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.
Since my garden is starting to produce, I have felt more empowered to eat healthy. It is kind of a no-brainier that growing your own food is rewarding, cheaper than buying, and it also gives you a good workout (like try turning over a garden bed and weeding, for some arm-toning work!). I found this video recently in my research, that is excellent, and I am very interested in the Japanese study cited by Dr. Michael Gerger (I checked out his other videos, too, on http://wwwnuitritionalfacts.org.) about becoming a vegetarian, and the benefits for those of us with IBD. Exciting results….and being a partial vegetarian isn’t that bad . . . Read on!
Decrease Inflammation through Diet and Lifestyle Canges
Likewise, dietary goals to help us cope with Inflammatory Bowel Disease are always on my mind since I wrote the book with Dr. Black. I want to share with you some of the recent changes in my diet, and how it is helping quiet my gut and make me feel better and more energized.
No Red Meat
First thing: don’t eat hamburgers! I LOVE them, and can add them to the list of foods I gave up, and miss a lot (in case you are wondering: pizza, bagels, and a grilled burger with melted cheddar cheese…..).
Rather than feeling sorry for myself, while my husband grills his burger, I switched to Amy’s (TM) brown Rice crust pizza, rice cakes instead of bagels, and Gardenburgers (TM) instead of hamburgers (on the grill with some low-fat cheese and topped with a slice of Spelt bread).
Lighten Your Dairy Load
Switch to yogurt! In Breaking the Vicious Cycle, Elaine Gottshalk recommends making your own yogurt, but if you can’t, you can buy a high quality brand, like Stonyfield Farm 0Fat yogurt, and switch to lowest fat cheese, like Feta, pecorino Romano, part-skim and aged cheese, for just a few examples. There are some great lactose-free products on the market. Here’s a good article from Everyday Health to support this.
Now What Do You Eat?
Call me crazy, but I love this question! No wheat, no red meat, (note that I am able to digest dairy pretty well), and limited dairy….INCREASE fruits and vegetables. This is the plan! And the garden—wow!—my little 3 x 10 foot raised beds are producing like crazy now. (See attached photos of my two humble raised beds, packed with yummy veggies and flowers you can eat and also to keep pests away.)
Even our First Lady, Michelle Obama, is into the family’s vegetable garden—there is even a new book out about it, with recipes (I found a very funny review in The Daily Beast!).
And, it isn’t that hard to do—all you need is to add some good organic composted soil mix, and some starter plants like tomatoes, basil, lettuce, kale, broccoli, scallions, and Brussels sprouts, maybe some snap peas and cucumbers, and, voila! You have a garden!
What can we do going forward?
Grown your own food, and commute to work via metro, bus, or carpool; or better yet, ride your bicycle or walk. Rather than sitting around complaining about how hot it is, try riding your bike or walking in the early morning, before the heat gets oppressive, have your shades drawn during the day to keep your house from overheating, etc. Start small, and you will feel like you ARE making a difference. This summer, it is hot, dry, humid, and there are countless areas in the world showing record-setting droughts, heat waves, etc. With environmental activist, Bill McKibben sounding the alarm, (see this excellent article in the Guardian), people are starting to listen. The whole Eastern seaboard of the United States is at risk from tropical storms and rising sea levels, in just “one” example of how burning fossil fuel is contributing to the heating up of our planet.
We must adapt environmentally, as well as health-wise: inflammation being the byproduct of idiopathic (no known cause, no known cure) diseases like Crohn’s, colitis, IBS, etc.