Kaella shares her experience with Crohn’s disease below and details the solace she found in volunteering with organizations related to her condition and the impact the positive attitude of children struggling with their own health conditions had on her life.
The wonderful organizations Kaella mentions below include:
- Crohn’s and Colitis Foundation of Canada
- Crohn’s and Colitis Foundation of America
- The Painted Turtle
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I lost my Nana to a disease I’d never heard of when I was 15. Before she got sick she was always healthy and extremely active. She was a young grandma who taught me how to play badminton and took me on a shopping date every professional development day.
My Nana and Gaga lived with us growing up. She was my best friend and I lost her on August 10, 1999, the day before her birthday. She died from complications from ulcerative Colitis.
Fast forward five years.
I was starting my career in broadcast journalism. I had recently been hired as a news reporter and anchor for a radio station in a small town. I was anxious to be over twenty hours away from my family and friends, but excited to begin my dream job.
The pain started almost immediately. At first, I thought it was just stress. I had a hard time getting out of bed in the morning. I had stabbing pains in my stomach and couldn’t keep any food in me. I had to be near a bathroom at all times.
It wasn’t until I saw blood in the toilet that I decided to see a doctor. Six months later, after multiple surgeries and several “wrong”diagnoses I found out I had Crohn’s disease. Crohn’s is another form of Ulcerative Colitis, otherwise known as Inflammatory Bowel Disease.
The same disease that took my Nana from me.
IBD affects any portion of the digestive tract, from your mouth to your anus. It can cause severe abdominal pain, bloody diarrhea, loss of appetite and bowel rupturing. It also affects the way your body absorbs nutrients.
The disease caused me to lose 50 pounds in three weeks. People were asking me if I had an eating disorder. They didn’t understand why I was always in the bathroom. I was on dozens of medications and dealing with the fact I would have this disease for the rest of my life.
Worst of all, there is no cause and no cure.
I did what I think most 20 year olds would do; I took a few months to feel sorry for myself. During that time, doctors found a fistula connecting my small bowel and bladder. I was rushed in for emergency surgery and had four feet of small bowel and half my bladder removed. I spent 40 days in hospital and weeks recovering at home.
It was during this time at home I decided I was done feeling down and ready to do whatever I could to make a difference in the lives of those affected by Inflammatory Bowel Disease.
I contacted my local chapter for the Crohn’s and Colitis Foundation of Canada and, because of my media connections, they elected me to be their media spokesperson at my first meeting.
I spent two years speaking to other reporters about the disease and organizing and promoting local events to raise awareness and funds to find a cure.
I attended a national meeting in my second year with the foundation and found out they were planning to develop a youth group. I immediately submitted my name and was elected Chair. I spent the next two years creating a group called “The Gutsy Generation.” The group helps those age 15-25 who are living with or affected by IBD.
Most cases of Crohn’s or Ulcerative Colitis are diagnosed in that age group. It’s a time in your life when you are going through so much; your first day of high school, choosing a college, starting college or beginning your first career. I wanted to help connect this age group, who, if they were anything like I was when I was diagnosed, were likely feeling alone.
It was during my time on the youth group (formally called the “Youth Advisory Council” or YAC) that I decided to do something.
I wanted to spend more time with young people who were living with IBD. I did a little research and found The Painted Turtle. The camp, located in California, was started by Paul Newman and offers children whose medical conditions wouldn’t otherwise allow them to attend camp the chance to be a “normal” kid for a week. There are camp locations across the United States.
I had the opportunity to volunteer as a camp counselor and spend a week with children age six to 16, who were living with IBD. We went zip-lining, fishing,swimming, sung around a nightly bonfire and took part in a very fun and extremely messy obstacle course. I loved every second of my week with them.
In the past, I’ve learned that this disease can hold you back if you let it, but all of the kids had such positive attitudes. They didn’t let IBD run their lives. Despite all the volunteering I had already done, I walked away from this experience a new person.
After I “graduated” from the Gutsy Generation I became chapter president and most recently began serving a three year term on the Board of Directors. I fly to Toronto four times a year to talk about the future of the organization and how close we are to finding a cure.
If you’re affected by IBD, or just want to volunteer for a great organization, I highly recommend either the Crohn’s and Colitis Foundation of Canada or the Crohn’s and Colitis Foundation of America.
Whether you have one day a year, or a few hours a month to commit, you can make a difference.
The Crohn’s and Colitis Foundation of Canada and the Crohn’s and Colitis Foundation of America offer so many fun and educational, events and are always looking for help. There is an annual bbq, walks, runs, seminars and more!
Eight years after first being diagnosed with Crohn’s disease I can say, without a doubt, that volunteering has changed my life.
I love it and continue to do it for myself, those I have met along the way, but most of all, for my Nana, who I miss every day.
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Additional reader volunteer stories:
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I think Crohn’s is definitely an under-publicized disease, most people don’t even know what it is! Great job to Kaella for not only pushing through her disease but working to spread the word!
Thank you so much Kaella for sharing. I’m reading this before work and I actually starting crying. It’s so amazing what you were able to do for these young people struggling with Crohn’s disease. I applaud you!
What an inspiring post! Kaella seems to have such a wonderful spirit and to be so strong! Crohn’s is definitely a disease that gets little exposure. My cousin lives with the disease and always spoke that the pain has to be similar to childbirth pain for a woman-in other words, he says it is agonzing. But it isn’t going away.
Volunteering is so amazing. To see what little it takes to make others so happy is just awesome!
Happy Mother’s Day to everyone!
I have Crohn’s Disease as well, and I am running the Virginia Wine Country Half-Marathon on June 2. My mom and I created a donation page, and I have an event on Facebook. I was diagnosed a month to the day after 9/11 (and in my eighth grade year, no less), and I can say without a doubt that is a disease that makes or breaks you–you either rise up to the challenge or succumb to it. I have chosen the former, sometimes to my own detriment. I can, say, however, that I take better care of myself than probably anyone I know, and at some point, I hope for that to pay off. One of the biggest reasons that I am participating in the half marathon (other than loving to run) is to raise money for a cure so that I might be able to a) have children of my own (with my current meds I won’t be able to) and b) if, willing, I have my own children, to be active in their lives and not dependent on medication. I have never been in remission, and there is no cure, but we are making great strides, and I hope to make many more of my own and for Crohn’s research!
Thanks to Kaella and Julie for posting this!
Susie
Here is the website
http://www.active.com/donate/virginia12georgia/VA12CRanney
and CCFA for more info!
ccfa.org
I’d love to speak to Kaella. Could she email me if possible? (Julie..you can give her my email address?). Thanks.
Hi Tara,
You can email me at kaellacarr@hotmail.com
Thanks!
Thank you for posting this! My husband was diagnosed with ulcerative colitis when he was 15 and got the disease due to use of the acne medicine accutane (which is now a known side effect of the medication). It is scary living your high school/college/young adult life without knowing when you’ll have a flare up. Though he’s never gone into remission in almost 10 years of having the disease, he is thankfully on a great medication now that is helping with his symptoms. Hopefully we can find a cure for this disease soon!
My husband’s best friend died from complications of Chron’s Disease. Thank you for bringing attention to this, what a wonderful story of hope and using a “bad” thing for good. Thank you!
<wow, this was truly touching!
I wasn’t aware that Crohn’s Disease could get that serious! My fiance’s brother is in the process of being tested right now, as he has had a lot of complications and lost a lot of weight. I hope that they figure out what’s wrong, because it seems that the earlier they catch it, the better chance he’ll have of keeping it under control (right?).
One of my VERY FAVORITE posts EVER! Thank you so much for posting this Julie!! Kaella, you are an amazing woman, thank you for sharing your (& your grandmother’s) story.
I also have Crohn’s & deal with it’s side effects every single day. It’s an intimidating disease, and can really drag you down…unless you try to make the most of it, and just try to laugh as much as you can about all of the trips to the bathroom that you have to take.
One thing I have found out (recently 🙂 ) is that now I am pregnant, it has almost gone into ‘remission.’ I’m hoping that it will continue after I give birth too. That would be a miracle!!
Thanks again for sharing this & for getting the word out there more about Crohn’s disease! I KNOW there is a cure in the near future.
Thanks Holly! I can totally relate! I’m also expecting and had ice cream for the first time in 8 years!!! 😉 It’s bizarre to not have to spend a significant amount of time in the bathroom every day. I hope remission continues for both of us after pregnancy!! Wishing you a Happy and Healthy 9 months!! 🙂
You too!! 🙂 Thank you! & thank you for sharing, again!!
Thanks for sharing about your pregnancies. My husband and I are trying to get pregnant and my ulcerative colitis has always been a concern. My GI has told me a lot of women go into remission during pregnancy, so I’m glad you’re both feeling well!
Such an encouraging story! My Dad is a pediatric gastroenterologist and is very involved with CCFA. It’s such a tough disease to live with, especially for kids.
I just want to clarify something for your readers. Crohn’s disease is NOT another form of ulcerative colitis. Both Crohn’s and ulcerative colitis are two types of inflammatory bowel diseases (IBD), but they are very different diseases in terms of regions of the GI tract that they affect and their complications!
I was thinking the same thing – thanks for saying something! While they are both forms of IBD, they are not forms of one another. And Ulcerative Colitis can be “cured” with surgery in the form of a total colectomy with j-pouch or just an ostomy.
Sorry ladies, that was quick typing on my behalf!! Thanks for clarifying for the readers 🙂
That’s ok! I was in a hurry too, and wanted to add how amazing all you have done for this cause is. I too (was) a sufferer of Colitis – (I had surgery for it), but will always suffer from a bit of IBS…I’ve always thought of volunteering but have always had an excuse not too. Your story makes me want to finally do something too. Thank you so much for sharing!
P.S. You must be in the Vancouver area (I noticed the White Rock shirt)? I just moved back to Edmonton from there 🙂
Ha Ha, yes I was representing Canada when I was in California! I grew up in White Rock but now live in Lethbridge 🙂
Lots of my friends have had the surgery. I hope you’re feeling okay now!!!
That’s awesome you want to get involved!! one of my best friends helps run the Edmonton chapter. If you decide you want to get involved, I’ll hook you guys up! The next event is the Gutsy Walk at the end of June 🙂 It’s so much fun!!! My email is kaellacarr@hotmail.com if you want more info! Take Care 🙂
This is a beautiful post, thank you so much for sharing. Several months ago, my sister, who is not only my sister, but also my best friend, was diagnosed with Crohn’s Disease. Each day, I think about how I can best help her and encourage her to continue staying strong, despite all she has encountered. This post today, provided me with the inspiration and desire to continue pursuing my quest to best support her and also provides me with hope, which coincidentially, is my sister’s name – that someday, a cure will be found. Thakns again for such a heartwarming and much-needed/appreciated post!
— Melissa
Thanks so much for your story Kaella! My boyfriend has Crohn’s and this is something both of us are looking to get more involved in volunteering for. We are hopeing to get involved with the different bike rides they have for CCFA.
I love the Painted Turtle!! My sorority (Delta Zeta) supports them nationally and in college that was always my favorite place to send our philanthropy money! 🙂
What a beautiful story! I was so moved when I ran a Rock n Roll half marathon recently, and saw so many people with Crohns and colitis running along with me or in honor of their family/friends…truly inspirational!
my friend’s dad died of Crohn’s disease. Thank you for this informative post.
Thanks for this inspiring post! Kaella, you are truly amazing for rising beyond the negative of this disease. I also have Crohn’s Disease. I was diagnosed at about the same age and went through the same feelings of despair. I’m thankfully in remission now and haven’t had any flare ups since I decided to change my diet. I know that for some people, diet isn’t enough and finding a cure for this disease is needed. I’ll definitely be looking into getting involved with the CCFA!
Awesome!!!! They have so many fun volunteer opportunities!
I’m so happy you’re in remission. I truly believe that diet and exercise can help a lot of people. I’m glad to hear you’re one of them 🙂
Take Care!!!!
Kaella! You are an amazing inspiration. Best wishes for you!
Wow, you are amazing. Thank you so much for sharing your story. I know there are several bloggers who suffer from the same disease. I hope you can serve as a hope and an inspiration to them!! 🙂
Thank you Julie for posting this, and for highlighting so many great organizatins!! I just read all the comments and am so touched! I know that someday we will find a cure 🙂
when is leslie going to do a guest post? : )
i love that you actually had this guest post. really informative and good to know! keep it up!! 🙂
<3 always, Jess
This is exactly what I needed to read today. I was diagnosed with Crohns 10 years ago and now, at 20, I sometimes feel like a sick old woman trapped in a young body. I’m currently recovering from surgery and I’ve been kind of down because of it, but this post definitely lifted my spirits. Thanks so much for this!!
i’m so glad you enjoyed it. kaella is amazing!
Thank you for posting your inspiring words! I was diagnosed with ulcerative colitis when I was 29. I had a really bad 2 years, but I have been symptom free for almost 18 months!
Thank you SO much for posting this story, Julie. It was almost unreal to read her story, it’s so much like mine! I have Crohn’s Disease as well, and I’m currently studying broadcast journalism/communications. College is tough with Crohn’s Disease, but I can’t let it stop me. A ton of people don’t know what it is, but I’d love to help change that!
Thanks again for this post, and lovely story, Kaella!
thank you for commenting, bret! i love your positive attitude!
Thanks Bret!!! I love your positive attitude as well!!!
Good luck with your broadcasting studies. Being in the media has really allowed me another outlet to share my story.
Take Care hun!!
Thank you Julie for sharing Kaella’s story…
I was diagnosed with Crohn’s at 28 – almost 20 years ago.. I have been on all types of medication as well as tried alternative medicine.
10 inches of my large intestines were removed in 1997, only to have the disease return again after18 months. :(…
In 2005 I was a volunteer at the Painted Turtle in California while 5 months pregnant at 40! That truly was a life changing experience for me – sharing a cabin with 14-15 year olds and admiring their strength and courage. Pearl Jam’s Mike McCready (Crohn’s) stopped by to participate in the cabin chat!
In this moment,my disease is in remission (knock on wood)! Part of my treatment has included the natural steriod “Sea Cucumber – by Marine Forte”. It has been a wonder drug…
Thank you for posting this story. This is a beautiful post. I was just diagnosed with Crohn’s Disease in January after suffering my entire life from stomach issues. I have been in a flair up ever since. It’s been a struggle trying to figure out what I can and can’t eat and what medications help. I’m trying my best to stay strong and be as positive as I can but it is very hard. I am 3 months away from my wedding day and I want nothing more than to be pain-free and healthy for my wedding and honeymoon. Thank you for this post. It makes me feel good to know I’m not alone.
Congratulations on your upcoming wedding!!! I just got married in October and it was so important for me to feel “healthy” and “normal” on my wedding day and honeymoon as well!!! I’ll be thinking of you and sending you good thoughts. Take Care!
Love this post — so well written and I always appreciate and respect people who help spread the word about Crohn’s & colitis. I’ve had Crohn’s disease since I was 7 and as much as it sucks, it has also provided me with so many opportunities and helped me meet so many people. I feel like I’ve done my research, but I had never heard of The Painted Turtle! So thank you, Kaella, for sharing and thank you for your continued advocacy in helping spread awareness. It’s not a fun disease to talk about, so good for you for getting out there. Keep taking good care of yourself!
My sorority chapter’s philanthropy was the Painted Turtle! I am so happy to see the word being spread about such an amazing camp. Thanks for sharing your story, Kaella!
My brother-in-law has Crohns disease. His was diagnosed after months/years of trying to heal from a surgery wound that wouldn’t close up. It took so long to diagnose because no-one was looking for Crohns! He’s been doing remicade infusions and is nearly in remission(and his wound is pretty much healed up).
Thanks for this post. Very informative. Wow – folks living with this disease are true heros.
I was diagnosed with UC in 2004, so I can sympathize with what you had to deal with. A huge thank you for stepping out and being such an inspirational story for CCFA – patients and families. The Painted Turtle sounds like a wonderful experience for IBD kids. thank you 🙂
Thank you so much Julie and Kaella for posting this. I have Crohn’s Disease and it’s always nice to “meet” other people with the same story. I am hoping to get pregnant soon (knock on wood) and have been so worried about taking my meds and being pregnant. Glad to hear you’re feeling well with your pregnancy!