¡Hola! My fellow Crohnies, uc-ers, readers . . . My friend, Shelly, asked me what was up, so I thought I better get on here, and write something! Having Crohn’s disease AND colitis, and other autoimmune diseases is not a walk in the park, but my girlfriend, Cindy, has something called myasthenia gravis, and she is really struggling. Last night, I had a home jewelry party as a way for her to raise money to help defray some medical expenses, and the upcoming mortgage (she ‘s a single mother of three on disability). It felt great to help HER! I think helping others is the way to help ourselves….
So now, the update!
Crohn’s flare Novemeber 30th Rx.
Started low dose naltrexone, high potency turmeric, increased probiotics, and something called Glutamine (the last 2 on an empty stomach), along with high potency turmeric (cur-cumin—yes, an herb!). I told my GI I was doing this…. And now it is over two months later, and I feel great!!! This is definitely NOT a drug or infusion with potential side effects (though LDN is not FDA approved), rather it is a more “integrative” approach to medicine that should be practiced everywhere. I’m lucky, in that my co-author, Jessica Black, is a naturopath who is up to date on treatments that are less invasive, but effective! Worth looking into, don’t you think?!
After I started writing this post, I looked up Glutamine, and this is how it works:
With the anti-inflammatory, Cur-Cumin, and the beneficial effects of increased probiotics, the Glutamine works as a binder in my gut to help decrease the inflammatory cytokines. It is an amino acid. The probiotics are live culture micro-organisms that help to balance the gut micro flora. This is good stuff! The doctors, the researchers, and patients are beginning to take all of this gut bacteria science news pretty seriously.
“The human gut teems with bacteria, many of their species still unknown. They help,us digest food and absorb nutrients, and they play a part in protecting our intestinal walls. Gut bacteria may also help regulate weight and ward off autoimmune disease.”
I strongly feel that taking a regimen of potentially carcinogenic drugs is not the way I, personally, want to go! I HAVE taken Prednisone, and currently I am on a low dose (3mg) naltrexone protocol (this is NOT FDA-approved), and I just know it is working.
A feeling of consistency is occurring—getting at least 8 house of sleep, walking-running 3/4 miles a day, doing yoga and meditation daily, seeing a therapist…. And writing about it all. This kind of integrative medicine is where we should all head towards, as patients and caregivers!
Here is the coolest photo in the world…. Can you guess what it is a photo of???
From National Geographic!
“One thing I teach: suffering and the end of suffering.
It is just ill and the ceasing of ill that I proclaim.”
In a recent study, Mental Training Increases Physical Strength, by Erin M. Shackell and Lionel G. Standing from Bishop’s University in Quebec, a group of college students were asked to IMAGINE strength training versus a control group who did nothing and another group who did the actual physical work.
One area (hip flexing) was identified for groups of 10 college student-athletes to work on for the two-week study. The 10 college students who did the actual strength training five days a week did four sets of eight repetitions, adding 5lbs of weight, and they saw strength training improvement of 28%. The group of 10 that did nothing saw no gains; and the group that practiced visualization saw gains of 24%! This study was unique in that the group imagining themselves doing the reps actually did nothing after that—it was pure visualization.
The idea of using mental practice to improve performance has been around as long as Buddhism, founded 2,500 years ago. Exactly how visualization changes physical health remains a mystery, but the Dalai Lama spoke of the process of training the mind through meditation when I heard him speak this past October. I was profoundly affected by his talk; in fact, I am writing a book with Travis Hellstrom, called Questions for the Dalai Lama & Daily Quotes for Hope, due out in 2014—visit our website here, and please join us—we like to receive questions, and you may be in the book! Those of us in the Crohn’s-Colitis community live with suffering sometimes on a daily basis. It is important to develop and train your mind as a way to cope with this.
Additionally, studies have shown that altruistic behavior (the inherent, and possibly genetic ability to help) improves medical outcomes—so a good New Year’s resolution:
Do something kind for someone or something every day. My own daily intention is this: May our thoughts be kind and clear. May our words and communication be kind and clear. May our actions and intentions be for the greater good of all beings.
I have used mediation and mindfulness steadily since my bowel resection six years ago, and I have made a daily practice of morning yoga and mediation. When I sit at the end of my yoga session (I use the gentle Rodney Yee DvD, “A.M. Yoga,” I let Rodney’s soothing voice guide me into a place where my breath is quiet, my mind quiets (that can take a while with me!), and my shoulders and ears and limbs are relaxed (look at statues of sitting Buddhas, and you will notice the elongated ears, the fingers in the lotus position, the downcast eyes…). I chant “Om,” before and after I sit, and I have a visualization that I let pass through my body from my head down through my spine, and out my lower back—it is a ball of white light. While this luminescent ball moves down my spine, I have a mantra I chant over and over that goes like this:
White light healing
It is amazing to me how grounded and refreshed I feel after each morning session.
Now that my Crohn’s has gone into a full-blown flare, I am sobered by the realization that the disease has been spreading back up my small intestine from the site of the surgery (see my recent post, What Causes a Flare Up). However, I have heard from numerous health practitioners that a positive outlook actually affects disease outcomes, so my goal is to be as upbeat as possible while I begin this new drug-and-naturopathic protocol (low dose naltrexone, Glutamine, vitamin D and C, high potency turmeric/curcumin, and the rest of my daily supplements including increased probiotics).
I am also committed to getting back on the Specific Carbohydrate Diet (SCD) that helped me so much six years ago! My colleagues, Jordan and Steve, have since developed a really great website and resources based on the original book, Breaking the Vicious Cycle, by Elaine Gottschall.
How Does the Specific Carbohydrate Diet Work?
By eliminating complex carbohydrates, lactose, sucrose and other man made ingredients from the digestive process, the body is finally allowed to start healing. As gut flora levels start to stabilize, the reduction of irritants from undigested foods, toxins and other man made ingredients allows inflammation levels to retreat.
So, for all my readers, followers, fellow uc-ers, Crohnnies, and friends—keep on with visualization and positive thinking, especially as we embark on a new year with new beginnings.
My quest to lower inflammation in my body, actually throughout my body but focused on the enteric nervous system, is ongoing. Since the enteric nervous system is intertwined with the lining of the gastrointestinal system, it makes sense to pay attention to the one hundred MILLION neurons in the gut, home to the “second brain.”
Another little-known fact is that more than 90 percent of the body’s serotonin is found in the gut. My own experience is that I function better when I am actively releasing and secreting serotonin, which, for me, is achieved by riding my bike, and/or running, mostly.
I like to think that the gut needs to be toned, like a muscle; it is fact loaded with muscle and the lining is multifaceted and complex. When inflammation occurs in the gut, usually a combination of things contribute to a build-up of this, and the white blood cells and helper cells that normally race to an infection can’t do their job properly, and things get out of balance.
The parasympathetic and sympathetic nervous system is a complex, and sometimes emotional, system within a vertebrate body. I often go to a physical therapist who specializes in a technique called Integrative Manual Therapy. Her name is Deborah Feiner, and I consider her a kind of healer. I have benefitted tremendously from working with this type of therapy. I relax totally on the table, and we often joke about the rumblings of bowel sounds that immediately occur when I relax (these are good bowel sounds, not the loud rumblings I had before my surgery!). During my session, a kind of toning occurs along my intestines, and she guides her hands around my stomach, almost intuitively. It is amazing, I would never have done this before my surgery, when my life changed totally. I would have been too insecure.
I will leave off this entry with a photo of me, with another photo of Debbie behind me by Phil Innes.
I was going to post a recipe… But will do that next time! I have been getting lots of sleep, exercise, and doing daily gentle yoga (Rodney and Colleen Yee) and guided meditation. I also take the ground flax seed and probiotics every night after dinner…. I am regular in my bowel movements, and much less stressed in my daily life: it seems to be working!