Unfortunately, to date, Inflammatory Bowel Disease (IBD) is incurable: even if removed by surgery, Crohn’s recurs and while surgery removes ulcerative colitis, it leaves the patient without a colon, and does not remove the risk of other IBD complications. However, this does not mean that patients with IBD cannot heal. Once the shock of the initial diagnosis is, no pun intended, digested, patients should shift their focus toward healing: leading full, happy, productive lives.
IS THIS THE RIGHT PRACTIONER FOR ME?
Given that the disease is life long, patients should seek a physician with whom they feel comfortable having a long term working relationship. It is important to find a physician with experience in the field – not all gastroenterologists or surgeons are equally comfortable with treating IBD. All personalities are different, and while a physician may come with the highest accolades, they may not be the best fit for a particular patient. The Crohn’s and Colitis Foundation maintains a list of physician members, and this is often a good place to start along with recommendations from referring physicians and other patients with IBD.
HOW CAN I PARTICIPATE IN MY TREATMENT DECISIONS?
Education is key. Getting reliable information about the disease is essential so that patients can reduce fear of the unknown particularly with respect to available therapy options and also play an active role in their treatment decisions. It is important, however, not to read everything the internet has to offer – many websites, unlike this one, may not have specialists offering advice and information may not be reliable. Also, while chat rooms and patient testimonies can be helpful, a patient should keep in mind that patients who write about their disease are often driven to do so due to extreme circumstances – either positive or negative – and may not be truly representative of all patients with IBD. An entire group of patients with mild, or very manageable symptoms may choose not to contribute.
WHO CAN HELP ME OUTSIDE THE MEDICAL FIELD?
Enlisting the support of friends and family is critical. Having someone who understands the disease and how the disease affects the particular patient is essential. Also a companion during office visits can be very helpful, not only in alleviating waiting room boredom, but also in contributing questions and in remembering physician discussion details. Support groups can also be an excellent resource. Many groups feature educational components, and while the forum of a support group may not be for everyone, it can be the starting point for a friendship , a recommendation for a physician or for becoming a disease advocate in the community.
WHAT ELSE CAN I DO?
The goal is that a diagnosis of IBD not be the sole focus of a patient’s life. To that end, it is important not to ignore other facets of health – be it exercise, healthy relationships, proper nutrition and continued monitoring of other healthcare issues. A primary care physician can be a key ally in the care of patients with IBD.
BOTTOM LINE
Ideally we would be able to cure IBD, but while science catches up, playing an active role in working with the diagnosed disease, being open to change as therapies become available, and planning for whole patient centered, wellness directed treatment can lead to effective healing.
