With an invisible illness such as IBD, it can be challenging to protect your quality of life. Patient influencers often push themselves in the service of others and that may seem strange to those that follow along on social media. How can someone be so sick and yet be able to attend a medical conference? Sara Ringer of Inflamed and Untamed explains how what you see online can be misleading and how she manages two difficult digestive diseases, all while striving to live a fulfilling life that includes being a resource for other patients seeking information and support.
Take a journey back to 1999, when cellphones were a rarity, dial-up internet access was still in use, and Amber had her first surgery of the 2-step j-pouch process. Amber’s husband Mike, a writer and communicator, journaled his thoughts on the day of the surgery. This journal was recently uncovered and Amber reads it to Mike and gets his reactions and further recollections of that challenging day.
Many people with inflammatory bowel disease (IBD) will admit to having a body image issue. The research shows that people with IBD who have a healthy self-image are in the minority. And after all, how could we not have issues with our bodies? Our bodies fail us without warning, not to mention the symptoms of IBD which are often so distressing and personally upsetting to oneself and to others.
It’s funny, now as an “over 40,” I think back on the days when I was younger and I have to laugh at my skewed sense of self. The facts that support my internal monologue on body image will surely upset those who were closest to me when I was a child and a teen. We didn’t discuss things like body image in the 70s and 80s and there wasn’t anyone who told me the things I tell my daughter, that her body is strong and beautiful and that we will do our best to take care of it.
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
Below includes my experience of miscarriage. Please note this includes a frank discussion of pregnancy loss and medical treatment for such, as well as strong language.
I never thought I’d be writing about miscarriage. To tell the truth, I kind of don’t want to do it now. But I’ve come to realize that holding back is harmful to me, and imparts the feeling that my experiences didn’t serve any purpose. Not that everything that happens has a reason or a purpose, but I have the ability to take this part of my life and turn it into something positive.
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.
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
After my first colonoscopy and my diagnosis of ulcerative colitis, I spent about 40 days in the hospital. I was a junior in high school, so that whole situation had to be dealt with. Thankfully I was a good student, and when it was time to deal with homework and missing class, I was able to cope with much of it.
I had great teachers in high school — for the most part. Continue reading
My first colonoscopy took place at the hospital, so immediately after it was over, I was taken upstairs and admitted. Now, I’d never been sick in my life: being treated with antibiotics for a rash a few months earlier and chickenpox when I was 12 were the only other two times that I received medical care. This, of course, was on a completely different scale. I was taken upstairs to the pediatrics ward.
Here’s the thing about being in peds as a teen: you’re not a small child, so much of what goes on there doesn’t help you. The staff is used to dealing with common childhood illnesses, and while IBD is not rare, I’d venture to say they didn’t see it very often. In the small community hospital where I was treated, I actually saw very few other children. Once a classmate was admitted for appendicitis and an appendectomy. She, of course, left after a few days. Other than that, I saw mostly young adults in the pediatrics ward. Maybe our community just had healthy kids, or kids who needed specialized care went into Detroit for Henry Ford, or down to Ann Arbor for the University of Michigan.
Between the time when I was misdiagnosed and the time I received an actual real diagnosis, I had my first appointment with a gynecologist. At this visit it was discovered that I had a urinary tract infection. I was put on antibiotics (again, I don’t know what the exact drug was), which was probably not the best idea for my gastrointestinal tract, though the infection had to be stopped before it could cause further damage. I would go on to have many, many urinary tract infections over the years and have seen several urologists, who can find nothing physically wrong, and can only prescribe more antibiotics.
Before even seeing me in the office, the first thing the gastroenterologists wanted to do was a colonoscopy. By this time, I had constant diarrhea. It was always bloody, and at times it was nothing but blood. I remember doing nothing but going between my bedroom and the bathroom, all day and all night. Continue reading