Venetia to help with this, and then you and I can be co-authors. How about that? Yes, that sounds great With you having a dad with IBD, with Crohn's, and you have Crohn's. Are you the most hypervigilant of your children's?
Speaker 3:poop ever. It's funny that you say that, because my daughter is actually having abdominal issues and both of my kids are on the pediatrician's watch list to start watching for IBD symptoms. My son is lactose intolerant. He's old enough now he knows if he eats lactose. The doctor told him she's like I know you love that ice cream, but you're probably going to blow the toilet out afterwards. So you decide you know, and so he still eats the ice cream. That's his deal.
Speaker 3:My daughter got diagnosed with something I don't know if y'all have ever heard of it. Most people who hear it are like whoa, I've never heard of that. My daughter, when she was seven, got diagnosed with abdominal migraines. Sadly, they have found that like 90% of the cause is constipation, and so my daughter only goes if she's not on Miralax every day. She only goes to the bathroom once a week and it's very painful for her to pass. And so the pediatrician said, because she's already having these issues, that it could later turn into IBD, which I'm praying so hard for her that it's not. I don't want her to have this. When she was seven she missed 26 days of first grade from vomiting, just constant. They typically call them abdominal migraines or cyclic vomiting syndrome, but we've been able to each year get it down less and less because we have a really good action plan with our doctor. Yeah, so I am like very hypervigilant because I do know that it runs in the family.
Speaker 2:Rachel, thank you so much for coming on the show and sharing so openly about your experience with your ostomies and having kids and our love, our mutual love of Dr Patel. But it is time for me to ask you the last question. So what is the one thing that you want the IBD community to know?
Speaker 3:I want the IBD community to know that, no matter what you're going through, there is always people out there that are also going through it and that are willing to help. If you are someone like me who needs an ostomy, do not think that it is the end of the world. Life can actually be great with them and my life is great with it and I can laugh and joke and I'm really living a great life. So I just am really thankful to you guys for having this group and this podcast to get this information out to the community about all things IBD. I love it.
Speaker 1:Oh, thank you for that. We appreciate it. We have so much fun getting to know all of our guests and we've had so much fun getting to know you as well. So big thanks to Dr Patel for sending you to us, because I think this has been such a fun conversation to have with you and I really really appreciate you sharing both the like, the part that started low and where you've been able to come, because I think sometimes you know, people put the brave face on and they're like everything's great I love my ostomy but they don't always acknowledge the difficulties they had in getting to the place they are now, and so I think you providing that light at the end of the tunnel for some folks is going to be super, super helpful, you know, because there's definitely some people that are maybe in that trough right now that are going God damn it.
Speaker 1:This isn't what I wanted, you know, and this was my, my worst case scenario, and now I'm I'm having to live my worst case scenario. So thank you for that. I really that's not easy, I know it's not easy, so I really appreciate you doing that. So thank you, rachel, for being on the show, thank you everybody else for listening and cheers guys.
Speaker 2:Cheers, everybody Cheers.
Speaker 3:Hi, this is Rachel. If you enjoyed this show, please rate, review, subscribe and share it with your friends.
