• 2016 Boston Patient & Family IBD Symposium

    March 23, 2016

    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.

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    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.

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    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.

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    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.

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    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.

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    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!

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    { 27 comments… read them below or add one }

    Brynn March 23, 2016 at 6:20 am

    Wow, what an event. I learned so much just from this recap post, especially how far treatment has come in the recent years! Your doctor sounds amazing, which is such a blessing. I really appreciate your honesty and respect you sharing your experience with IBD.

    Reply

    Susie @ SuzLyfe March 23, 2016 at 6:58 am

    Thank you for sharing this! I learned a lot about what was done with the money from Team Challenge during the race in New Orleans, but not as much what is truly on the horizon for people with IBD. So many new and exciting strides being made for us IBD’ers.

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    Megan @ Skinny Fitalicious March 23, 2016 at 7:07 am

    As a nutrition student, I find this stuff very interesting! I absolutely believe that food is healing!

    Reply

    Lisa Bailey March 23, 2016 at 7:31 am

    Thank you so much for this post! Very helpful and hopeful for those of us with IBD!

    IBD Power fist pump!

    Reply

    Meredith Rogers March 23, 2016 at 7:58 am

    Sounds like an amazing event.

    Oddly enough, you might be the first person I “know” that has taken a drug I helped make. I work in biotech and have done multiple projects to manufacture drugs that supply clinical trials, including TNF inhibitors. It’s so nice to see that the work I do really does help people.

    Reply

    Paula March 23, 2016 at 9:07 am

    @Meredith Rogers: High-five! Working in biotech must seem thankless in our culture of “big pharma sucks!”. We forget that people still exist in the industry who are legitimately working to improve people’s lives. It’s awesome that you get to see your work in action.

    Reply

    adrianna March 23, 2016 at 10:42 pm

    @Meredith Rogers: how cool! very commendable work you do 🙂
    and tina–really great post. loved all the info!

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    kate March 23, 2016 at 7:58 am

    Thank you so much for sharing! As someone with Crohn’s, it is important to know that the experts are so hopeful. CCFA for the cure!

    Reply

    Samantha @ believeandrun March 23, 2016 at 8:12 am

    I think it is wonderful that you are able to share about your life with UC. A very good friend of mine also has UC and I have referred her to your page to not feel so alone and everything. She also is a runner so I think she will definitely appreciate your page and everything you have to offer for her with UC and other information as well! Plus your blog is awesome to read!

    Reply

    Lauren @ The Bikini Experiment March 23, 2016 at 8:23 am

    It is very difficult living with any chronic illness and IBD certainly presents difficult challenges. Thank you for sharing this important information. Very informative.

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    HEATHER March 23, 2016 at 8:47 am

    Very informative! Stay hopeful that Entyvio will work for you, i am 🙂

    Reply

    Kelli @ Hungry Hobby March 23, 2016 at 8:54 am

    This is awesome that your doctor held such a cool event, I can see why you really like him! Seems like he is going above and beyond to find help for his patients beyond just drugs, but being practical about the use of drugs. I love working with clients who doctors are on top of the new research and willing to combine natural tactics like diet, supplements, etc in addition to standard treatment. So many of my clients struggle with this condition and I also refer them to your blog for help and support! Keep doing what your doing and I’m sending positive universe thoughts for remission!

    Reply

    Anna Daugherty March 23, 2016 at 9:31 am

    So I don’t have IBD, but I have worked with this nutritionist, author of the book “And they said it wasn’t possible”, see below link if interested. And while I don’t have any GI issues, I believe the majority of her patients do, and her book largely focuses around IBD patients. She’s based in Wisconsin, but does phone consultations and is very reasonably priced, I will also link her site. Anyway, I’ve read your blog for a long time and I hope the best for you and your health!
    Book-
    http://www.amazon.com/They-Said-Wasnt-Possible-Impossible/dp/1412082129/ref=sr_1_1?ie=UTF8&qid=1458739300&sr=8-1&keywords=karen+hurd
    Website-
    http://www.karenhurd.com/

    Reply

    Tina March 23, 2016 at 9:36 am

    Thank you! I will definitely check it out!!

    Reply

    Ella March 23, 2016 at 10:02 am

    Thank you for sharing this! As an RD, it was a great quick refresher course and speed update on the newer info about IBD. Very helpful for me.

    I am always so impressed at how you deal with your IBD, Tina. I just wish you all the best and health and comfort!!

    Reply

    Kelly March 23, 2016 at 10:34 am

    I found this really interesting despite not struggling with it myself. I’ve followed your blog for several years and have always been really impressed at how positive you seem and how you CHOOSE to lead such a happy life despite the pain you have obviously endured (and still do).

    Reply

    Valerie March 23, 2016 at 10:39 am

    My godmother was diagnosed with UC when she was a teenager, over 40 years ago! She had to have a colostomy bag and everything. It’s so great that lots of new information is available these days, and that researchers are learning more each year to help make life for those with AI disorders much more normal. I hope that Entyvio is a positive solution for you!

    Reply

    Kyla March 23, 2016 at 10:42 am

    Also, speak with your doc or RD prior to supplementing just to be sure there are no drug interactions with the supplements.I just need to put that disclaimer out there since I’m a RD but that’s wonderful to recommend a probiotic and omega-3’s. My mom actually is using glutamine right now to heal her gut( she has PLEVA, an autoimmune disease) and she has said it has helped tremendously. I definitely think we are going to be learning more and more about FMT’s and I truly hope it works in Crohn’s/Collitis patients!

    Reply

    Larua March 23, 2016 at 11:00 am

    Hey Tina, I was literally just thinking this morning about how you were doing on Entyvio. I work a lot with IBD drugs and the CCFA in my work, and it’s really encouraging to be hearing stories from people beginning to see results with it. The CCFA is an AMAZING organization – so great that you’ve been involved with them. Good luck on remission, fingers crossed!

    Reply

    Anna March 23, 2016 at 11:06 am

    Sounds like you have an awesome doctor! A sense of humor, empathy and confidence in what they’re having you do is SO important. I find all the FMT stuff totally fascinating. I think 5-10 years from now, it will be the norm. Thanks for sharing, Tina. I’m always interested in learning about other autoimmune conditions.

    Reply

    Sara March 23, 2016 at 11:35 am

    I really appreciate all of your posts and open honesty about your experience with IBD. I have been struggling with Post-Infectious IBS for almost a year and though it’s not NEARLY as bad and not even in the same realm as what you go through, I have a new found appreciation for what people with more serious symptoms must go through. Thanks so much for always sharing your experience and knowledge with us.

    Reply

    bree March 23, 2016 at 10:01 pm

    whether you have an autoimmune disease or not, no one should be eating preservatives and nonfood items disguised as snacks or instant dinners. I think we could all benefit from clean eating- from energy, to lower fat, to better behavior (children), skin, etc. Its no big secret, junk is bad, real good is good! 🙂 Now if only I could get my students on board with this at school!

    Reply

    Leah March 23, 2016 at 11:45 pm

    Thank you for sharing and being so open about your health struggles. Before kids, I was a nurse and really love learning more about GI topics and new treatments. One of my kids was being worked up for UC/chrons. We are thinking and hoping it was post infectious iBS or allergy. Going gf and taking glutamine, pre and probiotics have helped his lab results and how he feels so much. Hope your new drug helps you. You are an inspiration!

    Reply

    Jenny March 24, 2016 at 6:57 pm

    Thanks for sharing your story. It’s really interesting to hear your recap. I am in a dietetics program now and we just got done discussing IBD, so what you said reiterated a lot of what I just learned. I think the hospital here in Iowa was one of the first to do fecal transplants…and from what my instructor says, they are extremely successful!

    Reply

    Ashley March 24, 2016 at 9:33 pm

    You did a wonderful job summarizing the conference, Tina. I really commend you for being able to speak so freely about your IBD. Your perseverance through it all has been remarkable to watch. Autoimmune diseases suck!

    Reply

    Kaitlin March 24, 2016 at 10:40 pm

    Hi Tina! How do you find out about events such as this? I live in the area and have Crohn’s and would have loved to have gone!

    Thanks 🙂

    Reply

    Tina March 25, 2016 at 6:43 am

    From the CCFA. Just sign up for their newsletter!

    Reply

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