Category Archives: Ostomies

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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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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World Ostomy Day 2015

Ostomies are surrounded by stigma, but hundreds of thousands of Americans have one.

Ostomies are often stigmatized, but they’ve made life better for hundreds of thousands of Americans.

Ostomies are medically created openings to the body to help folks deal with different digestive issues. People with Inflammatory Bowel Disease, Crohn’s Disease, Ulcerative Colitis and some cancers can benefit from an ostomy.

October 2 marks World Ostomy Day for 2015. This is an awareness campaign that’s celebrated every three years to try to reduce the stigma surrounding ostomies. There are a few different types. Colostomy, Ileostomy, Urustomy and Stoma treat bladder and intestinal issues.

The Huffington Post reports that around 750,000 people in the U.S. live with ostomies. Their recent article, “8 Myths About Ostomies Debunked,” takes a look at some of the assumptions people make and how they can be harmful.

The article points out how an ostomy isn’t the end of the world. And in fact, it can be a ticket to freedom for folks struggling with digestive illnesses.

Stephanie, a Crohn’s disease patient who had ostomy surgery in 2012, said: “Having an ostomy has given me back my life and I am able to do all of things that I’ve always wanted to do, but had been held back before by Crohn’s disease.”

For more information, have a look at the United Ostomy Assocations of America. They offer resources like support groups, discussion boards and events for folks with ostomies and their families.

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