I found this photo this morning, when I was remembering how scared I was going in for surgery for a bowel resection due to a serious, three-week, blockage of my small intestine from complications of Crohn’s disease.
I only weighed 117 pounds in this photo, taken with my son’s college roommate, Justin, two days before my operation in 2006. I was so skinny and malnourished, it’s hard to believe now that I am over twenty pounds heavier! I also found my husband’s post on my CaringBridge site (which still exists under “DedeCummings”), and I want to tell all my readers and followers of this blog, that you should never give up hope!
Written May 22, 2006 8:35pm
The news from Hanover is very good: Dede was in surgery from about 9:30-noon, and awoke (in a manner of speaking) about an hour later. She had a good grip on the button of her morphine pump, and smiled beatifically every time she heard its answering “beep.”
Dr. Henriques took out approx. 5 inches of her small intestine, of which 5 cm had severe scarring and the rest was worn out, and about the same length of large intestine, which had been scarred by a fistula (an “abnormal passage” connecting the two, resulting from her disease/scarring). The doctor held up his index fingers like a fisherman describing his catch when describing all of this.
He also took out her appendix while he was in there, so we’ll have no access to supplementary information about her internal organs in the future. (Sorry: lame book joke…) Her gall bladder looks fine, just for the record.
He expects her to be in the hospital for only a few days, so she could get home as soon as Thursday. She has already gotten out of bed, taken a few steps, and sat up for a while.
By tomorrow she’ll be treated to smoothies and milkshakes, and can eat some solid food by the end of the week–Dr. Henriques predicts that she’ll be voracious by that point.
Thanks for all of your lovely notes and positive thoughts; I’ll be able to get my computer online in her room tomorrow, so keep ’em coming.
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 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.