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…
Dear Fellow UC-ers and Crohnnie’s, Happy New Year!
One of the best resolutions for the new year that is underway, is to have a positive outlook!
I know, I know, sometimes it is really HARD to have that when you feel lousy, but our community that has grown around the book, and the online network of Crohn’s, colitis, IBS/IBD, and other autoimmune disease is a supportive one. With that in mind, I propose a three-month guide to wellness. It isn’t a medical guide, and you should always consult your GI about doing anything dietary or herbal, or even lifestyle changes.
As usual, start with moderation, and keep a daily journal — not just about the food you eat, but what you do, how much you exercise and for how long, when you have acupuncture or massage, or have your period, or if you are exposed to anything potentially toxic in your environment—keep track of it all! Dede swears by this, and Jessie says she has patients that immediately start making connections (like, for example, maybe that whole bag of chips you ate the other day wasn’t such a good idea….). That said, here is the First Two Week GOAL. Take it slow, and modify as necessary.
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 plan.
3. Remove major dietary causes of inflammation—keep a food journal, and stay away from trigger foods! (For Dede it is wheat, sugar, and dairy—I know, hard to imagine life without dairy? Then switch to almond milk which is so good!)
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, Dede started a new supplement, turmeric, which is a natural anti-inflammatory. She takes two capsules daily, and tries to cook a curry dish once a week or so.
5. Herbal teas: pick one of the teas that best fit your needs and drink daily. Dede drinks Peppermint! Also Chamomile is a good stress reducer. Add honey for sweetening, as you like.
6. Take it slow and easy. Be kind to yourself, and ask for help!
Happy New Year!
From Dede and Jessica, and the LWCC group—we are here for you!
Email with questions to firstname.lastname@example.org
Or to Jessica Black, ND at
Sam, Sherri, Dede, and Saskia at the end of the CCFA’s Nape to Sonoma Half Marathon last summer—we were all tired but elated to have finished, and raised almost 2 million dollars for IBD research for the CCFA.org.
Follow Saskia’s blog—she is an inspiration to us all!
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.
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.
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….