Tag Archives: IBD

Get inspired! Crohn’s fighters share what works for them

Inspiration comes from everywhere and anywhere. We think the folks out there, fighting every day with with IBD, are among some of the most inspiring. That’s why we love to share their stories!

Kristina Krstev‎

“It has been 8 months since I changed to a pescatarian lifestyle…and I want to share my story. In May 2017 I was again in and out of the hospital due to my Crohn’s disease. Taking 14 different medications a day plus daily steroids to help…yet they never did.

Image may contain: 2 people, people smiling, closeup“I was sitting at home after another expensive doctor appointment where I was told the next med would be a biological drug. The first side effect listed was ovarian cancer. I was terrified. A day later I was flipping thru stuff and ran across a ted talk about a man who had Crohn’s disease. Like me he was in pain daily and slowing losing the fight. He talked about how he changed to a vegetarian diet, and the way it changed his life. After a year they could not find the disease in his body. I was in disbelief. How could diet do all that?

“After I did research I began to get angry. Not with my disease anymore, but that after 10 years not one single specialist or doctor told me anything about how this could impact my life. I decided that I would try a pescatarian diet. After two weeks my symptoms declined and at three weeks they were gone. No more meds and no more steroids that made everything in my body hurt daily.

“I did not start this as an animal rights activist, and I’m still not. It’s more about what’s IN meat and diary that terrifies me now. The genetically enhanced food, antibiotics and so much more that are put into the animals we are supposed to consume from factory farms. We are disconnected from our food. We don’t hunt our food anymore and know that it came straight from the outdoors and was clean to eat. We walk into a well stocked grocery store and put our trust in multi million dollar industry’s who want more money from us.

“This is my story. You don’t have to agree with me, but I wanted to share it in the hope that it may help someone else as it did me. I am 7 1/2 months free from meds, and down 45 pounds. I don’t hurt everyday. I don’t worry about my disease ruining yet another experience I wanted to enjoy. I am free. I am healthy.”

Kayleigh Thompson

Image may contain: 3 people, people smiling, people standing and indoor“I was diagnosed with ulcerative colitis. The biggest issue I’ve come across is with other people judging in a sense I don’t appear to look unwell or ‘she not that bad’. What they don’t see is our day to day lives can be filled with pain, stress, embarrassment too name a few. I’m still finding it hard to find the right coping mechanisms and the amount of doctors trips and medications I am fed have sometimes pushed me to my limits. Recently being able too to talk about my illness and raise awareness to others does help me come to terms with everything. Every day is a new day, a new challenge and you should never judge a book by its cover.”

Nicole Waddell‎

“I was diagnosed at the age of 17 in 2004. I have had Crohn’s Disease for 13 years now. I have a rare case of Crohn’s disease (IBD). It is important not to confuse an inflammatory bowel disease (IBD) like Crohn’s disease or ulcerative colitis with irritable bowel syndrome (IBS). IBS is a disorder that affects the muscle contractions of the bowel and is not characterized by intestinal inflammation, nor is it a chronic disease. Most patients have it affect the Ilium of their intestinal tract, but when I was diagnosed mine was covering my whole GI tract. 

Image may contain: 4 people, people smiling, people standing“I was in so much denial of my new disease that I didn’t do what I was told and I became so sick I had to drop out of my 1st semester of college and move back home with my parents. I was devastated, depressed and full of anxiety of not knowing what would happen to me mentally or physically.

“I went physically anorexic due to not eating because the Crohns would give me horrible stomach cramps. I also had body pains, fatigue, depression, anxiety, & frequent diarrhea.
Over the years I have done many many rounds of max steroid doses. I have tired almost every biologic on the market. I now take a daily chemo drug as well as a high dose biologic every 6 weeks. I still have my intestines and colon. I am checked every year for esophageal, stomach, intestinal and colon cancer. Which I am at high risk for getting.

“I have had two kids through all this pain disease body and I wouldn’t change a thing for taking that chance. They are my biggest blessing! I love my little family of four! I might be out number and never getting to have a baby girl but I wouldn’t change it at all these boys melt my heart.
I would like to thank my family and most of all my husband for going through all the doctors visits, hospital visit and specially visits. I don’t have a cure for this lifetime disease yet but maybe one day we will find something close.

“Crohn’s doesn’t just affect you GI Tract. It causes you to have secondary problems as you go through the years of being diagnosed. I have had some crazy stuff happen to me over the years and I know there are more to come. I wish I didn’t have arthritis at the age of 30, but I do. I have mild eczema, dry eyes, anemia, fertility problems and have had some crazy skin problems over the years.

“I want you to know that although Crohn’s has already taken so much from me, that it will never steal who I am. Living with Crohn’s disease, you learn to love in the mindset that you have control of very little of the life you live in. The drugs and diet control you. I try my best every day so I don’t feel or act like it is stealing any more from me than it has already.
I am blessed I am still here to enjoy life with my family and friends. Please spread the word and share the commonly hidden invisible disease. Thank you and god bless! ”

Thank you to you brave survivors and thrivers out there for sharing your stories!

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Good things happening for Crohn’s, Colitis and IBD

Things are happening all around us thanks to our survivors, fighters, caregivers and advocates making a difference for folks with Crohn’s, Ulcerative Colitis and other forms of IBD.

We thought we’d focus on the good things happening in the digestive health world and the progress we’re making.

Dawn, Stage IV SurvivorImage may contain: 1 person, smiling, outdoor and closeup

“After fifteen years of symptoms and few answers, Dawn received a grim diagnosis: stage IV colorectal cancer at age 36. Yet she fought and became, as she says, the ‘luckiest of the unlucky’—a survivor. Today Dawn joins us in fighting to ensure other young people and doctors don’t miss the symptoms of young-onset colorectal cancer, advocating for awareness through our Never Too Young Advisory Board. The board is made possible by our amazing supporters, including those who give by shopping through our Amazon Smile page: http://smile.amazon.com/ch/86-0947831.”

 

Updates from the Michigan Chapter of Crohn’s and Colitis Foundation

IBD Awareness Breakfast in Traverse CityImage may contain: 7 people, people smiling, people sitting

“During Crohn’s & Colitis Awareness week, the Michigan Chapter staff, volunteers and Dr. Peter Higgins participated in an awareness breakfast about IBD. Many thanks to Representatives Alexander and Love for their sponsorship of the Awareness Week proclamation and to the legislators that took time out of their day to visit. And of course none of this would have been possible without the support of our families from the Lansing area and Traverse City. Thank you for your time that day!”

Webinars

“Couldn’t join us for our IBD Awareness Week Educational Webinars? You can now watch the recordings online. Topics include: Diet & Nutrition; Stress Management; IBD Wellness; and Disability Accommodations. Watch them here:http://bit.ly/2jyyKg0

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The Fight for Step Therapy by Crohn’s and Colitis Foundation

Image may contain: 2 people, people smiling, suit“We’re in Boston today testifying in support of step therapy reform in Massachusetts! Thank you to the IBD patients and physicians who are bravely telling lawmakers how the insurer practice of step therapy, or “fail first,” puts patient care on the back burner while insurance companies reap extra profits. Their powerful stories of debilitating physical, mental, and financial health will hopefully encourage legislators to pass S.551 and H.492.

“Interested in becoming an advocate in locally or nationally? Sign up for our Advocacy Network:http://bit.ly/2C4yc4Q

Keep up the good work, and thank you for continuing the fight!

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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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Women’s Health Week: Colon cancer isn’t just for men

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From May 14 – 20, the Office on Women’s Health, U.S. Department of Health and Human Services, works to raise awareness around and provide recommendations for women’s health.

The mission of this initiative is to “Provide national leadership and coordination to improve the health of women and girls through policy, education, and model programs.”

Although there are several issues that primarily affect women – cervical, ovarian and breast cancers, mammograms, osteoporosis – women also face risks with digestive issues. Irritable Bowel Syndrome (IBS), Inflammatory Bowel Disease and Colon Cancer are just a few of the health concerns of which Women’s Health Week works to increase awareness.

And while the risk for colon cancer is slightly lower in women than in men, almost 5% of women will face a diagnosis this year alone. However, those risks have been decreasing steadily over the past several decades, due almost exclusively to advanced screening capabilities and treatment options.

But we’re not out of the woods just yet: Colon cancer is still the third leading cause of cancer deaths in women in the United States.

“The old message was that colon cancer was a man’s disease. We have to be careful not to regress in our message to women.” says Sidney J. Winawer, MD, of Memorial Sloan-Kettering Cancer Center in New York City, to MedPage Today.

So what can women do? Two words: Get screened.

Advancements in technology, research and treatment are only good if we actively opt to utilize them. Most medical professionals recommend that women start their regular colonoscopies at age 50. However, if you have a family history of the disease, or other potential factors such as obesity, smoking and certain ethnicities, your doctor may recommend an earlier start.

For more information on women’s health issues, and National Women’s Health Week in general, WomensHealth.gov. There, you’ll find out how you can get involved, and a comprehensive list of topics that affect women’s health, with information and additional resources for each.

Call to book your colonoscopy today. And remember, screening saves!

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March Madness for Colon Cancer Awareness

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The staff of Troy Gastroenterology, Center for Digestive Health, showing their support for Colon Cancer Awareness Month by dressing in blue on March 3.

Every March, the Colon Cancer Alliance celebrates Colon Cancer Awareness month, to push for more support, research and recognition of the struggle the disease incurs.

We lose more than 50,000 Americans every year to colon cancer, with more and more young people turning up with the disease.

“Colon cancer is the third most commonly diagnosed cancer and the second leading cause of cancer death in men and women combined in the United States,” says the CCA.

The good news is, with early screening, detection and even prevention is possible. Most cases of colon cancer appear in folks over the age of 50, which is why the current recommendation for colonoscopy is also age 50. Even then, people with a first-degree relative (parent or sibling) are far more likely to develop the cancer than others. For those folks, your doctor might recommend starting your colonoscopy routine even earlier.

How can you help?

Get involved with Colon Cancer Awareness by making a donation. The Salah Foundation matched donations in 2016 to generate more than a quarter million dollars in extra revenue for research.

If you’d rather participate, the CCA hosts the Undy Run/Walk all over the country to raise funds and awareness.

The Never 2 Young campaign is also doing its best to raise awareness about the decreasing age of colon cancer’s victims.

“As the leading national colon cancer patient advocacy organization, we’re dedicated to bringing together the brightest minds to increase screening rates and survivorship,” says N2Y.

This month, show your support for fighters, survivors and family members of folks with colon cancer. Wear blue, join a local event, and donate money. Every little bit counts to get us to a stage of early detection and prevention.

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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

Image result for crohn's and colitis awareness week

#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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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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