Since it is almost Thanksgiving, I thought I would write a post to wish everyone a happy, stress-free holiday, and try to help those with IBS, Crohn’s, and UC who may need some encouragement and advice.
We all know holidays can bring on the stress-inducing behaviors and hormones that cause internal signals to flare up in the body. When I was at the Mayo Clinic a few (short) months ago, I learned so much about controlling stress—make stress-reducing activities a priority, starting today, and leading up through the holiday season.
Your lifestyle structure is even more important here: daily exercise, gentle yoga, meditation, sleep, etc. Schedule appointments with professionals to help you lessen stress in your life: a talk therapist, acupuncture, massage (gift cards are good holiday presents for those you love!), etc. Do what makes you feel good about yourself AND relax! (I went to the salon yesterday for hair color!)
Tryptophan is one of the 10 essential amino acids that the body uses to synthesize the proteins it needs. It’s well-known for its role in the production of nervous system messengers, especially those related to relaxation, restfulness, and sleep.
I am now aware why I love turkey so much—I sometimes even crave it. I always feel more relaxed after I eat turkey, and this may explain why….There are many researchers who study the way tryptophan manufactures serotonin, a neurotransmitter that is found—guess where?—in the intestinal tract. Just about 90% of the body’s serotonin is actually found in the gut, so my gut tells me to eat it, and I am not even a biochemist!
Tryptophan has the ability to raise serotonin levels, too! Wow, who knew this? I love the fact that I can eat turkey and sample other holiday foods like nuts, seeds, bananas, pumpkins, squash, sweet potatoes, green beans with almonds, pearl onions (those sweet little ones, not the canned and creamed kind!) WITHOUT having a flare up. Also (again, who knew?!), Tryptophan also boosts the production of B3, and since I had a partial bowel resection in 2006, I need to keep track of my B vitamins (especially since my terminal ileum is completely gone, I have lost the capacity to fully absorb vitamin B12).
Everything I eat is sourced, and mostly bought from local farms. It is not that hard to do. For instance, our turkey is a Vermont-raised, free running turkey, and I picked it up yesterday from our local food coop. Potatoes are from here, also butternut squash, apples, pumpkins—are all from Vermont; cranberries are organic and from Cape Cod. I will be baking apples, too—delicious and easy. Some of us cannot eat nuts or cranberries, so avoid, but there is plenty to choose from!
Here are some tips: drink water before your meal to fill you up so you don’t overeat, take small portions, walk after the meal. If you have an ostomy, take extra supplies and a change of clothes to your hosts’ party. If you avoid sugar and alcohol, you will be less likely to flare up; also don’t try ANY food that is not on your list (remember the food journal from the book!).
On Wednesday/tomorrow, I will make some pies to drop off at our local Thanksgiving Day dinner for those less fortunate in our area—Don’t forget to do something to help someone else in need this week, and after. With all the holidays upon us, plan some special time each week to volunteer (soup kitchen, helping those who have been in a house fire, helping veterans, etc.). Thanksgiving was set as the fourth Thursday in November. This year, something amazing and historic has happened: After sundown on the second of Hanukkah’s eight days, we will also celebrate Thanksgiving. If you are Jewish, there is an even busier holiday!
I will post some recipes on my Facebook page! Be well, and breathe … A bit of dietary research unravels mysteries of cravings from this writer with uc/Crohn’s disease….Happy Thanksgiving & holidays everyone!
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.
Greetings from Vermont. I am the co-author of Living With Crohn’s & Colitis: A Comprehensive Naturopathic Guide for Complete Digestive Wellness (with a nationally-known naturopath, Jessica Black, ND). Our book has helped so many people afflicted with Inflammatory Bowel Diseases, part of the growing auto-immune diseases that cause diarrhea, bloating, nausea, vomiting, and cramping. These inflammatory bowel diseases, and other auto-inmmune disease are on the rise exponentially across the world, especially in the developed countries where processed food is available.
Think about it: There are certain behaviors that cause body/mind stress: We address this in the book, but I want to tell you that I am a patient/survivor of a stress-induced flare-up in 2006 that almost killed me. On my 5 foot 8 frame, I weighed 117 pounds. I spent a month at Dartmouth Hitchcock Medical Center. I was 45 and very sick, with 3 children at home and a business to run.
Stress was the way I worked, and I was on autopilot without taking time for myself. That has all changed, and I have been in clinical remission for the last 7 years! Let me tell you more….
As many readers know, I went to the Mayo Clinic in Rochester, Minnesota this past May to have a complete second opinion. I spent two days of my weeklong stay, at the wonderful stress reduction clinic.
Here are some of my tips gained from my research, and how I try to keep my disease in remission:
A lot of us have low level stress. Most of us don’t live in the hyper-aware world, and we suffer the autopilot behaviors that contribute to what I call “the slow burn of stress response.” Our heart rate and blood pressure might be elevated, and our breathing and muscle tension is like this — shallow breathing and knots in muscles. There is an area at the base of the brain called the amygdala. This is the seat of our emotional reactions, or “flight of fight” response to stress. Many Americans live with this elevated, but low level elevation daily… a little bit of “Flight of Fight” stress is really okay, but not on autopilot.
Look at our brains — In our pre frontal cortex, there is an area responsible for relaxation, and it is not easy to stimulate and not an adrenal release, as per the amygdala part of the brain.
First we need to be aware of this pre frontal cortex We have to explore our own behaviors and habits, break out of autopilot, and participate in a personal practice. There are some things you can’t control, like weather or traffic jams; however there are some things we can control, and are important… An example from the workshop was if you have an overbearing mother (don’t worry, Mom, not YOU!), and how you need to take care of yourself first and use the excuse of health, and scale down. Awareness helps, and limit your exposure to stressful people and situations. It’s a process… keep boundaries in your mind, but “caring boundaries.”
Unhealthy responses to stress in our life are anger, etc. It is important to develop a healthy exercise routine, learn and use relaxation techniques (see below), and take care of yourself. This neural pathway gets easier and easier to tap into (see diagram at right). For example, my body knows and relaxes immediately when I walk into my home “yoga area” where I have a TV, and a carpet with a yoga mat. I use Rodney Yee’s DvD, “AM/PM Yoga,” and do the exercises every day… it gets easier and easier to tap into the relaxation part of my brain, and it is replenishing.
After a stressful day:
- Call a friend
- Read a book
- Walk the dog
- Ride a horse
- Volunteer at a soup kitchen
- Play the piano
- Do some gardening
In order to break out of autopilot, do a few things on this list on a regular basis.
Benefits: Concentration, Problem solving, Sleep…
We need to be participants: This involves “letting go of the wheel,” loosening your grip, and takes time and experimentation.
In the wonderful workshop, our instructor gave the analogy of flying on an airplane, and how you put the oxygen mask first, then help the child.
Talk therapy is another way to help relinquish the autopilot lifestyle… A regular monthly session with a trained, recommended therapist will do wonders for helping to care for yourself, establish boundaries, and feel safe.
Evaluate your stressors and prioritize your time, as you move forward in the break from autopilot.
Give yourself permission eg., “Be kind to yourself and ask for help.”
Often we don’t think about our career as a choice made for healthy reason, and it might be time to reevaluate what we do for work.
It is important to spend time with friends, develop hobbies…. Hanging out with people who make me laugh is a goal. A hospital study involved a control for two groups with the same malady: One group watched funny movies every day, and got out of the hospital faster.
It’s a process, and it is important to practice positive self talk.
Start a simple practice of Tai chi and chi gong
Walk around with a gentle smile on your face and try to share it with strangers—you use less muscles and tension when you are not frowning, which can contribute to an overall sense of well-being and a way to focus on releasing the internal stress caused by being on autopilot…
I have found this “small smile” technique that is practiced by Amit Soud, MD, the head of the Eastern Medicine Section of the Mayo Clinic to be essential as a way to lessen internal stress.
TAI CHI AND CHI GONG: These ancient exercises are easy and relaxing, often available in small towns across the United States. For example:
We breathe with about 40% of our lungs. If we can learn to take slow diaphragmatic breaths, we can effortlessly lesson our stress levels. These exercises are the foundation and essential for relaxed breathing.
A simple exercise I learned at the Mayo Clinic:
Take in a slow deep breath,
and fill your lungs so even your belly sticks out;
hold for a couple of seconds;
pretend you have a lit candle and exhale
so that the candle flickers.
Note to reader: it might take 8 weeks or so to start seeing results.
Having 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!
Seems like my own health has taken a bit of a dive ;( … when I was freaking out about Lyme disease, it turns out it was a Crohn’s flare-up. Yes, I have been so happy to be in clinical remission for the past 6-1/2 years, I’d forgotten what it was like to have a flare up!
I thought I had Lyme disease, and was having stiffness and flu-like symptoms. Some of my readers will remember that I had a systemic flare of poison ivy during the first half of the summer (yeah, five weeks on Prednisone was not fun;( … Well, my dermatologist thinks the acute contact dermatitis (poison ivy resin is powerful stuff, not easily washed off and stays on your work gloves I learned!) caused my body to get out of balance, and I think she may be right! There is a strong connection between the skin and the gut — more on that subject in a later blog post.
I was at Dartmouth Hitchcock this week for a colonoscopy, and my results were very discouraging. My small intestine is in an active flare, characterized as severe. The news could have been better that is for sure! I am still in shock. My small intestine is riddled with Crohn’s in a 20 centimeter area just near the former surgery. Crohn’s is incurable and when it does this, they get serious and make you take these auto-immune suppression drugs. The recommended drug, 6-MP, is an immunomodulator – the way it works is it suppresses your immune system so that your own immune cells will stop attacking the lining of your intestines. There are patients who tolerate the drugs and it helps them stay in remission and pain free. Others have reactions to the drug, like fevers and stiffness. What the doctors look for at the beginning is liver damage.
On Thursday, after my colonoscopy, they got me right to the lab to draw blood for the test to determine if I could tolerate the 6MP. I, of course, started talking to my wonderful GI, Steve Bensen, about not taking the drugs. Couldn’t I work with my naturopath, I reasoned, and take the less toxic drugs she prescribes, and come back in 3 months for a scope? I did just finish a heavy round of Doxy for the symptoms of Lyme disease (for the record, I had an engorged deer tick that I pulled off and squashed and flushed down the toilet — always save the tick to be tested!), so the antibiotic had upset my stomach.
The head of the IBD Clinic, Cory Seagel, even came into my little curtained room with me in my Johnny gown sitting on the side of the bed. “You should start the drug immediately if your liver can tolerate it, better yet, you should take a combination of 6MP and Remicade,” he said.
Here is a good definition from Livestrong:
6-Mercaptopurine, or 6-MP, is a purine analogue antimetabolite drug that is used in the treatment of acute lymphoblastic leukemia, Crohn’s disease and ulcerative colitis. Purine analogues impair DNA synthesis, leading to less cells being created. Acute lymphoblastic leukemia, Crohn’s disease and ulcerative colitis are all conditions of an overactive immune system. 6-MP helps to decrease the amount of immune cells in the body to help control the disease.
The colon appeared normal. My sigmoid resection at 15 cm and its short blind colonic pouch had normal anastomosis (a term for surgical connection)….This is good news! Large intestine: check.
Ileal resection: segmental inflammation characterized by erosions, erythema, fir ability, granularity, loss of vascularity, confluent deep ulcerations, and serpentine and shallow ulcerations found in neo-terminal ileum and extended from my first surgery for 20 cm (about 8 inches)…. Small intestine: NSG (not so good!)
The power of poetry/intention
There is something about the language of medicine that I find vaguely hypnotic and poetic. Weird as it sounds, understanding the human side of medicine is an intention of mine, and one that I hope to impart on my readers, should they desire to learn more!
The path ahead
I wish I didn’t have this new problem, and feel fine! I went 5-10 years last time, but this time the wall of the small intestine is compromised and thinning. I may be flying out to the Mayo Clinic, for a second opinion and work-up involving their more integrative approach. I am a wreck about this, of course, but trying to stay focused. As my daughter, Emma said, I have such resolve and a positive attitude… Don’t feel like dwelling on it too much, but wanted to let my (our) wonderful readers know why I’ve been out of touch. I am going to start with the naturopathic doctor on Tuesday….. and Mayo Clinic, probably in January.
Notes from Jessie Black, ND
Let’s work with an accompanying pharmacist and try low dose naltrexone — start very low and amp up to 4.5 milligrams. In addition, she mentioned a very powerful high-potency coated turmeric (this is hard to absorb, so it’s necessary to work with a naturopath who knows their herbal medicine), and a new, more fiscous fiber called PGX. Fiber is something I take daily, already, along with garlic, Aloe Vera, extra C, D vitamins, calcium and multi-vitamins and Omega 3 capsules. A good article about helpful herbs is found here
My basic diet now: No caffeine, dairy, processed foods, alcohol and trans fat. Instead SCD-certified food, lots of fresh-steamed veggies, cold water fish, and other foods from SCD! An awesome site for basic dietary help is found here! Link to a flare-up diet.
This blog will detail my journey. Thanks for your support and being part of it all! I welcome comments and suggestions, especially from IBD sufferers who have taken other meds besides 6MP and Remicade. Or IBD patients who have taken the drugs and had good results…I want to examine and research both options, along with a more integrative approach to possibly even healing the current severe inflammation without drugs!
I will start off by following my co-author and naturopath, Jessica Black’s Anti-Inflammation Plan (diet and lifestyle) that is in our very own book, Living With Crohns & Colitis!
- caffeinated beverages
- fried foods
- processed foods
- peanut butter
- carbonated soda
- anything that contains hydrogenated oil
After four weeks, reintroduce the eliminated items, one per week and if no allergic symptoms occur, add the item back into the diet. Read more More to come….