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 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.
“What goes around comes around . . .” may actually be an old proverb meaning “the status eventually returns to its original value after completing some sort of cycle”. . . . Or, “a person’s actions, whether good or bad, will often have consequences for that person.”
I am thinking about that old saying a lot lately, due to the news that I have a severe recurrence of Crohn’s disease. Crohn’s can be found anywhere in the intestinal tract, from the mouth to the anus, but it usually presents in the terminal ileum, as it did in my case. Since I no longer have the 20 centimeters of terminal ileum (or the ileo secel valve that links it to the large colon), I now have the spread of the disease on the other side of my sutchers…. 20 more centimeters of small bowel are severely inflamed. For the record, that is a total of almost 2 feet, 20cm being around 8 inches. Here is a good definition:
The small intestine (or small bowel) is the part of the gastrointestinal tract following the stomach and followed by the large intestine, and is where much of the digestion and absorption of food takes place. The primary function of the small intestine is the absorption of nutrients and minerals found in food. The average length of the small intestine in an adult human male is 6.9 m (22 feet 6 inches), and in the adult female 7.1 m (23 feet 4 inches). It can vary greatly, from as short as 4.6 m (15 feet) to as long as 9.8 m (32 feet). It is approximately 2.5–3 cm in diameter. The small intestine is divided into three structural parts: Duodenum, Jejunum, and Ileum.
The small intestine is where most chemical digestion takes place. Protein, lipids (fats) and carbohydrates are broken down and a process called diffusion takes place where nutrients are absorbed into the blood vessels through the wall of the small intestine (the terminal ileum is where the B-12 and bile salts are specifically absorbed). There are all sorts of mucosa and wrinkly tissue down there—hence the language from my latest colonoscopy had terms like “serpentine” to describe the tracks of inflammation they found). There is a lot going on in the bowel—the second brain—including the delicate villi, which is Latin for shaggy hair (I love these descriptions!).
Do you have Crohn’s or uc?
If so, we have even more in common! Interestingly, I keep my book off my Facebook personal page—not to hide my disease, but to not “promote” my book, for fear people will think I am only selling a medical memoir written with a naturopathic doctor to make money (not!!).
Maybe I should become brave like Mike McCready, and be even more open….in this teeny tiny post, I will explain that I have lived with this sucky disease since I was in college, and was only diagnosed when I was forty.
When I turned 50, I lost a significant portion of both large and small bowel, and I have enjoyed a great quality of life ever since my surgery—pain-free! What a joy to have my life back!!! I take nothing for granted, and I wake up each and every day feeling blessed and lucky (I’m Irish), and I do not like to listen to self-absorbed people talk on and on about, you know….. Anyway, as I was sayin’ …. My book is ranked number 11 on Amazon in disease, and consistently No. 1, 2, or 3, in Kindle’s Gastroenterology ranking. Many people actually write to me and say thanks—the greatest gift in the world! I want to say “thank you” to my readers, my friends, and all of the community—anyone who has struggled with disease, or losing a loved one—we are all connected!
What does Karma mean?
A Sanskrit word, and one from Hindu-Buddhist religious traditions, it means that “the total effect of a person’s actions and conduct during the successive phases of his existence, regarded as determining his next incarnation.” I don’t know about you, Dear Reader, but I am ready for this cycle of disease to be over!
From the Dalai Lama
Take into account that great love and great achievements involve great risk.
When you lose, don’t lose the lesson.
Follow the three R’s:
– Respect for self,
– Respect for others and
– Responsibility for all your actions.
Remember that not getting what you want is sometimes a wonderful stroke of luck.
Learn the rules so you know how to break them properly.
Don’t let a little dispute injure a great relationship.
When you realize you’ve made a mistake, take immediate steps to correct it.
Spend some time alone every day.
Open your arms to change, but don’t let go of your values.
Remember that silence is sometimes the best answer.
Live a good, honorable life. Then when you get older and
think back, you’ll be able to enjoy it a second time.
A loving atmosphere in your home is the foundation for your life.
In disagreements with loved ones, deal only with the current situation. Don’t bring up the past.
Share your knowledge. It is a way to achieve immortality.
Be gentle with the earth.
Once a year, go someplace you’ve never been before.
Remember that the best relationship is one in which your love for each other exceeds your need for each other.
Judge your success by what you had to give up in order to get it.
If you want others to be happy, practice compassion.
If you want to be happy, practice compassion.