In September at Medicine-X, I was blessed with the opportunity to meet many ePatients who I’d been in contact with online over the years. One of these beautiful people was Carly, a Masters of Business Administration student from Virginia. The coolest thing about meeting people “from the internet” in person for the first time is that it already feels like you know one another, you go in for that first hug, and then you talk and hit it off like you’ve known each other forever. Carly also provided me a ton of support, even if she didn’t know it, throughout the whole respiratory situation/prednisone ordeal, because she knows first-hand just how miserable it can be.
Carly lives with Crohn’s disease, an inflammatory bowel condition that can wreak a lot of havoc on a person’s digestive system, with treatments that can ease but not cure symptom flare-ups at the cost of a lot of side effects throughout the rest of the body. Today, she’ll be sharing a bit of what Crohn’s is, and how you can be supportive to a friend living with IBD.
December 1 through 7 is Crohn’s and Colitis Awareness Week. Crohn’s disease and ulcerative colitis (UC) are the two diseases that are also referred to as IBD (inflammatory bowel disease). IBS (irritable bowel syndrome) is not the same as IBD and is in fact a different condition. Combined, 1.4 million Americans suffered from these diseases, although the numbers may be much higher because in some cases it can take years for individuals to be diagnosed. Crohn’s and UC are autoimmune diseases that generally attack the digestive system, although many patients have joint pain, depression, anxiety and other symptoms as well. Crohn’s disease can affect the entire digestive tract, from mouth to rectum, while UC affects the colon only. These diseases typically involve chronic inflammation of the intestine (or other digestive area) and can be very painful. The treatments range from steroids (commonly Prednisone) to newer biologics just as Humira or Remicade. Patients may undergo surgery to remove highly inflamed parts of their digestive system, or even their entire colon. Surgery is not a “cure” though and can present its own problems, such as an ostomy, nutrition problems, or fecal incontinence. Most people with IBD are diagnosed in their teens, but children and older adults can also develop the disease. There is currently no cure for Crohn’s or UC.
Do you know someone with IBD? Here are some tips for being a supportive friend:
- Like many other autoimmune diseases, IBD can cause fatigue and pain. Your friend may need to cancel plans, often at the last minute. Be understanding and above all, don’t take it personally. Keep inviting her to events, she’ll hang out whenever possible.
- People with IBD may have varying dietary needs. This can be different for each person and can change depending on how active their disease is at the moment. Don’t be offended if your friend doesn’t eat something you prepare. If you are inviting them over for dinner or out to eat, take an opportunity to ask gently if they have any preferences or foods they absolutely cannot have. Don’t assume that the diet they were on a year ago is the same one they are currently on. Don’t be offended if the friend doesn’t want to do an eating-based event, they may be on a liquid diet or IV-feedings to rest their intestines.
- Your friend with IBD is probably on medication that compromises his immune system. If you, or someone in your household is sick please let your friend know before you hang out. They may choose to wait until you are no longer contagious. It can be much harder for people on immune-suppressing medication to fight off illness like the cold or a flu and they’ve probably used up all their sick leave on IBD-stuff anyway.
- A person with IBD is a person first. If you knew your friend before they got sick, remember they are still the same person. They may be more depressed from time to time, but they still have the same general personality and interests. If your friend can’t make it out to the movies, maybe hang out with them at home and watch Netflix. If your friend isn’t up for a visit, be sure to send emails and texts to let them know what you’ve been up to. Your friend does not want to feel left out or like a person who is only a medical specimen.
For more information about IBD check out CCFA (http://online.ccfa.org/site/PageNavigator/AdvocacyPage.html) and Crohnology (http://crohnology.com/blog/5-crohns-colitis-awareness-week).
Carly is a graphic designer, student, health advocate, Medicine-X ePatient, and bunny lover. Throughout the week, she’ll be blogging about life with Crohn’s at ChroniCarly, so please check out her posts to explore more about what living with Crohn’s can really be like. You can also find her on Twitter at @CarlyRM and @ChroniCarly.
Also, Carly . . . when are we going to Chicago? :]