This week, we wanted to provide you with a first-hand account of what it is like to live with Crohn’s disease. We interviewed a victim of Crohn’s disease who volunteered to answer a few questions we had regarding her past and current struggles, treatment, and what she does to fight this incurable disease. This Q&A will give you an incredible perspective of the disease through the eyes of the sufferer.
Do you suffer from both Crohn’s Disease and Ulcerative Colitis?
No, just Crohn’s disease. With Crohn’s, there are healthy parts of the intestine mixed in between inflamed areas. Ulcerative colitis, on the other hand, is continuous inflammation of the colon. Ulcerative colitis only affects the innermost lining of the colon while Crohn’s disease can occur in all the layers of the bowel walls.
If someone has one, do they automatically have the other?
No. While it is not uncommon for a person to have both, the two diseases are separate and distinct.
What kind of doctor treats Crohn’s?
When and how were you diagnosed with Crohn’s?
I was diagnosed in 2005, after extreme weight loss and severe abdominal pain. I underwent a contrast X-ray. This diagnostic test allows your doctor to evaluate your intestine by tracking the movement of a thick, chalky liquid called barium. The barium dye coats the lining of the bowel, creating a silhouette of your rectum, colon, and a portion of your intestine that’s visible on an X-ray. They were able to detect that a section of my lower intestine was severely inflamed and the diagnosis was Crohn’s disease.
Does the disease run in your family?
No, but it is associated with another autoimmune condition called psoriasis; both my sister and I are afflicted with it. However, once the Crohn’s became prevalent, my psoriasis disappeared completely.
There is no such thing as a cure, but is there such a thing as remission?
I am currently in remission due to doctor-supervised medication. That was prescribed in 2007 after the disease had elevated and fistualized which required removal of a section of my lower intestine.
What types of symptoms do you experience during a flare-up?
Thank goodness, I don’t experience flare-ups any longer [knock on wood] but during a flare-up, I would experience constant diarrhea, severe abdominal pain, and the inability to eat certain foods. Also during flare-ups, your body doesn’t absorb any nutrients or proteins which can lead to fatigue, weight loss, and malnutrition.
What typically drives symptoms?
Food is the largest cause to drive symptoms since the affected section is very inflamed. For instance, eating any type of nuts or seeds during a flare can feel like swallowing shards of glass; that’s how sensitive the affected lining is. The skins on most fruits are abrasive. Red meat and certain vegetables have high fiber, which is also an irritant to the lining. Avoid sushi, as there is too much of a possibility of parasites.
I will also say that stress especially can be a contributing factor as well. I was in a very bad marriage when first diagnosed but stabilized on medication and then during a very stressful divorce situation, the Crohn’s returned in full force, eventually causing the bowel resection, followed by medication therapy.
What types of normal activities are difficult, if not impossible, to do while having a flare-up?
Anything is a challenge as you are in pain and undernourished.
What are some of the biggest challenges you have faced with the disease?
The medical costs are prohibitive and can run as high as $5,410 for a monthly supply.
What have you learned from suffering from the disease?
I have learned that living with an incurable and very unpredictable disease means you really don’t have control of what your future is.
What kind of advice would you give someone who is dealing with the disease?
I would advise research, keeping up-to-date on any relevant medical news. Avoid chat rooms where you may read some horrible experiences of others; they are not you. Don’t become disillusioned or lose hope. And watch what you eat; keep a food diary to learn what to avoid.
What do you think is most surprising about the disease?
That I got it.
NOTE: Content included here is not medical advice, and only is intended as information for adults. Always consult with your health care professional before making changes to diet, exercise, medication, or before use of any product or device.