A New Diet…. Begun just over four weeks ago, is really helping! I am inspired by my friend, and fellow Crohnie, Katy Haldiman, RN, MS, The Paleo Nurse, and my consultants, Jordon Reasoner, and Steve Wright of SCD Lifestyle, to try a simplified diet to help my recent recurrence of Crohn’s from spreading.
Crohn’s is not easily deterred. I was so lucky to have seven years of clinical remission. It was only in the last year, that my disease spread. My last seven years have been filled with hope and health, and it is easy to fall into despair when the doctors tell you that your disease has gone from nonexistent to “severe.”
Rather than saying “Woe is me,” and spending time feeling sad and useless (I did a lot of that, believe me), I decided to take action, and try to live the words of the Dalai Lama:
“Scientists say that a healthy mind is a major factor for a healthy body,” His Holiness said. “If you’re serious about your health, think and take most concern for your peace of mind. That’s very, very important.”
That said, I am on my way to health, for sure—no time to sit on my cushion meditating (I do that daily for a few minutes still); rather, I need to stay focused and take care of my body: better food, sleep, stress relief, education, awareness, team building, satisfying work, making money enough to live on, giving back to my community and the world…working for peace, justice, and environmental sustainability. According to His Holiness the XIV Dalai Lama, peace of mind is essential for health—words to live by.
This new diet, very much like The Paleo, is giving me strength and vitality. It is not for everyone—and I always tell people you must proceed with a doctor’s knowledge, for Crohn’s and UC can be serious, even fatal, if not managed correctly. I have worked really hard to form a collaborative team—my own book’s co-author, Jessica Black, ND, is my stalwart supporter and her book, The Anti-Inflammation Diet and Recipe Book has just come it in a second edition and has sold almost 100,000 copies! Jessie is an amazing health practitioner.
I have eliminated ALL grains and dairy from my diet—woohoo! What a difference. I found this great site, and I can use almond meal flour (also coconut flour), and I eat fruits and veggies, nuts and animal protein pretty much non-stop. I had an adjustment for the first week, as I really missed my oatmeal in the morning, but as you can see from the photo, my morning meal is wonderful and tasty, too.
I hope this post inspires people to look at their own diets, and proceed with caution (this diet is not recommended if you have flare-up symptoms of Crohn’s or ulcerative colitis). I began this diet with no symptoms, and after the first week, I started to feel like I had more energy, and my stress levels are kept low by walking 4 miles a day and sleeping 8 hours per night.
I’ll post some more photos of my wonderful meals… Summer is the best time to do this diet: only organic fruits and veggies and meat must be antibiotic-free, grass-fed…that whole thing! I buy all local meat, eggs, fruits and veggies… And I plan on putting up and preserving a lot of them this summer so I can continue summer’s bounty from my freezer (and canning room) during the cold Vermont winter!
I also have a nice little garden growing…. Kale, and more kale! Plus, tomatoes, green beans, lettuce, spinach, onions, asparagus, etc. growing your own food is another way to reduce stress and get physically fit—gardening is good for upper body strength!
I have been taking probiotic powder for many years. The new research on gut bacteria recently, and hype around probiotics, makes it imperative for consumers — and those of us with IBS or IBD, — to know why and how we should take the supplements.
I am a big proponent of getting vitamins and minerals from diet, and vitamin D from the sun, but sometimes we may be compromised (like missing the most important segment of small bowel, the terminal ileum, as in my/Dede’s case), and need to supplement. Probiotics are found everywhere in our diet — fermented food is a great source — wheat, coffee, bananas, onions, garlic, honey, and of course, yogurt and kefir.
The grocery stores and markets are rife with disclaimers of “Probiotics! Added to Everything!” So, what do we do? How do we know what is best?
I asked my co-author, Jessica Black, ND, to come up with a simple description I can pass along to our followers and readers…. Here is what she wrote, and I hope it is helpful:
Probiotics are essential to proper GI function. Probiotics help maintain a healthy barrier between what we ingest and what gets through to our blood stream. Probiotics play a large regulatory role in the GI lining immune system, which sets the stage for the immune system balance throughout the rest of the body.
Probiotics restore proper gut ecology – the proper balance of all important microorganisms lining the GI tract.
I also excerpted the section in our book on probiotics, and feel free to send an email to request a PDF of the full article (email@example.com).
Last, but not least, my brand is called UltraFlora “Synergy” probiotics made by Metagenics (I buy from the naturopath, but here is link: http://www.metadocs.com/products/detail.asp?pid=86
It is a 50-50 blend of Lactobacillus acidophilus and Bifidobacterium lactis, a highly viable and pure strain, also dairy-free and gluten-free. It has 15 billion live organisms, and needs to be refrigerated in order to retain its efficacy.
Good luck! Questions or comments welcome, of course.
Inflammatory Bowel Disease (Crohn’s & Ulcerative Colitis)
Our first-ever “guest post” on Dede’s blog! Drew and I “met” through Dede and Jessica Black, ND’s Facebook page, and Dede invited him to educate our readers and followers about the benefits of accupuncture. WTG, Drew! This is like a new book we should publish! A very thorough examination of signs and symptoms of Crohn’s and ulcerative colitis, along with specific treatment plans for acupuncture. Since Dede (seriously) is a wimp when it comes to needles (also, working on this using Ayurvedic treatment to help with this possible symptomatic “sensitivity” on the skin, which is very likely bowel, related, since the skin and the bowel ARE related!~)…Please welcome Drew, and share this, and come visit him if you live in the Southern California region—like our friends at the CrohnsJourneyFoundation.
Inflammatory Bowel Disease is a heading/umbrella that has other diseases underneath it. You may have heard of Crohns Disease, Ulcerative Colitis and Irritable Bowel Disease. You may know someone who’s been diagnosed with one of these or you may have had one of these unfortunate afflictions. In any case these can be serious debilitating conditions that sometimes require extreme care for severe cases but all require long term care. In this article I will discuss the differences and similarities between the three.
Crohn’s Disease: A chronic inflammatory condition of the intestinal tract was first described by Dr. Burrill B. Crohn in 1932, along with Dr. Leon Ginzburg and Dr. Gordon D. Oppenheimer. Mostly affects the end of the small intestine called the “Ileum” and the beginning of the colon/large intestine “Cecum” but can affect the entire length of the GI tract. Crohn’s disease can affect the entire thickness of the bowel wall leaving “skip lesions;” whereas, Ulcerative Colitis only affects the superficial layer of the large intestine.
Ulcerative Colitis: A chronic inflammatory disease that affects only the Large Intestine (aka: colon). The lining of the colon becomes inflamed, and ulcerations occur which bleed and produce pus.The inflammation and the ulceration lead to spasms, cramping/pain and frequent bowel movements.
Like Crohn’s Disease Ulcerative Colitis is an autoimmune disorder where your body attacks itself.
Symptoms related to inflammation of the GI tract:
• Persistent Diarrhea
• Rectal bleeding
• Urgent need to move bowels
• Abdominal cramps and pain
• Sensation of incomplete evacuation
• Constipation (can lead to bowel obstruction)
More severe symptoms:
• Fissures in the lining of the anus (tears)
• Fistulas (tunnel from one loop of intestine to another or connects the intestine to the: bladder, vagina or skin)
Symptoms related to inflammation of the Colon:
• Bowel movements become looser and more urgent
• Persistent diarrhea accompanied by abdominal pain and blood in the stool
• Stool is generally bloody
• Crampy abdominal pain
General symptoms that may also be associated with IBD:
• Loss of appetite
• Weight Loss
• Night sweats
• Loss of normal menstrual cycle
Types of Crohn’s Disease:
• Ileocolitis: The most common form of Crohn’s, ileocolitis affects the end of the small intestine (the ileum) and the large intestine (the colon). Symptoms include diarrhea and cramping or pain in the right lower part or middle of the abdomen. This type is often accompanied by significant weight loss.
• Ileitis: This type affects only the ileum. Symptoms are the same as ileocolitis. In severe cases, complications may include fistulas or inflammatory abscess in right lower quadrant of abdomen.
• Gastroduodenal Crohn’s disease: This type affects the stomach and the beginning of the small intestine (the duodenum). Symptoms include loss of appetite, weight loss, nausea, and vomiting.
• Jejunoileitis: This type is characterized by patchy areas of inflammation in the upper half of the small intestine (the jejunum). Symptoms include mild to intense abdominal pain and cramps following meals, as well as diarrhea. In severe cases or after prolonged periods, fistulas may form.
• Crohn’s (granulomatous) colitis: This type affects the colon only. Symptoms include diarrhea, rectal bleeding, and disease around the anus (abscess, fistulas, ulcers). Skin lesions and joint pains are more common in this form of Crohn’s than in others.
Types of Ulcerative Colitis:
• Ulcerative Proctitis: For approximately 30% of all patients with ulcerative colitis, the illness begins as ulcerative proctitis. In this form of the disease, bowel inflammation is limited to the rectum. Because of its limited extent (usually less than the six inches of the rectum), ulcerative proctitis tends to be a milder form of ulcerative colitis. It is associated with fewer complications and offers a better outlook than more widespread disease.
• Proctosigmoiditis: Colitis affecting the rectum and the sigmoid colon, the lower segment of colon located right above the rectum. Symptoms include bloody diarrhea, cramps, and a constant feeling of the need to pass stool, known as tenesmus. Moderate pain on the lower left side of the abdomen may occur in active disease.
• Left-sided Colitis: Continuous inflammation that begins at the rectum and extends as far as a bend in the colon near the spleen called the splenic flexure. Symptoms include loss of appetite, weight loss, diarrhea, severe pain on the left side of the abdomen, and bleeding.
• Pan-ulcerative (total) Colitis: Affects the entire colon. Symptoms include diarrhea, severe abdominal pain, cramps, and extensive weight loss. Potentially serious complications include massive bleeding and acute dilation of the colon (toxic megacolon), which may lead to an opening in the bowel wall. Serious complications may require surgery.
Causes and who’s affected:
As many as 700,000 Americans may be affected by Crohn’s Disease and Ulcerative Colitis. It is equally common in men and women and while it can affect a person at any age there is a higher risk during the years from 18-35. The cause of IBD is not fully understood but there is a connection between diet and stress; as well as hereditary, genetics and/or environmental factors that play a role in the development of IBD. Studies have shown a greater risk of 5-20% increase in someone acquiring this disease if a “first-degree” relative (parent, child, sibling) has it and an even greater chance if both parents have an IBD. Crohn’s is most common among people with Eastern European backgrounds and it is increasing in number for African Americans. Ulcerative Colitis is more common among Europeans with a Jewish background heritage.
The environment that you put yourself in plays an important role as well. The occurrence is higher in “developed” countries than in “underdeveloped countries, higher in urban areas rather than rural, and in northern versus southern climates.
Treatment with Chinese Medicine:
Due to the differential diagnosis that is applied in Chinese Medicine there are different “patterns” that exist when dealing with a disease. This is a similar idea to the different types of Crohn’s Disease and Ulcerative Colitis described above. However, with Chinese Medicine, the patterns are based off of the symptoms the patient is currently experiencing as well as their history, their facial color, body odor, general demeanor, abdominal diagnostic, pulse diagnostic and tongue diagnostic. All of this information is compiled which leads to one of many “diagnostic patterns” to which the according acupuncture points, herbal formula, diet and lifestyle is prescribed. Chinese Medicine is a powerful therapy that can help treat severe cases and help keep mild cases and patients who are in remission stay in remission.
Before we discuss the differential diagnosis, there are a few terms that need to be explained. First one is the “Organ” system. In Chinese Medicine each organ is attributed to specific functions that don’t necessarily match a scientific viewpoint. For example the “Spleen” and “Stomach” are considered to be in charge of the digestive functions and water metabolism in Chinese Medicine. The “Spleen” actually handles some of the function of the “Western” spleen, pancreas and small intestine. The “Liver” has to do with the free flow of qi, which is easily obstructed by stress, emotions, diet and lifestyle. The “Kidney” can be attributed to water metabolism, as well as genetics and our “reserves.” The term “burning the candle at both ends” is a great way to describe how stress and lifestyle can damage the Kidneys. The “Heart” has to do with our emotions and deals with blood. When the digestive system isn’t absorbing food properly we cannot produce the nutrients and blood needed to support these organs. “Heat” refers to inflammation and “Dampness” refers to water metabolism malfunction. Both of these can manifest in numerous ways, as you will see below.
Below are examples of some different patterns that could be “diagnosed” as Crohn’s Disease or Ulcerative Colitis and what the treatment principle should be.
• Spleen Qi Deficiency: Intermittent dull abdominal pain that is alleviated with pressure, abdominal distention, early satiety, nausea, loose stools or diarrhea, loss of appetite, waxy pale or sallow complexion, fatigue, weakness, shortness of breath with exertion, spontaneous sweating, dizziness, and light headedness. Might have mild bleeding of dark, purplish blood, or less commonly, red blood preceding or following a bowel movement; or black, tarry, sticky, unformed stools; or occult blood in the stool discovered upon routine testing. There may be other signs of bleeding, such as heavy menstrual periods or easy bruising.
- Tongue: pale and swollen, with tooth marks (or pale and thin with significant blood deficiency).
- Pulse: Thready and weak or moderate.
- Treatment Principle: Strengthen Spleen, supplement and elevate qi. Nourish Blood and stop bleeding.
• Liver Qi invading the Spleen: Recurrent Diarrhea which may be urgent and preceded by cramping abdominal pain. The pain is relieved following defecation. The diarrhea may alternate with constipation. Symptoms become worse with stress and tension or eating. There is a possibility of mucus and blood in the stool. Other signs and symptoms include abdominal distention, poor appetite, nausea, heartburn, indigestion, borborygmus, flatulence and belching, which relieve abdominal discomfort, hypochondriac discomfort, ache and tightness generally worse on the right side, irritability, depression, moodiness, shoulder and neck tension, temporal or tension headaches, cold fingers and toes, premenstrual syndrome and breast tenderness.
- Tongue: normal or darkish body, or pale, or with slightly red edges: greasy coat especially over the root (depending on the degree of heat, deficiency and Dampness.
- Pulse: Wiry
- Treatment Principle: Harmonize the Liver and Spleen, regulate Liver qi, Support and strengthen Spleen, Alleviate spasm and pain, and stop diarrhea.
• Blood Stagnation: Chronic Diarrhea with a feeling of incomplete evacuation or tenesmus. The stools may be purple or black, sticky or tarry. The diarrhea may alternate with constipation.Fixed and localized, sharp or stabbing abdominal pain (usually in the lower left quadrant) which is worse with pressure. Dark complexion, dark rings around the eyes and purple nails. Spider naevi or vascular abnormalities over the abdomen, face and legs (particularly the inner knee and ankle).
- Tongue: purple or with brown or purple stasis spots; sublingual veins dark and distended
- Pulse: wiry, choppy or thready.
- Treatment Principle: Transform and eliminate stagnant Blood from the Intestines.
• Damp Heat dysenteric disorder: Frequent, foul smelling, explosive diarrhea with blood, mucus and pus: the mixture of mucus and blood will vary depending on the balance of Heat and Damp.Burning anus, tenesmus, colicky abdominal pain, abdominal distention, scanty concentrated urine, red complexion, red eyes, dry mouth, and thirst (maybe with little desire to drink). In the early stages there may be fever and chills, headache and a floating pulse.
- Tongue: greasy yellow coat; with more Heat a red tongue body and a dry coat; with more Dampness, a thick greasy tongue coat
- Pulse: slippery and rapid.
- Treatment Principle: Clear Damp Heat from the Intestines and Regulate Qi and Blood, stop pain.
• Spleen and Kidney Yang Deficiency: Chronic and relentless diarrhea which is thin, watery and mucoid, and may contain pus and blood. In severe cases there may be incontinence of stools and rectal prolapse. The diarrhea is worse from exposure to cold and cold foods. Mild tenesmus or a dragging sensation in the lower abdomen, not relieved by diarrhea. Mild persistent abdominal pain, which is better with warmth and pressure. Loss of appetite, listlessness, fatigue exhaustion, depression. A waxy pale or sallow complexion, cold extremities, cold intolerance, weakness and soreness of the lower back and legs.
- Tongue: Pale and swollen with a thin white coat.
- Pulse: deep, thready, weak and slow.
- Treatment Principle: Warm and Strengthen the Spleen and Kidney Yang. Disperse Cold, transform Dampness. Astringe diarrhea and elevate qi.
• Yin Deficiency with Residual Damp Heat : Chronic diarrhea with small quantities of sticky mucus and blood. Frequent urge to defecate but often in vain. Mild lower abdominal pain, tenesmus, loss of appetite, nausea, dry mouth and lips, thirst worse at night, afternoon or tidal fever that’s worse at night. Heat in the palms and soles, nightsweats, flushing , emaciation, weight loss.
- Tongue: red or scarlet and dry, with a greasy or peeled coat.
- Pulse: thready and rapid.
- Treatment Principle: Nourish and supplement yin and clear residual Damp Heat. Nourish and regulate Blood and stop dysentery.
• Heart and Kidney Yin Deficiency: Recurrent mouth ulcers, which appear in clusters and tend to aggregate on the tongue or tongue tip. The ulcers are painful and hot, with a narrow, slightly swollen, mildly red margin. They frequently recur and persist for up to several weeks before resolving. Often of many years duration, the ulcers tend to be provoked or aggravated when the patient is stressed, anxious or upset. Nervous, anxious individual, insomnia, vivid dreaming, panic attacks, palpitations, forgetfulness, dizziness, tinnitus, lumbar ache, sensation of heat in the palms and soles, dry mouth and throat, night sweats.
- Tongue: red with little or no coat, redder at the tip.
- Pulse: Thready and rapid.
- Treatment Principles: Nourish Heart and Kidney yin. Clear Heat, calm the (spiritual) Shen.
Forms of treatment include acupuncture, herbal formulas (which can be taken internal or external), Massage/tuina, dietary therapy, exercise and lifestyle consultation. When we utilize and multiple forms of therapy results are seen at a rapid rate.
*Disclaimer: The information offered in this paper is not intended to diagnose but rather to inform the public about IBD and give a brief look at how Chinese Medicine looks at and treats IBD.
• http://www.ccfa.org /
• Will Maclean and Jane Lyttleton, (2003), Clinical Handbook of Internal Medicine “The
Treatment Of Disease with Traditional Chinese Medicine” Volume 2 Spleen and Stomach, University of Western Sydney
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…
Happy Spring! Time for “a second opinion”
for this Crohnie patient….
The Dartmouth GI team, headed by one of the top IBD doctor’s in the country, Corey Siegel, MD, wants me to take two heavy-hitter drug combos—an immuno-modulator approach that I don’t feel comfortable with taking. Here is my (layperson, granted!) reasoning: since my quality of life is so good, and my symptoms are episodic and stress-induced, mainly (the docs don’t really like talking about stress as a disease-trigger, as it is so hard to quantify I think), my gut is telling me to wait and continue with my naturopathic treatment; and, quite frankly, I almost prefer surgery to the idea of taking such life-affecting medications…
I want to add, that many of my Crohnie and uc-er friends are successfully being treated on these drugs, I have nothing AGAINST the drugs, and if they help and the symptoms are minimal, that is fantastic! Since many of you have asked (!), here is what they want me to take…. Not one, but TWO drugs, given the severity of my disease….. Read on:
According to WebMD, Remicade (or infliximab) is used to treat certain types of arthritis (rheumatoid arthritis, arthritis of the spine, psoriatic arthritis), certain bowel diseases (Crohn’s disease, ulcerative colitis), and a certain severe skin disease (chronic plaque psoriasis). In these conditions, the body’s defense system (immune system) attacks healthy tissues. Infliximab works by blocking the actions of a certain natural substance (tumor necrosis factor alpha) in the body. This helps to decrease swelling (inflammation) and weaken your immune system, thereby slowing or stopping the damage from the disease. Remicade is given by infusions, through the vein (it usually takes 2 hours) every 6-8 weeks.
The other drug they want me to take is commonly called 6MP. It is taken In pill form. This medication is used with other drugs to treat a certain type of cancer (acute lymphocytic leukemia). Mercaptopurine belongs to a class of drugs known as purine antagonists. It works by slowing or stopping the growth of cancer cells. This drug may also be used to treat Crohn’s disease, ulcerative colitis, and lymphoblastic lymphoma.
In patients using infliximab along with azathioprine or 6-mercaptopurine for the treatment of Crohn’s disease, there have been rare reports of an extremely rare, often fatal cancer (hepatosplenic T-cell lymphoma).
Sounds pretty scary, huh?
Infliximab works by binding to tumor necrosis factor alpha. TNF-α is a chemical messenger (cytokine) and a key part of the autoimmune reaction. Cytokines are proteins that are produced by cells. Cytokines interact with cells of the immune system in order to regulate the body’s response to disease and infection. Cytokines also mediate normal cellular processes in the body.
In our book, Jessica Black, ND, my co-author, discusses the cellular balance in the body to achieve and maintain a balance of homeostasis. In patients with IBD, the need for hormone balance and regulation is also important. In our book, she says,
“Every organ in the body depends on, and influences, other organs—everything is interconnected in the body. This is why whole body approaches to healing often work better than treating just one system, or one symptom.”
This naturopathic approach to whole body, and more holistic/lifestyle, healing is what I aspire to. Since I do not want to take the aforementioned drugs, and my overall health is so good, I feel better able to exlore other options. Emeran Mayer, MD, who wrote the Preface to our “Living With Crohn’s & Colitis” book, recommends a second opinion. (Here is the link LWC_Pages_EmeranMayer to his inspiring write-up.)
I am leaving for the Mayo Clinic in Rochester, Minnesota next Sunday, and I will be there for almost a week. It will be interesting, to say the least (!), to hear what the GI team has to say about my case. i will be seen there at 8:00 a.m. on Monday, April 29th by William Tremaine, MD.
Let the adventure begin. I am not scared, or alarmed—just looking for a more integrative approach to my personal patient care. My gluten-free, sugar-free, diet has been going really well—I feel healthier overall, and my research shows that sugar can create problems in the gut, and may even be linked to leaky gut syndrome, so it has been a great practice to switch to only using honey for sweetener. Here is a great video by Mark Hyman, MD, about why “functional medicine is different than conventional medicine” … it is VERY inspiring, not to mention PRACTICAL!
A group of supportive friends and family . . .
One thing I have going for me, and encourage my IBD-friends to be part of, is the online community of Crohnie and uc-ers that I am privileged to know and appreciate. Sometimes we make each other laugh! Take my Crohnie-friend, Christina . . .she is an awesome survivor of many surgeries and health problems, but when I read her interview with Sarah Chouiery of The Crohn’s Journey Foundation, I laughed out loud at the “embarrassing moments” section! Christina’s blog is a great resource for some welcome humor! I will have it on my iPad as I travel to Minnesota next week….
This photo, below, was taken in my hometown of Brattleboro, Vermont…. Is it a real dog behind the statue of the Buddha you may ask?
Having a Flare-Up
When I was first diagnosed with Crohn’s disease-ulcerative colitis, I remember what a frantic time it was for me. I had three jobs (typical when you live in a rural area) in order to make ends meet. My daughter was applying to college (stressful, to say the least), my father was battling bladder cancer, and I was teaching at a local college where none of the ‘real’ faculty knew my name.
I remember it was April, 2006, and when Emma went off with the college tour, I was too sick to even walk! I had to put the seat back in my car and just lie there.
It is easy to feel sorry for oneself during a flare, that’s for sure!
Don’t you just sometimes feel alone, and like throwing in the towel? Do you ever feel embarrassed that you might have an accident — like when you are walking around a college campus with a bunch of high school seniors and their eager parents?
The obvious answers are all yes: we are only human after all, and sometimes a change in seasons can stir up some allergies, a stressful work period can add fatigue and emotional turmoil to your life. It’s okay, though!
I decided just recently, in the midst of a painful flare, that I am not going to let this disease beat me down—I have too many things I want to do in my life! Take Carrie Johnson, the woman’s rowing champion who has Crohn’s–she is pursuing her dream. What about Pearl Jam’s Mike McCready,’or football great, Dave Garrard? They are living with chronic disease, and not letting it run their lives! Me, I’m just an ordinary girl, but I work hard and I’m taking this latest flare day by day…
It wasn’t fun last Wednesday night to be awake most of the night, cramping, feverish, disoriented, feeling the horrible blockage within, knowing I could be headed towards surgery again—feeling incredibly sorry for myself! I stayed in the rest of the week, gradually introducing safe foods back into my diet…
We need to pace ourselves, and admit that a cure isn’t imminent; we need to share our stories and not feel so alone; we need to listen to our bodies, and slow down when they tell us to. Sometimes, though, life is unpredictable and we have to forge ahead…accepting the good and the bad, while maintaining a good attitude and being proactive in our self-care as patients.
I sold a book last week, for my job as a literary agent—it is called “Wonder Woman Isn’t Bulletproof,”‘by the indomitable Shannon Galpin—she is out in the world, trying to make it a better and safer place for women and girls in Afghanistan. Perhaps my flare-up had something to do with my high stress level (bringing a book to auction!), but I wouldn’t change the joy of telling this amazing woman we had a book deal for anything! You can read why I’m so excited here.
Happy Spring—we still have snow where I live
So, it’s back to reality: lots of rest, fluids, I made a naturopathic doctor’s appointment for next week, scheduled a massage (have to budget carefully!), cooked healthy “post-flare-up” foods (rice, broth, soft-boiled eggs, gluten/wheat-free toast, peppermint tea) and ate small amounts while chewing thoroughly, slept almost 20 hours….healing, and feeling better already!
One of our readers wrote recently, saying her arthritis pain was really hard to deal with . . . Here is Dede’s answer, and hopefully some tips for others who also suffer from the related symptoms of arthritis.
Arthritis pain? Oh, I have it, too!
Arthritis is such a drag. but remember: We are all in this together . . .
Here’s what you can try:
Daily morning yoga with Rodney Yee DVD called “AM/PM Yoga”
Take Omega 3 fish oil capsules 2 “softgel” caps up to 2-3 daily with food (use best brand, highest quality—Dede uses Metagenics “OmegaGenics/EPA-DHA 720”)
Take a lavender bath with candles nightly before bed and use Epsom Salts in the water
Eat the healthiest diet: no sugar, caffeine (if you must, water down coffee and green tea okay), dairy or red meat
Make an appointment with a physical therapist (insurance usually covers this!)
Go to see an experienced acupuncturist (Chinese medicines best) and have 3-4 treatments in 2 months to see it it helps (make sure it is someone trustworthy with good recommendations)
Get a massage monthly to help cleanse and detoxify
Every time before your bath or shower use a dry Loofa sponge and brush your skin all over briskly to accentuate healthy cellular growth
Get 8-9 hours of sleep nightly
Use a castor oil pack to lay on sore joints—you can buy castor oil at a health food store, and Dede soaks a wool rag with it, to make a compress, then put SaranWrap over that, followed by a small towel, followed by a heating pad—ahhhh! The pain miraculously fades away, and you are forced to sit still and can read a book. Or, even better, you can meditate while you heal.
Walk 3-4 miles every day to clear your mind and keep your joints fluid and muscles strong to support the bones
Ride a bike for cross training — great for quad strength, and it is easier on arthritic knees…
Monday is the “Living With Crohn’s & Colitis Bicycle Challenge”!!! Get out there and start pedaling—post photos of you on a bike on our Facebook wall, and “Thnk Pos!”