Category Archives: Cancer Awareness

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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The latest in digestive health news

Image result for digestive health graphicSo much is happening in the world of digestive health. Clinical trials and research are revealing new trends and treatments all the time; fundraisers are happening across the country; more people are learning about the risks and working to prevent colon cancer.

Here are a few interesting things happening in the digestive health world this week.

Michigan Fundraiser – Golf Fore Guts Silent Auction

If golfing isn’t your thing, you can still support this Crohn’s & Colitis Foundation initiative through their silent auction. You’ll find all sorts of signed sports memorabilia and even an in-home wine tasting for 12 of your favorite people.

“The 5th Annual Golf Fore Guts silent auction is open! Bidding will close at 5pm on Sunday, August 13th. You do not have to be present to win. Click the link below to see the list of silent auction items like a Miguel Cabrera signed baseball and TaylorMade golf drivers. To register click the Sign In button on the website or text fore17 to 24700. Happy Bidding!”

Dating with Inflammatory Bowel Disease

Sahara Fleetwood-Beresford shares with The Mighty her and many others’ struggle to date with various forms of IBD – something that folks with healthy guts might not even think of. As if dating isn’t difficult enough, having the added pressure of numerous bathroom trips, frequent fatigue, or wearing an ostomy can create some obstacles that make dating seem unworthy.

“It is small things like this that could affect even the early on stages of dating that I like to get off my chest sooner rather than later. That way, it will soon become clear apparent whether there is any compatibility. These may be small things, but they occur regularly and could present a problem in terms of the outlook for the relationship.”

Read the rest of her heartfelt, honest, and eye-opening blog on The Mighty.

Colon Cancer Rates Rising in Younger White Folks

In the United States, the black population has faced historically higher rates of colon cancer than any other ethnic group. However, the recent rates of colon cancer have increased in the white population – especially in those under 50. This presents a problem since most doctors agree that screening for colon cancer and other digestive issues isn’t necessary until the age of 50 for most. Those with a family history of the disease are encouraged to get screened earlier, but if you’re not aware of your history, you’re at a higher risk.

” The number of whites being diagnosed with colorectal cancer and their mortality rates are rising, even as blacks are seeing a decline in both categories,” says Kaiser Health News. “Despite those declines, however, blacks still have higher rates of death from the disease.”

So while the community is rallying to make sure people are taking as many preventive measures as possible, it might be time to look at the age in which we’re doing so.

The best way to protect yourself is to learn your family history, get to the doctor, and to be open to as many preventive methods as possible.

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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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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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Better colonoscopy prep in the works

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Colonoscopy is by far the best way to detect and prevent digestive issues such as colon cancer.

Oh, the colonoscopy. Although it’s the most effective way to detect and thereby prevent colon cancer and other digestive issues, some people are still reluctant to commit to the procedure. Ask just about anyone who’s endured the quick and painless process, and they’ll tell you that the prep is the most difficult part.

Reports the Chicago Tribune: “Data suggest that about 40 percent of the people who should get a colonoscopy don’t, mostly because of the prep,” says Douglas Rex, a distinguished professor of medicine at Indiana University School of Medicine.

A typical colonoscopy involves drinking lots and lots of not-so-tasty liquids followed by lots and lots of trips to the toilet. Nothing is going to change in the toilet department, but the liquids are getting a face lift.

Researchers are experimenting with flavored shakes and bars such as strawberry banana or coconut that have the same effect as the historically dreaded liquid.

“Those drinking the new products were twice as likely as those who used the standard prep solution to be satisfied and four times as likely to recommend it,” says the Tribune.

The products should be available to patients in about two years.

The entire goal of these new prep methods is to get more people to commit to a colonoscopy, as it’s undoubtedly the number one way to detect and prevent cancer, tumors, polyps and other intestinal abnormalities.

“The easier you make it for people, the more you can improve their adherence,” says Susan Czajkowski, chief of the health behaviors research branch of the National Cancer Institute.

“The perfect screen has no value if it isn’t used.”

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Colon cancer rates on the rise in young people

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Listen to your body and be honest with your doctor. Early screening can detect and prevent complications from colon cancer.

As we continue through Colon Cancer Awareness month, our goal is to increase the conversations people have about the disease. Knowing that screenings are by far the most effective way to detect colon cancer early can even work to prevent it altogether.

An unfortunate trend in the fight against colon cancer is a spike in the amount of young people diagnosed. Formerly considered a disease reserved for older men, this new uptick in folks under 40 is disturbing but also mostly unexplained.

“People born in 1990 have twice the risk of colon cancer and four times the risk of rectal cancer as people born in 1950 faced at the same age,” says CBS New York.

For people of an average risk, the standard age to begin screening for colon cancer is 50. The only problem with that guideline is that younger folks are getting missed, often until it’s too late.

While the medical community struggles to pinpoint the cause of the surge, many speculate that changes in lifestyle and diet are to blame.

“Prime suspects include obesity, inactivity and poor diets,” said researchers from the American Cancer Society.

In other words, the behaviors we know are bad for us, and cause health issues across the board, are the likely culprit in the uptick in colon cancer.

While the statistics are alarming, the overall rates of colon cancer in younger people is still low. But that doesn’t mean there’s no lesson in this – be your own health advocate. Listen to your body and work with your doctor to pinpoint when something is wrong.

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It’s time to quit smoking for your colon health

Image result for quit smokingWe all know smoking is bad for us. We also know how much it sucks to try to quit. And while you’ve probably heard all of the advice in the world and all of the complications it can cause, now, there’s another reason to quit: Colon cancer recovery.

A new study suggests that folks who smoke aren’t as likely to survive the fight against colon cancer as former smokers or those who never smoked.

And to make matters worse, upon diagnoses, smokers were more likely to be in an emergency situation or need immediate surgery.

“People are generally deniers especially when it comes to pleasurable habits or when a life style change is recommended for their health,” said Dr. Sidney Winawer of Memorial Sloan Kettering Cancer Center in New York.

So what can you do?

The most effective way to quit is to work with your doctor to create a plan or to join a support group. Any time you’re looking to kick a bad habit, having support from a community or partner creates a level of accountability that is difficult to replicate on your own.

“Your doctor can be a key resource as you’re trying to quit smoking. He or she can talk to you about medications to help you quit and put you in contact with local resources,” says The American Lung Association.

The ALA has all sorts of other resources to help you make sense of what to expect and how to be successful at quitting. Check out their I Want To Quit Smoking page for reasons, facts, frequently asked questions and support you can get from the ALA itself.

Smoking is the worst thing you can voluntarily do to your health. Make an appointment with your doctor and commit to making yourself healthier.

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Colon cancer and exercise: The connection to longevity

Image result for older person exerciseEveryone knows that exercise is the one thing that we could all be getting more of. And even though it can be tough, especially in these cold winter months, now there’s even more of a reason to get moving.

A new study reveals that survivors of colon cancer have a better chance of survival if they engage in some exercise.

“Patients who engaged in at least five hours of non-vigorous physical activity a week had a 25% reduction in the hazard for survival,” says MedPage Today. “With four or more hours of weekly activity, the survival hazard improved by 20%.”

And it seems as though the length of exercise was more important than the vigor. Which is good news for folks who have a difficult time with cardio. Hitting five hours a week showed less progression of the disease and increased longevity.

An hour a day might seem a little steep if you’re just starting out. But you don’t have to jump right into the full schedule – you can work your way up. And, you can do 20-30 minutes at a time a couple times a day to help break it up.

Here are a few ideas to get going. Mix them up to keep things interesting.

  • Map out a walking trail around your office grounds or hallways, and take a break mid-morning and mid-afternoon to do a few laps.
  • If you have a dog, bundle up and get the both of you outside. Just make sure the sidewalks are clear.
  • Take the stairs whenever possible. If you work on a really high floor, get off the elevator three to four floors early and walk the rest of the way.
  • Set up one cleaning project a week, and set aside a half hour each night to work on it.
  • Try some simple yoga moves. Follow simple routines for beginners.
  • Find out what classes are offered at your local community center or school. Also look at your local gym or Y for an affordable weekly class.

While five hours is a great goal, if you know you won’t hit it, don’t set yourself up for failure. Aim to increase your activity level by one hour a week until you hit five.

And remember, “These findings suggest that it doesn’t take a lot of physical activity to improve outcomes,” says MedPage Today. “While exercise is by no means a substitute for chemotherapy, patients can experience a wide range of benefits from as little as 3o minutes of exercise a day.”

 

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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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