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Living With Crohn’s Disease

“When my Crohn’s is under control, it’s the best time of my life,” says Nancy Kennedy, a 47-year-old nurse and mother of three, who has been treated for Crohn’s disease for nearly 30 years. Kennedy is one of an estimated 1.5 million Americans who suffer from inflammatory bowel disease. Receiving a diagnosis just six months after the birth of her first child, Nicole, Kennedy never dreamed that the baby she held in her arms would one day face the very same challenges.

But this mother-daughter duo isn’t letting their diagnoses hold them back.”Today, my Crohn’s is completely under control,” said Nicole, now 22 and in her last semester of college. “I feel great and am really enjoying life.”Nevertheless, things weren’t always so easy or optomistic for the Kennedy women.

Crohn’s disease presents with chronic abdominal pain, unintentional weight loss and frequent diarrhea sometimes up to 10 or 20 times a day. Having experienced unpleasant bouts of diarrhea “out of nowhere,” Nancy says she recalls on-and-off symptoms that began in nursing school at age 19. She didn’t immediately seek proper medical attention, and by the time she was eventually diagnosed, she carried only 103 pounds on her 5-foot 8-inch frame.

“I was tired of not feeling well all the time,” she says. “When I look back at pictures of myself during that time, I realize how sick I really looked. I was so thin, my coloring was horrible and even my hair looked terrible.” Nicole’s Crohn’s presented differently. At age 15 and in the fall of her freshman year of high school, Nicole began to experience severe stomach pains any time she ate. The abdominal pain quickly became so constant that Nicole would cry in her sleep. Soon fatigue set in, and Nicole began to miss school.

“I was always tired, and even if I made it to school, I would come home and go right to sleep sometimes until the next morning,” she recalls. Seeing her mom sick through the years, Nicole says she wasn’t fearful of a diagnosis because she knew her family would be there to support her. “I was more frustrated than afraid; I didn’t want to feel sick anymore.” Although Nancy hoped that her daughter didn’t have Crohn’s, Nicole was diagnosed with the disease.

Nicole learned to manage her health and has not let her Crohn’s stop her from doing anything she wanted to do, whether cheerleading, spending times with friends, volunteering in Chile or studying abroad in Spain (twice). Although she admits that Crohn’s is always in the back of her mind, her priority is to do what she loves and enjoys. She says her independence is equally important to her health. “I did not rely or lean on my mom or friends, but I did always communicate about how I was feeling with my mom more than anyone,” she says.

Even though both mother and daughter now have the disease under control, living with Crohn’s and its uncertainty can take a toll on any family. “I hate having my family see me sick,” Nancy says. “I can be fine one day and in the hospital the next and away from them. I didn’t want them to see me in that state.”

Nicole agrees with her mom, but says newly diagnosed patients should not let fear get in the way of recovery and living a full life. “I’m not going to lie: Crohn’s disease isn’t fun to live with. But if you learn to manage it and fight it, you can do anything live a happy life and do the things you love.”

After graduation, Nicole plans to move to Spain and teach English and travel throughout Europe in 2012. “Be strong and stay optimistic,” Nicole advises new patients. “I did not let my Crohn’s stop me from doing anything.”

Crohn’s disease is a chronic illness. 

Crohn’s disease will be a part of you for the rest of your life. Adjusting to that alone is difficult for many people. It can be very hard to accept that you will be living not only with the effects of the disease, but also with the unpredictability of disease flare-ups, limitations of your activity, frequent doctor visits, uncomfortable medical tests, and medications and their side effects.

Crohn’s disease is a potentially serious disease. 

Inflammation in the digestive tract can cause serious complications such as bleeding, holes in the intestinal wall (perforation), pockets of infection (abscesses), and abnormal connections between the digestive tract and other parts of the body (fistulas). Crohn’s disease also can cause inflammation and damage to other parts of the body, such as the joints, skin, eyes, mouth, liver, and bile ducts. You may need to spend time in the hospital if you have a severe flare up or complication.

Nothing you did or didn’t do caused you to have Crohn’s disease.

There is no evidence that dietstress, medications, or other lifestyle factors cause Crohn’s disease. The disease seems to be caused by some trigger in susceptible people. We don’t know what makes a person susceptible, but it is probably genetic. We also don’t know what causes the triggers. It may be infection with a specific bacteria or virus.

There are many treatment options available to manage Crohn’s disease.

Although there currently is no cure for the disease. The critical part of treatment is reducing inflammation, which helps to relieve the symptoms, and decrease the risk of complications in most people. Several different types of medications including anti-inflammatory medications such as corticosteroids, immunosuppressants, biologic therapies, and antibiotics are available. If one drug doesn’t work, another probably will. Surgery is another treatment option if medications do not help.

You are not alone. 

About 1 million people in the United States have Crohn’s disease. There are other people who understand exactly what you are going through and want to help. A number of groups exist to educate the public and policy makers, raise funds for research, and provide support and assistance to people affected with the disease.

Relationships

Plan dates carefully. 

During a flare-up, dinner and a movie is probably better than a long hike in the woods. Choose a restaurant and look at menus online before you go.”Don’t be afraid to speak up,” Sileo says. “If Mexican food bothers you, say something.”

Share when you’re ready. 

It’s up to you when to tell a new partner you have Crohn’s.”While it’s not necessary to have full disclosure on a first date, you should recognize that honesty and communication is ultimately the best policy,” Farber says.

For example, you could tell them how you check for bathrooms wherever you go, but beyond needing to have a restroom nearby, you’re up for anything.

Talk about sex

If you have concerns, share them. Tell your partner what feels good and what doesn’t. “Be clear and honest about what you’re going through and what you need from them to avoid miscommunication and frustration,” says David Roseman, MD, who founded the San Diego chapter of the Crohn’s & Colitis Foundation of America (CCFA).

Be flexible. 

“Intimacy does not have to equal [sex],” Farber says. Find other ways to be intimate.

Family Life

Talk about it. 

Tell your family and friends what it’s like to live with Crohn’s. They may be confused about the disease, says Frank J. Sileo, PhD, a New Jersey psychologist who works with people who have Crohn’s.

Let them know which foods are easy for you to eat and which ones, if any, cause problems.

Bring someone with you to appointments. 

They can take notes while you speak to the doctor. “Information can be overwhelming and terms can be confusing,” Sileo says. “Four ears are better than two.”

Accept their help. 

Let your family pitch in with household tasks, health care visits, and meal planning, says Michael A. Farber, MD, a gastroenterologist at Crozer-Chester Medical Center in Pennsylvania. “We all need support,” Sileo says. “Don’t feel ashamed or afraid to ask for it.” Be clear about what you need and what you don’t. Ways to Live Happier and Healthier If You Have Crohn’s Disease

Don’t smoke.

“Smoking makes Crohn’s disease much worse,” says Miguel Regueiro,MD, medical director of the University of Pittsburgh Medical Center’s inflammatory bowel disease program. “If you have Crohn’s disease and are a smoker, you must quit.” People with Crohn’s disease who smoke have more flares and emergency surgeries, and smokers are more likely to be diagnosed with Crohn’s disease in the first place.

Drink in moderation. 

Alcohol can irritate the lining of your intestinal tract and exacerbate your symptoms. It also may interfere with medications you’re taking. Even if you find that you can tolerate alcohol, it’s important to limit how much you drink.

Exercise regularly. 

Both aerobic activity and resistance training can help manage Crohn’s disease. Exercise not only helps your digestive tract work more efficiently, Dr. Regueiro says, but it can also help to reduce stress due to the release of endorphins, or feel-good hormones, that come with getting your blood pumping. Weight-bearing exercise can also help prevent osteoporosis (a disease that weakens and thins the bones), a common complication of Crohn’s disease. Choose an exercise you enjoy to stay motivated. “I always feel better after I work out at the gym,” says John Nesco, 48, who was diagnosed at age 15 and is a volunteer group facilitator and member of the Connecticut board of the Crohn’s & Colitis Foundation of America (CCFA).

Practice relaxation techniques. 

Although stress doesn’t cause Crohn’s disease, it can aggravate your symptoms. Researchers in China found that stress played a role in how people with Crohn’s disease perceived their illness and quality of life, according to a November 2016 report in the journal Patient Preference and Adherence. Try slow breathing, yoga, tai chi, meditation, or something else you find relaxing. Do what works for you, Nesco says. It could just be reading a book in a quiet place, listening to your favorite music, or spending time with friends and family. “The important thing is that it’s something you consistently want to do and that you get relaxation from it,” he says.

Get enough sleep. 

When you’re tired, you‘re more likely to feel stressed, which can worsen your symptoms. You’ll sleep better at night if you stick to a routine, with a set time for getting up and going to bed on weekdays and weekends. Also be sure to give yourself enough time to wind down before bed so you can focus on sleep and not other distractions.

Seek out support. 

Find Crohn’s support groups that meet online or face-to-face near where you live or work. “People who join support groups tend to have the same reaction,” Nesco says. “They hadn’t met anyone else with the same disease and can’t believe how similar their experiences are. Having supportive friends and family is great, but their level of understanding only goes so far with actually having the disease. People who face the same challenges can share stories of best practices as well as triumphs. This can go a long way in terms of motivation and outlook.”

Nesco volunteered for the CCFA after having surgery for his Crohn’s disease at age 35. Facing surgery was scary, and he knew it would require a lot of recovery time. “Talking to someone who went through it gave me the confidence and security I needed to move forward,” he says. After being helped by others, Nesco vowed to give back and do the same. “After surgery, I wanted to do something positive to offset the negatives associated with this disease. So I contacted the CCFA and told them I wanted to make a difference,” he says. Knowing he’s helping others by facilitating support groups has also helped him.

Communicate what you feel is appropriate. 

Are you stressed out from hiding your condition from co-workers or because you don’t know what to tell friends and family? Everyone handles Crohn’s disease differently, and you should decide for yourself whom to tell and when, Nesco says. When you decide the time is right, he says, keep it simple with something like: “I just want you to know I have a digestive disorder that affects what I can eat.” If you get too technical, you’ll lose people in the details, he says.

Start with the basics.

Most people with Crohn’s disease find that they feel better if they:

  • Eat small amounts more frequently throughout the day rather than several large meals.
  • Avoid greasy or fatty foods, especially fried dishes.
  • Cut down on milk and dairy products, which can be difficult to digest.
  • Limit high-fiber foods and those that are more difficult to digest, like popcorn, seeds, and nuts.

Work with a dietitian or nutritionist. 

You may want to avoid certain foods or food groups that you know exacerbate your symptoms during flares. However, when you eliminate entire food groups from your diet, you run the risk of malnutrition. A nutritionist or dietitian can help you create a nutritious meal plan that avoids the foods that bother you.

Limit caffeine. 

Like alcohol, caffeine can aggravate some Crohn’s disease symptoms, including diarrhea. Caffeine is in coffee, tea, chocolate, and some sodas. Carefully read the labels of foods and beverages you buy to check for caffeine content. Caffeine before bed also can interfere with sleep, so if you drink caffeine be sure to stop early in the day.

Stick to your treatment plan.

You may want to skip your medications when you’re feeling better, but you risk a flare if you do. It’s important to take your medications according to your doctor’s directions. If you feel a change is needed, talk to your doctor first, Regueiro says.

Avoid over-the-counter anti-inflammatory drugs. 

Many people with Crohn’s disease also have arthritis and may want to take a nonsteroidal anti-inflammatory drug (NSAID), such as ibuprofen or naproxen, for the pain. “But over-the-counter medications, aside from acetaminophen, are generally bad for Crohn’s disease,” Regueiro says. Another reason to avoid these pain relievers: They can cause ulcers in the lining of your intestines. Talk to your doctor about your options.

Be careful about antibiotics. 

Antibiotics can sometimes cause Crohn’s symptoms to flare. Unless your doctor has prescribed antibiotics for a specific reason, such as an infection that isn’t healing on its own, don’t take them.

Protect against bone loss. 

Crohn’s disease and some of its treatments can increase your risk of developing osteoporosis, which makes bones weak and fragile, increasing the risk of fractures. Talk to your doctor or a nutritionist about how to get enough calcium, vitamin D, and any other nutrients in your diet to help keep your bones strong.

Get screened for colon cancer. 

Having Crohn’s disease increases your risk of developing colon cancer, so it’s important to have regular colonoscopies to check for any signs of the disease. Talk to your doctor about how frequently you should be screened.

Get immunized. 

To stay healthy, consider being vaccinated against the flu, pneumonia, and human papilloma virus, as well as hepatitis A and B.

Check in with your doctor regularly.

If you’re feeling well, you may only need to see your doctor twice a year. But if you’re experiencing flares frequently, you may need to schedule an appointment more often, possibly to adjust your treatment. (One note of caution: Never change your medication dosage, scheduling, or any other aspect of your health plan on your own. This could have dangerous results.)

Get new symptoms evaluated quickly. 

Other complications of Crohn’s disease such as abscesses, ulcers, anal fistulas, and fissures are rare, but you should know the signs and symptoms and contact your doctor if you experience them. You may need prescription medications to help heal them. Over-the-counter and at-home remedies such as topical creams and sitz baths also may help in some instances, such as for relieving the pain of fissures.

Start a journal. 

“One way that helps many people with Crohn’s disease manage their lives better is by keeping a journal,” Nesco says. Include what you eat, when you eat, when you exercise, when you experience stress, and anything else that affects you and your Crohn’s disease symptoms. He suggests looking back at your entries regularly to see what makes you feel good and what may have a negative effect on your health. Then share the information with your doctor and use it to tweak your Crohn’s disease treatment plan as needed.

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