CCFA Alternative Therapies Chat

Posted on Posted in Science & Research, Treatments

Dr. David Rubin portrait photograph

On July 23rd, 2013, the CCFA sponsored a live Facebook chat with Dr. David T. Rubin, a well known and respected gastroenterologist from the University of Chicago. He answered patient questions on alternative therapies such as Human Microbiota Transplants, Helminthic therapy, probiotics, low dose naltrexone, turmeric, marijuana, diets, and more.

Below are the answers to the questions he responded to. All questions and answers have direct links to that specific comment.

David T. Rubin
Hello Everyone, and thank you for joining me on the CCFA DocChat today. I’m honored to be here and to try to answer your questions.

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David T. Rubin
Let me start by making a number of general comments about Complementary and Alternative Medicine, so I can address some basic issues. First, I want to be clear that any treatments we discuss today should also be discussed with your doctor, and preferably someone who is experienced caring for IBD. You may need to seek a second opinion to gain the additional information that you need to make an informed decision about your health. Secondly, there are many general comments by patients and on the internet that “Westernized” medicine or allopathic medicine is opposed to complementary and alternative approaches to health. This is untrue. Your health care team has similar goals for your stable health and well-being as you do (or they should!). We all want to discover cures to Crohn’s disease and ulcerative colitis, and we also want our patients to be well on stable and safe therapies. If you are unsure if your doctor or health care team members have these goals, then you should ask more about their interest and their understanding about them. Thirdly, I want to be very clear that one of the major improvements in IBD research and in our clinical practice is the movement away from relying on symptoms alone as a marker of stable disease control. In other words, we understand now that symptom improvement often doesn’t correlate with inflammation or disease control. While it is very important to feel better, symptoms alone are not sufficient to guarantee your disease control. Any alternative or complemetary approach should be coupled to objective measures of disease control and ongoing disease management (monitoring your nutrition, labs, markers of inflammation and ongoing surveillance and prevention practices). And lastly, I want to emphasize that the absence of evidence does not mean that a therapy is safe. And just because something sounds or is “natural” absolutely doesn’t mean that it is a) better than available therapies that have been studied extensively or b) automatically safe for your consumption. Remember that the least safe therapy is the one that is not working! I’m a huge believer in the concept “knowledge is power” and applaud you all for being here and learning. Keep asking good questions and challenging us until we find cures! Best, Dr. R

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Question from Marianne Hyatt Chervitz
Hi Dr. Rubin! What are your thoughts on the effectiveness of probiotics in Crhohn’s patients and also, your thoughts on Juice Plus as a way to get back some nutrients and vitamins?

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Answer by David T. Rubin
Hi Marianne! Probiotics have been studied for the induction of remission in Crohn’s disease, maintenance of remission and also for prevention of recurrence in post-operative Crohn’s. Unfortunately, none of these studies have demonstrated benefit. It may be that these are the wrong organisms, the wrong dose or simply that the mechanism is wrong. Probiotics do have some benefit for irritable bowel symptoms and for prevention of antibiotic-associated diarrhea. As for Juicing, it is very important that our patients with IBD maintain their nutrition. Sometimes juicing provides a rich amount of nutrition in an easily digestible “package”. But it doesn’t control the inflammation.

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Question from Laura Adams Stiansen
Dr. Rubin, what do you feel are the BEST (most successful) natural therapies for uc patients to help the disease go into remission? I’ve been taking fish oil with no change in my condition.

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Answer by David T. Rubin
Hi Laura! Did you know that the aminosalicylates, the primary treatment for mild to moderate ulcerative colitis are derived from the bark of willow trees? This is a proven treatment for inducing remission in UC. Unfortunately, fish oil (omega-3 fatty acids) has not been successful in induction or maintenance studies for UC and in two very large trials for Crohn’s (see EPINOVA studies). We are quite interested in dietary approaches, but unfortunately, do not have evidence yet of any specific diet (including SCD) to do this reliably. See my comment above if you choose to try any dietary management. Remember too that if you find that most foods you eat are causing symptoms, it is more likely the bowel than the food. Acupuncture is of interest, but in my experience has primarily helped for pain, not for controlling inflammation.

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Question by Catie Sheehan Gibson
What is the most promising alternative therapy for Crohn’s patients? –

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Answer by David T. Rubin
Thanks for your question Catie. We have great interest in a variety of alternative therapies, but as of now, there have not been any effective treatments proven to help. As I mention above for the question about UC, fish oil has not worked (and some of you may have read recently that fish oil may actually increase prostate cancer! – ?), and probiotics haven’t helped. In kids, and elemental diet can induce remission, especially for small bowel disease, but unfortunately, it’s not palatable so must be delivered by tube feeding, and it’s also not sustainable- meaning if you stop it, the disease recurs. I will answer some other specific questions below.

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Question from Mary Mack
What are your thoughts on medical marijuana?

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Answer by David T. Rubin
Hi Mary, thanks for asking. It is a common question. Amanda, I’m sorry you feel it necessary to assume such things. I’ve actually advocated for passage of medical marijuana in Illinois. It definitely helps symptoms. But please refer to my general comments above. Symptom management is not the same as disease control. We definitely want our patients to feel better and we like that this can also stimulate their appetite! As for the recent study that Amanda references, allow me to clarify for everyone. This study of 11 patients showed some symptom improvement but did not achieve its primary endpoint of remission – in other words, some of these patients did feel better, but unfortunately, they did not achieve disease control. I also want readers to know about a condition called cannabinoid hyperemesis (please google it). Unfortunately, I’ve seen this as a result of too much marijuana use too, and it confuses our ability to monitor the true effect of cannabis on the disease since the withdrawal is so dramatic. Please everyone, let’s not let our enthusiasm for proposed treatments cloud our judgement of benefit (or of the opinions of doctors trying to study it). http://www.ncbi.nlm.nih.gov/pubmed/23648372 Comment Link

Question from Tommasina Marlow Lash
How much tumeric do you need to take to get benifits?

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Answer by David T. Rubin
Hi Tommasina, thanks for asking. Turmeric is of interest to us not only as an anti-inflammatory but also for potential chemoprevention of cancer, and we’ve learned some of this from Ayurvedic medicine. However, the doses needed to achieve this haven’t been worked out yet. In our preliminary calculations and trials, it appears that the dose may be quite large, and therefore impractical. We continue to investigate. Curcumin containing foods are a natural way to get some turmeric into your diet – so you can certainly use more of that! https://en.wikipedia.org/wiki/Turmeric Comment Link

Question from Jan Campbell-Burgert
What is your opinion on low dose naltrexone? I have 2 children with crohn’s and both were on biologics and had to get off of them because of nasty side effects, including siezures. I would really like to see a safer med put to use instead of something that totally destroys your immune system.

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Answer from David T. Rubin
Jan, I’m so sorry to learn about your children and the side effects that they have had. There are great claims of effectiveness about low dose naltrexone for many diseases- cancer, multiple sclerosis, irritable bowel syndrome and yes, inflammatory bowel disease. It is of interest, and it is thought that modification of opioid petides may stem inflammation. There is a nice small study in Crohn’s disease that we published in Digestive Diseases and Sciences that showed some benefit. I do want you to know that the general concept of immune modification is similar with this therapy as with the other approved therapies for IBD. The goal is to turn down the overactive or unregulated inflammatory response in order for the body’s immune system to reset and regulate itself. So from that perspective, this is also an immune modifying therapy! In our experience here, we have not had success with this, but I do think it should be studied more. My comments above about correlating your children’s improvements in symptoms to objective measures of their disease (fecal markers, serum markers, scopes) is important. Naltrexone also acts a little like imodium, so it can certainly help with diarrhea symptoms. And some patients have sleep disturbances on this, so be aware of that too. http://www.ncbi.nlm.nih.gov/pubmed/21380937 Comment Link

Question from Karen Williams Shriver
Does a mild to moderate Crohns patient need treatment with the immune suppressing drugs? Is there an alternative?

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Answer by David T. Rubin
Hi Karen, Thanks for your question! First, we must acknowledge that Crohn’s comes in many different shapes and sizes. The location of the disease and the effects it may be having on you, as well as your response to prior therapies help us know if you require immune-based therapies. For example, if you have required steroids more than once in the past, it is likely than a steroid-sparing immune based strategy will be needed to achieve control. This may include our “conventional” immune therapies or a biological strategy. Secondly, patients with Crohn’s involving the perianal area often need biological therapies to best treat that- other approaches have not worked. Part of the confusion about Crohn’s and colitis is due to the fact that some patients with milder disease may do well on less therapy or on some of the alternative approaches advocated here- while those with more extensive or severe disease may suffer serious consequences if they don’t have these options. Despite the concerns we all have about immune based therapies, please know that our current use has changed the natural history of Crohn’s in many patients and is quite safe. We are working on new ways to measure “deep remission” and to consider dose reduction or de-esclation of therapy in some patients. That’s why it’s so hard to answer a general question without more info- and why folks should definitely work with experienced physicians to review these options.

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Question by Megan Crawford
Dr. Rubin, are there certain ‘superfoods’ you might recommend during a flare to combat fatigue and weakness? Besides medications, what are your best recommendations for maintaining one’s health if diagnosed with colitis? Such as, most effective supplements. What are your thoughts on fish oil? Thank you!

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Answer by David T. Rubin
Hi Megan! Diet is the number one question we receive in our practice. It makes sense since that’s how our guts “see” the outside world and it is also what gives us symptoms. When we pass food through an inflamed digestive tract, that can certainly make us feel bad. The general recommendations during a flare are to avoid high fiber and poorly digestible foods like uncooked fruits and vegetables or fatty/fried foods. As for “super foods” I am partial to my mother’s chicken soup! Seriously, though, keeping a balanced diet and eating healthfully is critical. Don’t eliminate too many foods, and make sure your doctor is monitoring your vitamin D, zinc, iron and other nutrients. Fish oil is good for many things, but hasn’t gotten us what we need in IBD (see my comments above).

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Question by Nancy Williams
Hello, not sure if this is “alternative” or not, but what is your opinion about fecal transplants for UC? My d was dx at age 9 and she is 16 and on some strong immune suppressant drugs; I would like her to not be on these her whole life.

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Answer by David T. Rubin
Thanks Nancy, so sorry to hear about your daughter. I am quite involved with the fecal transplant work in IBD. I hold the IND from the FDA for studying this in adults with UC and we are currently enrolling. For kids, there are ongoing trials. Despite the New York Times opinion piece describing one patient’s response, the other emerging results of this treatment have not been so positive and some patients have gotten sicker unfortunately. A wonderful woman (Catherine Duff) has created a foundation working on coordinating the research and information about fecal transplants in C. difficile and in IBD and other conditions, and I’m part of their advisory boad. This may be helpful for you: www.thefecaltransplantfoundation.org

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Question by Heather Garcia
What about helminth therapy? That I route I am wanting to take. Any experience with the success in treating fistulas with this therapy?

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Answer by David T. Rubin
Hi Heather! The concept behind helminthic therapy is based on the idea that parasites can stimulate our innate immune system which is malfunctioning (maybe because our world has become too clean). The trichuris suis ova (pig whipworm eggs) that are being studied and used in this regard were chosen because they won’t hatch and infect humans. There are now clinical trials to formally study this treatment, and importantly, study how this may affect your gut immune system, so we can learn more about it and develop additional approaches. I would encourage you to find a clinical trial site and get involved! Here is the active trial: http://clinicaltrials.gov/ct2/show/NCT01279577?term=trichuris+suis&rank=10 Comment Link

Question from Sharon Rosenberg
I’m a “newer” Crohn’s patient. I tried 6-M and ended up with Pancreatitis. Now, besides no scrip insurance, I’m afraid to take ANYTHING. I’ve heard aloe works tho. I’m also a diabetic. What are thoughts on this?

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Answer by David T. Rubin
Hi Sharon, so sorry about the drug-induced pancreatitis. This happens in about 8% of people treated with 6-MP or Azathioprine (these are sister drugs), and is thought to be a genetic susceptibility. That is painful! It resolves completely as you know. Aloe if of interest, but unfortunately there is little to suggest that it would work on the complex immune activity of your bowel. I would suggest though that you review the location of your Crohn’s with your doctor and discuss thoroughly your other options. In a landmark comparative effectiveness study, 6-MP/azathioprine was inferior to a biological regimen with infliximab. This is strong evidence. And the safety was equivalent. Despite your fears, a directed therapy that targets a specific protein of inflammation (instead of all your lymphocytes) may be a very good option. http://www.ncbi.nlm.nih.gov/pubmed/?term=sonic+sandborn+colombel Comment Link

Close by David T. Rubin
Thanks everyone for your great questions! I enjoyed this tremendously. Remember, we have made tremendous progress in our treatments for IBD, and more is coming! Please join the CCFA and continue to ask probing questions and learn all that you can. Here is one final good reference: http://www.ccfa.org/resources/complementary-alternative.html Comment Link

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