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This Week in Crohn’s: September 21, 2012
UCLA Puts the iPAD into IBD. If This Headline Doesn’t Make Sense to You, Check Out the Article Summary Below.
Not many IBD patients get to say that they have their medical team on call. But a select group of patients participating in a pilot program at the UCLA Center for Inflammatory Bowel Diseases — well, get bragging rights — and an iPad! Intrigued?
The pilot program completed a successful run, and now UCLA is enrolling about 250 more patients into the program. “We want patients to feel that carrying the iPad is like having a doctor in your back pocket,” said Dr. Daniel Hommes, professor of medicine at UCLA and director of the Center for Inflammatory Bowel Diseases.
This doesn’t mean patients are getting a free-ride on an iPad, nor does it mean they get to call up a doctor on a whim. Rather, they have to answer specific questions and enter information into the application programmed into an App on the iPad and this allows the medical team responsible for the patient to react appropriately. The ideal goal for the App is that doctors can prescribe on the fly, order an immediate appointment, remotely counsel a patient if they are away, and so much more (think amazing educational tool for a newly diagnosed patient). The App and program has amazing promise for the entire community, consider this a must read article!
Experiencing Side Effects to a Medication That Are Not Listed on Your Prescription? You Should Report Them to the FDA If They Are In Fact From the Medication. Here’s How.
For many who suffer from Crohn’s disease, as well as the gaggle of other
chronic conditions that afflict people with IBD —
new and not so known medications are par for the course. And that also means
experiencing side effects that may not be listed as common on the drug
formulary that your receive from your pharmacy. So what do you do when you
and/or your medical practitioner are sure that you’ve experienced an unlisted
“You or your doctor may send a report to the Food and Drug Administration’s (FDA) MedWatch Adverse Event Reporting program online [at http://www.fda.gov/Safety/MedWatch] or by phone [1-800-332-1088].”
The Miami Herald Gives a Glimpse Into the Lives of a Few People With IBD and Adds a Glimmer on the Side With the Hope With a New Infusion Trial
Take a look into the lives of a young and older patient —both with IBD. The Miami Herald tells the story through the eyes of the patients, and medical experts from University of Miami (UM), Mount Sinai Hospital and the Cleveland Clinic working on stopping the disease.
Also, interesting to note is UM’s involvement in an infusion trial, and the Cleveland Clinic’s (Weston, FL location) involvement in several clinical trials, one of which is a surgical procedure called LIFT — a procedure that’s been proven effective with perennial fistulas but not yet tested for treatment in Crohn’s.
IBD Patients, UCLA and a Pilot Program With an iPad… Yep, They’ve Made an App for That, Too!
Here is UCLA’s explanation of their iPad program. You might be wondering, “Why is she posting this a second, time, clearly it’s mentioned in the post above?” I ask, why not? And I also offer this, “Who doesn’t want to read about a 74-year old man learning to use an iPad to help manage his IBD?” I know I do! And who doesn’t want to watch the program in action? You can watch it here, at http://www.youtube.com/watch?v=da7dRLSQPEI&feature=youtu.be.
Research Finds Link Between Stem Cells and Treatment for IBD
The current issue of the medical journal Hepatology has an interesting article involving stem cells found in cord blood and how they can impact IBD Treatment. “A special population of stem cells found in the cord blood has the innate ability to migrate to the intestine and contribute to the cell population there,” as described by Science Daily. Back in 1997, researchers found that a certain population of stem cells known as endothelial colony-forming cells could help build blood vessels in adults, not just embryos.
What does this mean for IBD patients? A lot. For patients who are dealing with the potential of facing a resection, giving them a way to help increase healthy blood flow and repair damaged tissue could lead to staving off the much dreaded surgery.
Good News for IBD Patients — New Colonoscopy Techniques and Tools Are Allowing Doctors to Ink Your Colon or Look At It in Hi-Def
Early detection and prevention of colon cancer are two common things that rest in the back of an IBD patient’s mind. Luckily new colonoscopy techniques are coming about that are making even the sneakiest of abnormal cells come out for the 15 minutes in front of the camera.
One technique is called Chromoendoscopy, which might sound like a mouthful. This nifty new technique involving a high-contrast dye inks the colon and highlights often hard-to-spot growths. It’s currently in use at the Division of Gastroenterology at the University of Miami. On the other side of town, is the Memorial Healthcare group who are utilizing a high-resolution approach.
Synergy Pharmaceuticals Enters Application for Clinical Evaluation for Potential New Anti-Inflammatory IBD Treatment (Oral Pill Form)
Currently known as SP-333, this second-generation uanylate cyclase-C, or GC-C, agonist has the potential to treat both Crohn’s disease and ulcerative colitis. Researchers backing the drug believe a deficiency of uroguanylin, an intestinal hormone, could be a primary cause for polyps and potentially IBD. SP-333 works as an anti-inflammatory medication and works at low doses. If it proves to work well in human trials, this will be great news for Crohn’s and UC patients who are used to more toxic treatments.
If Recent Reports on Fish Oil and Heightened Cancer Risk Have You Worried, Dr. Julie Chen Has Some Calming Information for You
Most seasoned inflammatory disease patients — Rheumatoid, Crohn’s disease, ulcerative colitis, lupus and more — have been told by at least one if not many medical professionals responsible for their care to supplement their diet with fish oil. And now a recently released study has left many inflammatory disease patients up in arms as to whether they should continue their fish oil supplementation. In this article, Dr. Chen helps break down some of the puzzling information from the study and gives her professional opinion on whether patients should continue their fish oil regimen.
11 Best Crohn’s Disease Blogs of 2012
Although it was all the way back in March when we posted our slide show featuring the 11 Best Crohn’s Disease Blogs of 2012, it’s worth giving a another shout out to those bloggers for doing what they do oh so well.
In the Life of a Crohnie Blog, Follow One Woman’s Battle Through Illness and Possible Redemption Through a Stem Cell Transplant
Life with Crohn’s can never be considered dull. And for the blogger behind Life of a Crohnie, her life is anything but. Visitors to this blog will not only share in the blogger’s positive outlook through what most would consider bleak circumstances, but they will also get to experience the blogger’s journey toward getting a new immune system to defeat her ever-present Crohn’s disease. Experience the bad, the ugly and the GOOD (Who needs it to be in order? Let’s end the analogy on a positive note.) The journey starts on October 2011.
Need Some Inspiration to Pull You Out of the Crohn’s Blues — Check Out This Blog
Ali a blogger, avid runner, and dancer, has lived with Crohn’s disease for most of her life and she blogs about everything in it. Her Blog at times may make you feel a little voyeuristic; it lets you take a peak or five into her life, but its packed full of happy, honest, good moments, sick moments, and more. In other words, it’s the life of someone living with Crohn’s but doing a lot of living. So if you’re in need of a little pep in your step, or encouragement to find your inner-runner even though you’ve got Crohn’s, or maybe you’re just nosy (this is a judgment-free zone!)… This is the Blog to check out.
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@example.com.
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: firstname.lastname@example.org