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…
Greetings from Vermont. I am the co-author of Living With Crohn’s & Colitis: A Comprehensive Naturopathic Guide for Complete Digestive Wellness (with a nationally-known naturopath, Jessica Black, ND). Our book has helped so many people afflicted with Inflammatory Bowel Diseases, part of the growing auto-immune diseases that cause diarrhea, bloating, nausea, vomiting, and cramping. These inflammatory bowel diseases, and other auto-inmmune disease are on the rise exponentially across the world, especially in the developed countries where processed food is available.
Think about it: There are certain behaviors that cause body/mind stress: We address this in the book, but I want to tell you that I am a patient/survivor of a stress-induced flare-up in 2006 that almost killed me. On my 5 foot 8 frame, I weighed 117 pounds. I spent a month at Dartmouth Hitchcock Medical Center. I was 45 and very sick, with 3 children at home and a business to run.
Stress was the way I worked, and I was on autopilot without taking time for myself. That has all changed, and I have been in clinical remission for the last 7 years! Let me tell you more….
As many readers know, I went to the Mayo Clinic in Rochester, Minnesota this past May to have a complete second opinion. I spent two days of my weeklong stay, at the wonderful stress reduction clinic.
Here are some of my tips gained from my research, and how I try to keep my disease in remission:
A lot of us have low level stress. Most of us don’t live in the hyper-aware world, and we suffer the autopilot behaviors that contribute to what I call “the slow burn of stress response.” Our heart rate and blood pressure might be elevated, and our breathing and muscle tension is like this — shallow breathing and knots in muscles. There is an area at the base of the brain called the amygdala. This is the seat of our emotional reactions, or “flight of fight” response to stress. Many Americans live with this elevated, but low level elevation daily… a little bit of “Flight of Fight” stress is really okay, but not on autopilot.
Look at our brains — In our pre frontal cortex, there is an area responsible for relaxation, and it is not easy to stimulate and not an adrenal release, as per the amygdala part of the brain.
First we need to be aware of this pre frontal cortex We have to explore our own behaviors and habits, break out of autopilot, and participate in a personal practice. There are some things you can’t control, like weather or traffic jams; however there are some things we can control, and are important… An example from the workshop was if you have an overbearing mother (don’t worry, Mom, not YOU!), and how you need to take care of yourself first and use the excuse of health, and scale down. Awareness helps, and limit your exposure to stressful people and situations. It’s a process… keep boundaries in your mind, but “caring boundaries.”
Unhealthy responses to stress in our life are anger, etc. It is important to develop a healthy exercise routine, learn and use relaxation techniques (see below), and take care of yourself. This neural pathway gets easier and easier to tap into (see diagram at right). For example, my body knows and relaxes immediately when I walk into my home “yoga area” where I have a TV, and a carpet with a yoga mat. I use Rodney Yee’s DvD, “AM/PM Yoga,” and do the exercises every day… it gets easier and easier to tap into the relaxation part of my brain, and it is replenishing.
After a stressful day:
- Call a friend
- Read a book
- Walk the dog
- Ride a horse
- Volunteer at a soup kitchen
- Play the piano
- Do some gardening
In order to break out of autopilot, do a few things on this list on a regular basis.
Benefits: Concentration, Problem solving, Sleep…
We need to be participants: This involves “letting go of the wheel,” loosening your grip, and takes time and experimentation.
In the wonderful workshop, our instructor gave the analogy of flying on an airplane, and how you put the oxygen mask first, then help the child.
Talk therapy is another way to help relinquish the autopilot lifestyle… A regular monthly session with a trained, recommended therapist will do wonders for helping to care for yourself, establish boundaries, and feel safe.
Evaluate your stressors and prioritize your time, as you move forward in the break from autopilot.
Give yourself permission eg., “Be kind to yourself and ask for help.”
Often we don’t think about our career as a choice made for healthy reason, and it might be time to reevaluate what we do for work.
It is important to spend time with friends, develop hobbies…. Hanging out with people who make me laugh is a goal. A hospital study involved a control for two groups with the same malady: One group watched funny movies every day, and got out of the hospital faster.
It’s a process, and it is important to practice positive self talk.
Start a simple practice of Tai chi and chi gong
Walk around with a gentle smile on your face and try to share it with strangers—you use less muscles and tension when you are not frowning, which can contribute to an overall sense of well-being and a way to focus on releasing the internal stress caused by being on autopilot…
I have found this “small smile” technique that is practiced by Amit Soud, MD, the head of the Eastern Medicine Section of the Mayo Clinic to be essential as a way to lessen internal stress.
TAI CHI AND CHI GONG: These ancient exercises are easy and relaxing, often available in small towns across the United States. For example:
We breathe with about 40% of our lungs. If we can learn to take slow diaphragmatic breaths, we can effortlessly lesson our stress levels. These exercises are the foundation and essential for relaxed breathing.
A simple exercise I learned at the Mayo Clinic:
Take in a slow deep breath,
and fill your lungs so even your belly sticks out;
hold for a couple of seconds;
pretend you have a lit candle and exhale
so that the candle flickers.
Note to reader: it might take 8 weeks or so to start seeing results.
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.
waiting for the doctor
April 30 Tuesday 4:30 PM
I am waiting for Dr. Jeffrey McCurdy and he will review my case with me.
Monday I had a CAT scan here at the Mayo Clinic. I had not eaten for 24 hours, due to the requirement to be fasting for my appointments. I think because of that, I ended up fainting.
I could tell I was feeling a little sick, and the staff was incredible — they were so wonderful. Anyway, I was wheeled into the CAT scan room, and my technician James even joked with me about me fainting (word had spread!).
They are all incredibly nice here at the Mayo Clinic. The buildings and the grounds are really quite spectacular. It reminds me of an unknown Mecca of sorts, or a place where people go to pilgrimage. It is interesting that my son, Sam, is on a pilgrimage called El Camino de Santiago, in Spain, at this time. There are so many people here, from all over the world—many of whom are very sick, or caring for a loved one who is sick—and there is a sense of the fragility of life around me here, but also the indomitable spirit of the patients in search of extending their lives or, as in my case, improving the quality of life.
So, while I’m waiting for Dr. McCurdy, I am prepared to take in the news that they will recommend that I take medication. On the other hand, they may suggest some alternatives. I have no idea!
After the affable, and highly intelligent 30-something, Jeffrey McCurdy, MD, arrived he sat down and showed me my blood work results (spectacular were his words!), and my CAT scan results (not so great, in his words), the medication, IMURAN, is recommended by the GI team here at the Mayo.
My Tpmp is normal, so they say I can take the maximum dosage. (Thiopurines are a class of drugs that suppress the immune system. Examples include azathioprine, mercaptopurine, and thioguanine. These medications are used to treat diseases such as acute lymphoblastic leukemia, inflammatory bowel disease, and autoimmune disorders. They may also be prescribed to patients who have had organ transplants to help delay or prevent organ rejection. This test detects the activity level of the enzyme thiopurine S-methyltransferase (TPMT) in a person’s red blood cells. The activity level of TPMT is associated with the ability to effectively metabolize thiopurines.)
Dr. McCurdy explained that I have a high “Rutgeerts” score of 3 on my colonoscopy, which is indicative of inflammation that they usually treat aggressively.
Blood work checks will be frequent to monitor my side effects. Uncommon side effects are rare, but can be severe. Flu-like symptoms (most common), headaches, joint pain can be severe, fevers, pancreatitis, elevated liver enzymes (blood work will be checked for this). There is also a possibility of a decrease in my white blood cell count, which helps you fight infection. They expect it will go down… Mine is currently at 6.4 Leukocytes (might go down as low as 3.0).
Very uncommon risks are as follows: Cancer risk for skin cancer, so skin exams yearly are recommended. Also, there is an slight increase in the possibility of lymphoma—When I asked him to explain, he provided an analogy of a busy street corner, with 2 out 10,000 passersby might have lymphoma. With IMURAN, this chance increases to 4 in 10,000.
Of more concern is the inflammation in my body. I can develop perforations, strictures, flistulas, and abscesses due to bowel perforations. Having active inflammations increases my risk of cancer, which is exceedingly uncommon in the small bowel, but worth noting. If Dr. McCurdy were in my shoes, he said he’d do both medications at once: Remicade and IMURAN. But, he also spent hours reviewing my case with Dr. Tremaine, and since I’ve been 7 years out of surgery, I have a better argument for not taking the two types of medications recommended by Dr. Corey Siegel at Dartmouth. In 2010, my histogic (tissue) endoscopic test was minimal, showing only 4 ulcers, scoring a “Rutgeerts” score of 1.
For me to decide medications, it is highly individualized, and they know I’m in line with alternative medicine. Given my individual history and predications, they recommend a one year duration with a colonoscopy to show results. (I.e., one year before investigations.) using the maximum dose of Imuran.
Right now, I would need to be on it indefinitely. When medication is stopped, the disease tends to comes back, and some people may no longer respond to that medication should they go off and develop a recurrence.
In Crohn’s disease, they know that for causes genetics is involved, and environmental factors. However, there is no known cause or cure. Parasites activate a certain arm of your immune disease, but it is very unlikely it would cause a disease such as Crohn’s. No single organism is ID’d as a causative agent. Fecal transplants and worm therapies are being studied. Only case studies available: meaning when studies are positive, they are quick to publish, so there is sometimes a publication bias. It is important to report positive-negative outcomes to determine efficacy. He said he worries about safety with introducing pathogens (like worms!); and they need more information on safety profiles.
The SCD diet (specific carbohydrate diet): science on this is not conclusive, according to Dr. McCurdy, and diet depends on state of bowel disease.
They know that for many patients animal fats, simple sugars, and shellfish can contribute to the disease. My disease is characterized by inflammation.
Dr. McCurdy has little experience with herbal remedies. He said to be careful with anti- inflammatories like Advil and Ibuprofen, because they can make Crohn’s worse.
Lots of his patients use Vitamin D (in patients that are deficient), with good results, but not using therapeutically, though there are recent studies on vitamin D and Crohn’s specifically.
If I wait, I’m running risk of developing strictures, flistulas, and a possible bowel obstruction. I already had an internal fistula in 2006, but I could develop cutaneous (out of skin), or vaginal, fistulas, or other connections from one organ to another, which are symptomatic of Crohn’s. again, he noted that I am symptom free, except for the endoscopic and CAT scan tests.
Dr. McCurdy just did a presentation on new therapies that use different mechanisms of action in clinical trials. These are years out, he said.
I have swollen lymph nodes around my disease site: any time you have inflammation, your immune system starts in the lymph nodes, like in a common cold when your lymph nodes swell. I have inflammation around 10 cm of the neo- terminal ileum.
They don’t want me to loose anymore small bowel because of problems with malabsorption, especially Vitamins and minerals.
So, that’s the report…I guess I was hoping that my CAT scan would have been better. It is really hard to live with a disease and not see improvements.
My next stop is the Integrative medicine round, and I will explore a lot of alternatives—for sure!
Stay tuned for Day 3, where I visit the Stress Reduction & Relaxation Clinic at the Mayo…
When Jessie and I teamed up to write LWC&C, we expected it to be a great resource, but to tell you the truth, I, personally, didn’t expect to really have people email me and spontaneously write reviews. Here is a review that came in today—shoutout to Amy on Goodreads!—and I have to say, I am so gratified to hear t hat the book is helping people deal with the sudden onset of a flare-up, as in her case, and it the seeming empowerment provided! Here is what Amy wrote:
06/26 Amy gave 5 stars to: Living with Crohn’s & Colitis: A Comprehensive Naturopathic Guide for Complete Digestive Wellness by Dede Cummings
status: Read in June, 2012
Newly diagnosed with Ulcerative Colitis and a scary 10 day stay in the hospital. I had ordered this book before the flare had happened not really understanding what I was dealing with or how serious my situation would become. The book arrived while I was in the hospital (My very supportive boyfriend read it and brought it to me to read when he finished) .
I really appreciated the personal insights given by Dede. It’s very well written and easy to understand. I feel like I have a much better understanding about what is going on in my body. As well as a great resource that i will be able to keep going back to with great tips on how to heal yourself . I really appreciate the focus on balance in the whole body and the combination of eastern/western medicine. I’m very glad I chose this book in my quest to learn more about what is going on with my body. If you have Crohn’s or Colitis or know someone that does I suggest you read it !
I just want to personally thank Amy! It takes courage to speak up, and start the healing process for herself—one way to start getting better is to ask for help, keep a journal, and educate yourself. Let’s face it, the busy GI’s don’t have a lot of time to hold your hand, and guide you every step of the way . . . I wrote the book to help people like you empower themselves.
What is cool, is when the patient starts to take control! That is something that leads to better health, in my experience. One site I go to frequently, via RSS feed, is my friend, Adam’s, called IHAVEUC. Adam just published his own book, and I recommend that, too. He has a great way of making you feel not so alone! Also, there is a new video on his site about his book, and his own story. A recent post from a business school student, 24 years old, really caught my attention: He is trying to take control of his life and integrate alternative therapeutic healing modalities into his gastro-clinic care. Here is the link to ihaveuc.com. Enjoy and don’t be shy!
So, this “patient-taking-control” idea, has me thinking:
I went to the ER recently (for Poison Ivy), and the doctor said, “You don’t really seem like someone with the Crohn’s personality.” ????? huh??????? is the UC/IBD personality something doctors talk about behind our backs? I’d love to hear others’ experience about this!
I have a recent article from this week to post, also, about the multitude of bacteria that lives in the gut, and it is posted here—VERY interesting! I suffered from giardia when I swam in a river that was polluted with animal feces (not fun! and I had no idea…), which caused me to experience my first severe flare-ups of Crohn’s-Colitis, back in the 1990s . . .
The article is from a cool blog, called Gizmodo, that my son, Sam, found (thanks to my family and friends for always thinking of me, and forwarding me breaking news!), and I think it shows the link between gut fungus to IBD! Hooray, the scientists are getting going on a new frontier.
And, I firmly belielve that the gut has a “mind of its own.” (Read The Second Brain, by Dr. Gershon.) Dr. Gershon is chairman of the Department of Anatomy and Cell Biology at Columbia University’s College of Physicians and Surgeons at the Columbia-Presbyterian Medical Center in New York City and is a pioneer in research related to the gut/ brain relationship. In his book, he presents a combination of neuroscience and gastroenterology that I find fascinating. Dr, Gershon has devoted thirty years of research to this “brain in our bowel” science, and his writing is persuasive and passionate. In contemplating the body’s balance and harmony, one is struck by the simple connection between the brain in our head and the brain in our bowel.
I’ve often wondered where expressions like “I feel it in my gut,” or the ubiquitous “butterflies in my stomach,” came from. As a layperson, writer, and Crohn’s disease patient, I am fascinated by the connection between the brain and gut.