According to the Mayo Clinic, after you eat, it takes about six to eight hours for food to pass through your stomach and small intestine. It takes a total average time of 43 hours from eating to stool elimination—I like that they call,this “transit time.” Food then enters your large intestine (colon) for further digestion, absorption of water and, finally, elimination of undigested food. After I researched this topic, I thought about how proper digestion is integral to maintaining good health — vital, really. I am interested in hearing from readers about exploring their own relationship to food. Start when you were young, or when you were first diagnosed. I recently discovered the amazing work of Crohn’s patient, Daniel Leighton. He openly explores his disease through his art, and I was blown away—his piece entitled “Tied Up at the Hospital” is superb (heartbreaking to me), and I encourage you to follow his work. So, let’s use ART to share our experiences! I use creative nonfiction, and writing has always been my release—in our book, Jessica and I encourage patients to “keep a food journal,” but now I also want to encourage patients to explore their disease, their relationship to food, their fears and loneliness, humor and love, through making art (photography, poetry, writing prose, painting, video, drawing, etc.). I can’t wait to publish some of these works! (Email me at email@example.com.). Okay, I will start off with a piece of my own creative nonfiction:
How my longing for food — my lifelong love affair with what I could, or could not, eat — began.
I was longing for food, literally desperate for the half-eaten slices of pizza left on the plates at a restaurant off Harvard Square. I was a 26-year-old bulimic, and food was my secret obsession. Who doesn’t love the hot-out-of-the-oven, doughy-crust pizza with fresh-grated mozzarella garnished with chopped basil leaves?
The revelers had straggled out of the room after a private engagement party. I told my boyfriend I had forgotten something, and walked back in through an arched doorway. The jukebox finally playing the Bonnie Raitt song, “Somethin’ to Talk About,” I had selected earlier. I stood there and gazed around the room: it looked a hurricane had breezed through around 60 knots with chairs overturned and crumpled napkins scattered about….
But it was what was on the paper plates that caught my attention: I made my way along the tables and grabbed slices of pizza and—gazing back at the arched doorway to see if anyone was coming — I scarfed them down and pushed the food into my mouth with both my hands like a refuge from war-torn Biafra.
You see, I didn’t know it then, or perhaps that was when I knew something was the matter with me. I was skinny and sick; mentally obsessed with a longing for food that occupied my thoughts much of the time.
A morning run along the Charles River was the usual start to my day—I loved this and felt so light as I jogged the worn paths past the brick buildings of academia. After my run, my reward was half a honeydew melon and a cup of coffee. Then I’d ride my bike to work at the publishing house on Beacon Hill. At lunch, I ate dry salad, and when I came home in the early evening, I ate popcorn with brewer’s yeast with Diet Coke.
Why, you may ask, did this young woman who was outwardly happy—a job in publishing, a boyfriend who had returned after a year hiatus, a loving family in nearby Providence, Rhode Island—resort to eating leftover food from people’s plates in public restaurants?
Having a mother who apparently subsisted on candy bars was one thing, a father who talked obsessively about food and his inability to loose weight, was another. “Am I fat?” plagued me throughout my adolescence.
My family prided themselves on being thin and fit, with tennis, riding, and golf practiced at various clubs—and at school, we played field hockey. Going to an all-girls high school had the added benefit of questions like “You Haven’t Gotten Your Period Yet?”
After high school, I took a year off from attending the non-existent college that my parents pretended I’d been accepted to. I headed to Vienna, where Weiner Schnitzel, Würst, pastries, and beer were to form the main ingredients of my diet, and after a few short months, I weighed 170 pounds.
When I returned from Europe after a year, my father announced that I had gained the “Freshman 15-times-two,” without attending college!
I remember the day I landed at Boston’s Logan Airport. My mother and one of my little sisters, Alex, stood there at the gate. My mother had her kerchief on, covering her wig at the top of her head that gave her that ’70s bouffant look; she was wearing her big Jackie O shades and had one of those purses that look like a small picnic basket with flowers painted around the edges clutched under her arm.
“Guüten Tag, Muttie und meine kleine Schwester!” I called gaily.
I walked toward my mother and sister and watched their mouths drop open. I was around 180 pounds at that point, my hair was cut in an ill-fitting pageboy, and my skin was dark brown from a summer spent sleeping on the edges of fiords after hiking around Scandinavia. They had no idea who I was!
The reality of my situation—home after 12 months after living on my own in Vienna and traveling around Europe—was horrifying to me! I was so heavy the buttons on my Indian print button-down shirt were almost popping off.
The whole way home in the car, I only spoke German, trying to explain to my mother that I had “forgotten how to speak English!”
I also liked this “no food/empty stomach” feeling I had in the car that afternoon when I returned, a stranger to my family, back from my year off, and I wanted it to last.
I retreated to my bedroom and unpacked my Kelty backpack, holding back the tears that I knew would never come.
This piece is excerpted from Spin Cycle by Dede Cummings, a creative nonfiction work-in-progress to be published (hopefully!) in 2017.
I would definitely recommend getting another opinion. I got two!
One of our readers wrote to say her doctor told her she “shouldn’t feel any pain from UC.”
Pain is a bi-product of both Crohn’s disease and ulcerative colitis. My disease caused pain when I flared—it even felt like labor pains! I have Crohn’s. My disease is characterized by scarring—called fibro stenotic disease. UC does not usually go through the outer wall of the large intestine the way Crohn’s does with the small… So some people don’t have pain, but have diarrhea instead.
Remember, everyone is an individual, and we have different symptoms and react differently to different foods, or stress, for example. I (Dede) always say this: listen to your own body, ease off on trigger foods, like dairy or wheat, be proactive in your health care and do research and ask questions. Bring a list, and a partner or a friend, to your doctor’s appointments.
One time, I brought my husband, and he had done all this research (he’s an English professor ;)… at one point in the meeting, the gastroenterologist leaned over his desk and said to my husband, “Hey, what do you have on that drug?”
One thing to be aware of: getting off Prednisone. Did your doctor tell you to taper off slowly? My GI did. I love my team at Dartmouth Hitchcock in NH, it’s important to find a clinic and doctor you can trust who really listens to you!
Diet—yes, can cause pain and symptom flares. Don’t let a doctor fool you! Listen to your own body!
There is an excellent website-forum called www.ihaveuc.com and you should “tell your story,” and pose any questions you have there, also.
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.
Having returned from Mayo, I want to post a quick update…. I’m good, under the circumstances—not going to let having this disease change things too much. I saw my GI at Dartmouth yesterday. He was surprised I went to the Mayo Clinic, but understands how seriously I consider taking DNA-altering drugs, and drugs that affect my immune system, etc. His colleague, Corey Siegel, is doing a study of using a different kind of Tumor Necrosis Factor (Alpha) inhibitor (big fancy words I am loving to say, but suffice it to say it is human and not mouse-tissue based); the results of which will be available in a few weeks. They want me to wait since I have no symptoms, and waiting is what I do best!
Dr. Bensen said if I take the drugs, they are seeing the best results with the TNF(A) Biologic (he mentioned Humira) (also Remicade and Cimzia), combined WITH the immunomodulator, 6MP, for the best results for full remission, at 40-60%. He said if I take the Imuran alone, my chances of getting results are not as efficacious. This, I do understand. He feels the Mayo Clinic’s recommendations are not fully in line with his, and Corey Siegel’s, “front-line” offense approach.
In the meantime, I am (seriously!) looking into taking whipworms….you know how much I love creepy crawly things! Seriously, there is a new study, and you can read about it here.
It is nice to be back home in Vermont…. The day I left Rochester, Minnesota, there was a blizzard and they got around 13 inches of snow in MAY!
I am working on a longer post about the stress reduction class I tool, the Eastern medicine and work of Amit Sood, MD, and the integrative medicine at the Mayo Clinic.
Here are a few more photos from Mayo (top, Fish, by Gordon Gund a patient; bottom statue study for the “Les Bourgeois de Calais,” by Aguste Rodin…a huge statue that is very powerful and stands in the middle of a busy atrium cafeteria looking anguished; and last but not least, the dancers I really fell in love with in the hallway near the blood work laboratories!)…
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…
I am waiting for Dr. Jeffrey McCurdy at the Mayo Clinic — I will see him this morning April 29 at 8 AM.
I arrived last night at 6:00 pm at my hotel the Kahler Grand in Rochester Minnesota, having departed from Hartford airport in the afternoon. The flight was an easy three hour flight. The people here are extremely friendly so far.
I am not nervous, in fact I feel very confident. When I got here I was very impressed by the architecture and the huge buildings of the Mayo Clinic. Everything is so beautiful here: the artwork on the walls and the whole ambience of the place.
Dr. McCurdy was great. He’s from Canada. He is in his early 30s. He asked me tones of questions about the history of my disease. He was very thorough, and I got a complete physical exam.
My weight was 138, my blood pressure was normal, and my first rectal examination was normal. Around 40% of Crohn’s patients have some sort of anal-rectal problem. Things like fistulas or discharge. Luckily, for me, I do not have any problems there.
Enterography Is a possible test they might perform, according to Dr. McCurdy.
A new study from Rhode Island Hospital has found that MR enterography (MRE) without the use of an anti-peristaltic agent was as reliable as CT enterography (CTE, or CAT scan) in determining the presence of Crohn’s disease “without the use of an anti-peristaltic agent.”
In other words, this test exposure to ionizing radiation is less invasive, especially for children who are prone to absorbing more radiation than someone in their 50s like me!
Disease reccurrance after Crohn’s surgery is the rule, according to my doctor, at around 90%, and it comes back in 2-3 years. Patients can be asymptomatic but have disease.
I have gone 7 years!
Dr. McCurdy noted that “treating for mucosal healing is the best chance I have without complications.”
He also gave me my options and course of testing:
“So there are number of predictors that we have determining who’s going to have a more aggressive disease course: clinical predictors, imaging predictors. as well as other diagnostic tools.”
In the clinical predictors, he said, there are patients who have had several resections who have symptoms that come back immediately after the resection as well as people who don’t have any symptoms.
Endoscopic predictors (colonoscopies) are the best predictors of who will have no complications in the future.
In 2008, a Belgian clinician, Paul Rutgeerts, MD, developed an endoscopic score to predict who will develop problems in the future and it’s based on how much inflammation is found in the scope. So a Rutgeerts scored of 0 means zero inflammation; a Rutgers score of 1, which is what I had in 2010, showed some inflammation.
More than 5 ulcers and confluent inflammations — that would be a Rutgeerts score of 3 — that’s what I have now….A Rutgers score of 3 or 4: that’s when you start to get worried about future complications. Since I have a Rutgeerts score of 3, that predicts — with about 75% predictive value— that I will develop problems with Crohn’s disease in the future.
“So that’s what we have to go by,” he said, “and when you’re working with medications, you only think about people that need medications, and we also think about those clinical predictors, as well as disease recurrence in some patients that require surgery.”
If patients score less on the Rutgeerts scale, and they have a lower risk profile, they don’t need any medications; and in these patients that don’t take any medications, they scope from 6 to 12 months after surgery and look for that Rutgeerts score, which is what they’ve been doing with me up at Dartmouth.
I have no symptoms, but Dr.McCurdy said I have significant disease at this time, which is predictive of problems down the road.
The question they have now is how long has this disease been spreading, and how extensive it is.
The more extensive it is, the more aggressive they are with medications —if it’s a very small segment, then it is very reasonable to consider surgery, if I want, but the risk of surgical adhesions is high.
Dr. McCurdy will determine how long that segment is by doing what what’s called CT enterography which is a special scan to look at the small bowel.
“Okay, so what we should do this,” I added.
He said we should also get my biopsies from November, to look at the pathology slides to make sure that they confirm that this is Crohn’s disease and nothing else.
He added, “then I always do a routine blood test to check vitamin D levels and B12 levels, as that’s the area that’s been removed called the terminal ileum (he pronounced it with a long “I” sound and when I asked him, he said he is the only doctor who pronounces it “eye-leum”).
He added that whether we should be using medications, or whether we recommend surgery or no medications at all, will need to be determined…
“At the end of the day,” he added, “we will recommend what we think is best for you, and then you’re the one who ultimately makes a decision on what you do based on your values and what you think.”
He said, “I will give you several options what I think is the best approach based on the current literature and then you can make a decision on what you think sounds okay.”
More to come!
I am leaving today until Thursday …. It’s for a good reason: Mayo Clinic for a second opinion on just how “severe” my Rx is. I already love them — the GI nurse calked to schedule me for stress management & relaxation class, also Tai Chi, Chi Gong (begin the video at 0.26), and a sleep workshop!
In addition, I will be in the hospital Monday for tests, too. I plan on recording my meeting with Dr. Tremaine, so I can really focus on what he says… there is a study that says patients only retain about 30% of what the doctor tells him when they deliver a diagnosis… fear, anxiety, etc., can cause this…. I guess that should be pretty obvious, but I am going to be prepared.
This is a good thing! Preventative and integrative medicine, as it should be . . . more to come.
Thanks for all your support…