Last Sunday, I attended the 2016 Boston Patient & Family IBD Symposium, which was hosted by the Crohn’s & Colitis Foundation of America (CCFA). It was a half-day event (with breakfast!) for people living with IBD as well as their families.
The agenda included a number of interesting and educational talks from top doctors in the area, including “IBD Outside the Gut” (the disease and its associated drugs can affect many other parts of the body) as well as “IBD and the Microbiome,” which was super interesting.
We also heard from a patient and family panel, which was surprisingly emotional for me. My heart broke for the women as they told their stories and struggles. They were all too familiar, and I could relate to so much of what they said.
After that, we had the opportunity to chose two of four workshops to attend:
- Pediatric IBD: From Growth to 504 Plans
- Complementary Therapy in IBD
- Staying Fit with IBD
- Traveling with IBD
The event concluded with a keynote from Dr. Vijay Yajnik (my doctor!!) about “What’s New in IBD,” which, of course, was my favorite part of the entire symposium. I have so much respect for my doctor (and have professed my love for him a number of times on CNC), so I was excited to hear from him. I actually bumped into him right before his talk and he stopped to give me a big hug and asked how I was doing on Entyvio. I told him okay, but still not in remission. He replied (a number of times) that he thinks it’ll work for me, so I hope he’s right.
There was a lot covered at the symposium, so I decided to highlight the parts that I found especially interesting and possibly helpful to other IBD patients.
IBD AND THE MICROBIOME
- There’s a clear difference in the microbiome of a person with IBD versus a healthy one.
- The session included a lot of talk about Fecal Microbiota Transplantation (FMT), which I’m sure you remember from past posts on CNC. What is FMT? Well, it’s a stool transplant from a healthy person to a sick person to cure a certain disease. The rationale is that there’s an imbalance in the intestinal microbiota, which is associated with or causes the disease and can be corrected by the re-introduction of donor feces (aka poop transplant).
- FMT is not a new concept, but it’s taking time to gain traction as a way to help IBD patients. It’s highly regulated by the FDA, and, right now, it’s only used on C.Diff patients. And it works REALLY well for them. The success rate is well over 90 percent! However, the results aren’t as clear for IBD patients. Some clinical trials have been more successful than others. It seems like the FMT acts differently in Crohn’s versus UC patients and some donors seem more effective than others, so more research is needed to figure out why. IBD patients also need multiple FMTs since the gut microbiome goes back to its previous imbalance within 6 months. The future of FMT, however, will likely use fecal capsules for long-term administration (i.e. weekly), so a colonoscopy transplantation is not needed every time.
- There are over 100 FMT clinical trials happening right now (for IBD and other diseases), so, hopefully, it becomes an option for IBD patients soon.
COMPLEMENTARY THERAPIES FOR IBD
- Nutrition: Certain dietary intake can increase inflammation (Omega-6 fatty acids, transfats, high sat/polyunsaturated fats, high hypoglycemic load). Certain diets are associated with less inflammation (Mediterranean, Anti-Inflammatory, Okinowan). The low-residue diet typically recommended for IDB is directly the opposite of the anti-inflammatory diet. Amen. Dr. Hand, the presenter, also recommended cooking foods down if needed, avoiding clear food triggers (i.e. gluten, dairy), and eating fruits and veggies that are very colorful for their phytonutrients. His best advice: “Eat food with a healing intent.“
- Dr. Hand’s go-to supplement recommendations: Omega-3 fats, vitamin D, probiotics, turmeric (1200-1800 mg per day). Other supplements he suggested: Glutamine (7gms 2-3x a day), Phosphatidylcholine, Boswellia, and Wormwood, which is associated with great results in early studies. Related: Someone asked how do you know which supplements are safe and most effective? Dr. Hand’s response was look for the USP Stamp and check out consumerlab.com, which is a watchdog group who tests many supplements on store shelves.
- Stress reduction: Breath work, meditation, yoga, Tai Chi, Qi Gong, exercise, counseling, spirituality/prayer, and energy medicine.
WHAT’S NEW IN INFLAMMATORY BOWEL DISEASE
- Non-invasive markers for inflammation – Calprotein (I talked about this on CNC a few weeks ago) is a better way to understand intestinal inflammation.
- Biologics! (Remember how much I used to hate them? Oh, how things have changed!) Anti-TNF available: Remicade, Humira, Cimzia (only from Crohn’s), Simponi (only for UC). Vedolizumab (aka Entyvio): Dr. Yajnik literally raised his voice with excitement when he started talking about Entyvio. It’s gut-selective, so you don’t get the same side effects as you do with other biologics. He shared a number of promising studies, so I’m hopeful it works for me.
- Another thing Dr. Yajnik said that stuck with me (and made me feel hopeful) was when he joined MGH in 1996, the only options for IBD patients were steroids and narcotics. In 2016, there are so many more options and they continue to grow every year. He said: “I’m a dreamer and hopeful guy. I don’t know if you’ll be on these drugs for the rest of your life.“
- He concluded by saying that communication with your doctor is critical, so if you have side effects, etc., be sure to speak up. He also encouraged IBD patients to participate in research studies. He actually said: “You just poop in a hat and give it to the lab.” Haha! And this is one of many reasons why I love my doctor so much! You definitely need to have a sense of humor about this disease.
I’m so glad that I attended the Boston Patient & Family IBD symposium. It was educational and informative and (mostly importantly) it took away some of the isolation that comes along with IBD. It’s definitely not a glamorous disease, so it was helpful and even comforting to be around people who get it. A big THANKS to the CCFA for putting on such a wonderful event!