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This Week in Crohn’s: October 26, 2012
This week’s Crohn’s update has some great stories ranging from Pearl Jam’s Mike McCreedy fighting for Affordable Healthcare, to an inspirational teen, to some promising tests, studies and meds!
Angel Pagan Struggled With Colitis During His 2011 Season With the Mets, But Now He’s Just 2 Games Away From Winning the World Series With His New Team
This article came my way via the CCFA’s Facebook page. The NY Daily News sheds some light on what many New Yorkers and Mets fans didn’t know about the great but “moody” player. He was struggling. The article also depicts part of what Pagan went through as far as having to deal with untimely colitis attacks in the outfield, the shame (he refused to bat the following inning), and the comments made by upper management (you are young, making tons of money, and you’re a good ball player cheer up).
More importantly this article should give hope to parents of small children or teens with IBD who want to pursue sports. It can be done, but a good headspace is needed. Pagan found his good headspace with the Giants and they are just a couple games out from winning the World Series. Pretty great, right?
Given Imaging, Ltd. Makes a Major Announcement Regarding the Role Capsule Endoscopy Plays in Capturing Images of Hard-to-Find Lesions in the Small Bowel
Given Technologies, Ltd. recently released data from two capsule
endoscopy studies at the European Gastroenterology Week in Amsterdam. The data
released further reinforces the validity of using capsule
endoscopy for Crohn’s patients whose doctors are having a hard time
locating or defining the severity of lesions, fissures, fistulas, or mucosal
hemorrhages. The capsule endoscopy proved to show significant accuracy in
showing lesions over that of the Magnetic Resonance Enterography (MRE; also
known as the MRI) procedure study which yielded less accurate results and in
one patient a false positive for lymphoma. False diagnoses are not helpful to a
patient’s mental wellbeing, let alone their treatment.
The reason the capsule endoscopy hasn’t been more largely embraced by GI’s for their Crohn’s patients is that they are hesitant due to narrowing and possible capsule retention. Please note, there are ways around finding out if narrowing will be a problem; there is a slow-dissolving pill one can swallow and should take up to 3 days to pass. If it does not, it can be located via x-ray and doctors will determine a better way of filming the bowels from there. Now in its second generation PillCam SB 2 “contains an imaging device and light source and transmits images at a rate of two images per second generating more than 50,000 pictures during the course of the procedure,” reports Equities.com. The tiny device that transmits images via Bluetooth technology measures in at 11 mm x 26 mm and weighs less than four grams.
Phase IIa Clinical Trials for Crohn’s Drug Laquinimod Shows Great Promise for Treating Moderate to Severe Crohn’s Disease and Other Inflammatory Diseases
Globes reports, Teva Pharmaceutical Industries and Active Biotech are reporting success in their Phase IIa clinical trial of a new Crohn’s disease med. “The study found that treatment with orally administered Laquinimod resulted in a robust, early and consistent effect on remission and response rates in patients, compared with the placebo.” You can find the full clinical abstract, here.
The other thing most patients care about most when considering a new drug is how was it tolerated by patients in the study in comparison to the placebo. And the answer is, exceptionally well. Some patients showed signs of remission as early as week one of the study, which lasted 8 weeks and had four more weeks of follow-ups with doctors. Studies are also underway to review how the drug works for treating other immune regulated inflammatory diseases like MS and Lupus.
Recent Study Presented in Las Vegas Symposium Shows IBD Drug Melsalamine Can Treat Certain Cases of IBS Affecting the Colon
Melsalamine granules found in drugs like Pentasa are giving relief to patients with IBS who have not been diagnosed with Crohn’s or UC. The medication has proven extremely helpful for patients with IBS presenting diarrhea symptoms mainly. Perhaps this could explain why Pentasa works for some Crohn’s patients, and not in others?
Prometheus Laboratories Releases Data for Promising New Lab to Help Identify Patient Resistance for Remicade (Infliximab) Treatments
Prometheus Laboratories released its latest study for its new Anser IFX test at the American College of Gastroenterology 2012 Scientific Meeting held this past week in Las Vegas. The Anser IFX test is a liquid-state assay, where as the current one being used by most labs and doctors ELISA is a solid-state test, and Anser IFX is showing more sensitivity and accuracy in its findings for patients who are building up a resistance/antibodies to their Remicade treatments.
October 30 Is Right Around the Corner and That Means the Bathroom Access Law in Massachusetts Is Too!
Wicked Local Weymouth a division of Weymouth News, just published the article reminding us that the law approved this summer, known as the Bathroom Access Act, is almost here. This is great news for Massachusetts residents who for years have hindered their errand schedule due to fear of not getting to a bathroom in time. The Act will require a doctor’s note or some form of proof like a card from an IBD and means that bathrooms once only labeled as employee-only, will now be open to the public if they have a health need such as IBD or something else that would require the use of a restroom immediately. The only thing preventing the use of these now un-restricted facilities is if it would pose a public health risk or if other bathrooms are easily accessible.
This past summer we wrote about the passing of Massachusetts’ Bathroom Access Act as well as Ally’s Law, you should definitely check it out.
Pearl Jam’s Mike McCreedy Is Speaking Out for Affordable Health Care and Debuts Video “Life Is a Pre-existing Condition”
In case you haven’t heard, Mike McCreedy, of Pearl Jam fame, has Crohn’s disease. Diagnosed in 1986, McCreedy has dealt with the pressures that Crohn’s places on the human body especially one that performs in 2-3 hour-long sets, sometimes in the extremely hot climates, as well as traveling through many countries that may not be as accommodating for someone with IBD.
This past week McCreedy spoke out about the Affordable Care Act and its
importance for anyone with a pre-existing condition saying, “Before the
Affordable Care Act, people with conditions like mine could be denied coverage.
I know. I was denied twice, even being a member of a famous rock band.”
McCreedy is speaking out since voting is right around the corner and Romney has
stated several times he plans to repeal the Act.
McCreedy took one step more than just speaking out to news sources, he along with Jesse Dylan (son of Bob Dylan) created a video titled, “Life Is a Pre-existing Condition.”
The Good Ol’ Debate, To Get the Flu Shot or Not… the Debate Wages On. And This Article Says, “Yes, Get It!
For most people with Crohn’s disease, having to be on some type of immunomodulator medication is a normal part of treatment. It also means that your immune system is knocked down a few notches from the average person’s, which leaves many questioning whether they should get vaccines or not. This article points to yes for the reasons mentioned above — lowered immune system.
One of the doctors interviewed also spoke about patients wanting to halt treatment when they are feeling well. His recommendation is that if you stop, research shows that a flare can come back within a year. He also recommends getting the pneumonia and pertussis vaccines, as well as influenza.
Something else important to point out, make sure you are receiving a dead virus and not live. So go ahead and schedule an appointment with your health care provider to discuss which vaccines are best for you and may need to be brought up to date like tetanus.
Three Fascinating Studies Accidentally Find Links Between Crohn’s Disease, Race, and How Each Is Affected
For years, researchers have spouted facts regarding the link between those of Jewish descent being more likely to have Crohn’s disease, followed by Caucasians and then other races. However, three separate studies have stumbled upon some interesting facts, some of which were already known and some that are new — African American Crohn’s patients were more likely to have Crohn’s symptoms outside of the intestines, such as joint pain and skin issues.
You can check out more of the fascinating data, here.
Crohn’s Diagnosis Hasn’t Slowed This Teen Down, It Helped Him
West Virginia teen, Drake Seccurro, started to suffer from a debilitating illness in 2010. Doctors tried to nail down a diagnosis, but to no avail he was not lactose intolerant, did not have IBS, and did not have Celiac disease. Finally after a colonoscopy was performed, Seccurro’s doctors made the determination of Crohn’s. They immediately placed him on a high-dose of steroids and plotted a treatment for the then high school sophomore. The track team star was side-lined for a bit as steroids softened his bones, but soon after going under IV infusion treatments he was able to start running again. Doctors have studied the teen’s progress since coming off the steroids and he’s impressed them.
This is just another great example for parents to share with their child; Crohn’s does not have to slow you down!
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]