Tag Archives: awareness

Upcoming events around Detroit for Crohn’s and Colitis

More good things are happening in the digestive health world, thanks in no small part to social networks connecting the people who care about them the most. Those fighters keep the movement toward awareness going forward; and awareness leads to early detection and ultimately, prevention!

Here are some upcoming events to get involved in the fight against colon cancer, crohn’s disease and ulcerative colitis.

Mix and Mingle at Royal Oak’s HopCat

The Michigan chapter of the Crohn’s & Colitis Foundation of America are looking for new members to get involved. And what better what to do that than over beer? Head to HopCat in Royal Oak on Feb. 26 for a meet ‘n’ greet or to mix ‘n’ mingle with other young professionals in the area.

“Join us for Mingle Monday on February 26th at HopCat in Royal Oak starting at 6pm. Come meet other local professionals, learn more about the committee and brainstorm ways to make this year’s YP Committee even better. For more information about the YP Committee and to RSVP contact Kiel Porter at kporter@crohnscolitisfoundation.org or 248-737-0900 ext.4.”

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Camp Oasis Reunion at the Outdoor Adventure Center Detroit

Pizza and interactive exhibits make this event a must-attend. Free to past campers and only $5 for additional family members, this reunion gives you the chance to reconnect or if you’re new, the chance to get to know your new crew.

Third Annual Patient-2-Patient Education Project

This exciting event on March 21 is a FREE educational event for folks with various forms of IBD and their families.

“We have an exciting panel of guest speakers that will be pairing with expert IBD physicians, nutritionists, psychologists, and other healthcare professionals to discuss everyday IBD issues.”

You can even request the topics you want the panel to discuss beforehand. Get the rest of the details and RSVP through the Facebook page.

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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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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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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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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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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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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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September raises awareness for different cancers

Thyroid, prostate, blood, ovarian and childhood cancers are in the spotlight for awareness this month.

September raises awareness for several types of cancer.

The month of September can be a difficult one for many people. As the memory of September 11, 2001 lives on, this month has found a silver lining: Several initiatives to raise awareness for cancer.

As we mentioned last year, September is the month to focus on childhood, thyroid, ovarian, blood and prostate cancers, and what we can do to help.

Since detection, prevention and awareness is the name of our game, we thought we’d give you the run down on each initiative’s plans for this year.

Childhood Cancer

Almost 16,000 people under the age of 21 are diagnosed with cancer each year in the U.S. If you’d like to get involved, you can donate, arrange a corporate event, even have a pajama party in your community.

Find out more about how to help.

Thyroid Cancer

ThyCa tells us that just a simple action can help raise awareness of Thyroid Cancer, even adding an awareness mention in the signature of your email. They only ask one question: Have you had your neck checked?

Learn how you can get involved.

Ovarian Cancer

Approximately 22,000 women a year are diagnosed with ovarian cancer. But, when detected early, the five-year survival rate is staggering (in a good way!). Look for their ads, billboards and information through their YouTube channel

Raise awareness for ovarian cancer.

Blood Cancers

The Leukemia and Lymphoma Society does so much research to advance science for detection, prevention and treatment of blood cancers. Their goal this year is to raise $300,000 for the campaign.

Support blood cancer research.

Prostate Cancer

The second leading cause of cancer death in men is on the chopping block. With 29,000 men diagnosed every year, we can do more to get involved. They offer golf programs, home run challenges, plenty of ideas for fundraisers, and simpler forms of support.

See how you can help prevent prostate cancer.

No matter what cause is near to your heart, remember that prevention and early detection are the absolute best way to fight cancer.

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Talk it out: Colon cancer conversations you should have

Colorecatal_Cancer_Awareness_Month_Scrolly_MarchTalking about cancer is never easy. Especially if you come from a family who keeps their medical struggles private. But it’s so important to have conversations with relatives about the issues they face. You can learn a lot about the risks you might face simply by knowing what your genes are predisposed to.

“First-degree relatives – parents, siblings and children – of patients with colorectal cancer or polyps have a two- to three-fold increased risk of developing polyps and colon or rectal cancer,” says Craig Reickert, M.D., in Breaking taboo: Making colon cancer awareness a family affair.

It’s especially important to educate yourself about your family history, because oftentimes, colon cancer comes with no symptoms.

“We’re finding colorectal cancer in younger people under 40,” says Dr. Anezi Bakken, M.D. M.S. at Troy Gastroenterology. “And there are usually no symptoms,” Dr. Bakken adds.

By far the best way to screen for colon cancer is a colonoscopy. But, if you’re still facing resistance from your family about discussing their personal health, Dr. Reickert suggests putting it this way:

You change the oil in your car so you don’t have to replace the entire motor. Colonoscopy is just like that oil change; it’s preventative maintenance to extend your life and avoid invasive treatments down the line, including surgery, chemotherapy and radiation therapy.

The bottom line is that screening is the only way you can get out ahead of colon cancer to have a chance of getting it under control. Even though it’s not curable, it’s definitely controllable if found early enough and treated properly.

And, after talking to your family, it’s even more important to get screened – and screened early – if they’ve had any issues with colon cancer, Crohn’s Disease or Ulcerative Colitis.

Dr. M. Emin Donat, M.D. F.R.C.P.C. at Troy Gastroenterology, puts it best: “A colonoscopy is easy, painless and can save your life.”

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