My Ostomy Journey | IBD Awareness Town Hall 2019 – Part One of Four



all right hi everyone and welcome to the IBD Awareness townhall world IBD day takes place on May 19th every year to unite people worldwide in the fight against Crohn's and Colitis also known as inflammatory bowel diseases or IBD this year Hollister incorporated joins forces with organizations from over 50 countries on five continents to engage in education and awareness about these digestive diseases I will now hand it over to our moderator Karen Spencer to begin today's discussion did you know that there's 10 million people around the world who have been diagnosed and are living every day with inflammatory bowel disease here alone in the United States 1.6 million people are living with inflammatory bowel disease and that's about 780,000 people with Crohn's disease and 970 thousand people with ulcerative colitis and those statistics are just as staggering in Canada in Canada there's a hundred and twenty-nine thousand people living with Crohn's disease and a hundred and four thousand people living with ulcerative colitis and when we talk about ulcerative colitis and Crohn's disease we're talking about inflammatory bowel diseases and each of you have all received a card that actually talks about IBD day and slightly compares the differences between all sort of colitis and Crohn's disease so just quickly the differences our Crohn's disease is a disease that actually impacts the entire digestive system right from our mouth to our anus and it attacks the entire bowel wall we're all sort of colitis affects only the large bowel and it impacts only the inner lining of the digestive wall both diseases are inflammatory bowel diseases and both impact patience in different ways but impact them every day and we're gonna hear about that with our panelists today I have a couple of facts though as we look forward with people living with inflammatory bowel disease here in the United States Crohn's disease is on the rise in Canada Canada has the highest prevalence of Crohn's disease all over the world amazing statistics but with statistics like these and people who are affected by IBD day or IBD I thoroughly welcome you to inflammatory bowel disease day and thank you for joining us to bring awareness and to unite people to understand living with a living with a digestive disease and how we can move forward to make sure that we potentially find a cure for that disease but more importantly to allow people have a better quality of life having had or living with inflammatory bowel disease so today I'm Karen Spencer I'm the director of global clinical education here at Hollister and it is an honor to be on the stage today with our four guests and to be able to talk about inflammatory bowel disease and bring some awareness to others about it as well each of our panelists have had a journey of living with inflammatory bowel disease and they are all here today to share with us their story and their journey but more importantly about bringing awareness to that global community so I would like to introduce our panel today we have Robin brown Robin is bet from Belfair Washington and she is the reigning mrs. Mason County Washington and we have Danielle golden and Joe teeters from Columbus Ohio now this is it this is a dynamic duo and they have a social media website called double-bag in it and you're gonna hear all about that and finally we have Krista du veau Krista is from Calgary Alberta Canada she's a kindergarten teacher and she brings a truly a fresh perspective and a positive attitude with her social media site called my gut instinct so we'd like to welcome and although most people who live with inflammatory bowel disease don't have surgery as a matter of fact the statistics are about 67 percent of the people with Crohn's disease will have surgery and only about 27 percent with all sort of colitis will have surgery some people will have surgery and end up with an ostomy our panelists today have had surgery and they have had ostomy as part of their plan and their management of their inflammatory bowel diseases because living with inflammatory bowel disease is truly a burden it is a burden on quality of life it's a burden on being able to go back to work it's a burden on having a relationship medical costs and as well travel but our panel here is to here today to tell us their stories so we're gonna start with just getting to know each of our panel members so I'm gonna start with you ruff and if that's okay if you could just give me a summary of your journey with inflammatory bowel disease and what brings you here today yep odd so my journey started when I was fairly young I always had tummy troubles or a stress tummy as my grandma would call it you know and I dealt with that for a lot of my youth and then when I was 21 I ended up getting septic Salmonella and had a bowel resection and at that time they said oh you know you have this Salmonella going on but did you also know that you you actually have a disease and I said oh well I knew I knew I was different and so we started trying to treat my condition and managing my symptoms I had multiple surgeries after that over the course of 10 years and then unfortunately I was involved in an accident where I was crushed between our off-road truck and the back wall of our garage and when that happened obviously that had a tremendous impact on my gut health and really just complicated things further so last year in February is when I got my ostomy and that's where I'm at now so one year and doing better than ever wonderful thank you so much for being with us today one of the hashtags for inflammatory bowel disease is hash tag making them invisible visible and I find this very interesting and as I've gotten to know our panel members a little bit Danielle you were misdiagnosed to us for many many years so can you share your story about the misdiagnosis and how you've come along to living with an ostomy and managing your IBD absolutely so I started getting sick in high school which is a really really fun time to start getting ill and so around the hoenn I was 17 I started having all kinds of issues somehow it got ignored I went to college came back home and I was diagnosed with a gluten intolerance which you know back in 1994-95 we didn't have all of the big grocery chains that had all of the specialty foods so I spent a lot of money eating a lot of things that I couldn't and shouldn't have and it took until 1999 I was properly diagnosed with ulcerative colitis through a colonoscopy and it was kind of a great day exciting I had the real answer of what I had wrong and knowing that going forward I could manage it through treatments and medications so I lived with ulcerative colitis it was very very severe my I don't know how I got through my wedding day don't know how I got through college I had to drop out of classes because there wasn't a bathroom on the floor that I needed this is a very interesting life so finally I would another fun fact I actually installed a toilet in my car that's how sick I was coz I was going to the bathroom 20 to 25 times a day so I went to a car dealership and they're like do you want a sunroof I'm like no I wanted to take out a car seat to put a toilet in and I made little curtains and that's how I lived my life because I couldn't drive around so my daughter was born into thinking that everybody had a potty in their car which was you know she thought that was pretty cool but was very confused when she went into other people's cars right so in 2007 I decided to have my ostomy surgery after every medication that I went through every treatment wasn't working and I was very very ill so it was a very easy decision to make and the greatest decision I've made well thank you for sharing your story and as you can hear just listening to the story of actually putting a toilet into your car the disease impacts your everyday lives and how you cope with it so thank you for sharing those yeah and as we talked about it you know a lot of people do have surgery and do have ostomy surgery with inflammatory bowel disease but for a very long time they're managed with medications usually high doses of steroids Remicade so Joe if you don't mind sharing your story of how you were managed with medications for a long time and how you finally made that decision to have ostomy surgery to manage your IBD sure absolutely I was I was diagnosed with Crohn's disease at the age of 19 I went for a little bit of time with not getting properly diagnosed I went took about a year before they figured it out and at that time in 1993 the biologics hadn't hit the market yet so the main course of action was to go on high-dose steroids sulfa drugs and and other drugs those of course worked not the inflammation but they really didn't protect the intestines from damage so I had my first intestinal resection in 1995 felt great came back felt normal felt healthy again had solid poop again that was a great thing but the disease was still prevalent still very active came back full force in 1998 Remicade hit the market it was the first biologic hit the market I started on that and it worked very well for me but again it's it didn't cure me it didn't put me into remission so I had to have another resection in 2004 again felt great for a while went back on different changed my medical regimen a little bit but by 2012 the disease was still ravaging my intestines and I really had really bad rectal disease at that point the rest of my intestines was pretty okay but I had really bad rectal disease and after having Crohn's for so long and the disease was so bad I was at very high risk of colorectal cancer so that coupled with the effects it was having on my body i with the consultation of my surgeon and my GI I made the decision to have my ostomy surgery thank you for sharing your story and one of the things that I really take home and is listening to you is when you are diagnosed with your with you with inflammatory bowel disease it is a long journey it for Crohn's disease it's a forever journey and then it's just interesting to hear everything that you've gone through with all the medications just to try and find the quality of life that you deserve so thank you for sharing that with us most people are diagnosed with inflammatory bowel disease in their late adolescence early adulthood unfortunately we're seeing that being that age coming down and we're seeing people being diagnosed at much younger ages Krista was diagnosed at nine years old so Krista would you share your story being diagnosed at such a young age and then your long journey to where you've come to today of course I was diagnosed with Crohn's disease at the age of nine my mom my mother you know was concerned you know I was eight years old I would going to school and when I come home from school all I wanted to do was nap and not go play with my friends and you know that was kind of a red flag you know so she said you know something's wrong I'm gonna we went to the doctor we went for a blood work they told me I simply just had low iron and sent me home with iron pills and then we went to a specialist and they diagnosed me almost right away with Crohn's disease and instead of going on prednisone right away because I was very underweight very malnourished they I decided to have a feeding tube that they inserted I might know is all the way to my stomach and I was fed that way for four years so I I was in grade five I think so great five six seven but when I went to junior high my mom would take the tube out in the morning so I would go to school with my friends and them not know because you know what junior high they're they're not so nice and then my mom would put the tube back in at night for my feeds but I was really lucky my friends and the community I'm from a small community and they you know came together and they supported me all my friends they brought their dolls to school and they put yarn like a nifer tube you know just to kind of normalize it and I eventually the biologic biologics came out and I was also on Remicade when it was a study that worked really well for me and then it just stopped working and in high school I had my first bowel resection after that I tried different meds but nothing really worked you know tried prednisone all the biologics I exceeded those and had my second bowel resection when I finished my university degree and then two years ago I well no sorry a year ago in April I decided to get my ostomy surgery because I couldn't focus on my career I couldn't go to work I was getting married and I was just really worried I suffered a lot with incontinence so the last thing I wanted was to have my nice wedding dress and have an accident so I I pushed for the ostomy surgery and I haven't looked back since I think Cristo story probably pulled on all our heartstrings because can you only imagine being 9 10 years old in junior high and having a feeding tube and having bowel issues and just trying to fit in and I think all our panelists here have had their journey it's all a little bit different but if all of their lives have been impacted by living with inflammatory bowel disease so again we are very honored to have you all here today to share your stories bring that global awareness to to everyone who is watching as well you

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