Tag Archives: inspiration

Crohn’s fighters share their stories

One of our favorite things to share is the stories from folks struggling with Crohn’s, Ulcerative Colitis, ostomy bags, and other forms of IBD. The fight in them is such an inspiration to us that we feel compelled to share their strength to continue to spread awareness and hopefully to find a cure.

Image may contain: 1 person, smiling, standingJessica,  Clinical Psychology Ph.D. student

“I wish others knew that people with IBD (and really all patients with chronic illnesses) deal with so much more than the physical symptoms of their disease. Having a chronic illness can take a huge mental and emotional toll. This doesn’t mean that all patients with IBD have a mental illness, but some report anxiety, depression, insomnia, and difficulty coping with their illness. On a side note, I wish patients with IBD knew that it’s OK to feel this way and that seeking help from a mental health professional is not a weakness, it’s a sign of strength. You are not alone!”

 

Michelle Lynn Law

“My last link to show my fight and support”

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“My daughter 2 weeks ago at her Remicade Treatment. She has diagnosed 2 years ago 13 but We just started Remicade a year ago. Had no flares almost a year but now she’s experiencing what seems like an allergic reaction 10 minutes into the treatment last times. Been glaring since April so we are back on Prednisone Euceris. Hoping this isn’t a sign of Remicade failing.”

 

 

Kalee, NCCL Co-Chair

Image may contain: 1 person, smiling, standing, flower, outdoor and nature“I remember everything about the phone call from my doctor- where I was standing, who I was with, and what words my doctor chose when telling me about my diagnosis. I remember hurrying inside to look up the prognosis, treatment, and what my life might look like. To be honest, I was terrified and had no idea how I’d manage my disease in college. My Crohn’s Disease has brought me to some of my lowest points both mentally and physically, but it has also given me some of my biggest triumphs.

Life throws challenges your way but the Foundation and NCCL taught me several extremely valuable lessons. The first lesson is that you are not alone. I was introduced to one of the strongest and most incredible community of supports. The second lesson is that you are bigger than your disease and that your IBD does not define you. When I found out I was selected to be a part of the National Council of College Leaders, I was over the moon and originally visualizing what I could contribute to the council but it was the council that gave me the greatest gift possible- more than I could ever repay. The Foundation and council gave me the tools and confidence to recognize sub-par aspects of patient care and access to care and to actually do something about it. I’ve spoken to legislators about healthcare reforms, worked with FDA representatives and physicians about redefining the use of medical foods, and helped create calls to action.

These steps in the right direction and the hope that future IBD patients don’t have to travel the path I did are what have gotten me through some of my toughest moments in college. Now that I’ve graduated and am transitioning out of my role as council co-chair, I am forever grateful for the opportunity to be given a voice in the IBD community, to have been a part of a council that’s helped me grow more than I ever thought possible, and to start my journey as a future healthcare provider given all that I’ve learned through the Foundation.”

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Inspiring stories from survivors of Crohn’s

Living with a bowel disorder is not a task for the weak. Folks who are surviving and thriving are a constant source of inspiration to us. As part of a regular series, we try to highlight those fighters out there to both celebrate their successes and raise awareness around their struggles.

Here are a few of our favorite stories.

18671186_1452587181467460_525827228929541125_n“This is my 15 year old niece, Audrey. She was just diagnosed with Crohn’s a week ago after being at Children’s Hospital in Nashville for 12 days. She had lost 15 pounds in 2 weeks and had to get two blood transfusions. I am her legal guardian for 6 years now and it broke my heart to have her sent home with a feeding tube and a pic in her arm for antibiotics. She is getting better now with all that gone but is on Prednisone, Pantesa and omeprazole, iron and has back pain and fewer flare ups. She is still weak and had a way to go which is very depressing for her. She had to miss summer, band camp and being with her friends. She has changed the way she eats and knows what irritates her stomach. No more fast food, dairy, some bread and fried foods. It has been a rough road. She has a check up in August and they may put her on Humira. I pray it will help her. My heart goes out to everyone who suffers through this daily and is parents who have to see our children go through pain. Prayer is powerful and I believe my Audrey is healing due to prayers.”

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“I have severe Crohn’s disease that I have been battling for 20 years, this is my Crohn’s tattoo”

 

 

 

stephanie-hughes-hospital-e1432075627501“Today is World IBD Day and I am reminded of a lot of parallels from two years ago. In 2015, I was pregnant for the first time and on May 19 I was admitted to the hospital for the first of four admissions before I was induced four weeks early due to an intestinal blockage. I am so thankful that I am not spending another World IBD Day in the hospital, but I am very aware of how quickly things can go downhill for me if I am not careful about the foods I eat. Remember today that IBD is not just a bathroom disease. IBD does not mean one thing, but can lead to so many different complications for different people.”

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“I got the purple ribbon with a dragon. Never stop fighting.”

 

 

 

 

 

 

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Three inspiring stories from IBD fighters

Every day across the country, more than one a half million people live with some form of irritable bowel disease. The struggles of these folks can vary immensely, with the goal of most to find some normality within the disorder.

Recently, we’ve come across a handful of really incredible and inspiring stories, so we thought we’d share a few with you.

Tony, a Crohn’s patient from Pennsylvania

For me, Crohn’s is one piece of a very complicated medical package – I also live with epilepsy, Celiac disease, and a rare, systemic genetic connective tissue disorder called Ehlers-Danlos Syndrome, and I struggle daily with depression. Suffice it to say, I manage A LOT when it comes to my health and overall well-being.

There’s something about living with a disease like Crohn’s that has altered my entire perception of myself and my place in the world. When I was diagnosed, I stared death in the eyes. Crohn’s, forever complicated by my entire medical mash-up, nearly killed me. It ravaged my body before more treatments were developed. At the time, infliximab was the only biologic therapy on the market, and after a 13 year run with it, it was no longer helping me. Surgery was necessary and as a not yet out of the closet gay man, I feared I would never live an authentic life. I feared I would die before I could ever tell another man that I thought he was cute.

There is absolutely nothing easy or carefree about living with Crohn’s. It’s painful. I’m 33 and I still have accidents. I am on a very strict medication regimen, and there is not a decision I made that Crohn’s, and my health in general, does not directly influence. There are no days off for me or the other 1.6 million Americans living with IBD. This disease is harrowing, but I have managed and found joy in life and, after all of it, I wouldn’t change anything.

I’m often asked why I wouldn’t change life with something so debilitating as Crohn’s disease. And, for me, Crohn’s has caused issues with my skin, kidneys, joints, and, as new research suggests, probably doesn’t help my depression. It’s because living with Crohn’s has taught me so much about my own will to survive and my abilities to rise up against all odds.

I’m strong. I’m resilient. I’m capable. I do not know if I would be the strong, witty, and humble person I am today without this disease.

Via CCFA – Crohn’s & Colitis Foundation of America

 

Tyler, an IBD fighter, member of NCCL

My IBD is something I have constantly tried to keep on the “back burner,” to not focus on it and live my life without any limitations. For years this worked just fine until recently, when complications arose just days before the start of the fall semester.After undergoing several tests and surgery, I was faced with the difficult decision of whether I could return to school for the semester or to take off. 

My body and my mind started on opposing sides, as my mind was set on returning to school but my body was not ready to do so. After much contemplation, they came around to agree on a simultaneous decision to take the semester off. Despite it not being the decision I hoped for, placing my health as a priority was the best decision I’ve made in a long time.

After all, if we don’t have our health, what do we have?

I think this is an important point that is easily overlooked in the younger generation. We are on the timeline of school, a career, the future, etc. that our health can easily be left on the “back burner” when it shouldn’t be. Everything going on in life can wait. Take the time for your health when needed. Regardless of what IBD puts on hold in your life, you will always bounce back and one up the disease.

Via CCFA Campus Connection

 

Lauren Zirfas, a Crohn’s patient from KansasLauren Zirfas

I was a healthy, happy child until the age of four.  I loved to ride my bike, swim, sing, but most of all I loved to dance.  Then things changed.  I was constantly tired, had severe anxiety, always complained of a tummy ache, my skin was very pale with huge, dark circles under my eyes, I used the bathroom A LOT, and I had quit growing.  During the next few years I had every blood test possible, yet nothing showed up.

When I started school, I was so tired that I could barely make it through the day.  I would come home and go straight to my room to take a nap.  My mom and dad woke me up to go to dance class, eat supper, or wherever we had to be. Once, I fell asleep at the table in my plate, like a baby does; and another time, I fell down the stairs because I was so exhausted.  I couldn’t keep up with my brother, Conner, or my friends at the swimming pool.  After 30 minutes at the pool, I would ask my mom if we could go home.  I even asked my parents if I could quit dance class because I just couldn’t stand two hours of dancing after a whole day at school, and dance was my life!  My mom and dad were very worried because a normal kid doesn’t act like that.  I am the youngest of five, so they should know.

Finally in March of 2015, I was referred to Dr. Hattar.  She had me limit the amount of dairy products that I ate each day and took away cow’s milk, but my symptoms didn’t go away.  On May 4,2015, I had an endoscopy and a colonoscopy so Dr. Hattar could look inside of me.  That was the day I was diagnosed with Crohn’s Disease, just two weeks after I turned eight years old.

I began receiving the Remicade Infusion ten days later on May 14, 2015; and have been receiving them every six to eight weeks since.  My family has had to make a few changes at home since I was diagnosed with Crohn’s, but it hasn’t been too bad. Now I am able to keep up with my brother and my friends. In the past year, I tried out for Ballet Wichita’s The Nutcracker and danced as a mouse, cheered for my brother’s football team, played basketball and softball, and enjoyed my true love of dancing by training/going to class every week and dancing whenever my feet hit the floor.  I am now growing like a normal, nine year old kid should, thanks to Dr. Hattar.

One day, I hope there is a cure for Crohns Disease so that kids like me don’t have to go to the doctor for an infusion.  That is why I am walking for a cure and I am happy to share my story with everyone.

Via Crohn’s and Colitis Foundation of America – Minnesota/Dakotas Chapter

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Celebrate the survivor in your family!

National Cancer Survivors Day

On Sunday, June 7, we celebrate survivors and the people who got them there.

Sunday, June 7 is National Cancer Survivors Day. This day commemorates all the fighters and their support systems and recognizes their courage. Survivors Day “is a celebration for those who have survived, an inspiration for those recently diagnosed, a gathering of support for families, and an outreach to the community,” says the website.

Now in its 28th year, National Cancer Survivors Day aims to support fundraisers and other events in an effort to raise awareness and funds for research. They offer a detailed, seven-step process to help you get your event off the ground. After you register your even with NCSD, they work with you to get sponsors, a location and pick a theme like “Casino Royale” or “A Day of Pampering.” The site can also help you land a keynote speaker to help gain publicity for your event.

A recent blog on the site explains this day of recognition.

We want everyone to share the message that there is life after cancer – and that’s something to celebrate – but we can still do more to lessen the burdens of cancer survivorship.

We salute you, survivors. Not just on this day of recognition, but every day. The courage and strength it takes to fight cancer is unparalleled. Thank you for being an inspiration to us all.

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