Todd:
Let’s talk about Crohn’s disease, a chronic, progressive, and debilitating inflammatory bowel disease that causes inflammation of the gastrointestinal–the GI tract--affecting more than 500,000 people in the United States. Hi, this is Todd Hartley.
Wendy:
And I am Wendy Hartley, and we’d like to introduce you to Abby Ryan.
Todd:
Yeah, Abby is a beauty pageant contestant and winner, and she has been battling the debilitating gastrointestinal condition since she was 14 months old.
Wendy:
Most recently Abby won a $10,000.00 scholarship for people with Crohn’s disease who are living beyond the boundaries of their disease, and she is using the money to go back to school to earn her Master’s to become a reading specialist. Abby, welcome to EmpowHER.
Abby Ryan:
Thank you for having me.
Todd:
Abby, we are really honored to have you, and you have just done such a wonderful job advocating for patients with Crohn’s disease. Now Wendy and I have a sister-in-law who has been battling with Crohn’s disease for, well, quite frankly, for far too long, and we have seen firsthand how it complicates her life. What’s it like growing up with Crohn’s?
Abby Ryan:
It’s very difficult growing up with Crohn’s disease. I think it’s difficult to be growing up with Crohn’s disease at any sort of age that you are diagnosed. It’s really an isolating disease that, whenever you walk into a certain area, you always have to know where the bathrooms are, and it is a bathroom disease that nobody wants to talk about. They’re not comfortable speaking about it, but it’s a fact of life that we need to live with.
People who are diagnosed with Crohn’s disease, they often feel as though they can’t talk about it, especially because society hasn’t gotten to the point where they want to be talking about symptoms such as diarrhea, cramping, bloody stools, and that’s really what I grew up with. I was constantly having to run to the bathroom, and students in elementary schools would see me as different because I would get those privileges; they saw it as privileges for me to run to the bathroom. Well, it was really a hardship. I had to go to the bathroom probably between 20 and 40 times a day. There was no stopping it, no controlling it. I was on medication constantly, and it’s just something that really can debilitate a life.
Todd:
Abby, when you are talking with a young person going through like, you know, middle school or high school that’s battling with Crohn’s disease like you had, tell me what kind of advice or guidance that you give them and how they deal with those kind of uncomfortable situations.
Abby Ryan:
Good question. I often look at that and look back on my life too. In middle school I wasn’t comfortable enough with my own body, my own disease, myself, enough to share those things with people, and if I would go back and do it all again, I would share those things. Number one, because then other people can realize exactly what you are going through, that it’s not something that you are making up or it’s all in your head; it is actually happening to you and you are suffering, and you could use some support from really great friends.
The second thing that I would tell the people suffering from Crohn’s disease is it’s so important to just know your body. Even at the age of 7 and 8 years old I knew what my body was telling me; I listened to my body. I made sure that whenever something was happening and I had a meeting with the doctors, I would make myself vocal enough to let them know because if I held it all inside there might have been something occurring that needed to be brought to the doctor’s attention, and if I don’t say anything and don’t express myself, then the doctor is not going to be able to help me the way that they should, too.
Wendy:
Abby, you are so brave to be speaking about your Crohn’s condition. Would you please share with us what your symptoms are like?
Abby Ryan:
So my symptoms might be a little different than the traditional Crohn’s patient, but I still recognize them as the cramping in the stomach area and the abdomen, and I have cramping in the rectal area and diarrhea and fatigue, so I always have to make sure that I am on top of those things. I always think that if I am having a flare-up, I immediately call my doctor and we discuss and confer about different things that I could be doing in order to potentially ward off anything more severe such as an increased dose of medicine or different medications. Perhaps I am eating some wrong things that we discuss about, and maybe even changing my exercise schedule.
So all those things really come together and hopefully I can ward off. I have been very good with warding off Crohn’s symptoms for the last two years. So I find that to be a good accomplishment.
Wendy:
That’s excellent.
Todd:
Yeah, that’s pretty impressive. So let’s first talk about this, the flare-ups, and what type of dialogue you are having with your physician.
Abby Ryan:
I have a great relationship with my physician. I have had him since I was a teenager, which is great to have that stability there. Before that, I had a nice pediatrician, but then I kind of bounced between a couple of GI doctors before I settled with the one that I have. It’s great that he and I can talk whenever I call him. He knows it is important to get back to me right away.
I typically like to stay on top of things so that it doesn’t get so severe that I can’t handle a flare-up, and it hasn’t got to that severe point in the last, like I said, two years, but I do remember the flare-ups when I was young, when they were so unbearable. It’s almost as if you are having somebody put a knife in your stomach and twist it. It’s almost like they are just twisting it back and forth and back and forth, and you can’t get any relief from the pain.
On top of the pain that’s going on in your abdomen and the cramping and the pressure, you are having these sensations in your rectum, and you don’t know if those are just sensations or if you have to go to the bathroom or if you need to make sure that you are eating appropriately. The flare-ups are, they vary in severity – mild ones, medium ones, severe ones.
I had several flare-ups that landed me in the hospital because, at the time, you don’t want to eat anything. You are having such cramping in your stomach that you feel as though if you ingest anything, you are going to get more sick, and oftentimes you do. And then also you are just in such pain, you don’t focus on the electrolytes and the fluids you need to be getting. So therefore your body starts to deplete and really goes downhill.
And if anybody asked me, ”Well, the flare-up, that doesn’t sound so bad,” oh, if you have a family member or a friend who is going through a flare-up you can just see it. It’s something that I became aware of, and thank goodness, I haven’t had that in such a while, but it really can just harm daily life.
Todd:
Let’s talk about foods. It sounds like you gave us a really good overview on the symptoms, but what about the foods? Some of us only look at Crohn’s disease from afar; we might consider that there’s certain foods that cause problems. Do you find that in your GI tract?
Abby Ryan:
I do. I think there are certain foods that people need to stay away from, especially when you have Crohn’s disease. People often talk about things like corn on the cob that you need to stay away from, nuts that you need to stay away from, spicy food. Those are kind of the general things.
I look at Crohn’s patients and I notice though that everybody is just a little bit different, and everybody has just a little difference in tolerance. I know from myself personally, I have a very difficult time with fruits and vegetables. It might be because I don’t have a large intestine, and due to the fact that I don’t have a large intestine, I don’t have the ability to squeeze out the water of the fruits and vegetables, and so therefore I have a difficult time digesting them. So I oftentimes stay away from things like that.
Corn on the cob really does a number on me as well, especially because in our society, it seems as though we don’t take enough time to chew the food that’s put in front of us, and so if you are not chewing the food that’s put in front of you, that can also do a number on your intestines as well, and so we take those two things into consideration. You are eating the fruits and vegetables; you might not be chewing them as appropriately as you should, and therefore it wreaks havoc on your system.
I have an extremely difficult time with mushrooms, and I often find that the morning after I am once again, keeled over because I am having problems, but it is a guilty pleasure at the same time, and sometimes I do have to just eat the mushrooms and then remember why exactly I don’t eat them anymore.
Todd:
Wait a second, I got to ask this. I mean, I hear people, you know, loving chocolate or nuts or red wine, but I don’t hear a lot of people that have cravings for mushrooms. How do you prepare them? Is it just raw, or do you cook it some special way? Maybe I am missing out on something.
Abby Ryan:
As far as them giving me problems do you mean, or as far as my cravings?
Todd:
Yeah, your cravings, what are you craving?
Abby Ryan:
Oh, well, there is a restaurant in town that makes this delicious mushroom pappardelle, and I think they steam the mushrooms and they put it in a sherry wine sauce, and they include it with pasta. And number one, it’s very rich, and number two, it just has these huge mushrooms, and it’s just such a guilty pleasure, and then I go home and I think, “Why did I do that to myself? Now I am going to be suffering.”
Todd:
I swear, Wendy and I have, as you were explaining it, I thought of a restaurant where we always get the mushroom dish, so now I know exactly what you are talking about.
Abby Ryan:
There are just some places that make those dishes irresistible; you just can’t say no.
Wendy:
I got to stay outside the door and turn your back to it and find a new place.
Abby Ryan:
Absolutely, or leave your cash and checks at home so you can’t go out to the restaurants.
Wendy:
Abby, you had mentioned that your large intestine – you have a smaller large intestine?
Abby Ryan:
I actually do not have a large intestine.
Wendy:
You do not have a large intestine. So tell us about why you do not have a large intestine.
Abby Ryan:
When I was diagnosed with Crohn’s disease at 14 months, it was already severe and the doctors were talking back and forth on what to do, and at the age of three and a half, I had a total colectomy where they took out the entire large intestine, and when they did that, the doctors told my parents that my intestine looked like that of a diseased 50-year-old who had been suffering from Crohn’s for years.
Wendy:
Oh my goodness!
Abby Ryan:
And, to imagine that in the body of a three and a half year old is very sad, very sad to think about that, and so they removed that because it was so diseased that it could not stay in my body. And they decided to do a J-pouch reconstruction, which is where you take a part of the small intestine, and just as it sounds, you make a “J” and that serves as a reservoir for the large intestine.
And that did not work, unfortunately.
In a lot of patients J-pouches do work, but I immediately had chronic pouchitis, and so, you go from the inflammation of Crohn’s to the inflammation of this J-pouch. And so I was constantly having the same symptoms of Crohn’s over and over and over again with no relief, and medications weren’t helping.
And so, eventually down the road I had two paths to take: One path was I was doctoring in Madison, Wisconsin with a doctor, and he had mentioned that he would really like if I would go into a study for Crohn’s patients, pediatric Crohn’s patients, and although I am a proponent of it, it would mean that he would want me to be on daily growth hormone injections because I wasn’t growing and going through puberty properly.
And the other option was ostomy surgery and so, my parents had to make that grueling decision, and they decided to go with ileostomy surgery, and so when I was 11 years old I had ileostomy surgery, and ever since then, there have just been little bumps in the road here and there that you have to overcome and you really take those little bumps and it really defines your life.
Todd:
A few moments ago you had mentioned as foods that create problems inside of your GI tract. What calms that or what makes you, what foods help you and allow you to live life normally like so many of us do?
Abby Ryan:
I like to make sure that I am eating foods that are not super high in fat because I find that those give me problems, but I do enjoy pasta and pasta seems to settle well, especially with, I guess spaghetti sauce, a mild spaghetti sauce with not too many herbs and spices. I like a lot of different deli meats and sandwiches; small salads are good for me as well, and those really sustain me throughout.
Wendy:
You are 26-years-old. We have seen photos of you. You are beautiful.
Todd:
Yeah, just beautiful.
Abby Ryan:
Oh, thank you.
Wendy:
Absolutely beautiful and obviously a fearless girl just by hearing the spice in your own voice.
Abby Ryan:
Oh, thank you very much.
Wendy:
But, with all that said, how do you tell people that you are dating about your condition?
Todd:
Yeah, how do you bring that up?
Abby Ryan:
It is a process, I must say. I am not a person with Crohn’s disease that has a first date and during dinner I say, “Well, by the way, I have Crohn’s disease.” It’s not a topic of conversation that I pull out on the first date.
I typically wait until I know that I might date somebody on a more frequent basis, and usually at that point, lucky for me, many people like to Google each other, and so when they Google my name, it’s always associated with Crohn’s disease, but before I really got so much into motivational speaking and working with other companies, I did have a difficult time.
The first time I do recall when I was dating a certain somebody and I needed to tell him that I had Crohn’s disease and that I had had some surgeries, and we were just talking about it, and I became very emotional, and he said, “You don’t need to cry. I had an inkling something was going on,” and I said, “Really? How did you know?” And he said, “Well, I noticed that you go to the bathroom quite a bit, and I noticed there are certain times when you are holding on to your stomach,” and he said, “I thought about things like that and I thought there might be something going on.”
And so we had a nice conversation about it, and he had said that if I was uncomfortable with it, then he might have felt uncomfortable, but as the conversation started flowing I realized that I need to be a mirror because whatever I am projecting, whatever people are seeing from me, it’s bouncing back on them. If I am coming into a relationship and I seem awkward and embarrassed by my Crohn’s disease, then my other partner might feel as though he needs to feel that way as well.
But if I come into it saying, “This is what I have dealt with. I am a survivor. I am strong and I want you to be strong with me, and I want to make you aware of what I deal with on a daily basis,” those people really respond. They might not be able to empathize with you, but they see that you are a survivor, and you are so strong to be going through something like this in your life, and it just makes you that much more attractive.
Todd:
Abby, tell us about your family and how your family helps you deal with Crohn’s disease.
Abby Ryan:
Oh, my family is awesome. I always get emotional talking about my family because without them I would not be who I am today; I would not be here. I think without them, my life would be completely different. My mother and father are just so inspiring to me; they both have the most amazing positive attitudes, and whenever I was in the hospital when I was little and with NG tubes in my nose and IVs in my hands, my dad is strong on visualization and he’d say, “You need to pretend that there’s a battle going on inside your body and the army is going toward that inflammation, and they need to take it out, and just pretend that that it’s not IV fluid that’s going up; pretend it’s spaghetti and meat balls; it’s your favorite meal, and it’s filling your tummy and you feel so good.”
And my mom would always stand by my bed, and she would grasp my hand whenever they were putting in the needles in my hands or doing all the different sigmoidoscopies or colonoscopies, or if I had to drink stuff for CT scan, she was always right there and saying soothing words. Without them, I would not be who I am.
I also have two extremely supportive brothers. I have an older brother whose name is Luke, and he is 28, and he suffers from Crohn’s disease. So he is going through all of the things right now that I went through a few years ago, and it’s good to have a sister that he can empathize with, but also it tares me up inside seeing him go through what I went through.
And I also have a younger brother Brodie who is 22 years old, and he really is, he is always there for me. Whenever I end up in the hospital or I am having a bad day, he is calling me, asking if he can do anything, bring over soup. They are just so supportive and without them I think I would crumble.
Todd:
Sounds like you have a beautiful family, and as you are saying that, Wendy and I were looking at each other, and I think we are both saying it sounds a lot like our family, and we are lucky that you have that same type of love around you.
For those who don’t know, this year marks the fourth year that UCB has awarded scholarships to outstanding individuals seeking higher education while living beyond the boundaries of Crohn’s disease. The 2010 scholarship program will be available October 26, 2009, and of course, can be accessed on the website crohnsandme.com – an interactive website designed to empower people living with Crohn’s disease. People just like Abby Ryan who we are talking with right now. Abby, thank you so much for helping us empower women.
Abby Ryan:
Thank you.