Category Archives: Caregivers

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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Find support with these upcoming IBD events

No automatic alt text available.Finding support with folks going through the same things as you can sometimes be what gets you through a tough day. Here we have a list of upcoming events for those fighters out there dealing with different forms of IBD, from Crohn’s to Ulcerative Colitis.

Today! Ostomy Awareness Day

The Crohn’s and Colitis Foundation is hosting a live chat via Facebook to discuss life with an ostomy and how other fighters are learning to thrive. Tune in to ask questions, or just have a listen to fellow ostomy-havers. Stephanie from The Stolen Colon will be there to host.

Online Support Group for Patients and Caregivers

The Crohn’s and Colitis Foundation of America is now offering online support groups for patients with various forms of IBD, and also with those who are caregivers. A four-week series of online chats, you can connect with other IBD-ers every Monday evening. While you’re on the site, look around at the Community Forum and the FAQ page, for topics on everything from diet and nutrition to exercise and travel.

Rock the Night to Cure Crohn’s and Colitis

Perhaps the fanciest of the upcoming events, this fundraiser is taking over the Big Apple in search of funds to move research further. Drinks, music, and a silent auction are just a few of the features this event will serve up. Items up for auction include suite tickets to Yankees games or the opera, yoga classes, jewelry, and even a guitar signed by Maroon 5.

Online Ostomy Poll

The Michigan Chapter of the Crohn’s and Colitis Foundation is looking for folks with Crohn’s Disease and Ulcerative Colitis to grow their network and help fighters get more and better resources. Take their one-question poll to start learning more.

More info:

“About 23 to 45 percent of people with ulcerative colitis and up to 75 percent of people with Crohn’s disease will eventually require surgery to treat their disease. There are many types of surgery that may be performed, including surgery to create an ostomy. If you are currently living with, or have lived with before, an ostomy, please participate in our poll!”

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Crohn’s and Colitis Awareness 2016

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#IBDVisible 2016

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

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

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

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

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

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RESPITE: November is National Family Caregivers Month

November is national family caregivers month.

The theme for family caregivers month is RESPITE, encouraging caregivers to take care of themselves.

Caregivers fill many different roles in a family. It could be a full-time nurse who stays with an elderly parent or sick child. But a caregiver can also be someone who grocery shops for a neighbor or makes dinner for a sibling twice a week. Caregiving is one of the most difficult jobs that you can take on.

For this year’s National Family Caregivers Month, the theme is “Respite: Care for Caregivers.” Respite is a chance to getaway from a demanding or difficult situation. This campaign is making a push to encourage caregivers to care for themselves and take some time away. As with most jobs, time off is not just invigorating but necessary for your well being.

The Caregiver Action Network has created an acronym for RESPITE: Rest and Relaxation, Energize, Sleep, Programs, Imagination, Take five and Exhale. Their site has provided resources to help with each of the principles,

“Respite protects your own health, strengthens family relationships, prevents burn-out and allows your loves ones to stay at home up to three times longer,” says the campaign.  We couldn’t agree more.

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