Tag Archives: Crohn’s

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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Can one diet change ease Crohn’s?

Image result for plant based good fatsCrohn’s is a disease that hundreds of thousands suffer from in silence. An autoimmune disorder, the symptoms are different from person to person and just as difficult to treat.

Food is another challenge to folks fighting Crohn’s, with flare ups stemming from all types of sources. But a new study is linking an uptick in consumption of plant-based fats with a decrease in bad bacteria and inflammation in the digestive tract of mice.

“The finding is remarkable because it means that a Crohn’s patient could also have a beneficial effect on their gut bacteria and inflammation by only switching the type of fat in their diet,” said Alexander Rodriguez-Palacios, DVM, DVSc, PhD to EurekAlert.

The research seems rather promising, given that patients with Crohn’s could begin to see the benefits simply by swapping coconut oil for butter or using cocoa butter as a substitute.

Another positive aspect is the insight this offers medical researchers into what makes good fats, well, good.

“Ongoing studies are now helping us to understand which component of the ‘good’ and ‘bad’ fats make the difference,” Rodriguez-Palacios said. “Ultimately, we aim to identify the ‘good’ fat-loving microbes for testing as probiotics.”

In other words, this cross-referencing of research could start to pinpoint the magic potion for sufferers of Crohn’s. Since each person and their lower tract is unique, however, it’s not likely there will be a one-size-fits-all solution that comes out of this line of study. But getting closer to understanding what makes these good fats reduce inflammation and symptoms in any way is a positive step for patients.

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Take Steps for Crohn’s, Colitis and IBD: This Saturday in Royal Oak

Around 1.6 million Americans suffer from some type of IBD, including Crohn’s and Ulcerative Colitis. The worst part about these numbers is that there is no cure, just treatment plans that aren’t guaranteed. And of all those plans, every person fighting a form of IBD reacts differently.

So what can we do?

First thing’s first: Take Steps! The Crohn’s & Colitis Foundation of America hosts walks all across the country to raise awareness and funds for all forms of IBD. This Saturday, June 10, 2017, you can participate in our very own walk in Royal Oak.

Join the Center for Digestive Health as we sponsor a Take Steps walk for the cure in Meininger Park. Along with the walk is a festival full of activities and sponsors with additional information. Check in and the festival begin at 9am, the walk itself starts at 10:30am. All age levels are welcome.

What will the walk support?

Groundbreaking research, empowered patients, and wise investments, all with the goal of furthering research and getting closer to a cure.

“Our research is unprecedented and has significant potential to directly transform IBD patients’ well-being. We are incredibly proud of the work our researchers do each and every day,” says the Crohn’s & Colitis Foundation. “Our national and local programs and services are designed to provide patients of all ages and their loved ones with helpful information to better manage their disease while providing a supportive forum to share experiences and concerns, and connect with others.”

The fundraising is as easy as it comes. Register for the walk, and convince a few close friends to give as little as $16 each. You can also organize a team for the event, to up the awareness and the cash flow to the organization. Bring your kids, friends and pets to enjoy the day’s festivities.

For more information, visit the CCFA’s FAQ page regarding the race, learn more about what Crohn’s and Colitis are, and have a look at specifically where the money goes, so you can rest assured that your efforts are in the right place.

We hope to see you there!

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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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The real struggles of three IBDers

On a normal day, car trouble or a busy grocery store are minor inconveniences. When you add Crohn’s or Colitis to your schedule, your normal day can turn into a bad dream in no time.

To raise awareness of this struggle and show how strong these survivors are, we wanted to share three encouraging stories as we look forward to the bright future of IBDers.

 

Amber Lopez Pelton, Crohn’s SurvivorImage may contain: 2 people, people sitting and indoor

I’m still wearing purple to raise awareness for IBD💜💜💜 I thought someone fixed the brake lights a while ago, but some nice man honked his horn& told me they were out still out. Being in a bad flare, I had an extra change of clothes& took the girls with me& changed& cleaned myself the best I could while I got the truck serviced. It was very embarrassing but The Automotive place treated us very well& gave us a good price& understood. They got to see a little bit of a taste of what us IBDrs go thru on a daily basis, behind closed doors. It can cause depression as well. It’s an autoimmune disease!! So please, take us seriously, many have passed from this& it can b hereditary.

Let’s fight for a cure everyone!! 

Oh& it can turn into Cancer without proper treatment. So let’s raise awareness& fight for a cure💜💜💜Stay strong my IBD Warriors!!

 

Nicole Lynn Cochran, Ostomy SporterImage may contain: 2 people, people smiling, text

I am 28 years old and have suffered from severe ulcerative colitis since I was 19. For years I hid my illness and was embarrassed to talk about the painful and debilitating symptoms associated with inflammatory bowel disease.

I had gone through over 30 medications including biologics, high dose steroids and even forms of chemotherapy with no relief. My colon was killing me. Three weeks ago I went under the knife to remove my diseased colon. I have two more surgeries to go to create my jpouch and to reverse my ileostomy.

I wear a bag and I am not embarrassed, and I have no reason to be.

This bag is giving me LIFE and I intend to take full advantage of that.

I have come a long way from the 19 year old girl that was afraid to talk about her illness. I have an ostomy and I am proud of it!

 

Image may contain: one or more people and plantAmber Schieber, Lifetime IBD Warrior

I’ve had Crohns Colitis and IBD since I’m 9 years old, I’m 20 now, my disease is so sever it has moved into my lungs and has caused respiratory diseases. ” Just breathe” is written in my parents handwriting, symbolic to, deep breath, everything is going to be okay, one step at a time.

Everything does get better, don’t give up, fight like a girl.

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Crohn’s and Colitis Awareness 2016

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#IBDVisible 2016

This week, we celebrate Crohn’s and Colitis Awareness with the goal of making IBD more visible and less isolating for folks who live with it.

The tricky thing about Crohn’s, Colitis, and other forms of IBD, is that oftentimes, people who struggle with the digestive disorders seem ok on the outside. However, the symptoms take their toll internally, causing all sorts of fatigue, loss of appetite, cramping, and frequent bowel movements that can make it difficult to carry on with a normal day but aren’t always visible to folks on the outside.

This awareness week is meant to recognize folks who struggle with various forms of IBD, their caregivers and families, the healthcare professionals who provide care, and the researchers dedicated to finding more advanced treatments and eventually a cure.

The Crohn’s and Colitis Foundation of America has several ways you can get involved or simply raise your awareness about IBD. There are chapters across the country that you can connect with through Facebook to keep up with local fundraising events. Have a look at Michigan’s to see what’s going on in your area. Then, you can read the stories of folks who live with a form of IBD, learn about donating or participating in an event, then read about recent research and the advances the medical community has made.

Beyond that, sharing articles, memes, infographics and even your personal story on social media can help raise awareness about IBD and the struggles these heroes face.

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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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New study reports link between fungus and Crohn’s

Crohn's has a new fungus to examine for a cure.

A new study shows a connection between Crohn’s and a gut fungus, the first time this relationship has been studied.

A small but promising study was released by Case Western Reserve University showing a link between certain types of fungus in the intestines. There’s bacteria in everyone’s guts, but folks with Crohn’s have an abnormal immune response to them. Until now, few studies have looked at the role of the fungi that’s also present in our tummies.

“Equally important,” says Science Daily, “it can result in a new generation of treatments, including medications and probiotics, which hold the potential for making qualitative and quantitative differences in the lives of people suffering from Crohn’s.”

The study looked at four families with members who have Crohn’s and nine families who don’t. The presence of the fungi in question was much higher in family members with Crohn’s than those without. Fungus levels were higher and bacteria levels were lower in those with the disorder. This is the first time this type of connection’s been made.

Although this study is small, it’s important that it looks at different families from different regions. The two main causes of Crohn’s are genetics and environment, and families share those two!

Although “further research is needed to be even more specific in identifying precipitators and contributors of Crohn’s,” this is still great progress that can hopefully lead to additional treatments.

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Announcement! New Facebook page for Research Department

Our Research Department now has its own Facebook page!

Our Research Department now has its own Facebook page!

We’re excited to announce the launch of our Research Department’s very own Facebook page!

The goal of our Research Department is to conduct clinical trials for folks struggling with digestive disorders such as Crohn’s Disease and Ulcerative Colitis. For many patients who haven’t had much success with other courses of treatment, these trials can be a great way to explore other options.

Anyone interested in participating will have to qualify. If you do, you’ll have access to more than 75 years of research experience with high-quality care in a professional and comfortable environment.

To stay up-to-date with our latest trials, like our Facebook page, or contact us at (248) 267-8485.

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