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: The Great Bowel Movement, Pig Whipworm Parasites & More
Spreading Crohn’s and Colitis Awareness with Great Bowel Movement
What happens when you get IBD advocates together in a swank hotel bathroom? They make a video, of course. In just five days, the video featuring some of the ladies behind “A Girl With Guts,” “Blood, Poop and Tears,” and “Full Frontal Ostomy” and “The Great Bowel Movement (GBM)” has had over 500 views and is still going strong.
After speaking with Megan, one of the founders of GBM, she had this to say, “We all have the power to spread IBD awareness, by becoming role models for our diseases. The Great Bowel Movement was created to empower patients to educate those around them by sparking conversations about IBD, and by showing the world that we live successful lives despite IBD, through awareness tools, educational tips, and the popular "Ask Me" t-shirts. This video shows both the need and passion for awareness through storytelling by outlaying some common IBD myths, the importance of gaining confidence and finding your voice, and the birth and positive effects of the organization.”
CCFA Partners Launches Giving Individuals With Crohn’s and Colitis a Place to Connect Online
The folks over at the Crohn’s & Colitis Foundation (CCFA) have been hard at work creating a program for the IBD community — CCFA Partners. One of CCFA’s doctors, Dr. James Lewis, describes this ground-breaking program as, “an incredible community resource. It gives our patients a way to become part of the search for a cure and focuses on the outcomes that are important to patients. There is huge potential for CCFA Partners to inform us about what factors influence the everyday lives of patients with IBD — and who knows more about the living with IBD than the patients who deal with the struggles of IBD every day? Up until now, we have not had a feasible method to tap into what patients know. CCFA Partners can serve as the portal to share these experiences in a scientifically rigorous manner." Amazing, right?
Another added benefit of CCFA Partners is that since it’s an Internet-based patient registry, researchers may be able to create independent online studies to reach a larger, more diverse group of patients to get their information from. Parents of pediatric IBD patients are not excluded either; they can look forward to a pediatric survey launching this Fall. For those concerned about confidentiality, there’s no need to be. Access to your information will be restricted to the IBD research community only, as explained by the CCFA on their website.
At the moment, CCFA Partners plans to enroll around 10,000 patients. There will be a 20-30 minute survey to complete upon your initial registration with the site; added bonus: you don’t have to do it one sitting. To learn more about how CCFA Partners for patients or as a researcher, go to https://cgibd.med.unc.edu/ccfapartners/.
Happy First Birthday to 20-Year-Old Patrick Dement’s Immune System
Crohn’s disease since 2001, Patrick Dement had tried everything from
conventional to alternative treatments to dietary modification, and eventually
his options ran out. In 2011, Patrick traveled to see the specialists at
Chicago’s Division of Immunotherapy at Northwestern University in order to be
evaluated for a Hematopoietic Stem Cell Transplant. Although most people expect
stem cell transplants are used for blood disorders and cancer, they are
becoming a powerful tool to help combat blood and immune system diseases as
Patrick also explains the risk/benefit scenario of stem cell transplants for Crohn’s disease patients, “For the autologous transplants for Crohn's patients, over 80% go into remission initially without medication, and down to 20% by 5 years. For every patient who relapsed, their Crohn's has been much milder and much more responsive to treatments and successfully returned to remission on medication, including on medications that had previously stopped working for them.” Patrick’s blog has chronicled his entire journey from first meeting his doctors to the one year anniversary, August 26, 2012, of his stem cell transplant. So, stop on by Patrick’s Blog to learn more about his life-saving treatment, how he’s done over the past year, and while you’re at it wish his immune system a happy birthday!
For those interested in receiving an evaluation or to get more information from the Division of Immunotherapy at Northwestern University, you can call 312-908-0059 or visit http://www.stemcell-immunotherapy.com/patients.html.
Calgary Teen With Crohn’s Disease Is Brought to Tears by TSA Agents Who Thought Her Ostomy Bag Was Full of Money
One of the biggest challenges people with chronic illnesses face is receiving understanding and compassion from those who are not affected by a chronic illness. More often than not that lack of compassion leads to frustration and sometimes tears. Reports have surfaced about a young woman with Crohn’s disease and an ostomy, and the frustrating encounter with Canadian Air Transportation Security Administration (CATSA) that left her in tears. “The airport screening staff immediately pointed to a bag on her hip, claiming it was full of money,” and that wasn’t the only allegation the 18-year-old lobbed at the Calgary security agents. “One security member allegedly asked the girl to take the bag off so it could be inspected, she began to cry,” reported Canada’s Metro News.
While a NY Baker Uses Worms to Treat Wheat Sensitivity, One Researcher Sheds Light on How This Could Lead to a Cure for IBD
When baker and founder of New York’s Sullivan Street Bakery, Jim Lahey, purposefully set out to infect his self with intestinal parasites to help combat a wheat allergy that developed from continual exposure to flour dust, some may have thought he was crazy. But Lahey reasoned, “These worms are part of human evolution.” And Joel Weinstock, physician and gastroenterology researcher at Tufts University might just agree. Much of Weinstock’s research for the past decade has involved the relationship between parasites, the lack thereof, and a possible relationship that links the two to Inflammatory Bowel Diseases like Crohn’s and Colitis. “There’s certain exposures that may be healthy for us rather than harmful,” says Weinstock. Check out the article from Fast Company, and see what the researcher has to say about his work with parasites and developing an immunization technique to combat IBD.
Humira Receives Approval to Treat Crohn’s Disease in Europe
The executive body for the European Union (EU) known as the European Commission (EC) has approved Humira (Adalimumab) as a drug to treat moderate Crohn’s disease in adult patients who have displayed signs that conventional treatments do not work to get them into or keep them in remission. As Genetic Engineering & Biotechnology News points out, “Humira is already marketed in Europe, the U.S., and in other markets for the treatment of other inflammatory diseases.” Approval by the EC was based on data from phase II and III of a study of patients with moderate-to-severe active Crohn’s disease using Humira to induce remission and/or maintain it. Humira is manufactured by Abbott Laboratories. Alternately, Humira just received approval by the FDA to treat IBD patients with ulcerative colitis in the U.S. who do not respond to conventional treatment. Treatment for Crohn’s disease was approved already.
Retired NFL Player, Matt Light, Opens Up About His Battle With Crohn’s
Matt Light now retired from the New England Patriots is stepping up his involvement with his alma mater’s football team, as well as stepping off the field and into the limelight. The Purdue University graduate had a successful collegiate and professional career in the NFL, but one thing many may not know about Light is that he has Crohn’s disease; he played with the disease his entire collegiate and professional career. Light even endured a painful flair that led to surgery, a month-long hospitalization and his weight dropping from 315 pounds to 260, but not even that setback could hold him back. This Fall, not only can you find Light cheering on his favorite college team, you’ll be able to find him reporting for ESPN and NFL Live too.
Another Story About Parasitic Worms to Treat Crohn’s Disease, Researchers Might Be on to Something …
A clinical trial involving pig whipworm parasite (Trichuris suis/T. suis) eggs is getting underway at Tufts University in Massachusetts. Researchers are trying to prove whether the parasite can control the trigger that causes the autoimmune system to attack the digestive track, which is responsible for Crohn’s disease. If successful, researchers will be able to control the disease in an organic fashion without the harmful side effects caused by many of today’s leading medications used to treat Crohn’s disease. Dr. Weinstock is mentioned again, as this will be his next study based on what is known as the “hygiene hypothesis.” For anyone wondering why T. suis, is a parasite that is not harmful to pigs and dies off inside of a human in about 2 weeks.
$3.5 Mill Payment Sets the Ball in Motion for Partnership Between Two Major Pharmaceutical Companies to Develop New Crohn’s Therapy
Alder Biopharmaceuticals Inc. and Bristol-Myers Squibb have partnered up to develop a drug they are referring to as ALD518/BMS-945429 — an investigational antibody therapy drug that will block interleukin-6 (IL-6) in Crohn’s disease. As described by News-Medical.net, “IL-6 is an interleukin that acts as both a pro-inflammatory and anti-inflammatory cytokine. It is secreted by T cells and macrophages to stimulate immune response to trauma, especially burns or other tissue damage leading to inflammation.” This will be Phase 2 of the clinical trial. And both companies believe there is potential for the drug to treat far more than Crohn’s disease.
Researchers Study Crohn’s Disease Treatments to Keep Patients With Diverticulitis Out of the OR
Researchers in Italy are using their better understanding of the pathophysiology of the inflammation involved with diverticular disease leading to surgery. The theory they are testing is that treatment to keep inflammation under control with the treatments such as the immune modulating drug, Melsalamine (a drug used to treat Crohn’s disease of the large intestine), will keep patients out of the operating room. Other lines of treatment they are looking into are improved antibiotics and probiotic treatments. Researchers are trying to determine whether life-long cycling of Melsalamine will be more cost-effective than antibiotic treatments per episode.
11-Year-Old Girl Raises $15,000 for Crohn’s Disease
The Northwest Herald shares a story about two Illinois girls who go above and beyond to help raise money for charities that are near and dear to their heart. In the January through June months, you can expect to find kids yearning for school to end and the summer to begin. That’s not the case for 11-year-old Jade Woo. Instead, she spends those months rallying her friends, family members, and local businesses to donate to her walking team for the Crohn’s & Colitis Foundation of America’s (CCFA) Take Steps charity walk. You can find the charity walk taking place across the country, all year long. Battling Crohn’s disease since she was a baby, Jade has put in a tremendous amount of time and effort to help find a cure for the disease.
The KRF Foundation Gives $1,000,000 in Grants for IBD Research Innovations
The Kenneth Rainin Foundation (KRF) recently announced the 10 winners to receive a $100,000 grant intended for IBD research innovations. The KRF splits the IBD awards into two segments The Innovator Awards Program for IBD Research and the Breakthrough Awards Program for IBD Research (past winners can apply to receive more funding after they’ve provided proof and progress validating their innovative hypothesis.
Crohn’s Disease Parasite Study May Get to the Root Cause of Autism
It seems researchers have been busy with parasites lately, and it’s paying off for more than Crohn’s disease. Researchers are beginning to hit on the link between the immune system and Autism due to a lack of certain factors in the body, these findings could hold the key to exact reason Autism sets in during early childhood. The New York Times reports research involving pig whipworm parasite, which is being studied to treat and possibly cure Crohn’s disease and ulcerative colitis, is at the heart of a ground-breaking study to help breach the fog of autism and see how it starts. Researchers are leaning toward an immune disorder being at the heart Autism’s cause.
It’s About Time to Clean That Cell Phone
While many people with IBD spend lots of time in the bathroom, washing their hands is a natural step to take before walking out the door. But what about that cell phone? According to the Today Show’s health blog, MyHealthNewsDaily, “cellphones carry 10 times more bacteria than most toilet seats.” Now the germs you put on your phone aren’t necessarily that bad, but when phones are shared between people there are additional germs added to the device. And for individuals with Crohn’s, colitis, or other autoimmune diseases, this could be a big deal. So before you leave the house, why not give your mobile device a quick swipe with an antibacterial wipe (spraying will cause liquid damage; low-moisture antibacterial wipes are fine).
Does Your City’s Public Restrooms Have Their Own Facebook? Portland’s Does!
We mentioned the Portland Loo in the Restroom Victory for Crohn’s Disease article published in early August, but since then the Portland Loo’s popularity has started to skyrocket and here’s why. The Portland Loo is kind on the environment since it is solar powered and can go anywhere; the 6-by-10 foot cabin is the perfect fit for a park or a sidewalk in the busy city. And now Portland officials are contemplating bringing the Portland Loo to a place near you. Check it out …
Test Drive the TOTO Washlet at a Restaurant Near You
Gizmodo just made anyone who is the slightest bit obsessed with technology, toilets, or technology-laden toilets very happy. The gadget website recently reported that the world’s coolest toilet builder, TOTO, has compiled a list of restaurants sporting their TOTO Washlet. Head on over to TOTO’s website to check out the list that includes locations ranging across the United States from New York City to Dallas all the way to Honolulu.