When you read Dede’s latest medical assessment (in the photo), you will see that she has no symptoms…and then read down, and see the symptoms/possible side effects from the medication!
That was May, 2013. In her checkup this past October, the doctors said they are amazed at her condition and attribute it to her and Jessica Black, ND’s low-inflammation diet and lifestyle! They told her that no medication is needed at this time, but only if symptoms occur.
The diet, the exercise, the yoga/meditation, and working with her naturopathic physician as well are all doing their job!!!
High-potency turmeric (curcumin phytosome), a prescribed probiotic powder (Dede buys all her supplements from her naturopath’s office… Expensive, but worth it for the best quality), ultra potent C, Omega 3 fish oil, Phyto-multi vitamins, magnesium with calcium, D3 liquid drops, and a daily adrenal assist (herbal) pill provides key nutrients and botanicals to support adrenal response to stress and support the ability to adapt to stressors and restore balance.
As we move into the wonderful month of February, with longer days and a holiday/school vacations, now is the time to think about training for a walk or a run (Team Challenge, or a CCFA.org walk—http://www.ccfa.org/get-involved/team-challenge.html). Set a goal… Also, add a visit to a naturopathic physician, and try acupuncture (with a trained practitioner who is recommended… If you are nervous about needles, ask for Moxa).
These anti-inflammatory diet and lifestyle changes are a big part of your wellness campaign. Take it one day at a time. Get out in nature (and snow) every day! And continue to heal, and restore balance in your life…
Dear Fellow UC-ers and Crohnnie’s, Happy New Year!
One of the best resolutions for the new year that is underway, is to have a positive outlook!
I know, I know, sometimes it is really HARD to have that when you feel lousy, but our community that has grown around the book, and the online network of Crohn’s, colitis, IBS/IBD, and other autoimmune disease is a supportive one. With that in mind, I propose a three-month guide to wellness. It isn’t a medical guide, and you should always consult your GI about doing anything dietary or herbal, or even lifestyle changes.
As usual, start with moderation, and keep a daily journal — not just about the food you eat, but what you do, how much you exercise and for how long, when you have acupuncture or massage, or have your period, or if you are exposed to anything potentially toxic in your environment—keep track of it all! Dede swears by this, and Jessie says she has patients that immediately start making connections (like, for example, maybe that whole bag of chips you ate the other day wasn’t such a good idea….). That said, here is the First Two Week GOAL. Take it slow, and modify as necessary.
1. See the change and believe in the change! Visualize optimal colon health daily. See yourself happy, active, and vibrant in your mind.
2. Proper Mealtime Habits—eat slowly, and take your time preparing, shopping, and don’t overeat, or try new foods during the plan.
3. Remove major dietary causes of inflammation—keep a food journal, and stay away from trigger foods! (For Dede it is wheat, sugar, and dairy—I know, hard to imagine life without dairy? Then switch to almond milk which is so good!)
4. Add only one supplement or herbal medicine, whichever best suits you. This may be an acute remedy for diarrhea, acidophilus, or any other supportive medicine—for example, Dede started a new supplement, turmeric, which is a natural anti-inflammatory. She takes two capsules daily, and tries to cook a curry dish once a week or so.
5. Herbal teas: pick one of the teas that best fit your needs and drink daily. Dede drinks Peppermint! Also Chamomile is a good stress reducer. Add honey for sweetening, as you like.
6. Take it slow and easy. Be kind to yourself, and ask for help!
Happy New Year!
From Dede and Jessica, and the LWCC group—we are here for you!
Email with questions to firstname.lastname@example.org
Or to Jessica Black, ND at
Sam, Sherri, Dede, and Saskia at the end of the CCFA’s Nape to Sonoma Half Marathon last summer—we were all tired but elated to have finished, and raised almost 2 million dollars for IBD research for the CCFA.org.
Follow Saskia’s blog—she is an inspiration to us all!
On July 21st, Brattleboro, Vermont resident, Dede Cummings, ran the Napa-to-Sonoma Wine Country Half Marathon with Team Challenge New England to raise funds for the Crohn’s & Colitis Foundation of America (www.CCFA.org). This was her second Half Marathon with Team New England, and there were over 3,500 runners competing, with 672 from the CCFA.
Cummings ran to raise research funds for the CCFA, whose mission is to find a cure for Inflammatory Bowel Diseases and improve the quality of life of the 1.5 million American adults and children who suffer everyday, with a time of 2-1/2 hours and she placed in the middle of the racers on race day.
Since she is from Vermont, she ran with Team Challenge from New England, and the group wore “Boston Strong” T-shirts. Team New England raised the most money of all the teams, over $400,000. The total money raised for the event was over $2.4 million dollars of which 80% goes to research. There were teams from across the United States, running to raise money for the Crohn’s & Colitis Foundation of America.
Cummings also ran for Ryan McMahon, a former team challenge runner who was injured in the Boston bombing. She is now part of a group called Run for Boston (#runforboston), which is motivated to raise awareness for running as well as for the increase in inflammatory bowel disease worldwide.
According to Cummings:
At mile 12, we turned right and entered the small city of Sonoma. At this point people were lining the street, and urging us on, which was great. Both of my calves cramped up pretty badly, and I was kind of nervous. I could see the finish line ahead of me, and I thought I might have to sit down and not finish! I have to admit, I did get a little choked up when I crossed the finish line, and I felt really proud of myself for living with Crohn’s disease, yet still living my life to the fullest even after surgery to remove a portion of my small and large intestine.
She is still trying to make her fundraising goal—with an extension until August 21st.
The website address for on-line donations is: http://www.active.com/donations/fundraise_public.cfm?ckey=napaNE13&force_a2=y&key=TCNE_Napa13DCummin1
Donations can still be made using this website,
or a check made out to CCFA can be mailed to her
at 34 Miller Road, Brattleboro, Vermont 05301.
My second Team Challenge Half Marathon was a wonderful event! We arrived on Friday, and Saturday morning I met up with my old college roommate, and we went out to Point Reyes National Seashore.
The night before the race, we had a pasta party, and two inspirational speakers living bravely with IBD (inflammatory vowel disease) spoke— Saskia Madison and Michael Ginzberg. Since I am from Vermont, my state is too small to have a state team, so I am on Team Challenge from New England. We wore our special “Boston Strong” T-shirts. Team New England raised the most money of all the teams, over $400,000.
I also ran for Ryan McMahon, a former team challenge runner who was injured in the Boston bombing. I am part of a group called Run for Boston (#runforboston), and I am motivated to raise awareness for running as well as to raise awareness for the increase in inflammatory bowel disease worldwide.
There were teams from across the US to raise money for the Crohn’s & Colitis Foundation of America: 2.4 million was the total, of which 80% goes to research. I’m quite proud to be a part of this wonderful organization.
Race day, we got up at 4:30 a.m. to have breakfast and meet the bus to take us to Napa. We all congregated at a wine vineyard there — and there were over 3,500 runners—630 were from all the Team Challenge state chapters.
Before the start, people lined up along the vineyard road, and when the gun went off it took a long time to get moving — especially back where I was pacing myself at 11-12 minute miles!
We finally got moving, and took a left for the first leg of our route that went uphill pretty steadily for around a quarter mile. At the crest of the hill, I was amazed to see a long line of brightly-clad runners as far as the eye could see.
On either side of the road and the mass of runners, there were rows and rows of grape vines. In the distance, as the morning fog was rising, I could see the Mayacamas mountain range rising up from the floor of the Napa Valley.
There were mile markers, and water stops along with port-o-potties along the way. It was so pretty with the grapevines, and some beautiful old wineries, that didn’t really seem too arduous.
By mile 6, I ate one of my Cliff bars, and started to feel a little tired. But they had live music, mocha shots, and Gatorade, so it wasn’t too bad.
I just kept a really steady pace, and I listen to a lot of music, and that really helped my motivation.
Around mile 10, there was a stand on the side of the road, and two men were giving away glasses of Guinness beer.
At mile 11, one of my coaches, Dave, ran with me for a while and that was wonderful. The coaches for team challenge are amazing!
Soon after, there was a place where you could get glasses of wine, and that was pretty fun, but I didn’t get any— for fear of getting a headache!
At mile 12, we turned right and entered the small city of Sonoma. At this point people were lining the street, and urging us on, which was great. Both of my calves cramped up pretty badly, and I was kind of nervous. I could see the finish line ahead of me, and I thought I might have to sit down and not finish!
When I was within a few hundred yards from the finish, a coach from Seattle named Chris came along and ran with me — he could tell I was really pretty exhausted.
He was very calm when he told me to just take it easy and run slowly to the finish line, and then walk it off, which I did.
I have to admit, I did get a little choked up when I crossed the finish line, and I felt really proud of myself for living with Crohn’s disease yet still living my life to the fullest.
I’m still trying to make my fundraising goal—I have until August 21st and it’s a great cause!
I met so many amazing people through Team Challenge, many of whom are a lot sicker than I am. It is really inspiring AND fun. I really recommend this!
Running my first half marathon, in 2010, for the Crohn’s & Colitis Foundation of America was one of the most awesome things I have ever done. I was very proud of myself, but I realized I was mostly proud of my fellow runners, my mentor and my coaches—an inspiring group! I felt secure and happy surrounded by fellow Crohnnies and uc-ers! We laughed a lot, and encouraged each other during the race (some were walkers, too). I remember at mile 11, one of my coaches, Kate Devlin, urged me on, and I thought I would totally give up at that point, but I wanted to RUN. The whole thing!
The funniest part of my first Half Marathon . . . I became friends with my CCFA-fellow team members in my hotel, and we nicknamed ourselves the “Wardrobe Malfunction Team,” because I only brought my daughter’s running shorts that were tiny and I could barely get them on, and my roommate, Kelly Jackson—a fellow Crohnnie–and I were in hysterics in the morning at 5:30 a.m. when we had to get ready for the race, as I was yanking Emma’s shorts on to try to get them over my hips! Well, I got the too-tight shorts on, and got ready to run.
I did it (in something like 2–1/2 hours, but who cares—I finished and I did run the entire way). I met tons of people (there were over 5,000 runners!) who had serious cases of Crohn’s and UC. I will never forget how close we became and how they inspired me. I am thinking of doing it again…. DRUM ROLL PLEASE!!!!
Most research on digestion, and the associated bowel diseases that are unfortunately on the rise in the world, starts with food and chewing. They talk about the act of chewing (mastication), and how the food is broken down with saliva, and goes down the esophagus, where it then enters the stomach and is further broken down (peptides and stomach acid)—then the slowly digesting food enters the small intestine.
We get the basic science of food and sustenance. I am interested in what happens INSIDE the small and large intestines, and why, for some of us, the microbial balance is disrupted resulting in bowel disease—which, in some cases like Crohn’s can be incurable and a lifelong struggle.
The small intestine is in fact smaller (in diameter) than the large intestine. It is where vital absorption of nutrients for the body’s health occurs. I think of it this way— to use a road biking analogy—if your tires are inflated, and the road is smooth, the inner tube is fresh and new, your feet are on the pedals and the movement spins the wheel with a steady and productive ease, then your digestive tract functions as it should. All antigens, are dealt with swiftly, and promptly, with the T-helper cells, and white blood cells, doing their job like a little army of white-suited patrols, following behind you like a bicycle sag-support wagon. The road is flat—no bumps, or traffic jams, or debris!
An antigen is any substance that causes your immune system to produce antibodies against it. An antigen may be a foreign substance from the environment such as chemicals, bacteria, viruses, or pollen. An antigen may also be formed within the body, as with bacterial toxins or tissue cells.
I won’t bore you with the details… But I did get into an argument the other day with my friend, Geoff. He tends to be a “know it all,” but then again, I pretend to be one, too! I said, “the digestive tract is longer than a football field!” To which he replied, “You’re wrong, and that’s crazy!” Together we looked on Google and found that the length of the digestive tract is about 20-30 feet, which is the WIDTH of a basketball court!!
Duly chastised, I began to ponder the sports field/court analogy, and the physical image/link to gut disease…. We, especially Americans, “get” the length of a court or a football field — soccer, maybe not so much! The physical representation, or image, of the digestive tract spread out in one long line across a basketball court makes me smile and cringe at the same time. I love basketball, don’t get me wrong! My daughter played D3 ball, and I am a big Carolina fan, but last night I was watching the Duke-Maryland game (Blue Devils lost!), and my mind occasionally saw a black line across the court. . . .
Now that we know the length of the digestive tract, let me add by saying the small intestine is much longer, and more vital to our nutritional health. There is an excellent research site and description of the process from a bio-chemical perspective here.
Below, is a description of the process of digestion, and note that in Celiac disease, the villi is damaged and does not function as it should. For those of us who most likely have what Dr. Kalish refers to as sub-clinical gluten intolerance, or Leaky Gut (damage to mucosal lining), it is imperative to strengthen our immune system which can become compromised: lifestyle changes, supplements, and Eastern medicine are all great ways to help us balance and strengthen our immune systems. For us Crohnnies, the actual wall of the small intestine is damaged, for uc-ers, the large intestine is inflamed and irritated, but can be removed to alleviate symptoms.
The small intestine is a long and narrow tube about 6 to 7 meters (20 to 23 feet) long. Food completes its chemical decomposition in which a compound is split into other compounds by reacting with water in the small intestine with the help of the liver, pancreas, and intestinal glands who pour their secretions into it. In the small intestine, there are an enormous number of tiny projections called villi, which absorb the end products of digestion. Villi and folds in the walls of the small intestine cover the lining and greatly increases the surface for absorption, which contributes to the length of the small intestine. The human small intestine has a surface area about ten times greater than the skin surface.
The large intestine is wider in diameter but shorter than the small intestine. It is only about 1.5 meters (5 feet) long. There is no decomposition of food in the large intestine. Bacteria in the large intestine break down any quantity of proteins that have not been completely digested. The large intestine is mostly used to store feces or waste, which consists of 10 to 50 percent of bacteria, undigested cellulose of plant cell walls, minerals, and water. This is then eliminated through the anus. (Physics Factbook)
The circular bicycle wheel image, for me, is much more compatible with my idea of the function of the small bowel. The large snakelike image of the width of the basketball court helps to justify the length in my mind, but the real process—that of digestion—is vital to our health, and it is our job to keep the tires smooth and running.
Happy spring everyone! Get out your bicycles, and tune them up! April 1st marks the beginning if the “Living With Crohn’s & Colitis Bicycle Challenge”…. Please post your progress here, and on our Facebook and Twitter pages—if you can’t ride, try walking every day!
Last, but not least, if you want to support me in my Half Marathon for the Crohn’s & Colitis Foundation (www.ccfa.org) this summer, please check out my fundraising page. I am excited to run with Team New England, and you can read why, here….
Often, I write about the benefits of yoga in my ongoing daily practice as a way to alleviate stress, promote healing, and feel in harmony with the world around me. The words of my teacher, Pema Chödrön echo in my mind as I slowly let go and attempt to empty my mind and achieve a state of truly being present, she says:
…”feeling your heart, and greeting the next moment with an open mind can be done at any time: when you wake up in the morning, before a difficult conversation, whenever fear or discomfort arises.”
I am a Crohn’s disease patient.
In 2006, I had a partial bowel resection and I have been in remission for the past 5 years. I was very sick and weighed only 119 lbs on my 5 foot 8 frame (now I am up to 139-142 lbs.). One of my goals, in writing the book with naturopath Jessica Black, was to try to help people BEFORE they get full blown Inflammatory Bowel Disease, by educating them about diet and lifestyle changes that are vital to maintaining health, especially in today’s world where we are exposed to chemicals and stress. An anti-inflammation diet is key; drinking lots of water, sleep, exercise, yoga and meditation, are all ways to cope with Irritable Bowel Syndrome, ulcerative colitis, Crohn’s disease and other auto-immune diseases—AND having a positive attitude.
After my terminal ileum, ileo-secal valve, and a big part of my Sigmoid colon (that’s part of the large intestine that had been damaged by a fistula that had spread across my abdomen and formed a tumor, that was thankfully benign) were removed, it took me weeks to get back on my feet, and I took baby steps —like walking to the mailbox each day was a big deal!
Yoga and meditation have helped me find a much-needed balance in my life. I work for a publisher called Shambhala, in Boston, and I asked my (then) boss, Steve Dyer, what I should read now that I was home from the hospital and wanting to follow a Buddhist path. He suggested books by Pema Chödrön, and the first three books I read had titles that attracted me: When Things Fall Apart, Start Where You Are, and The Places that Scare You—I loved her voice, her compassionate way with writing in a style that made me feel like she was writing just to me. Her newest is called Living Beautifully with Uncertainty and Change. I highly recommend her, and also Saki Santorelli’s book, Heal Thyself.
But what about exercise?
The Olympics are inspiring, no doubt about that. It would take the harshest cynic not to like some of the back stories, too. When I was a kid growing up in Providence, I always watched with my father. We both loved the “Up Close and Personal” shorts about the athletes—they came alive in your living room, as if they were sharing their stories just for you.
After I had recovered from surgery, I kept looking for activities that would help me stay in remission, and exercise topped my list: hiking, walking, running, snow shoeing, cross-country skiing, swimming, kayaking….all became priorities, especially hiking. I began to get physically stronger and fit, gaining muscle and stamina (I had been a smoker with a twenty-year habit!). In fact, I got in better shape as I worked out all the time, and increased bone density (especially important due to my heavy usage of Prednisone over the course of the three years leading up to my surgery…not a good drug to take for that long!)
Running my first half marathon for the Crohn’s & Colitis Foundation of America was one of the most awesome things I have ever done. First of all, I can’t believe I ran THIRTEEN MILES !!! Woohoo. I signed up to fundraise, too, and raised something like 2,500!!! I was very proud of myself, but I realized I was mostly proud of my fellow runners, my mentor (Bethanne Ford Packard), and my coaches—an inspiring group! I felt secure and happy surrounded by fellow Crohnnies and uc-ers! We laughed a lot, and encouraged each other during the race (some were walkers, too). I remember at mile 11, one of my coaches, Kate Devlin, urged me on, and I thought I would totally give up at that point, but I wanted to RUN. The whole thing!
I did it (in something like 2-1/2 hours, but who cares—I finished and I did run the entire way). I met tons of people (there were over 5,000 runners!) who had serious cases of Crohn’s and UC. I will never forget how close we became and how they inspired me. I am thinking of doing it again….
I can’t wait to watch U.S. paddler Carrie Johnson, who will compete in the sprint events in the second half of the Games. Carrie is a personal hero of mine — she has Crohn’s disease, like I do — and it has not made her quit; in fact I think it has given her more resolve and focus.
I will post some photos… Me, with my Team Challenge pals (that’s us jumping up for the camera at the start of the race outisde Boston, in Canton, Mass.)…. And a video of Carrie Johnson that is so beautiful! and one more photo of me on one of my training runs (with one of my dogs, Topher) in the ‘hood.
Good luck to all the aspiring athletes out there! It really does help to exercise daily, for 45 minutes!