Is it possible to take the diagnosis that turned your world upside down and turn it into a positive force in your life? My guest on About IBD is Lilly Stairs, Head of Patient Advocacy at Clara Health who lives with Crohn’s disease did exactly that. First diagnosed with psoriatic arthritis, it was only after Lilly’s symptoms weren’t improving and she was in and out of the hospital that healthcare providers finally discovered a Crohn’s disease flare-up in her small bowel. Lilly found the right mix of treatments to get her Crohn’s under control and now works with her team at Clara to connect patients to clinical trials.
It’s estimated that half of people who have an inflammatory bowel disease (IBD) try complementary and alternative medicine to treat their disease. Eric Polsinelli of Vegan Ostomy describes how he tried dozens of complementary therapies for his Crohn’s disease but never found anything that worked. He did, however, come away with vital insight about how people living with IBD can assess alternative therapies and talk to their physicians about working them into a comprehensive treatment plan. Continue reading
When I still had my colon, I was at the pharmacy on a regular basis. Like most people with IBD (ulcerative colitis, specifically), I was always taking several medications in an effort to keep the inflammation down. I also usually needed over-the-counter things as well — witch hazel and wipes and antacids.
Once when I was in my mid-twenties, the young man behind the pharmacy counter tried to talk to me about my prescriptions. He then questioned my use of that particular location of the pharmacy.
“You know,” he said to me, “there’s a store in [town that I lived in] that’s closer to you.”
We have slang now to describe what this man was doing to me. He was mansplaining it to me. For some reason he thought he knew better. Continue reading
On this episode of the About IBD Podcast, I discuss j-pouches and bust some of the misconceptions that surround them. I also give my firsthand experience as a poucher, a j-poucher who gave birth twice, and let you in on what it’s like for me to have a midline scar.
Dance – Bensound.com – www.bensound.com/royalty-free-music
My first gastroenterologist came to me by circumstance. I was referred to a different physician in the same practice, but when I needed to get in sooner, he was the one that had room in his schedule to do my colonoscopy. He was the one that diagnosed me with ulcerative colitis, and sweated over my case in those early days when I was struggling to hold on to my colon.
It might not be everyone’s favorite, and it’s certainly not health food, but I still love them.
Image © The D
At some point after we’d managed to turn things around and I finally stopped bleeding, I came in for a follow-up to his office. I’d been on a low-fiber diet for quite some time, because that’s how treatment went in those days. I’m sure I felt deprived at times but I remember mostly being grateful that I could eat at all. In the hospital I received nutrition through an IV and could eat no food, so even soft low-fiber foods were a step up. I’m sure I wanted a green salad, but a steady diet of turkey and mashed potatoes was the thing that was going to put the 20 pounds I needed back on my body. Continue reading
When my ulcerative colitis was at its worst, raw fruits and vegetables were not in the picture.
Image © Tanya Hall
Diet has become a major topic of discussion for many people in the Western world. Most of us are overweight. We develop diseases from being too heavy, and yet many people spend a lot of time and energy dieting or thinking about how to lose weight. Since getting a j-pouch, having 2 children, and turning 40, I find myself amongst those that have to pay close attention to diet in order to avoid gaining weight.
In the IBD community, diet is discussed a lot, but there is no real conclusion. People with IBD can be anywhere on the spectrum of “diet has no effect on my symptoms” to “diet is how I keep symptoms from coming back.” The biggest problem is that you don’t know where you fall on this spectrum until you try different diets. And there are so many to choose from: no milk, no carbs, no meat, no animal products, no cooked foods, no gluten. Which one, or which combination, will have benefit for you?