How to Manage Intra-abdominal Abscesses in Crohn’s Disease
Getting Involved in the Crohn’s Community
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Managing Crohn’s disease — or any other chronic health condition — is harder when you try to go it alone. The unpredictability and stress of having Crohn’s can cause some people with the condition to feel cut off from others. That’s why getting involved in the Crohn’s community and building a strong Crohn’s support network is so valuable.
By getting involved in the Crohn’s community on a global or local level — whether by joining an online group or an in-person activity — you’ll gain knowledge about your condition and realize that you’re not alone.
“It’s understandable that people have privacy issues with digestive disorders like Crohn’s,” says Richard Geswell, president of the Crohn’s and Colitis Foundation of America (CCFA). “The problem is, people may become isolated — they don’t talk to anyone, so they don’t get the help they need to manage their disease.”
Getting connected and taking advantage of all the Crohn’s support and resources available to you can make a positive impact: You can learn about Crohn’s disease itself and the latest discoveries from medical experts. You can share ideas, advice, and even frustrations with others who have the condition — and you can find out about their personal stories and benefit from their Crohn’s management tips. You may even help someone else by providing emotional support when they need it.
How to Get Involved in the Crohn’s Community
There are many ways to get started, depending on your comfort level. Once you take the first step, you’ll find many more options to explore:
Get educated. The more you know, the better you can live with Crohn’s. Several organizations offer information on diagnosis, treatment, research, clinical trials, and other aspects of Crohn’s disease. To start, check out the Web sites of the and the . You can then get an international perspective through Crohn’s organizations around the world, such as the Crohn’s and Colitis Foundation of Canada and the United Kingdom’s . After this research, you’ll be better able to discuss your condition with your doctor and know what questions to ask for more effective Crohn’s management. You can also find out about helpful advocacy services that these organizations provide. For instance, the CCFA offers special help to on making the needed adjustments to manage Crohn’s when they leave home.
Take part in awareness activities. Many Crohn’s health organizations sponsor activities to increase community awareness while raising money that goes toward research. Walks, bike rides, endurance training, and other activities are held in communities across the United States and around the world.
Taking part in local activities is also an opportunity to build your support system. Especially for younger people with Crohn’s disease, these events can be the first opportunity to meet others with the condition.
“I’m always amazed at how inspired and excited the kids get,” says Geswell. “They never knew other kids had these digestive diseases. A lot of connections are made at the walks.”
Besides bringing Crohn’s families together and forming new relationships, awareness events help raise money for research and medical care. CCFA events alone raise million annually, with 80 percent of every dollar going toward medical research.
Attend Crohn’s support groups and lectures. In many communities across the United States you’ll find face-to-face support groups for adults, teens, and loved ones hosted by trained facilitators like nurses or social workers. “These local meetings offer people a connection that can’t be replaced,” says Geswell. “They don’t feel so alone with this condition.” Ask your doctor about good local resources. CCFA chapters also regularly host educational sessions about the disease, with nutrition and lifestyle advice.
Join an online Crohn’s support community. You can also form bonds and get information about Crohn’s disease through online support groups, such as the Everyday Health Digestive Health group. Many people find the anonymity of online support groups makes it easier to talk openly about their bowel disorder. You can talk about the most blush-worthy topics, such as fistulas and incontinence, and get tips on how to deal with these problems. Just like in in-person support groups, you can benefit from the life experiences of other people with your condition.
Online Crohn’s support groups are especially important for people when they first learn they have the condition. “A lot of people are diagnosed in their teens and early twenties and thirties, and they don’t have any experience with chronic illness,” says Ashwin Ananthakrishnan, MD, a gastroenterologist in the Crohn’s and Colitis Center at Massachusetts General Hospital and a faculty assistant in medicine at Harvard Medical School. “This is their first major diagnosis, and they’re making decisions about long-term treatments with scary side effects. Having a peer group that has faced similar treatment decisions and similar life experiences really helps.”
However, Dr. Ananthakrishnan cautions, talk to your doctor before you act on any specific ideas. “Remember that every single thing you read about may not be accurate or may not apply to you. Another person may have more advanced disease than you do or a more complicated course. Don’t assume your life with Crohn’s is going to be identical to theirs. It’s different for everyone.” Have an honest talk with your doctor about everything you’ve read or heard.
Investigate online medical libraries. The National Institutes of Health’s (NDDIC) offers information on the causes of Crohn's disease, symptoms, Crohn’s management, complications, clinical trials, and statistics, and also includes information in Spanish.
Learn about advocacy efforts. The (DDNC) is an umbrella organization dedicated to increasing awareness of digestive diseases like Crohn’s, pushing for more research to find better treatment, and backing legislation to improve the lives of people affected by digestive conditions. You can get involved with DDNC by participating in its public forums and supporting its efforts.
While May is National Digestive Disease Awareness Month in the United States, every month offers opportunities to increase awareness of Crohn’s disease and help you find the support you need.
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