Imagine if there was a disease that was affecting more and more young people – your friends, your relatives, your classmates – and most of the population was oblivious to it because it was considered too embarrassing to openly discuss. Imagine the frustration of trying to spread awareness about a disease that is often overlooked, misunderstood and misdiagnosed. I’d like to clear the air about this disease and get it all out in the open. What it is, what it’s like to live with it and why it needs more of our attention. Hopefully, after reading this article, you will be more inclined to start an open discussion about it with the people you know, and in the process help to dispel some of the stigma surrounding Crohn’s disease.
Written by REMY MELINA – Typography by JOHN GAGLIANO – Photography by MATT FRIED – Special thanks to DR. ANTHONY WEISS
One day, out of the blue, you begin to suffer from mysterious stomach pains. You often lose your appetite. When you do manage to get some food into your system, it doesn’t stay there for very long. Bouts of diarrhea and vomiting plague you several times a day. This of course leads to rapid weight loss. You develop a persistent fever and discover rashes on your body. You notice that you’ve been catching colds more easily that you ever did before and that your energy levels are lagging. Despite a constant feeling of tiredness, you suffer from sleeplessness, which allows for you to spend your nights tossing and turning in bed, worrying about what’s wrong with you and why it seems like your own body has suddenly turned against you.
Your doctors run a battery of tests, then more tests, trying to determine the cause of your ailments. If you are lucky, your doctor will recognize the symptoms of Crohn’s disease and will refer you to a gastroenterologist – an internal medicine physician that specializes in the treatment of disorders of the gastrointestinal tract. However, if you doctor doesn’t have enough knowledge about the range of symptoms a person with Crohn’s disease can experience, he or she may misdiagnose you or try to treat each symptom individually, putting you on an array of medication and possibly even resorting to surgery, all while being unable to pinpoint the direct cause of your sickness.
“When I was diagnosed, I was ten years old,” says 24-year-old Amanda Weinstein, recalling what it was like to grow up with Crohn’s disease during a time when many people had no real knowledge of what it was. Thankfully, medical treatment has advanced a great deal over the past few years for Crohn’s disease patients, but it still has a long way to go.
“Basically, as much as I can remember, I was rapidly losing weight, probably about five to seven months before I was diagnosed, along with being so sick every time I ate. I’ve seen a picture of myself the day before I went into the hospital, I looked like a skeleton. I also remember going to Disney World the year before I was diagnosed and I think that was when things started to act up, because I couldn’t eat and I couldn’t even really walk anywhere – I was forty pounds, with green colored skin all the time, losing hair and basically I couldn’t walk, because I also had severe joint pain. It took months of going back and forth to the doctor before anyone had any inkling of what it could be… They thought first that I was not eating on purpose, then because Crohn’s shows itself in different ways, they thought Leukemia or Lupus. Finally I saw a new pediatrician who took one look at me and immediately thought Crohn’s.”
The Crohn’s and Colitis Foundation of America (CCFA) defines Crohn’s disease as a chronic disorder that causes inflammation of the digestive or gastrointestinal (GI) tract. It most commonly affects the small intestine and/or colon, although it can involve any area of the GI tract from the mouth to the anus. Ulcerative colitis is a disease that is related to Crohn’s and has many of the same symptoms, sometimes making it difficult for doctors to establish a definite diagnosis between the two, as they are the main disease categories that belong to a larger group of illnesses called inflammatory bowel disease (IBD). The CCFA estimates that approximately ten percent of colitis cases are unable to be identified as either ulcerative colitis or Crohn’s disease and are called indeterminate colitis.
With both illnesses, the body’s immune system has an abnormal response, possibly to microbes such as the bacteria normally found in the intestines. The body sends white blood cells into the lining of the intestines in order to attack what it has mistaken as foreign or invading substances, in the process causing chronic inflammation and ultimately leading to ulcerations and bowel injury. If a child is born with Crohn’s disease or develops the disease early on in life, he or she may experience slowed growth and delayed sexual development as nutritional deficiencies are common among Crohn’s patients. This is why knowledge of the disease’s symptoms and early detection are crucial to improving the quality of life for people with Crohn’s.
Despite continuous research being done on Crohn’s disease, investigators have yet to determine what causes the disease. They believe that the patient’s immune system is unable to properly control its inflammation response and turn it off at the right time, leading to damage of the intestines and a range of related symptoms in varying degrees of intensity. Because of this, many doctors recommend the use of medication to help Crohn’s disease patients better regulate their immune systems.
There are several groups of drugs used to suppress the inflammatory response of Crohn’s disease. Often, patients have to try a number of different medications at various intervals to determine which is right for them, or use a combination of several drugs and supplements that is carefully monitored by their doctors. Special diets can also be followed to restrict foods that a patient knows tend to cause their symptoms to flare up or that they have a history of having negative reactions to. In between flare-ups, a period of time which can last anywhere from a few weeks to several years, many people with Crohn’s disease live relatively free of symptoms.
“Currently I have never undergone any surgery, but I am on Remicade, which is an IV treatment. I get it every two and a half to three months,” Amanda says. “I consistently take Pentasa, Prevacid, folic acid, Methotrexate and Remicade, all to manage my Crohn’s and rheumatoid arthritis.”
Amanda was diagnosed with rheumatoid arthritis at age 15. Because Crohn’s disease is not always limited to the gastrointestinal tract, it can also affect the joints, eyes, skin and liver. Early detection and a correct diagnosis are vital to controlling symptoms and preventing irreversible damage to the patient’s body that could result in the need for surgery.
Two-thirds to three-quarters of patients with Crohn’s disease will require surgery at some point in their lives, according to statistics gathered by the CCFA. Patients must undergo surgery when medication can no longer suppress their symptoms or when the disease has caused intestinal obstruction or other dangerous complications. The development of fissures, or tears in the lining of the anus which lead to pain and bleeding, may also require surgery. The constant inflammation of the intestines can also cause fistulas to develop. A tunnel that leads from one section of intestine to another, or that forms a connection to the bladder, vagina or skin, fistulas often require surgery to be corrected.
Chris, 34-year-old living in Queens, first realized that something was wrong with his stomach when he was 17. Due to Chris’ consistent lower abdominal pain, his doctor originally thought that he had an ulcer, but after a colonoscopy, it was determined that Chris had Crohn’s disease. Since then, he has had four surgeries to treat fistulas and other Crohn’s disease-related conditions. He says that he has been on too many medications to remember all of their names, but that taking Remicade has significantly improved his ability to overcome the symptoms that have plagued him for almost two decades.
“When they first diagnosed me, I didn’t take it seriously, I didn’t listen,” Chris says. “They told me to take Asacol and Prednisone. I stayed on that for maybe a month because the medication didn’t really make me feel better. Nothing worked for me until Remicade.”
“I needed an operation for a fistula, which was a hole in my bladder, in 1997. My intestines were pretty infected. I had the operation, but then in 2001, the fistula came back and I need to be operated on again. At that point, I just didn’t care anymore. I didn’t take any of the medication; I kind of gave up on life. Then in 2006, I was back in the hospital because I’d had another attack. I weighed maybe a hundred and thirty pounds. I thought to myself, ‘I’ve got to accept the disease already and just move forward, step by step.’”
Since he began taking Remicade last May, Chris has felt a tremendous increase in his energy levels and overall health. The first treatment made specifically for Crohn’s disease, Remicade relieves symptoms by binding and blocking the effects of TNF-alpha, a protein involved in the inflammation process. It is prescribed to patients only after they have tried other therapies and it is clear that other drugs have failed to treat their symptoms. Chris says that his previous doctors considered Remicade to be a “last resort” treatment option for him and he believes that if the IV treatment had been made available to him earlier on, he may not have had to undergo so many surgery procedures. He receives a dose of Remicade every two months and also takes a drug called Azathioprine. Chris was recently able to go on a trip to Japan, something that he would not have been able to do without getting seriously ill prior to being on Remicade. He credits the treatment with allowing him to lead a very active, energetic lifestyle.
“I’ve been rockin’ and rollin’ on this drug. Remicade was the thing that made me believe that everything was going to be alright. All the bad things I’ve been through, this drug finally made it possible for me to enjoy life and live it to my fullest.”
Darlene Miranda, 34, was diagnosed with Crohn’s disease at the end of her freshman year in college. She had lost 17 pounds and was experiencing major cramping. Despite her older brother being diagnosed with Crohn’s disease when he was 22, Darlene says that her knowledge of the disease had been limited at the time she was diagnosed.
“Although my brother was diagnosed years before me, there really wasn’t a whole lot of information available,” Darlene explains. “And, the thing with Crohn’s is that is that it can impact individuals very differently. What I did know was that he was in pain, had to have surgery and substantially limited his activities, such as traveling. So immediately, I thought that’s what it would mean for me too. I have more of an adventurous spirit than he does, so I was pretty upset about the whole thing.”
Living with Crohn’s disease for 16 years now, Darlene has had two surgeries to remove parts of her small intestine. She still experiences daily symptoms such as cramping and diarrhea, even when she is in remission. Darlene and her doctor work together on her treatment to determine what works best for her, and she is currently on a maintenance medication after first trying Prednisone, Entocort, Imuran and Pentasa at separate intervals.
“Those times when I was leading up to my surgeries were completely miserable,” Recalls Darlene. “Your life literally has to pause. Employers aren’t always understanding of having to go to the hospital emergency room every few weeks and being kept there for a week at a time. The pain is unimaginable. And, basically, you’re withering away because you can’t keep anything down.”
Crohn’s has not dampened Darlene’s adventurous spirit or determination. After attending graduate business school, Darlene began working full time for a financial services company and has been there for three and a half years.
“That keeps me pretty busy,” Darlene says. “But, when I’m not here, I am usually cooking, spending time with my two miniature schnauzers, traveling or training heavily for various athletic events that I participate in such as triathlons and long-distance bike rides. When I am in remission, I can pretty much do most anything. Don’t get me wrong, I still have to know where the bathroom is and deal with the embarrassment of having to go, but you learn to live with it, you adapt.”
Scott Nadler, 23, recently graduated from Ithaca College with a degree in sport management and works for a sports marketing company called SportsLink, as well as writing for an independent basketball scouting service. When he was 13 years old, Scott experienced what he describes as a deep and intense pain in his lower abdomen and blood in his stool for two weeks straight. Following a meeting with a gastroenterologist, he was diagnosed with ulcerative colitis. Scott has had three colonoscopies and two endoscopies and is currently taking Asacol and Purinethol for his symptoms.
“I think one of the fascinating things about the disease is how different it can be for each person inflicted with it,” Scott says. “One of the hardest things someone with Crohn’s or UC has to go through is finding a combination of medications that can control the disorder. This can take a very long time for some people, and in the process many suffer because of the trial and error course that needs to be taken. For me, I was extremely fortunate to find the right medication early in my diagnosis and have been on relatively the same medication for nine years.”
The decision to live a healthier life is one that people with Crohn’s disease often have to make. Most have to watch their diets to make sure that they do not accidentally consume foods that may trigger their symptoms. Some have to avoid alcohol because it will cause an adverse reaction to the medication and/or supplements they are taking, while others simply choose to not drink, smoke or do drugs because they want their bodies and immune systems to be as healthy as possible as they undergo treatment for Crohn’s.
“It’s affected my life in several ways,” Scott says of having ulcerative colitis. “Due to the disorder, I have a fairly weak immune system. Whenever I get sick, whether it’s a cold or the flu, it takes my body longer than the average person to fully recover. To go along with that, my joints are weak as well. I’m an avid basketball player and have experienced many injuries because of this, which has affected my ability to stay on the court. I’m also reminded of the disease on a daily basis because of the medication that I take and also watching what I eat. From a social aspect, I don’t drink alcohol because of the potential harm the mixture of the medicine with alcohol could do to my body.”
Eli Brown is an example of a patient strictly monitoring their diet in order to control Crohn’s disease symptoms. Eli, 34, lives in Brooklyn and works as a chef at a prestigious hotel in Manhattan. He has suffered severe symptoms of Crohn’s disease since he was 15. Originally, he tried to ignore his symptoms and downplay the signs of the illness. At one point he was vomiting 25 times a day, having to constantly run to the bathroom and spending entire nights on the toilet because he was unable to keep any food in his system. His symptoms included diarrhea, bloody stools, sleeplessness, fatigue, a weakened immune system and severe weight loss. As his condition worsened and the disease took its toll on his appearance, he was unable to ignore that something was terribly wrong. Because he did not initially describe all his symptoms to his doctors, mainly telling them that he often felt tired, they misdiagnosed him with exhaustion and depression.
After giving his doctors more specific details about his ailments, Eli was correctly diagnosed with Crohn’s disease. Refusing to undergo surgery, he attempted to alleviate his symptoms through several drugs that his doctors prescribed in trial intervals to see which worked best for him. Eli was taking 30 pills a day, but every medication he tried either didn’t help or gave him side effects that were as equally unpleasant as the symptoms he was taking them for. Eli says that they would “fix one thing but create another problem.”
Frustrated with the lack positive results he was getting from medication, Eli decided to create a special diet for himself. Using his culinary education and his skills as a well-respected chef, he first only ate very simple, bland foods that would not irritate his stomach. He then slowly began to introduce new items to his daily diet, gauging his body’s reaction to each newly added ingredient.
Although no food plan is universally ideal for every person with Crohn’s disease and it has not been proven that any one specific food causes of cures the symptoms of Crohn’s disease, Eli advises simplifying one’s diet by eliminating unhealthy junk food and cutting back on fat and spices, even salt and pepper. He recommends “going to the basics” by starting from a “baseline diet”, which includes organic foods like brown rice and bananas, apple sauce and plain toast. As his symptoms began to improve, he added more items to his menu, including thoroughly cooked vegetables, lean fish and fresh, hormone-free chicken. Eli’s symptoms have decreased considerably since he incorporated the new diet into his lifestyle and he stresses the importance of people with Crohn’s disease avoiding foods that they know from experience will make them ill.
“I have to always be aware of what I’m eating, I couldn’t just act like everyone else at college,” Amanda says. “Drinking like everyone else in college was so difficult and I went to a school where it was a very social thing, so learning that my health is more important has always been a hard thing for me to deal with.”
Jay Pacitti also has to monitor what he eats. He avoids eating anything containing certain vegetables that he knows his body will react to negatively, and is careful to not eat large quantities of any vegetables. He has also noticed that he can’t go without eight hours of sleep each night for more than a couple of days. This realization actually helped him to make the decision to change his career, as having to get a full night’s rest “made it tough to be a lawyer in New York City.”
For people with Crohn’s disease, monitoring stress levels is a must, as anxiety and tension can often directly impact the severity of symptoms. While Jay chose to change his occupational path so that he could set his own hours and decrease his stress levels, Eli works to alleviate the extremely high amount of stress he often encounters as a chef by practicing deep breathing exercises, positive visualization techniques and mediation. Exercise plays a large role in Darlene’s stress management strategy.
“I take care of myself and try to watch what I eat,” Darlene says. “I also exercise a lot. Most important, I have to be way more vigilant than others about my stress levels, since that is my worst trigger. All these things help me cope and live fully.”
While social outings are a form of reliving stress for most people, the worry of having a sudden attack of symptoms while out with friends or on a date is itself a source of anxiety for many people with Crohn’s. Over time, the disease can dramatically take its toll on a person’s social activities and relationships.
“At first it began to restrict me from everyday life experiences,” Chris somberly recalls. “It takes away your ability to interact with the public. You don’t want to be bothered with people and you’re always in a bad mood. It affects you mentally, socially and physically.”
“I think there’s a bit of an embarrassment factor that comes with the disease,” Says Scott. “Always having to know where the bathroom is because of sudden urges and the psychological toll this can have on you is draining. As a result, many people pass up on great opportunities, whether it’s traveling to a foreign country or just going out with friends, because of the fear that comes along with the illness.”
“I won’t share hotel rooms with other people except my partner, but it won’t keep me from traveling and enjoying myself,” Darlene says when giving an example of how she has adapted to living with Crohn’s disease and the additional levels of privacy that the disease sometimes requires. “At work, things are a bit different. Many people there, except for my close friends, don’t know that I have Crohn’s. So, even though I may seem okay on the outside, they will never fully know how much pain I can actually be in.”
“The ways that Crohn’s has affected my life varies depending on the situation,” Says Amanda. “For one, unfortunately I’m almost always concerned about where I’ll be and what if I don’t feel well all of a sudden or have to find a bathroom. You never know and it can be really scary because in a matter of minutes you could feel sick and then it becomes this really embarrassing situation. I think probably overall the basic awareness of myself is what has affected me the most. And always feeling like I’m the sick friend…And knowing that it doesn’t just affect me but everyone around me who is involved in my life.”
“The issue I always feel that comes up for me personally is whether or not the person I’m with can withstand what it means to be with someone who has Crohn’s,” Amanda continues. “It requires someone who is willing to learn about it, understands what it’s about and realizes that it is present and requires attention. It can’t be ignored. I always get worried that I’m going to be dating someone and then I’ll tell them about Crohn’s and they’ll run, but in the end they aren’t worth it anyway. Being twenty-four, it’s hard for me to tell someone about my health issues because it always makes me feel like a burden and the sick girlfriend. But either that person won’t care that I have Crohn’s, will get over it and become a part of my life with the illness, or they won’t.”
Darlene similarly relates how Crohn’s disease has affected the ways in which she approaches relationships. Although she had been with her partner for nine years, she still remembers the challenges that Crohn’s disease used to pose during the early stages of dating.
“Thinking back, Crohn’s has always made starting new relationships a bit awkward. If you didn’t know I had Crohn’s, you wouldn’t guess it from my appearance. However, think about what happens when you’re in a new relationship. Sleepovers cause more stress than you think because the last thing you want someone new in your life to experience is you running to the bathroom several times throughout the night. For my current relationship, the first time we ever traveled together, when I sensed things were getting serious I had to have “the talk”, explaining what a long-term relationship with someone with Crohn’s could mean – Flare-ups, hospital visits, colonoscopies, etcetera. Romantic, huh? That’s why the people who love people with Crohn’s need to get a lot of credit too.”
“I was twenty-nine when I was diagnosed,” Jay recalls. “I exhibited symptoms a year earlier. My only symptoms were pain, serious, serious pain and fevers. I think this is important, because the lack of “bathroom issues” was one of the reasons why I was undiagnosed. Proper diagnosis would likely have avoided more surgery . . .”
Jay’s surgeries include an emergency appendectomy, then ileocolic resection, during which he had eight inches of small intestine and eight inches of large intestine removed. He has been in relative remission since 2000, post-surgery, with his daily medication schedule consisting of twelve Pentasa pills. Jay has one relative, a cousin, with ulcerative colitis and says that he had no knowledge of what Crohn’s disease was prior to his own diagnosis.
“It definitely also took a huge toll on the relationship I was in when diagnosed and for several years after my diagnosis. But since my disease is now under control post-surgery and with medication, I am one of the very, very lucky ones, and quite a bit of the effect on my life has been positive.”
Jay’s experience with Crohn’s disease has not only had a positive effect on his own life, but on the lives of the thousands of people he has helped and inspired through a not-for-profit organization he started in 2004 called Get Your Guts In Gear (GYGIG), which creates and produces events for people that have Crohn’s disease and ulcerative colitis as well as the people who support those affected by the disease. The bringing together of patients and their family, friends and caregivers creates a very positive environment of understanding and encouragement that is essential to people with Crohn’s. GYGIG main goal is to raise awareness of Crohn’s disease, ulcerative colitis, and related conditions through multi-day cycling events that benefit and support inflammatory bowel disease organizations and patient advocacy groups.
Since its first ride, Get Your Guts in Gear has returned more than $1.25 million to support IBD charities and research, including GYGIG’s own programs. The organizations holds three-day bike riding events in several locations across the country, with an upcoming Hudson River Valley Ride in New York, where cyclists will leave New York City and pedal to Saratoga Springs from June 12th to the 14th. In August, cyclists will complete a three-day loop north of Seattle from August 7th to the 9th and an inaugural ride will take place in the Midwest between October 2nd and 4th. Jay stresses that you don’t have to be a cyclist to participate. Many people, including Amanda, become volunteer crew members to help make the rides happen and are an integral part of the community that is created.
“We raise funds and awareness about the disease, but, more than that, we connect with each other in a pretty powerful way,” says Darlene. “Most people on the rides either have an illness or are there to support a loved one. It’s an amazing group of people. Last year was my first ride, but really, this will be a lifetime association! Plus, 210 miles? It’s hard but you feel like a rock star when you cross that finish line.”
For people dealing with Crohn’s disease, ulcerative colitis and similar gastrointestinal illnesses, support and understanding from the people around them is very important. Support groups, fundraisers and other social events help to lessen the feelings of isolation that people with the disease may experience. To be surrounded by people who recognize what they are going through and who have had similar experiences, even if their symptoms are different, is comforting to someone living with Crohn’s.
“I once believed that I had to fight this illness all on my own,” Darlene says. “It was as if I was a passive player in my own illness. Talk about feeling isolated! Now that I know more about causes such as Get Your Guts in Gear and Web sites like “Crohn’s and Me”, I know that’s not the case at all. Thanks to things like this, I have now become a more active player in my illness and in the Crohn’s community. So, I encourage everyone out there to keep the healthy dialogue going and help to drive awareness.”
Crohn’s disease shows itself in many different ways and to various degrees, but a cure is yet to be found. According to the GYGIG Web site, it is estimated that at least 1.4 million Americans have inflammatory bowel disease – with that number evenly split between Crohn’s disease and ulcerative colitis. IBD is primarily a disease of adolescents and young adults between 15 and 35. However, IBD can occur in people of any age, including older adults and very young children. Ten percent of those affected by IBD – at least 140,000 patients – are under the age of 18. That is why increasing awareness of what the disease is, its wide range of symptoms and how it affects people’s lives, as well as continuing to fund future research, is so important.
Don’t hesitate to talk about the illness with your family and friends. Chances are, you probably already know someone who has Crohn’s disease or an IBD-related illness. It is also important to find out of you have a family history of gastrointestinal disorders. If you are currently experiencing any of the symptoms of Crohn’s disease, voice your concerns to your doctor and request to be tested for the disease if you suspect that you have been misdiagnosed. Honest, open discussion will help to bring attention to this very serious, often insufficiently acknowledged disease and bring us closer to determining the cause and, hopefully, the cure for Crohn’s disease.
