Inflammatory bowel diseases such as Crohn's and Colitis affect over 1.6 million Americans and nearly 100,000 more people are diagnosed with IBD each year. Like many other diseases, IBD does not discriminate based on age or gender. It is commonly seen that younger adults are more like to be diagnosed before the age of 30. And, if IBD goes untreated, serious complications can occur.
Online communities for those living with IBD have proven to be a tremendous resource. One such site, sponsored by Findatopdoc.com is a free online Crohns & Colitis Facebook Community.
Other resources include 'Best Crohn's Disease Blogs of 2018' where an abundance of information can be found and shared. Then there are authors like Samantha Irby who are publishing books about living with IBD.
Putting a funny face on Crohn’s
Irby’s idea to “Put a Funny Face on Crohn's Disease” received a ton of attention. She published a 2017 New York Times bestseller on the topic and became well known . Her most valuable advice is to listen to your doctor and your body. An accurate diagnosis as well as knowing your body’s triggers are the best ways to live happily with IBD.
There are unlimited resources to find common triggers for Crohn's and colitis. Research has shown that nearly anything can be a trigger for someone with Crohn's. Knowing your body’s triggers are the best way to live with or manage the disease. The 5 most common triggers are diet, stress, medications, infections, and smoking. Another common trigger is seasonal changes which may be due to airborne allergens and increased respiratory infections. One step to identifying triggers could be to record your flare-ups. If you document each flare up and your daily routine, you can keep track and become an expert on your own unique condition.
Knowing what works and what doesn’t work is the most valuable information for someone living with an IBD. Some basics tips for disease management include quitting smoking, drinking in moderation, as well as maintaining a proper diet. Eating small frequent meals as well as avoiding foods that are high in fiber, greasy, or dairy products often help reduce flare-ups. Additionally, working with dietitians or nutritionists is beneficial for someone with Crohn’s. In some cases, if someone has to cut out dairy completely, they may risk a calcium deficiency. A diet expert can help you develop a personalized plan where not only do you remove foods that can cause flare ups but also get necessary nutrients from other foods that won’t irritate your bowels. Once you have a plan established, it is important to stick with it. If you feel something in the plan is no longer working for you, be sure to consult your doctor before making any changes.
New symptoms can arise without any warning. This is one reason to check in with your doctor regularly. Some changes may require prescriptions but over the counter or at home remedies may help as well. Be cautious as some over the counter anti-inflammatory medicine or antibiotics can cause flare ups. Keeping up with immunizations and health screenings can also potentially help reduce flare ups. Other healthy living tips useful for everyone and especially those living with IBD are to limit caffeine, exercise regularly, maintain a regular sleep schedule, and also practice relaxation techniques. These habits help reduce stress which was mentioned earlier as one of the common triggers for Crohn’s.
The invaluable power of support and education
One way to combat your struggle is seeking out a support group. Building relationships with people who face the same illness is one of the most essential ways to continue living with daily symptoms and to begin to overcome and accept it. For someone living with Crohn’s, a valuable resource is the Crohn’s & Colitis Foundation of America, or CCFA. On Crohnscolitisfoundation.org, there is a link to local chapters which also offer a group contact. It is encouraged to attend these local groups. By attending local meetings, you can build a larger network of people to seek out advice. Not only that but getting to know other people living with similar struggles allow us to learn to live with our symptoms more easily. If these support groups are not local or convenient for you, there is an option for online support education groups as well. The online support group is offered as a 4-week series of weekly chat sessions.
In addition to support groups, there are also patient education events as well as doctor, nurse, and student events which can be found through local hospitals. One hospital in Chicago offers IBD University training and educational programs such as industry education, patient education, training for medical students and clinical observers, and many other options. The website also offers contact information that you can call or email to learn more about the program.
Check out these testimonies
The University of Chicago Medicine also offers patient testimonies which are powerful stories that offer hope to those starting the journey of living with an IBD. University of Chicago experts provide care to over 5,000 patients every year. There are 7 testimonies on the website that describe different success stories.
Abbie’s story tells us that when addressing your IBD, you can put symptoms in remission for long periods of time.
Another patient, Erika, was exposed to multiple treatments and eventually made it to the University of Chicago. Working with Dr. Rubin, they developed a treatment plan to meet Erika’s unique and evolving needs. Today she works as a family practitioner caring for patients with chronic illnesses.
Nuriya MD offers her story about working in another country as a OB/gynecologist. She frequently returns to the US to attend patient education events and support groups as well as receive treatment from her doctor.
One of the patients, Ally, is also a patient advocate, spokesperson, fundraiser, and law student. Her treatment plan has allowed her to be in remission for over a decade and to work towards her goal of educating patients and government officials.
Another strong story of hope is a father and daughter seeking out similar treatment and living with Crohn’s disease together. Seth is a patient who suffered from debilitating pain but later switched to newer medications which kept his symptoms in remission for over 2 years.
Lastly is Bob’s story. Bob struggled with Crohn's for 25 years but found better treatment in Chicago. He went through surgery but just a short time after, he made a 475 mile journey across Iowa.
These testimonies offer hope to anyone living with Crohn's, recently diagnosed, and also family members of someone with an IBD.
Photo: Folks magazine