I would definitely recommend getting another opinion. I got two!
One of our readers wrote to say her doctor told her she “shouldn’t feel any pain from UC.”
Pain is a bi-product of both Crohn’s disease and ulcerative colitis. My disease caused pain when I flared—it even felt like labor pains! I have Crohn’s. My disease is characterized by scarring—called fibro stenotic disease. UC does not usually go through the outer wall of the large intestine the way Crohn’s does with the small… So some people don’t have pain, but have diarrhea instead.
Remember, everyone is an individual, and we have different symptoms and react differently to different foods, or stress, for example. I (Dede) always say this: listen to your own body, ease off on trigger foods, like dairy or wheat, be proactive in your health care and do research and ask questions. Bring a list, and a partner or a friend, to your doctor’s appointments.
One time, I brought my husband, and he had done all this research (he’s an English professor ;)… at one point in the meeting, the gastroenterologist leaned over his desk and said to my husband, “Hey, what do you have on that drug?”
One thing to be aware of: getting off Prednisone. Did your doctor tell you to taper off slowly? My GI did. I love my team at Dartmouth Hitchcock in NH, it’s important to find a clinic and doctor you can trust who really listens to you!
Diet—yes, can cause pain and symptom flares. Don’t let a doctor fool you! Listen to your own body!
There is an excellent website-forum called www.ihaveuc.com and you should “tell your story,” and pose any questions you have there, also.
It is our hope that our readers have benefitted from the New Year, 3-month, Plan for Wellness. Here are seven painless and simple at-home acupuncture steps you can do to maintain good health and vitality. I recommend acupuncture and we had a wonderful guest blog post a few months ago that a lot of our readers thanked us for.
My naturopath also has me on a total “detox” regimen that includes castor oil packs, meditation (I use Rodney Yee’s “AM Yoga” DVD, or try Jon Kabat-Zinn’s wonderful collection of relaxation CDs), skin “sloughing” before shower (which entails roughing up your skin with a loofah sponge from your extremities toward your heart and encourages new cell growth), drinking plenty of water, regular exercise and daily yoga, counseling with a social worker or psychotherapist, weekly (free) REIKI and monthly massage visits, acupuncture sessions monthly, and physical therapy with integrative manual therapy-healing. A good attitude also helps. I regularly repeat to myself positive messages like:
“Don’t let this disease rule your life and get you down, but when you need to, ‘Ask for Help!’”
This simple YouTube mindfulness video by Jon Kabat-Zinn is wonderful, and Dr. Kabat-Zinn was one of the first to bring mindfulness into medicine!
The suggestions I receive from my naturopath are an attempt to enhance my body’s natural elimination processes through the digestive system, kidneys, skin, liver, and lungs. All are essential to help me optimize elimination with minimal aggravation while also undergoing specific treatment suggestions with my gastroenterologist. I have found this support team and naturopathic/acupuncture treatment to be extremely effective as an aid that can dramatically lessen the physical effects of inflammatory bowel disease.
These seven relaxation techniques are really easy to do at home. I do them before my shower daily! Foot massages are also very beneficial, which I do before bed with some moisturizer (I add a bit of organic apricot or sesame oil to the Pure Essentials moisturizer to thicken it up, and I also put cotton socks over my feet if calluses are bad), as well as candle-lit hot baths with lavender oil drops in the water.
- Brush your gums and tongue. Spend at least 5 minutes each time you brush (longer is even better). Set a timer because 5 minutes may seem like a very long time at first. The acupuncture points along the gums match with the entire body system, as does the tongue.
- Brush your scalp. Remember when moms insisted that we always brush our hair for 50 strokes? Turns out, there are hundreds of acupuncture points on the scalp itself. For a quick session, massage the governing vessel 20. This point is located at the very top of the head, the point of 100 meeting points, which enables you to access several channels at once. Spend time massaging your scalp with your fingernails and even while you shampoo.
- Push back your cuticles on your fingers and toes. Just the act of pushing back your cuticles stimulates acupuncture points that go directly to every muscle and tendon in the body, bringing on relaxation. Need to keep a small child quiet at an event? This works like a charm. Plus you can trace every finger front and back as well.
- Loofah your body. This is a hard sponge that softens with use. Loofah plants can be grown, and are much softer than those found at most department stores. (Note: when purchasing a loofah, be sure it says ‘loofah’ on the package.) Use the loofah wherever there is skin. There are thousands of acupuncture points all over the body. If you find a sore or itchy spot, spend extra time there. It is likely that it is an acupuncture point that needs stimulation. Electricity is accumulating there and stimulation via massaging or using a loofah disperses this accumulation. Before showering, use the loofah sponge to aggressively rub from the extremities toward the head, beginning with the arms, then working up from the feet. After you rub all the dead cells off your body, an invigorating shower further energizes you and allows for the stimulation of new cell growth.
- Moisten your nasal membranes. When you splash water on your face, keep water on your little fingers. Put your little fingers inside your nose and moisten all around. You do not need to sniff water up into your sinuses. Moistening your nasal membranes increases your chi (your body’s bio-electrical energy).
- Breathing exercises. Most of us are chest breathers, rather than abdominal breathers, so we tend to breathe shallow most of the day. On inspiration (breathing in), push your stomach out as far as you can. On expiration (breathing out), let your stomach fall back to neutral. This is very difficult to do at first without thinking about it. When you breathe with your abdomen it forces the diaphragm to drop and thus increases your lung capacity. This is why singers practice breathing so that they are able to sustain notes much longer. Breathing leads to more oxygen, more chi and more energy.
- Massage your face, hands, feet, and ears. You can do this yourself, but it is more relaxing and fun if done by someone else. These areas also treat the entire body individually.
(Grateful to Patricia S. Wesley, D.C. for her support)
Daily massage and stimulation will increase blood flow, help improve the effectiveness of your current therapies, improve mood, decrease inflammation, and promote healing.
Remember to think positive, and here is a wonderful quote and photo from the XIV Dalai Lama.
We like to hear from our readers, and thanks for helping spread the word about our book and recommendations!
—Dede, a Crohn’s disease/ulcerative colitis patient perspective—post surgical removal of ileum, large segment of Sigmoid colon, and fistula/granuloma mass—symptom-free for the past eight years, but still a Crohnie/uc-er by definition…
When you read Dede’s latest medical assessment (in the photo), you will see that she has no symptoms…and then read down, and see the symptoms/possible side effects from the medication!
That was May, 2013. In her checkup this past October, the doctors said they are amazed at her condition and attribute it to her and Jessica Black, ND’s low-inflammation diet and lifestyle! They told her that no medication is needed at this time, but only if symptoms occur.
The diet, the exercise, the yoga/meditation, and working with her naturopathic physician as well are all doing their job!!!
High-potency turmeric (curcumin phytosome), a prescribed probiotic powder (Dede buys all her supplements from her naturopath’s office… Expensive, but worth it for the best quality), ultra potent C, Omega 3 fish oil, Phyto-multi vitamins, magnesium with calcium, D3 liquid drops, and a daily adrenal assist (herbal) pill provides key nutrients and botanicals to support adrenal response to stress and support the ability to adapt to stressors and restore balance.
As we move into the wonderful month of February, with longer days and a holiday/school vacations, now is the time to think about training for a walk or a run (Team Challenge, or a CCFA.org walk—http://www.ccfa.org/get-involved/team-challenge.html). Set a goal… Also, add a visit to a naturopathic physician, and try acupuncture (with a trained practitioner who is recommended… If you are nervous about needles, ask for Moxa).
These anti-inflammatory diet and lifestyle changes are a big part of your wellness campaign. Take it one day at a time. Get out in nature (and snow) every day! And continue to heal, and restore balance in your life…
Happy Holidays from Dede & Jessica at Living With Crohn’s & Colitis!
This plan was developed as a guide for generating a treatment regimen. Just as each individual is unique, so too is their road to wellness. This 3-month plan is meant to be used loosely, so you should feel free to adjust each step as needed for your own recovery. Please consult your physician when beginning this program, and continue to visit your established team of specialists (naturopath, gastroenterologist, etc.) so that they can help you monitor your progress and make any necessary adjustments to the program.
As discussed in our book—and is a good idea to read the book before beginning this plan—treatments and lifestyle changes can occur in any order, but here we have provided a plan that will slowly and gently move you through your digestive problems and into wellness. Most patients will feel some positive changes as they progress through this 3-month plan and some patients may even become symptom-free.
The most important aspect of this step-by-step process for building health is that we are creating a foundation for wellness and building upon it, rather than trying to overwhelm the body by incorporating all changes at once. Taking new strides each week helps to keep you focused and motivated through the entire process. We know that change can be overwhelming, which is why we’ve created this program so that it can also be slowed down even further to incorporate new changes every 3 weeks and can be specifically tailored to your individual needs.
NOTE: All severe conditions and the need for surgery must be ruled out by your physician prior to starting this program. If initial acute symptoms are severe, they must be treated either with natural medicine or pharmaceutical medicines to provide relief while working on the underlying imbalances.
NOTE: Stress is a precursor to disease and flare-ups. If you are a parent of a child with IBD, or a patient or caregiver, try to help keep the holidays as stress-free as possible! (Easy for me to write this, as I woke up at 3:00 a.m. worrying about buying presents …. and planning a party! Yikes. But I am off to walk 4 miles this morning AND DO YOGA AND MEDITATE!!!
1. See the change and believe in the change! Visualize optimal colon health daily. See yourself happy, active, and vibrant in your mind.
2. Proper Mealtime Habits—eat slowly, and take your time preparing, shopping, and don’t overeat, or try new foods during the holidays!
3. Remove major dietary causes of inflammation—keep a food journal, and stay away from trigger foods!
4. Add only one supplement or herbal medicine, whichever best suits you. This may be an acute remedy for diarrhea, acidophilus, or any other supportive medicine—for example. I just bought a new supplement—turmeric—because I ran out.
5. Herbal teas: pick one of the teas that best fit your needs and drink daily. I choose Perppermint! Also Chamomile is a good stress reducer. Add honey for sweetening (NO SUGAR AT ALL!)
1. Continue previous points.
2. Add an additional supplement or herbal medicine—talk to your doctor or naturopath about Vitamin D, or Omega 3.
3. Begin the Tapping for Energy technique (in our book) or daily acupressure. Dede likes to massage her feet before bed, using a nice mix of moisturizer and sesame or apricot oil. It is amazing how much stress in in our feet and the acupressure points relate to organs in the body. It is a great routine to press gently on some of these points — the chart shows you were the bowel area is (also liver point is important to gently press).
4. Experiment with adding more anti-inflammatory foods and spices into your diet. Last night, I made a fish curry with garnishes of bananas, raisins, chopped apples . . . yum!
Message me if you want the recipe. It was mild, not too spicy, and used Haddock filet.
1. Continue previous points.
2. Add an additional supplement or herbal medicine. I take grape seed extract when I feel a cold or flu coming on. Try a warm bath at night with lavender oil.
3. Begin to incorporate movement/exercise. Do this at least 3 times per week, but daily possible. This is VERY important…start slowly, but try every day. Begin with your mind—just change the way you think about exercise (like when you get busy at work or with life, don’t eliminate it!).
1. Continue previous points.
2. Incorporate daily nutritional powders into your diet such as spirulina, kelp, green tea, or acai powder—try these sparingly at first, and make sure nothing irritates (Dede does not use spiraling, but kelp and green tea really help keep inflammation at bay. An excellent overall nutritional supplement, but use the best brand and tell your doctor. Here is a nice article from Dr. Oz on acai powder. Dede has acupuncture once a month-another great thing to introduce—if it is too expense, find a “community-supported acupuncture” place to go, like a clinic. Dede’s acupuncturist gives her a discount ($55 per 1 hour session!) because she has a sliding scale. Acupuncture really helps!
3. Add an additional supplement, if needed. PROBIOTICS ARE GREAT, according to Dede, who takes 1/4 teaspoon of powder every day. Again, buy from Naturopath, or Metagenics is a good company. Dede uses “Synergy” brand, all flora.
1. Continue previous points.
2. Add an additional supplement if needed. Talk to your doctor about your magnesium/calcium levels—Dede takes a mag-citrate because she doesn’t have dairy in her diet. Plus, if you have been on steroids for treatment, you want to be sure your bone health/density is good, so it would be wise to talk to your doctor about having a test.
3. Incorporate mental and emotional support. This may be needed sooner in some individuals suffering from anxiety and depression contributing to their illness. Dede swears by “Talk Therapy,” and goes 2x a month. She tells her therapist everything about dealing with her disease, work, relationships, boundaries, stress, etc. THE BEST!
1. Continue previous points.
2. Add an additional supplement if still needing more support. Talk to your naturopath. Your electrolytes need to be balanced. Dede makes homemade chicken soup broth 2x a month. Dede loves being on a Paleo-like diet! NO SUGAR, NO GRAIN (can use Almond and Coconut flours), NO DAIRY!! This is the best! Use Almond mile, eat eggs and organic animal proteins (local chicken is good, beef—but make sure it is antibiotic-free and free range)
3. Incorporate colon hydrotherapy (castor oil packs 5 days per week or constitutional hydrotherapy treatments — details are in our book, along with tons of other lifestyle information! Dede loves her castor oil pack-when her abdomen is sore, she lies down with the pack and a heating pad, and reads, or meditates, or sleeps. Pain goes away!.
Enjoy a stress-free New Years, and look forward to 2014! Remember, a positive attitude improves disease outcome, so “THINK POSITIVE!”
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!
Good day to my fellow Crohnnie’s and UC-ers,
Holidays are fun—remember that!!! In the spirit of our favorite holiday when you have IBD, we are gearing up for a gluten-free, dairy-free, sugar-free, AND grain-free Thanksgiving!!! Yahoo! Can’t wait. Here is what we can eat: TURKEY!!! The best comfort food on earth (with lots of tryptophan in it that makes us feel good), sweet potatoes (yams) that are steamed and mashed with olive oil and a bit of melted canola butter on top, small sweet onions with canola butter, steamed carrots, cranberry sauce (unsweetened), as long as you can tolerate cranberries. Don’t try ANY new food over any holiday. If you go to a potluck, don’t eat, or bring your own food …. Remember to stay positive, get a lot of rest and exercise every day to clear your head. Start meditation, and volunteer at a local Thanksgiving Day dinner (I’ll be making some gluten-free dishes to bring to my town’s open dinner as a donation)….
Take care of yourself! Give back to others, and you will have a perfect holiday!
Here are some more of Dede’s “Living-with-Crohn’s & Colitis” TIPS—
Probiotic & Diet
For PROBIOTICS, look for a pure brand with a 50/50 blend of bifidobacterium and lactobacillus acidophilus. Perhaps you can find this brand: Metagenics, Ultra Flora “Synergy.” Take once a day, with or without food (depends on how you tolerate it). Keep that food journal, and note down any stress in your life, daily exercise, everything you eat. Don’t eat fried or spicy food—keep track, and eat small frequent meals. I have a really OCD technique: breakfast begins with tea and a dash of milk (the ONLY dairy I eat, and my ONE treat ;)), then add a bit of honey (again, buy in bulk and a pure brand). Cold cereal of almond milk mixed with bananas and cut-up melon (add nuts and raisins IF you can tolerate). Snack is peanut butter on carrots.
CHEW EVERYTHING really well!
Drink TONS of water with fresh lemon squeezed into it.
Drink TONS of herbal teas…I like peppermint
Lunch is tuna or chicken salad (use pure fresh, virgin, olive oil!), maybe chick pea humus and a handful of almonds on the side; snack is applesauce and peanut butter. Dinner is a grilled local beef/organic hamburger with steamed zucchini. No grain, no sugar, no dairy. I eat ALL the time and feel great on this diet. I don’t even crave sugar!
Good luck and stay positive. YOU CAN DO THIS!
RX, Flare—Where to begin…. Here are some lifestyle tips, from Dede, who has been in remission from Crohns for almost eight years…. Do not despair.
“There is a saying in Tibetan, ‘Tragedy should be utilized as a source of strength.’
No matter what sort of difficulties, how painful experience is, if we lose our hope, that’s our real disaster.”
—The Dalai Lama
Take control: hydrate, sleep, exercise, yoga meditation, daily…
Walk 1-4 miles per day
Sleep at least 8 hours per night (take powdered magnesium bicarbonate—Dede likes “Natural Vitality’s Natural CALM in the Raspberry-Lemon flavor, drink fresh-squeezed lemon-lime-flavored water all day long (carry glass water bottle with you, and the new ones are encased in non-breakable plastic or rubber)
Drink herbal teas—Chamomile, dandelion root, peppermint— and also Green Tea that has caffeine, but also comes in decaf.
Movement & Meditation
Start a gentle yoga DvD (Rodney Yee’s a.m. Yoga is wonderful), and set up a “yoga studio” in your house or apartment somewhere (mine is in the basement with an old TV, but I have made it my own with a little table and a small wooden Buddha, candles—it is peaceful and my own space).
This yoga will lead to guided meditation. Even 5-10 minutes a day improves patient outcomes! A local class or “sangha,” is a nice way to learn to meditate.
Watch Your Diet
Once you get in tune with your body, you can start to really tell if certain foods make you begin to flare and you can back off immediately and note in your journal to keep track.
Keep a list of safe foods, foods to avoid.
Body Care—It Pays to Be Beautiful!
Use essential oils to sniff daily. I like lavender oil in my bath, eucalyptus oil in the shower
Massage your feet every night before you go to bed. Use a nice moisture lotion (with lavender, if you like it), and I add organic apricot or sesame oil to make it thicker.
Take some “Natural Calm” magnesium powder each night in a hot glass of water before you go to bed… You will sleep better!
Massage the back of your neck—press with acupressure in the “still point” at the base of your skull—get a friend, or spouse, to help.
Speaking of….ASK FOR HELP! Don’t do what I did, which was to lie in bed and retreat from the world for days at a time…the only trip to the bathroom for a journey…. Ask for help—on Facebook, or pick up the phone.
See a therapist, once a month, or join a group for IBD, Crohn’s, colitis, or autoimmune disease.
Volunteer at a soup kitchen or homeless shelter, or environmental action group…. Altruistic behavior helps you to let go of stress.
Last, but not least, LAUGH every day! Watch the stupid pet videos… Or this goofy video my friend, Dodie, sent me this morning… She is going through cancer treatment, and she is very brave and a wonderful friend, who retains a sense of humor!