Food is one of life’s great pleasures. Complex or simple, it can be used as a source of entertainment, an expression of emotion, or strictly for sustenance. Disorders that involve the digestive tract can be especially challenging because, unlike some pathology-inducing behaviors like smoking or alcohol use, eating is not optional. One way or another, nutrition must have access. And if the gastrointestinal (GI) tract is swollen or clogged with scar tissue, that spells trouble.
What happens then, when the act of eating has the capacity to trigger breathtaking pain? How can you function if your intestines are impacted by random attacks creating inflammation and spasm? And—more importantly for our purposes—can massage therapy make a difference?
“Since I was little, I was known as the ‘sick girl’ and the ‘Stomachache Queen.’ By the time I was ready to go to college, I had shrunk to 95 pounds. I went to the doctor for a checkup, and he insisted that I see a gastroenterologist; it was then that I was first diagnosed with Crohn’s disease at age 17. It was awful. The testing, the stress, the testing, the stress. In the middle of all this my mom said, ‘I’m taking you for a massage.’”
Meredith Kusmer Jerome
Crohn’s patient and massage therapist
What is Crohn’s disease?
Crohn’s disease, named in 1932 for Burrell B. Crohn, is an autoimmune disorder that affects the lining of the digestive tract. Crohn’s disease and ulcerative colitis are collectively referred to as inflammatory bowel disease, but they are etiologically distinct conditions. Where ulcerative colitis is limited to the superficial layer of the colon lining, Crohn’s disease can affect the entire GI tract from mouth to anus, and the associated ulcers and other lesions can penetrate through the mucosal lining, muscularis, and peritoneum.
Crohn’s disease affects somewhere between 700,000 and 1 million people in the United States. Most patients are diagnosed between ages 15 and 35. Unlike many autoimmune diseases, Crohn’s disease affects roughly the same number of men as women.
This condition can involve one episode or many. It can be a minor irritation or excruciatingly painful. No single treatment is universally curative, and while some patients find long-term relief, others face a lifetime of progressive loss of intestinal function along with complications that range from joint pain to kidney stones to an increased risk for colorectal cancer.
Etiology
At this point, most experts agree that Crohn’s disease is a multifactorial condition, involving a combination of genetic predisposition, environmental exposures, and sometimes a triggering event that sets off an autoimmune attack in the digestive tract.
Our Microbiome
One of the most exciting fields of research in human health today focuses on the microbiome of the digestive tract. Each of us has a unique internal environment that is influenced by what we eat, where we live, who we live with, and—amazingly—our parentage. It seems that some of the bacterial strains that serve us in the process of digestion are inherited from our parents. When that internal environment is consistently disrupted (this is called dysbiosis), it appears to pave the way for several disorders, including obesity, diabetes, metabolic syndrome, and inflammatory bowel disease, including Crohn’s disease. The precise sequela from unbalanced gut flora and fauna to Crohn’s disease is not completely clear, but many experts theorize that a disruption triggers an inappropriate immune system attack on bacteria in the gut, which then leads to the many signs, symptoms, and potentially dangerous complications that characterize this disease.
Our Virome
One particularly interesting line of inquiry has identified that along with our resident bacteria, fungi, and yeasts, our colon is also host to a multitude of viruses. This “virome” is the subject of much investigation. The residual DNA found in the stool samples of people with Crohn’s disease appears to belong to types of viruses that have not yet been identified. For some people with Crohn’s disease, these intestinal viruses may invade and kill off colonies of their health-promoting bacteria; this may be what knocks things out of balance and triggers an autoimmune attack.
Gut Disruptions
Many commonplace activities can disrupt our internal environment. Antibiotics, diarrhea, and even jet lag have all been seen to alter the healthy biodiversity in the colon. Scientists who specialize in studying the human gut microbiome are investigating whether changes in that environment precede Crohn’s disease flares; this would allow treatment to anticipate the attack, rather than always trying to catch up.
The inflammation from Crohn’s disease involves the unrestrained activity of certain types of T-helper cells, along with several strongly pro-inflammatory cytokines. In addition, many people with inflammatory bowel disease have an abnormal epithelial barrier within the digestive tract, which allows for inflammatory cells to invade deep mucosal layers. The result is deep lesions called granulomas that can extend through all layers of the intestinal wall, thickening the bowel with excessive scar tissue. And, unlike ulcerative colitis (which usually involves one large, continuous lesion), Crohn’s disease granulomas can appear throughout the digestive tract in disconnected, patchy skip-lesions.
Signs and Symptoms
Abdominal pain is the leading symptom of Crohn’s disease. Fever and bloody diarrhea may be present during flares. Weight loss follows, as the ability to eat healthily is impaired. When it occurs in children, failure to grow and delayed puberty are possible signs. This condition runs in cycles of flare and remission, but even during quiescent periods, dehydration, diarrhea, and fatigue are ongoing issues for people who live with Crohn’s disease.
The most common first lesion in Crohn’s disease is at the distal end of the ileus, so cramping pain that focuses in the lower right quadrant of the abdomen is the most typical early sign. Unfortunately, this can also look like ulcerative colitis, appendicitis, celiac disease, diverticular disease, giardia, irritable bowel syndrome, Clostridium difficile infection, and a host of other conditions, and each of which requires a different treatment strategy. Consequently, the testing for Crohn’s disease tends to be intrusive, lengthy, and nerve-wracking.
Complications
The complications related to Crohn’s disease are potentially very serious. Here are a few:
Stenosis
Most Crohn’s disease patients experience some level of stenosis, or narrowing of the digestive tract. Early in the disease, this is probably from a combination of inflammation and pain-related spasms. Later in the process, however, the accumulation of fibrotic scar tissue can form permanent strictures that limit the passage of material through the GI tract.
Fistulae
Another important and potentially dangerous complication is the result of those strictures. As testament to the remarkable capacity of the human body, the body will attempt to build a new passageway when material cannot pass through a tube. These new passageways are called fistulae. In the case of Crohn’s disease, these fistulae can link one loop of intestine to another, or they can go from the intestine to the urinary bladder, or from the intestine to the uterus, or sometimes even from the intestine directly to the skin; this typically happens around the anus. Secondary infection and abscesses at these fistulae are significant risks because they allow material to gain access to parts of the body that don’t have protection from fecal bacteria.
Extra-Intestinal Manifestations
Crohn’s disease affects more than the digestive tract; it appears to trigger generalized inflammatory reactions in many areas. These complications are called extra-intestinal manifestations.
Inflammation of the eyes is common, as is inflammation of the lungs or the pleurae. The gallbladder, liver, and pancreas are frequently affected by inflammation related to Crohn’s disease. Inflamed and painful joints, kidney stones, hypercoagulability of the blood, and a blistering rash that appears on the shins are all signs of dysregulated inflammation associated with this disease. In addition, reduced access to nutrition makes people with Crohn’s disease especially vulnerable to osteoporosis and anemia.
Finally, people with Crohn’s disease, especially those who were diagnosed young and who have multiple lesions, have a significantly increased risk of colorectal cancer.
Treatment
The treatment options for Crohn’s disease are somewhat controversial. Many specialists argue whether a bottom-up (starting with low-impact treatment and ratcheting up as necessary) or a top-down (getting ahead of the disease process with biologic drugs and then scaling back as possible) approach is best. Ultimately, of course, this decision must be made on a case-by-case basis.
For most patients, pharmacological therapy includes a range of options: 5-aminosalicylic acids, antibiotics and nutritional supplements, steroidal anti-inflammatories and immune system suppressants, or biologic therapies that alter T-cell activity. Other drugs might also be employed to manage symptoms and complications.
Dietary adjustments for people with this condition mostly center around being sure that adequate nutrition is achieved, and most patients feel better when they avoid roughage: raw fruits and vegetables with peels, nuts in any form other than as nut butter, anything with small seeds (strawberries, tomatoes), corn, and popcorn.
About two-thirds of all Crohn’s disease patients have at least one surgery to remove diseased sections of the GI tract by the time they’ve been diagnosed for 15 years. Because this condition occurs in disconnected patches, however, a surgery is not considered to be curative; it can return somewhere else.
Massage for Crohn’s Disease
Little research has been conducted about massage therapy as an intervention for patients with Crohn’s disease. However, general trends suggest that people with chronic pain conditions are often enthusiastic users of CAM interventions, and massage is typically the most popular choice. It is interesting to point out that most inflammatory bowel disease patients do not use CAM interventions specifically for disease management, but rather for stress or other problems they feel contribute to their symptoms. This is supported by the experiences of several massage therapists who shared their stories for this article.
Most MTs reported that their clients usually did not come during a flare, and when they did, only the gentlest, nonabdominal work was welcomed. At other times, depending on the client’s needs, massage could be conducted without any special accommodations. Some clients were able to manage their disease proactively with a careful diet, exercise, and yoga; others used prednisone and repeated surgeries. A common theme is that clients feel massage therapy helps them with the stress associated with having Crohn’s, and that managing the stress decreased the likelihood of having another flare.
Positioning was also variable: some clients were able to receive a bodywork session that required no adaptation, but others could only receive work from a side-lying position.
One therapist shared that her client had been turned away by other practitioners because of her condition. This brings up a subtle but important aspect of living with a chronic disease: its influence on self-esteem is hard to estimate. Anxiety, depression, and a sense of the loss of the ability to cope with even minor life stressors may seriously impact a person’s quality of life. Whatever the status of your next client with Crohn’s disease (flare or remission, under control with minimal treatment or gearing up for a surgery), I hope you’ll feel confident to call on your patience, your ability to listen with all your senses, your compassion, and your unique skills to offer the very best of what massage therapy can give for this population of clients who live with such great challenges.
Ruth Werner, BCTMB, is a former massage therapist, a writer, and an NCTMB-approved continuing education provider. She wrote A Massage Therapist’s Guide to Pathology (Lippincott Williams & Wilkins, 2013), now in its fifth edition, which is used in massage schools worldwide. Werner is available at www.ruthwerner.com.