It is amazing how much a positive attitude can help. In our book, there is a section when I am despairing and a doctor comes and sits with me and holds my hand—no kidding! He said, “Think positive.” Well, on that note, I want to write a post today about that and helping the body adjust to the changing season and of course living with IBD in general. I also want to share the news that I am writing a cookbook, called Living with Crohn’s & Colitis Cookbook (good title, too!)…my publisher is the wonderful Hatherleigh Press, which is distributed by Random House. I couldn’t ask for a better team! Publisher, Andrew Flach believed in this book from the very start, associate publisher, Ryan Tumanbing is always there when I need things, and my editor, Anna Krusinski is da Bomb!
My book with Jessie is a good overview and a way to understand how the body chemistry and immune response works. I am not denying the benefits of medication, but we do offer an alternative, and if you are someone who has to stay on meds, you can do both—no matter what, it is important to keep the body tuned and in a balanced state of homeostasis.
Getting a full work up from a medical professional is the first step—go to a specialist at a GI clinic (Dartmouth is the best in my area), and have a colonoscopy, blood work (really important as many patients are anemic due to blood loss, or low in B-12 as in my case), a physical exam (a patient will no doubt be embarrassed by this like I was, but this is a very important exam because the doctors can determine a lot when they examine the anus and rectum, and palpitate the abdomen—they could feel the mass in my case), and what is called enterography: a MRI or CAT scan (I don’t recommend CAT scans too frequently for younger people) will reveal areas of disease inflammation.
Crohn’s typically presents in the lower right abdominal quadrant (often confused with the appendix!) of the small intestine, but it can strike anywhere from the mouth to the anus. Colitis presents throughout the large intestine only. Crohn’s really cannot be cured, and has a tendency to skip to infect the next section of the bowel even after the diseased section has been removed (as in my case). Colitis can be cured through surgery if nothing else (drug therapy or naturopathic-holistic-alternative) works. They take out the large colon, and connect the stomach-duodenum-small bowel through a J-pouch internally, or an external ostomy bag. Not a great thing for anyone to have an ostomy bag; however I have met many people with colitis who don’t mind the bag at all, and love the fact that they are pain-free.
The Crohn’s & Colitis Foundation of America is the best organization! I love everyone there, and run in their half marathons with Team Challenge to help raise money for research; plus it is a community of fellow patients, young and old, and we are a surprisingly close-knit group. Join, and sign up for a walk and a support group (they even have a new college group!) as soon as you can.
The other thing to do, is have a poop sample tested (this is no fun, but can tell a lot—bacterial infections, or something called C-Diff). In addition to going to a GI clinic, make an appointment for a work-up with a recommended naturopath, a trained naturopathic physician with a four-year degree from a well-known college (Bastyr University, for example) and get right in there for a checkup and a plan of action. My naturopath did allergy testing to see if there were specific foods (most common culprits are wheat and dairy), that I needed to eliminate, and she ordered an endocrine hormone test to see if I may have had a hormone imbalance.
I also give a lot of credit to my acupuncturist who is trained in Chinese medicine, and I go once a month. It is all in our book, but make sure you stay on top of the disease and get regular check ups with your medical doctor to rule out any other complications. I had a dangerous abdominal fistula, that didn’t show up on the CAT scan and was attaching itself to another organ—sorry to bring in the drama, but IBD (Inflammatory Bowel Disease) can be life threatening. No question, it is vitally important to be proactive, especially as a parent.
My weight was so low, I was dangerously thin—ironic, because our society places such status on being thin! I am now a healthy 140 pounds, and I work hard every day to stay healthy. Once I get busy with work, and let things slide, I start to feel run down… I can tell right away! Being in tune with your body is very helpful—keeping a food and daily journal, getting some good private counseling, and doing stress reduction exercises (Tai Chi or yoga) daily is also a big part of managing the disease.
I think I have covered the basic tenets of my book with Dr. Jessie. Oh, one more thing, join the online groups— http://www.ihaveuc.com, and The Crohn’s Journey Foundation for starters, also Intense Intestines, Girls With Guts, the Crohn’s Forum, Healing Well, and others. We are a strong and awesome group—always there to support each other! Let’s face it, the doctors are so busy, they can’t spend and hour with each patient, and it is the patients themselves who are doing great research and offering support. If a doctor tells you stress or diet have nothing to do with IBD, find another doctor! Oh, and second opinions are a good plan as well.
I have eliminated SUGAR, and ALL grains from my diet and ALL dairy. It is awesome! I feel so much better… I eat baked chicken or grilled fish, locally-raised, antibiotic-free, grass-fed hamburger steak once in a while when my body craves red meat, all served with yummy vegetables on the side and tons of fruit and nuts and eggs… I take extra calcium-magnesium, along with daily probiotics, turmeric, Omega 3, Vitamin D, herbal adrenal support, extra vitamin C, and a good multi-vitamin (I buy only organic food and supplements—it’s more expensive, but then I don’t spend a lot of money on clothes and makeup!).
So that is the basic overview—I am always there for my readers, and want to offer as much support as possible!
Oh, this just in, Dede will be on The Doctor Oz show this coming Monday, October 14th, in a spot on how common bloating is. They found me through the Crohn’s-Colitis book on “Help a Reporter Ou”t (HARO), and asked me to show how hard it is to buckle my jeans when I am bloated, which is what “used to happen” when I ate too much dairy or wheat…now, I don’t have bloating much AT ALL! Watch the segment if you want a laugh 😉 as “laughter is the best medicine.” I don’t mind embarrassing myself to help others…
Be well, and take care of yourself… don’t be afraid to ask for help!
Below, you can see some recent dinners… My husband and I have a grill we use a lot, and here you can see grilled marinated swordfish (fresh ginger root, white wine, wheat-free tamari, lime, and a dash of brown sugar for the marinade and let sit for a half hour before grilling) with grilled garden-fresh small eggplants (some people may have trouble with seeds…always introduce new foods slowly and note the reaction by your body in your journal right away….like I tried polenta this summer….noooooo! Not good for me, but may not bother someone else—we are all different!), and baked chicken with a sesame glaze (it was so good!) and steamed broccoli.
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!
¡Hola! My fellow Crohnies, uc-ers, readers . . . My friend, Shelly, asked me what was up, so I thought I better get on here, and write something! Having Crohn’s disease AND colitis, and other autoimmune diseases is not a walk in the park, but my girlfriend, Cindy, has something called myasthenia gravis, and she is really struggling. Last night, I had a home jewelry party as a way for her to raise money to help defray some medical expenses, and the upcoming mortgage (she ‘s a single mother of three on disability). It felt great to help HER! I think helping others is the way to help ourselves….
So now, the update!
Crohn’s flare Novemeber 30th Rx.
Started low dose naltrexone, high potency turmeric, increased probiotics, and something called Glutamine (the last 2 on an empty stomach), along with high potency turmeric (cur-cumin—yes, an herb!). I told my GI I was doing this…. And now it is over two months later, and I feel great!!! This is definitely NOT a drug or infusion with potential side effects (though LDN is not FDA approved), rather it is a more “integrative” approach to medicine that should be practiced everywhere. I’m lucky, in that my co-author, Jessica Black, is a naturopath who is up to date on treatments that are less invasive, but effective! Worth looking into, don’t you think?!
After I started writing this post, I looked up Glutamine, and this is how it works:
With the anti-inflammatory, Cur-Cumin, and the beneficial effects of increased probiotics, the Glutamine works as a binder in my gut to help decrease the inflammatory cytokines. It is an amino acid. The probiotics are live culture micro-organisms that help to balance the gut micro flora. This is good stuff! The doctors, the researchers, and patients are beginning to take all of this gut bacteria science news pretty seriously.
“The human gut teems with bacteria, many of their species still unknown. They help,us digest food and absorb nutrients, and they play a part in protecting our intestinal walls. Gut bacteria may also help regulate weight and ward off autoimmune disease.”
I strongly feel that taking a regimen of potentially carcinogenic drugs is not the way I, personally, want to go! I HAVE taken Prednisone, and currently I am on a low dose (3mg) naltrexone protocol (this is NOT FDA-approved), and I just know it is working.
A feeling of consistency is occurring—getting at least 8 house of sleep, walking-running 3/4 miles a day, doing yoga and meditation daily, seeing a therapist…. And writing about it all. This kind of integrative medicine is where we should all head towards, as patients and caregivers!
Here is the coolest photo in the world…. Can you guess what it is a photo of???
From National Geographic!
A new year’s tip from LWCC—start planning a small vegetable garden for spring! Just ’cause we (or someone we love) has Crohn’s or uc, doesn’t mean we can’t enjoy food and the delicate taste sensation of fresh herbs!
I am sitting here in my kitchen at home in Vermont, after a lovely two weeks of vacation spent with my family. As I was drinking my morning tea, I looked up and saw this:
So, what does this photograph mean? Right now, it symbolizes rebirth. I started the amaryllis before the holidays from a bulb…and now it is in peak bloom—hope; new life, new meaning…. But lest I wax too poetic here, I should note that a really determined chipmunk (probably the same invader of my garden last summer) is destroying my bird feeder as I write this! As I watch the greedy scavenger—the rodent—I think of the Hindu god, Shiva Nataraja, The Lord of the Dance:
The two most common forms of Shiva’s dance are the Lasya (the gentle form of dance), associated with the creation of the world, and the Tandava (the violent and dangerous dance), associated with the destruction of weary worldviews – weary perspectives and lifestyles. In essence, the Lasya and the Tandava are just two aspects of Shiva’s nature; for he destroys in order to create, tearing down to build again.
Since I found out I was in the midst of a severe flare up just six weeks ago, I have been plagued with fear that I will need surgery, have to take Prednisone again, and live again in the cycle of disease. Prednisone, especially, is a drug I hope I never have to take again—though I never got the symptoms of the round face, the bloating, etc,, I got the inner turmoil kind of symptoms: the frenetic feeling of gears winding up inside your body….not a good state to live in. Yes, those are the fears that lock us inside of ourselves when we are sick.
Well, not to dwell on that is easier said than done!
Here is a photo of my iPhone from when I was in Mexico last week…. As I lay in my hotel room bed for a whole day of fever and drifted in and out of consciousness, I put all the Spanish words for my disease in my “Favorites” in Spanish Dictionary, for fear I would have to explain to the hotel manager in case he had to call an ambulance to take me to the hospital (Merida was probably closest, but the hospital in Tulùm looked like a place for the bedraggled tourists to come to get treated for sunburns!). I was convincing myself that the flu I caught traveling was really a worsening of my flare up into a bowel obstruction.
My irrational fears were perhaps due to exhaustion and loneliness (my family went off to the beach ;(…. But I gradually realized that my fears were making me sicker! I always had trouble traveling when I lived with active Crohn’s-coltis for twelve years. We would pack our kids into the car, tents, camping gear, etc., and travel someplace like Okrakoke Island off the Carolina’s…..I remember that trip fifteen years ago, and being sick as a dog in bed for days, horribly bloated, and despairing the entire time…. I will never go back to that dark period of disease (though I hope to visit Okrakoke again someday in a normal state!), for it was a frame of mind that did nothing but foster the negativity around my life.
So, fast forward to hotel room in Tulùm. The cheerful towels our maid, Gabriella, created in animal sculptures, made me feel worse—their sweet little eyes stared out at me across the bed, and I felt they were mocking me — fever, perhaps?! After five hours of lying in bed and drinking nothing but water, and learning Spanish words about diseases of the bowel, I was ready for a change… I got up, showered, went out with my family for dinner, and my son helped me order a plate of the blandest food we could order at the restaurant, el Capitan.
Perfecto! I felt revived—chicken and vegetables will do that for me, along with a light cranberry juice (pure, no additives), mixed with mineral water. I thought the fact that I wasn’t moving my bowels was because there was a growing obstruction, when in fact it was due to the fact I hadn’t eaten much solid food in the last two days. It is amazing how illness, especially fever, will make us regress. We all want to be back in our mother’s bed with someone rubbing our forehead! My husband, who is not the most hovering-docile sort, was the practical one who said, “You haven’t eaten much at all!”
Well, that is my wisdom for the day…. Or is it wisdom? It seems more like common sense—keep the food journal going, and when you travel especially don’t forget it, or when you are faced with a new situation, like going off to college, or camp, or starting a new job…. It is essential for those of us who live with disease to be able to ask for help, but also to realize that our self pity might be making us sicker.
It is with that thought, and positive energy, that I want all of us to have in our Crohn’s & Colitis community as we move into the new year. “Think Positive,” was told to me by a doctor when I cried in my hospital bed, a few weeks before my bowel resection when I was overtaken by fear of the unknown and shaken by the heavy dose of steroids they had me on. A medical student, Dr. Osei Bonsu, DO, (currently an Internist in Galax, VA), was his name—and he held my hand and gave it a squeeze.
Now, back to planing my vegetable garden for spring planting….just a few months away.
“One thing I teach: suffering and the end of suffering.
It is just ill and the ceasing of ill that I proclaim.”
In a recent study, Mental Training Increases Physical Strength, by Erin M. Shackell and Lionel G. Standing from Bishop’s University in Quebec, a group of college students were asked to IMAGINE strength training versus a control group who did nothing and another group who did the actual physical work.
One area (hip flexing) was identified for groups of 10 college student-athletes to work on for the two-week study. The 10 college students who did the actual strength training five days a week did four sets of eight repetitions, adding 5lbs of weight, and they saw strength training improvement of 28%. The group of 10 that did nothing saw no gains; and the group that practiced visualization saw gains of 24%! This study was unique in that the group imagining themselves doing the reps actually did nothing after that—it was pure visualization.
The idea of using mental practice to improve performance has been around as long as Buddhism, founded 2,500 years ago. Exactly how visualization changes physical health remains a mystery, but the Dalai Lama spoke of the process of training the mind through meditation when I heard him speak this past October. I was profoundly affected by his talk; in fact, I am writing a book with Travis Hellstrom, called Questions for the Dalai Lama & Daily Quotes for Hope, due out in 2014—visit our website here, and please join us—we like to receive questions, and you may be in the book! Those of us in the Crohn’s-Colitis community live with suffering sometimes on a daily basis. It is important to develop and train your mind as a way to cope with this.
Additionally, studies have shown that altruistic behavior (the inherent, and possibly genetic ability to help) improves medical outcomes—so a good New Year’s resolution:
Do something kind for someone or something every day. My own daily intention is this: May our thoughts be kind and clear. May our words and communication be kind and clear. May our actions and intentions be for the greater good of all beings.
I have used mediation and mindfulness steadily since my bowel resection six years ago, and I have made a daily practice of morning yoga and mediation. When I sit at the end of my yoga session (I use the gentle Rodney Yee DvD, “A.M. Yoga,” I let Rodney’s soothing voice guide me into a place where my breath is quiet, my mind quiets (that can take a while with me!), and my shoulders and ears and limbs are relaxed (look at statues of sitting Buddhas, and you will notice the elongated ears, the fingers in the lotus position, the downcast eyes…). I chant “Om,” before and after I sit, and I have a visualization that I let pass through my body from my head down through my spine, and out my lower back—it is a ball of white light. While this luminescent ball moves down my spine, I have a mantra I chant over and over that goes like this:
White light healing
It is amazing to me how grounded and refreshed I feel after each morning session.
Now that my Crohn’s has gone into a full-blown flare, I am sobered by the realization that the disease has been spreading back up my small intestine from the site of the surgery (see my recent post, What Causes a Flare Up). However, I have heard from numerous health practitioners that a positive outlook actually affects disease outcomes, so my goal is to be as upbeat as possible while I begin this new drug-and-naturopathic protocol (low dose naltrexone, Glutamine, vitamin D and C, high potency turmeric/curcumin, and the rest of my daily supplements including increased probiotics).
I am also committed to getting back on the Specific Carbohydrate Diet (SCD) that helped me so much six years ago! My colleagues, Jordan and Steve, have since developed a really great website and resources based on the original book, Breaking the Vicious Cycle, by Elaine Gottschall.
How Does the Specific Carbohydrate Diet Work?
By eliminating complex carbohydrates, lactose, sucrose and other man made ingredients from the digestive process, the body is finally allowed to start healing. As gut flora levels start to stabilize, the reduction of irritants from undigested foods, toxins and other man made ingredients allows inflammation levels to retreat.
So, for all my readers, followers, fellow uc-ers, Crohnnies, and friends—keep on with visualization and positive thinking, especially as we embark on a new year with new beginnings.