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!
“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.
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….
What is cool, is when the patient starts to take control! That is something that leads to better health, in my experience. One site I go to frequently, via RSS feed, is my friend, Adam’s, called IHAVEUC. Adam just published his own book, and I recommend that, too. He has a great way of making you feel not so alone! Also, there is a new video on his site about his book, and his own story. A recent post from a business school student, 24 years old, really caught my attention: He is trying to take control of his life and integrate alternative therapeutic healing modalities into his gastro-clinic care. Here is the link to ihaveuc.com. Enjoy and don’t be shy!
So, this “patient-taking-control” idea, has me thinking:
I went to the ER recently (for Poison Ivy), and the doctor said, “You don’t really seem like someone with the Crohn’s personality.” ????? huh??????? is the UC/IBD personality something doctors talk about behind our backs? I’d love to hear others’ experience about this!
I have a recent article from this week to post, also, about the multitude of bacteria that lives in the gut, and it is posted here—VERY interesting! I suffered from giardia when I swam in a river that was polluted with animal feces (not fun! and I had no idea…), which caused me to experience my first severe flare-ups of Crohn’s-Colitis, back in the 1990s . . .
The article is from a cool blog, called Gizmodo, that my son, Sam, found (thanks to my family and friends for always thinking of me, and forwarding me breaking news!), and I think it shows the link between gut fungus to IBD! Hooray, the scientists are getting going on a new frontier.
And, I firmly belielve that the gut has a “mind of its own.” (Read The Second Brain, by Dr. Gershon.) Dr. Gershon is chairman of the Department of Anatomy and Cell Biology at Columbia University’s College of Physicians and Surgeons at the Columbia-Presbyterian Medical Center in New York City and is a pioneer in research related to the gut/ brain relationship. In his book, he presents a combination of neuroscience and gastroenterology that I find fascinating. Dr, Gershon has devoted thirty years of research to this “brain in our bowel” science, and his writing is persuasive and passionate. In contemplating the body’s balance and harmony, one is struck by the simple connection between the brain in our head and the brain in our bowel.
I’ve often wondered where expressions like “I feel it in my gut,” or the ubiquitous “butterflies in my stomach,” came from. As a layperson, writer, and Crohn’s disease patient, I am fascinated by the connection between the brain and gut.
We are Number 1 today on Kindle!
I don’t know why, but I am excited. Book sales are steady, and people are writing and reviewing the book and they say it helps them. So, this is good! My new cookbook, “Cooking Well: IBS,” is almost ready to go to the printer…. A great cookbook (if I do say so myself!) with over 100 recipes that are healthy and easy. I am featuring the localvore movement and the work of Michael Pollan.
Last, but not least, I went to my local naturopath’s offce, and found our book on the table in the waiting room like this (photo by Seth Phoenix):