Inflammatory bowel disease (IBD) affects more than the digestive system. Crohn’s disease or ulcerative colitis can also affect the eyes, joints, and skin. Jordan Ditty was diagnosed with IBD as a child, though her diagnosis floated between Crohn’s and ulcerative colitis and she had j-pouch surgery due to a colonic perforation. Recently, she had her j-pouch removed and a permanent ileostomy placed. Surgery gave her with a better quality of life but also a new diagnosis of a skin condition related to IBD, called pyoderma gangrenosum. Learn how Jordan remains hopeful through her long journey with IBD and a host of complications.
Concepts discussed in this episode:
- The Differences Between an Ileostomy and a J-Pouch
- Fistula Types, Diagnosis, Treatment, and Prognosis
- How to Prepare Yourself for Ileostomy Surgery
- Mouth Ulcers (Aphthous Stomatitis)
- Overview of J-Pouch Surgery
- Pouchitis After IPAA (J-Pouch) Surgery
- Proctectomy Surgery for Inflammatory Bowel Disease (“Barbie” butt or “Ken” butt surgery)
- Pyoderma Gangrenosum as a Potential Complication of IBD
Find Jordan Ditty on Instagram.
[Music: IBD Dance Party]
Amber Tresca 0:05
I’m Amber Tresca. And this is About IBD. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease, and to bring awareness to the patient journey.
Welcome to Episode 79. My guest is Jordan Diddy, who was diagnosed with inflammatory bowel disease as a child. Her disease was really severe and aggressive, and she had complications right from the start. Today, she lives with an ileostomy by way of a j pouch. In the early days of her disease, her diagnosis was first Crohn’s disease, which was later changed to ulcerative colitis, and then back to Crohn’s disease.
Her last surgery to place a permanent ileostomy was only a few months ago, and she developed another complication that has impacted her significantly, Jordan found out that a skin problem near her stoma site was actually pyoderma gangrenosum. Skin disorders are a really common problem and could affect up to about 25% of people who have IBD.
However, pyoderma gangrenosum, or PG is rare. Matter of fact, it can go undiagnosed because some practitioners have never seen it before, or they don’t make the connection between PG and IBD. Jordan will explain her journey through this latest diagnosis, including what PG looks like, what it meant for her Crohn’s disease, and how she’s currently treating it. To make matters even more challenging, this is all occurring during the pandemic, which means that she’s navigating a lot of this without her support network by her side.
But here’s the thing: Jordan still remains hopeful for herself, and for the future of IBD.
Jordan, thank you so much for coming on about IBD and sharing your story with me.
Jordan Ditty 1:54
Of course, thank you so much for having me. I’m excited to share it today.
Amber Tresca 1:58
I wonder if you would start by telling me about your experience in being diagnosed with Crohn’s disease. And maybe what that first year after diagnosis was like for you because you were so young.
Jordan Ditty 2:09
Yeah, I was diagnosed at age 11. And I went in for a scope and was admitted for two weeks, and then got out for a week and was admitted for five months. So in that period, I almost lost like half my body weight.
You know, I was a sixth grader, very active little girl, and went to hardly being able to walk. And also during those five months, I had an emergency total colectomy and ended up with an ileostomy. So for me and my first year was very unique, especially as a child. At the time I lived in, we lived in Kansas City, born and raised there and went to Children’s Mercy and we had nurses on our floor that asked us what Crohn’s disease was because it wasn’t known throughout pediatrics very well at that point. And mine was so severe that it led me down a path of I had all three surgeries to reverse and do a j-pouch that same year. So it was hard.
I missed all the end of my sixth grade year. No one really knew I had Crohn’s disease, I was just kind of the girl that was missing. And I didn’t want it at that point. I didn’t want to tell people, I went into seventh grade with a fresh start.
Unfortunately, it didn’t last very long with my Crohn’s. As I flared very quickly again, after we reversed back to the j-pouch, just with pouchitis and things like that and fistulas I would say mine was very fast acting, like my Crohn’s kind of went out of control very fast. And for me it was lonely as a child, luckily, like my parents, I think ever left my bedside. And if they did leave for a night, my aunt was there to stay with me. I had soccer teams come and visit me every single week.
I was very lucky and very loved and very blessed throughout the entire first year of my diagnosis.
Amber Tresca 4:03
So you weren’t really telling anybody about your diagnosis, which I can also understand, by the way, I have a 10 year old and I have a 13 year old like, I just can’t even imagine being that age and trying to explain this to your friends.
What did people think was going on at the time? And have they talked to you about it later, maybe your friends about why they thought that you were gone for so long? And you know if they were very worried about you or they just didn’t even know what to think? What was the thought process of an 11 or 12 year old?
Jordan Ditty 4:34
Yeah. So throughout the entire sixth grade, I had letters galore that covered my walls saying Jordan feel better. Like we miss you and things like that, but no one really knew. I had soccer teams come and visit. They saw my ileostomy they saw my stoma and I think probably their parents told them after my parents told their parents kind of thing.
But I never discussed it really one on one except with one friend who I went to camp with. And that was only because we were there for an entire week. And I had my ileostomy and how to change my bag and wear one piece and I was a little girl who will have always worn two pieces. And my bag leaked one night and she helped me walk to the nurse and asked me questions.
I think it’s hard for any child, that one going through it, to discuss it and how to discuss it. Because I would say at the time, I didn’t really even fully understand my own disease. Like I knew I had Crohn’s I knew I had what didn’t have a large intestine. I knew all the things I had gone through. But I didn’t fully grasp that I had chronic illness that I had Crohn’s disease that, like I could say it, but I didn’t really know what was behind it.
And I think that took me until my teens to really, like I would say even late junior high, like ninth grade to really kind of grasp what my Crohn’s was, and how to live with it fully
[Music: About IBD Emotional Piano]
Amber Tresca 6:21
I want to talk about your j-pouch for a minute. Because they don’t usually do j-pouches for Crohn’s disease, although sometimes that happens. So could you tell me do you know, you know why the decision was made to have j-pouch surgery and I believe you said you went through the three step if you would take me through that.
Jordan Ditty 6:42
My colon perforated during a scope. And that was during my five months stay in the hospital. Right when I was diagnosed. At the time, I had only had inflammation in my colon. We hadn’t seen anything else like eye and mouth ulcers and things like that, but nothing else. So we kind of, they kind of, thought that it’s ulcerative colitis, from then until May I still had no inflammation anywhere else. It was just recovery that was hard after that surgery.
So in May, we went through the second step and created the ileostomy. And then July we connected it into a j-pouch, and reconnected everything. And like I said, unfortunately it didn’t last but their thought process was that I had ulcerative colitis at the time. It went from Crohn’s, ulcerative colitis in a snap after my colon perforated. But four months later, it switched back to Crohn’s.
Amber Tresca 7:41
Oh, wow, that’s so interesting, because I’ve known plenty of people who were first diagnosed with ulcerative colitis and then later it was revised to Crohn’s.
But not usually the other way.
Jordan Ditty 7:53
Yeah, I kind of went back and forth.
Amber Tresca 7:56
I don’t think I know the full story, though. I know you have an ileostomy. Now. But did you have ileostomy placed before or you had your j-pouch all these years until just recently?
Jordan Ditty 8:09
Yeah. So in 2019, April 2019. I went back to an ileostomy. I had my j-pouch 15 years, we all chose my team and I to go back to an ileostomy. And at the time the thought process was it was temporary. Because I had my rectovaginal fistula came back as well as it started stemming off. So I had five fistulas and then one connecting from my small bowel to my j-pouch. So we knew we needed to give everything a break and try to heal the fistulas.
But like I said at the beginning, I wanted nothing to do with my ileostomy asked me I was determined that I was going to go back to the j-pouch. But a month after surgery I looked at my husband was like, we’re not going back. And he completely agreed we had already such a better quality of life. I wasn’t stressing about a bathroom. Yeah, I’ve had problems with it. But we both knew it was going to be permanent after that.
Amber Tresca 9:14
Emotionally you thought that you were going to have longer, maybe with the j-pouch before you went to an ileostomy. How did you cope with that?
Jordan Ditty 9:24
I’m really lucky with my husband. I’ve known him since I was 16. And he was one of the first people I really told about my Crohn’s fully and honestly, and he was there for me every single step of the way and was really supportive.
You know, I went through those emotions of oh my goodness, I won’t be beautiful to you or I won’t be sexy and what will I wear and I won’t be able to work out anymore. And all those things are very hard for me to cope with. But for me, I deal with it by talking it all out and finding out every single detail I can. And so I met with the stoma nurse, I, I think I had more appointments with my surgeon than a normal. And luckily my surgeon was very open to explain every little thing. And then I also took to Instagram and social media.
And it’s such a beautiful thing today that, that that’s a resource that you can walk into, not walk into, but like just view people’s perspectives and things like that. I think the hardest one, though, for me was this recent surgery, having my bottom removed, there isn’t as much I feel like out there about that surgery and how people deal with it and their personal experiences because it is hard. And I think it was for me the ileostomy was almost easier.
But like I said, I’m a talker. So looking into every little thing and talking it through with someone, whether it was my husband or my doctor really helped a lot.
[Music: About IBD Transition]
Amber Tresca 11:12
So unfortunately, the thing that I saw on Instagram that really made me want to talk to you especially, was because you started developing a skin problem. You can correct me if I’m wrong, but I think after they placed the ileostomy. And skin problems are one of those things that it’s really common with IBD. But yours is pretty serious. And so I wonder if you would tell me a little bit about it and what it’s been like to get treatment for it.
Jordan Ditty 11:43
Yeah, of course. So we revised, we created the ileostomy and revised it because I had a lot of scar tissue around it. And about a week after I or two weeks after I had gone home, I noticed that I had like almost an ulcer around it and I knew it wasn’t right. But I had seen the walk nurse inpatient, just two days before and everything had looked good.
But I sent everyone a picture and I had pyoderma gangrenosum. And basically what how mine developed is it’s an ulcer, it’s a skin lesion. And usually they happen after a cut or trauma to the skin. For me, they say it’s due to also a Crohn’s flare due to the trauma from the surgery.
So my stoma went from looking like, beautiful rosebud to a rosebud with a giant, although it wasn’t always white, and pussy, it had almost like a purple tint along the edges and a little raised. So it made the it made it really painful and difficult to change my bag and to stick the bag. Luckily, I sent a picture right away to my walk nurse. And at that point it was it was growing by the day. So by the time I got into her, it was probably about a little smaller than my palm around my stoma. I got into her we started some medicine and she got me and an appointment right away with dermatology. And with them that was when they’re like they looked at it.
We talked to also GI everyone decided that I was in a Crohn’s flare, went on steroids, started two times a day bag changes with two different ointments. And it was interesting, it was very painful. I’m still working on healing it and this was three months ago. It’s a process and it’s something that will kind of always have to look out for with any surgery from now on. Just with how severe my Crohn’s is as well as with pyoderma.
With any cut with any scrape, it can flare up unfortunately, we also knew it was Crohn’s because it’s not my first skin problem I’ve had erythema nodosum, cystic acne, and all those other like I’ve had all of them galore. So with the PG dermatology actually looked back on every single stoma and picture and trouble that I’ve had with healing, and we’re like, oh, no, you’ve had this like multiple times. It was just never diagnosed and you were almost always put on some type of steroid to treat your flare which treated that but just took longer.
Amber Tresca 14:53
That must have been shocking to hear that.
Jordan Ditty 14:56
Yeah, it was. It was interesting. It was it was very difficult and at the time with COVID, and everything. I was in all these appointments by myself. So I think that took it one step further and made it even harder to process and deal with and like I would go into the car with my husband, Adam and I would just bawl and he’d be like, what, what they say. And it was hard [laughter]
Amber Tresca 15:21
…to repeat it. [laughter]
Jordan Ditty 15:24
It was hard to repeat it. And then like, also you’re so emotional in the appointment that it’s like, well, they said this, but actually wait. And he’s like, okay, so it was one of those things that like I’d end up like messaging them as well after, like, actually, I have all these other questions, because I am by yourself, but and like new diagnosis, and I remember looking it up on the way home and it’s like, one in 10,000 people get it. It’s like a rare, rare skin one. And it’s like, of course it is like…
Of course I would get that. Cool.
Amber Tresca 16:04
When everybody was looking at it when they referred you to dermatology did it take them a long time to figure out that that’s what it was. And had they seen it before?
Jordan Ditty 16:13
They had seen it before. Well, so I’ve actually prefaced that my walk nurse knew right away, like in the picture. She’s like, you need to get in tomorrow. You were coming up here to San Francisco, which we live two hours away. You are coming up here tomorrow. And she got me in got me the ointment and things like that. She’s like, I am 99% sure it’s pyoderma.
And then the next Tuesday, I went to dermatology and actually the only two in the room because it’s a teaching hospital, UCSF. So only my doctor and I think one or two residents had actually seen it pyoderma before. And then everyone else had never seen it.
A lot had never seen the stoma before. So it was interesting and that it was a large team in there. Like I think there were six or seven people in the small room. Because everyone wanted to see it…
Amber Tresca 17:11
…wanted to see it.
Jordan Ditty 17:13
Which I have all about being like a teaching, but at the same time at that point. I think I was like full tears like, you know?
Amber Tresca 17:23
And you were by yourself too. Yeah, it wasn’t like, okay, yeah,
Jordan Ditty 17:27
Yeah, I was by myself. And like, it was one of those things that it was, I don’t know, with Crohn’s. And people looking at my fistulas and things like that. Like I’ve had those for a while. But this was brand new. And they were people that are like, oh, wow, I’ve never seen that. I was like, You wait, you’ve never seen this. Like…
Amber Tresca 17:46
That’s not something you want to hear as a patient.
Jordan Ditty 17:50
So that was, it was kind of eye opening. And even in my checkups. Now I go every month to see dermatology. And every time I have like a new, like, first time resident, and they always come in and talk to you beforehand and make sure you have all your meds and everything like that.
And they’re like, Oh, can we see it? Like it’s under my bag. I need to take it off first. And he’s like, Oh, you mean you can’t see it underneath your bags? No, no. [laughter]
Amber Tresca 18:24
Jordan Ditty 18:26
No, you can like give me 10 minutes. Let me eat my marshmallows, and then you can come back.
Amber Tresca 18:32
Oh, my gosh, there’s so much involved there. So it’s completely under your flange.
Okay. And so all right. So you’re having to remove your appliance so that they can see it, obviously. Yeah, but you’re not at home. Yeah. And it’s an ileostomy which never stops working.
Jordan Ditty 18:55
Yeah, no. And dermatolgy is not like surgery. You know, they’re all really good. If they look at it. They’re really good about knowing you need to get that bag on pretty quick. Yeah, dermatology. This past time was the first that they came in within five minutes of leaving. And at that point, I wasn’t even ready for him because multiple times now they’ve left me for like 20 minutes with my bag off.
Amber Tresca 19:19
Jordan Ditty 19:21
And they come in every time and they laugh at me because I have my bag of marshmallows, which I’m very lucky with my ileostomy, marshmallows do stop my output most of the time. So they come in and laugh. They’re like you and your marshmallows. Well, you guys leave me waiting.
Amber Tresca 19:38
Well, do they not know I mean, is this another thing that you’re teaching them as to how people slow down their output?
Jordan Ditty 19:45
Yeah. None of them. I told them. They’re like, “Well, why the marshmallows?” It slows output. “Like, really? What?” Yeah. Yes.
Amber Tresca 19:59
Do you feel you also have to fast, not eat very much before you go to one of these appointments or maybe not even drink very much.
Jordan Ditty 20:07
Yeah, um, I will drink in the morning is tea and water before my appointments for me with my output, I can like if my bag leaks in the middle of the night, usually I’m okay because I have like, oddly enough enough in my stomach and the marshmallows hit quick enough that it does stop it.
But if it’s in the morning, I can’t eat because if I do then by noon, it’s like I won’t be able to stop it for a while. So yeah, I always end up fasting not eating it much and drinking much with in with the flare. It wasn’t the biggest deal. But I did notice this past week. I’m sitting there at one o’clock. I’m hungry. like can we get the show on the road?
Amber Tresca 20:57
Oh my gosh, that just, it just has so anxiety inducing. Yeah. Especially with your, you’re with a dermatologist. You’re not with a colorectal surgeon who, you know, I mean, they’ve seen everything.
Jordan Ditty 21:08
Amber Tresca 21:10
Yeah, I think you said that you’re changing your bag a couple times a day, is that still how you’re having to treat this?
Jordan Ditty 21:16
I’m now only changing it once a day. And I’m still doing that, to try to get it. We’re trying to treat it a little quicker. Mm hmm. Talking to the dermatologist and my walk nurse and surgeons and stuff like that a lot of people are kind of backing out of that. The dermatologists ask you to do that. But like the two bag changes a day for me, I could only handle for about a month, it was very taxing on my body, especially post surgery. It was exhausting.
I was spending almost three hours a day and it was painful. I had to lay down on the ground. And because I would become so lightheaded with the pain of it all. So now I’m doing it once a day. And luckily, it’s not as painful at all, actually not nearly as bad. Like it’s very sensitive when I’m cleaning it up. But other than that it doesn’t cause any more pain. So it makes it easier now to do it once a day.
And at this point, I just want off the steroids and off of all the other meds and even the ointments can do or the one ointment meant that I was on was doing some steroids. So it was like thinning my skin. Yeah. And now the one I’m on, it’s not harsh, it’s not harmful. It’s not hurting anything. But it does make it like my bag, the output seep through a little bit more. And I have a loose I’ve always had looser output. So I want to keep it as clean as possible. So I make I change it once a day.
Amber Tresca 22:49
Yeah, I mean, that’s it takes up so much of your time, so much of your day
[Music: About IBD Emotional Piano]
I can see even though you were diagnosed so young, and you’ve been through just too many complications, like nobody should have to go through all these things. But you’re still so very hopeful. How do you keep that hope going.
Jordan Ditty 23:21
So I always kind of remember something my dad told me. And you know, it’s one of those cliche sayings is you always want your cup half full.
And when I was first recently diagnosed, I was mad. I didn’t understand. I wanted nothing to do with the ileostomy. I wanted nothing to do with the life that I was having to go through. And my dad looked at me and he told me that. At the time, I didn’t register it. But it’s one of those things that kind of always comes back to me.
And for me when I’m happy and I’m positive and you know, I see the brighter side or I’m hopeful for what’s to come in the future. I’m healthier. Not only is my Crohn’s better, but like you’re able to, I’m able to breathe and for me, if I get to the negative side and start thinking that way. I get anxious and I get angry and that’s not who I am as a person. I don’t like to let myself get there.
Don’t get me wrong I do with the pyoderma I was in tears. Mad. But at the end of the day like it was healing and there is hope and there’s so many things just even since I was like diagnosed how far Crohn’s research and all sort of colitis research has come and family planning for women with IBD has come and and don’t get me wrong, like I’m worried for the future.
I think everyone has those thoughts like oh, when is my next flare going to be or am I going to be able to get pregnant, or am I going to be healthy enough to like care for the kids later down the road? But at the same time, like, How exciting is it that there is an opportunity out there that there’s that possibility we can, or there’s new meds coming out every single year.
And also the awareness around it, being able to speak out about it has really helped me stay more positive, because I can talk to people about it, which lets it off my chest. Being positive is kind of the only…it’s how I walk my daily life. So I want to take that into my Crohn’s and future surgeries and, and how I look at it that way.
Amber Tresca 25:46
Where can people follow you and learn more about your story?
Jordan Ditty 25:50
Sure. Instagram, I’m at jditty8. I love sharing my story on there. It’s not all bad. It’s, yeah, I have Crohn’s disease. I’ve been through a lot. I’ve had too many surgeries, but I’m not my Crohn’s.
I’m Jordan. And that’s who I am. I would never describe myself as someone who has Crohn’s disease. And I think that’s a big part of it. And I love being able to share that. So yeah, on Instagram. I’m jditty8.
Amber Tresca 26:22
Thank you so very much.
Jordan Ditty 26:24
Thank you so much for thinking of me and giving me this opportunity to share my story a little bit more.
Amber Tresca 26:37
I asked Jordan to come on my show because her story is so compelling. And she tells it well, but also because I want to make sure that people with IBD have information about related skin conditions.
We often talk about how IBD affects the whole person. I don’t think that’s communicated enough, though, especially to newly diagnosed patients. And the thing about skin conditions like pyoderma is that unfortunately, they can get serious pretty quickly.
Even though PG is rare, and so most of us won’t ever have to worry about it, we should still be aware, and we should have anything unusual with our skin looked at right away. PG is associated with IBD. But it can also occur with other conditions, including rheumatoid arthritis and hepatitis. And it might start at the site of a little injury like a scrape or a cut, or even at a surgical site and PG begins looking like a blister or a red bump or a pustule and it looks like it might heal up by itself but instead it becomes worse and forms an ulcer.
PG ulcers have a recognizable look because the edges are indistinct and purplish. There could be one ulcer or there could be a group of them. PG usually occurs on the legs, but they can also appear on the arms or as in Jordan’s case, on the abdomen or even other places.
As Jordan said, PG is painful. The ulcers are also slow to heal, and we don’t know what causes PG, but it might be immune mediated because it tends to occur with other similar disorders. In some cases, PG occurs when the IBD flares up, but not always. Which means that it can happen even when the IBD is doing well. There have even been cases where PG was the first sign of IBD.
Smaller ulcers might be treated topically, such as with steroid cream, or with wound care. But larger ones might need treatment with medications like oral steroids or immune suppressants.
IBD doesn’t only affect your guts, it can also affect your skin. And this is why it’s important to keep up with doctor’s appointments, including seeing a dermatologist. Anything that seems out of the ordinary with your skin needs to get checked out right away.
And now I’m going to give you a piece of advice. Don’t search for images of pyoderma gangrenosum. Because what you will find are extreme cases that will scare the heart out of you. Instead, I’m going to put some links in the show notes to more information about this skin disorder, including one that I’ve written.
And as a matter of fact, my article does contain a photo that’s quite graphic. However, the image is hidden until you decide to click on it. But don’t say I didn’t warn you.
[Music: IBD Dance Party]
Hey, super listener! Special thanks to Jordan Ditty for trusting me and for putting her story in my hands. You can find Jordan on Instagram as jditty8, that is j-d-i-t-t-y and the number 8. She shares more about her disease journey there as well as photos of her dog Ryker and her husband Adam. They’re super cute.
I will include a link in the show notes along with more information on the topics we discussed, such as j-pouch surgery, fistulas, pouchitis and proctectomy surgery, which a lot of patients refer to as Barbie butt or Ken butt surgery. You will also find this information on the episode 79 page on my site aboutibd.com and remember that you can also find me, Amber Tresca, on all social media as about IBD.
Thanks for listening, and remember, until next time, I want you to know more about IBD.