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.
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.
Jessica Black, ND, my co-author, naturopathic doctor, mother of two, avid outdoors woman, and cookbook author of The Anti-Inflammation Diet & Recipe Book, was the reason my own story, and our book, Living With Crohn’s & Colitis, got published. By reading Jessie’s book that I purchased one day at my naturopath’s office, she inspired me to eat better, and thereby lower my body’s overall level of inflammation. . . . I contacted her about how great her book was, and we decided on the phone to write a book together. The rest, as they say, is….well a book that is helping tons of people because it is good science and a patient perspective. Fast forward to today. . . .
After my colonoscopy results last week, I crawled into a little shell and barely communicated with friends, and family….I was also exhausted from the fasting and quite sore from all the probing and poking around in my small intestine! I called my insurance company, CBA-BC/BS VT, and found that the Mayo Clinic was “in network,” and they registered me as a patient. I can go there for a second opinion, probably in January when my sister can join me. Everyone was “so nice.” When I said those words on the voicemail of the surprisingly helpful insurance business rep, I burst into tears — ah, delayed grief!
Fast forward to yesterday
With a better attitude, more energy, and (by the way) no symptoms of Crohn’s (which are, when severe like my case: diarrhea, vomiting, cramping, skin ulcerations, joint pain, etc.), I followed up on my weekend consult with my co-author and nationally-recognized naturopath, Jessica Black (who, by the way, dropped everything on a Saturday to make a phone-house call for me!), with a visit to my local naturopath, the wonderful Cheryl Procter. Additionally, I made an appointment with my clinic gastroenterologist, Steven Bensen, to follow up on my colonoscopy results. I see him January 23rd, and I firmly believe in following both paths, down the middle if you will pardon my overuse of the metaphor, with allopathic medicine and naturopathic medicine, on either side.
My Naturopathic Treatment Plan
Here is what I am on now: Low Dose Naltrexone, High Potency Turmeric, Glutamine, probiotics, Vitamin D, Vitamin C with Echinacea, along with my multi-vitamin, adrenal support, and Omega 3. I am researching LDN like crazy, and found this study with positive results . . .
Since my diet is very low-inflammation (thanks to Jessica Black, ND!), I am really being careful now (after 6+ years of remission, I was definitely slacking!): No sugar, red meat, fried or fatty foods, etc.
Below, is a recipe for a delicious cornbread from my friend, Julie Robinson at the Brattelboro Food Cood (thanks doll!)… Note, I substituted 2 Tablespoons Honey for the sugar, and Rice Milk for the milk, and Tofutti Sour Cream for regular sour cream…. YUM! Here is a great NYT link to gluten-free dishes, too! ~
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….
My article was published this morning….
Kind of excited. Hope my fellow Crohnnie/uc-ers like it! I got some help from ccfa.org, too! I worked with editor, Travis Saunders, a PhD student researching the relationship between sedentary time and chronic disease risk in children and youth. He is also a Certified Exercise Physiologist and competitive distance runner.
I had a hard time finding studies that were recent, dealing with the impact of exercise on Crohn’s and Colitis. Research that I found shows that it does help, and I would love to hear from readers who have some things to add, or if there are problems associated with exercise and IBD.
Obesity Panacea is an awesome blog, and I am trying to help promote it. Thanks!
Photo © 2012 “Mike” Michael L. Baird
When I was having flares (for Crohn’s disease), and they had trouble diagnosing me, I had to have lots of tests, like “colos” (as the are commonly called when you are an IBD patient at my clinic) that were quite frankly unpleasant and the prep medicine was noxious (the other not-so-fun test is called a barium enema, so that involves basically drinking metal that they follow down from your esophagus to your stomach and into the large intestine).
One thing some doctors aren’t good at is telling you the details, so, if you are new (and possibly nervous), I advise doing your own research. In my own case, especially since I have a chronic disease (though I am in remission now, thanks in part to the SCD), I usually take great care in my prep for the test. The problem is we are all busy and sometimes don’t have time to plan and take the necessary time to prepare.
If you approach the colonoscopy with a positive attitude (as if were a “cleansing” kind of thing), you will be less anxious, at least that has been the case in my experience. (As an aside, my father used to love the lightness he felt after the test, since he was always trying to loose weight!) However, it is not always a pleasant experience for people, and many are anxious about it not working fully and being embarrassed. I am sure that the doctors and nurses have seen it all, really, but that doesn’t help when it is you as the patient!
Back when I was first being diagnosed in the late 1990s, I was given the Fleet enemas to use, however many hospitals don’t recommend them anymore. Laxatives can be very dangerous and can cause problems, especially in the elderly, or people in the midst of IBD flares, etc. Since UC/Crohn’s diagnosis and preventing colon cancer is a huge concern, the test is important and should be done—in my case, yearly; but most people over 50 who have normal results can go less often obviously.
The delicate balance within the body to maintain homeostasis is something you don’t want to throw off. The goal of the color “pre-prep,” is to draw water into the gut to flush it out in order to get the best and most accurate picture for the test.
A few days before my test, I start eating lighter: I usually have small frequent meals anyway as part of my regular IBD-prevention/anti-inflammatory diet that I follow from Dr. Black’s naturopathic recommendations.
Soups, like clear organic chicken broth, are the best for maintaining an electrolyte balance. You don’t want to load up on foods that create bulk in the gut at the time that you start this process, the more you have to eliminate–you will be more comfortable if you don’t have to deal with so much of it 🙂
The prep that they ordered for me to take is called “Halfytel”TM (I hate those cute-spelling names for things that make you feel bad!), which induces catharsis (which is increased motility of the gut), and it does that by a combination of the electrolytes and the osmotic effect, that is drawing more water into the gut–there is sodium and polyethylene glycol (electrolytes) in this product. The Bisacodyl tablets that you also take the day before and the morning of your test are basically “stool softeners,” and they produce a direct irritant action on the gut that also increases motility (the speed and contractions of the gut). When you speed this up, it literally pushes everything along. How is that for a description?
So two days before, I eat small frequent, less-bulky meals: clear soups, fat-free things, small portions of skinless baked chicken, and simple, SCD-approved things like applesauce. The day before the exam, after breakfast, I follow a clear liquid diet—green tea, water, plain natural gelatins (commercially called Jell-O, but like the natural stuff without refined sugars). You cannot have any solid food, and it is important not to drink anything dark red or purple (like grape juice).
So, you order the prescription five days before, and you drink the HalfLytely, or Nulytely, the morning of your procedure—only clear liquids until two hours before. I arrive at the hospital at 9:00 and you check in and then hang out. They give you a drug that totally relaxes you (I cannot remember the name—Versed?), and that really helps! Usually, I can go home by 12:30. Many times, I am awake during the procedure, but I know my medical team so well, that we usually joke around. You lie on your side and it is important to have a highly skilled doctor perform the test, because there is a risk of bowel perforation (sounds as bad as it is!).
After my colonoscopy, I usually reintroduce foods SLOWLY and keep a food journal, to make sure something doesn’t irritate me—I start with tea, then add applesauce, turkey, etc, lots of healthy organic food. After a few days, I get back on my vitamin, Omega 3, flax and probiotic supplements—going slowly; obviously, you can’t drink alcohol around this time, or sodas and unhealthy, or fried foods, if you follow the SCD, but people shouldn’t eat that stuff anyway—I don’t eat any processed food at all, no sugar, no wheat, for almost five years now! I live on fruits and veggies (and I added rice back in after I was fully in remission with no problems, and I added some caffeine, too) and proteins—I also drink lots of water. I wrote this piece mostly because I was asked by an reporter to give her some information about colonoscopies, so I thought it might be helpful for people on Adam’s site, and mine, too. Now, back to stacking wood for winter!