Welcome to This Week in Crohn’s, a weekly roundup of the best blog posts, studies, and news about Crohn’s disease.See all posts »
This Week in Crohn’s: October 12, 2012
This week’s Crohn’s update includes a studies about IBD being genetically linked and doctors not informing patients about what they need to know, and a dose of cute with Elijah explaining his ostomy.
Study Finds Doctors Are Doing 3 Things Poorly With IBD Patients
—This is a Must Read
According to a study written up in Gastroendonews.com, researchers have found that physicians are lacking in the communication department big time. The top three culprits are: not screening their IBD patients for opportunistic infections like Hepatitis or TB, warning male (yes male) patients about fertility risks due to medication-side effects, and the risks of live vaccines.
This article is informative for both male and female IBD patients. It basically brings it all back to the fact that as IBD patients, you have to be your best advocate and be on top of your questions with your doctors.
The Big Question Is Getting More Attention: Could IBD be Genetically Linked?
This short video produced by the BBC gives a review of a British study on IBD and its relationship to genetics. Want to know more? Watch the video!
Marijuana Pills Found to Relieve Symptoms for Chronic Inflammation Disease Like MS, IBD and More
It’s widely known and accepted in many circles that marijuana has medicinal properties for those suffering from inflammatory conditions. Some states in the U.S. are starting to make it legal for medicinal purposes, but the stigma still remains. In this article, researchers from the UK’s University of Plymouth delve into the effects of marijuana extract pills and how they relieve stiffness, mobility and quality of life in patients with MS. This was a small study, but it may pave the way for more out-of-the-box treatments for all patients living with chronic disease.
Olympian Carrie Johnson Clears the Air She's Not Suffering From
—She's Living With Crohn's Disease
Ever have one of those days where you are in need of having your mind blown or are looking for a new perspective. Meet Olympian, Carrie Johnson who is a sprint kayaker, which is probably one of the hardest sports around (this video clip from CNN proves it).
Anyway, Johnson wrote a personal essay for Girls-With-Guts.org and it’s pretty inspiring. In it she writes about her Ah ha! moment, if you will, “At one point, I received a Facebook message from another UCSD student asking me about Crohn’s Disease and in my response I asked him if he was living with Crohn’s Disease also. When he replied back, he thanked me for using the phrase ‘living with” instead of “suffering from” Crohn’s.” Check it out.
Combination Treatment vs Monotherapy in CD Patients, the Debate Continues
The article should be especially of interest for patients who are about to go on an immunosuppressive drug or are getting ready to go on a biologic. Also, this is the kind of article you should share with your doctor when you’re getting ready to make a decision on your next step of treatment.
Many patients with Crohn’s disease have been introduced to the treasure trove of medications that they may face throughout their lifetime. Azathioprine (generic Imuran) and infliximab are included in that trove. Monotherapy is the use of one and only one therapy used to help a patient achieve remission and, combination treatment is the use of an immunomodulator with an anti-tumor necrosis factor (anti-TNF) medication. This article published in gastroendonews.com looks at several studies conducted at the remission rates for patients who used combination therapy and Monotherapy, it also looks at if steroids were needed or not to maintain, and discusses the pros and cons of each form of therapy.
Study Gives New Patients to Drink Coffee After Bowel Surgery
Here are the details, according to a study originally appear in the British Journal of Surgery, and reposted by Nurse.com, patients recovering from bowel obstruction surgery of the colon and drank coffee instead of water post-op experienced a quicker awakening of their bowel (aka bowel movements). There were about 80 patients involved in the study and IBD patients were included amongst the participants. Check it out!
Couple in England Celebrate Golden Anniversary By Giving Back to Others
You may be wondering what this has to do with Crohn’s. Well, here goes. Eddie Austin, 70, discovered he had Crohn’s in 1980 (although he sufferance with it since 1970). Since then he’s had a total of three surgeries and quite the battle. His wife, Hilda, has undergone her own battle — the loss of two sisters from cancer and a mastectomy to prevent cancer the same cancer that took the lives of two of her sisters.
This article is a heart string tugger all the way, rather than accept gifts for their 50th wedding anniversary, the Austins are giving back. They raised £410 (about $659 USD) to be split amongst a Breast Cancer Research and Crohn’s disease charity.
Fort Wayne, Indiana, Takes Steps , Raises $20,000 and Talks About It
$20,000 was raised. Usually, grammar rules dictate that you do not start a sentence off with a number. But you saw that amount right? $20,000! After a 10 month campaign, the Indiana chapter of the Crohn’s Colitis Foundation of America (CCFA) held its Take Steps fundraising walk at Indian Trials Park. The emcee was a local newscaster, so of course there’s a YouTube video about the event.
P.S., If you are interested in fundraising for IBD, see the final post of the update for more information on how you can get involved.
Yogurt, Bananas, Rice, Oh My... Self-Reported Data Helps Researchers Figure Out the Helpful and Not-So Helpful Foods for IBD Patients
The CCFA made a press release about the medical paper “Dietary Patterns and Self-Reported Associations of Diet with Symptoms of Inflammatory Bowel Disease,” which is breaking the code on what the go-to foods should be for IBD patients.
One researcher was so pleased with this data that he said, “These findings could have immediate as well as long-term importance. Today, if a patient asks what food they can eat, their physician can state, 'These are the foods that were most commonly reported by patients to improve their symptoms,” said gastroenterologists James D. Lewis MD, MSCE.
On the good list of
foods: yogurt, bananas, and rice. The bad list, for obvious reasons,
was much longer. Research data came from CCFA partners, which is a
patient database where patients and doctors share information to help
further IBD research. To learn more about participating in the CCFA
Partners Patients Database, visit
Elijah Explains His New Ostomy
The title pretty much says it all. But what it doesn’t tell you is that this cute little boy’s enthusiasm over his new appliance is contagious. Elijah, a young boy, gets on cam in what looks to be a couple of days post-op to talk about his new ostomy and amazement that he had surgery and “didn’t know what happened because I was asleep.”
This is a great video for parents of young IBD patients who are facing surgery with the potential of an ostomy and/or are struggling with the notion of having one. By the end of the video, a smile across your face is guaranteed. Enjoy.
Looking for Ways to Raise Awareness for IBD, Help Raise Funds for a Cure, and Meet Others Who Go Through the Same Trials You Do? Get Involved!
Here is a list of events you can get involved with to help raise awareness, funds and endorphins:
Get Your Guts In Gear (GYGIG)
Each ride averages 70 miles a day and has 2 overnight camps. During the Ride, you will receive support from GYIG staff and an all-volunteer crew. You will also get to participate in an opening ceremony, as well as be provided with meals and route support, including fully stocked rest stops, sweep vehicles, and baggage transport between camps. In order to participate in the 2-day long ride, the requirements are an $85 registration fee and fundraising of at least $1,250. For more info you can call 1-718-875-2123 or e-mail the GYIG folks at [email protected].
Team Challenge is the CCFA’s endurance training and fundraising challenge. Participants can run or walk 13.1 miles or train for a triathlon or cycling event while helping to find a cure for Crohn’s disease and UC. Visit the http://www.ccteamchallenge.org/ page to determine which event you’d prefer to participate in and then go from there. If you aren’t sure about forming your own team, that’s okay they can help hook you up with one. Pretty cool right?
This is another CCFA event involving walks held all over the nation. One of the great things about this event is that is usually held in the same place at the same time, every year. This means that participants can fundraise all year long; up until the very day of the walk. The CCFA provides team captains and their fellow walkers with fundraising ideas and support. So if you want to go big on your fundraising efforts you will have the help of the CCFA to guide you. To learn more about the Take Steps Walk visit their FAQ page or fill out their Request More Information Page.
Have a favorite charity that we didn't mention? Send us your suggestions at: [email protected]