IBD hit our family hard: my sister, my son, and I all diagnosed at VERY different ages.
My sister was diagnosed in her early 20s, after suffering from very traditional symptoms on and off for some time. This was my first exposure to learn what Crohn’s disease even was. She had tried medications, and is now controlling (luckily) mostly through diet…I don’t know how she does it.
My son was diagnosed at age 4! He complained of stomachaches off and on through one summer… then November came and he was hit hard! Poor baby was just out of diapers, and was having accidents ALL over the place. He’d bend down to pull his pants down and “explode” on the wall of the bathroom. I brought him to the doctor, and they said it was a virus, so we went home. Then he spiked a fever, so we went back. They said it was a virus, but I kept pushing. My mothers intuition told me that this was not just a virus. On Christmas Eve, I brought him back to our primary, and they said they’d run some tests. Right after the holiday they called and had already contacted the gastro doc and we brought him in for his first colonoscopy soon after. The doctor said she knew right away what it was, without having been looking for more than 15 seconds. He had Crohn’s.
For 4 years, we focused on his health, through hospital visits and growth issues, all the while my stomach was failing me. The things that I knew to be “safe” foods to eat (not dairy…as I had not been able to tolerate that for most of my life) were upsetting my stomach. I was having almost constant abdominal pain and diarrhea. My rheumatologist (I was being treated for spondyloarthritis–related to what we thought were just my son and sister’s Crohn’s disease) was so sweet and suggested I try a low sugar diet. It didn’t help. Then he suggested I try gluten free. Also didn’t help. Finally, he tried treating me for a yeast overgrowth, and when that didn’t help, he said there wasn’t anything else GI-wise he could do for me, and I needed to see a gastroenterologist. So, I called my primary and got a referral. I went to the GI doc and first was greeted with disdain (I should have known what was to come). They didn’t believe that anything was wrong, but to appease me they did a colonoscopy. After the scope, while I was still waking up, the doctor came in with his bag on his shoulder and said “Everything is fine, just eat some yogurt.” And he left. I looked at my husband (a nurse, by the way), with tears in my eyes and said, “so that’s it?” He just hugged me, and we both knew that wasn’t the end.
Over the next few months, things with my GI symptoms didn’t change, so I sought help from a nutritionist. She made recommendations for me, and it helped for about 2 weeks. When the diet changes stopped working, I went back to the GI doc, who was oh-so-comforting to me. The PA in the office said she’d consult with the doctor. And, they scheduled me for a CT scan. The CT scan came back with thickening in my entire colon, consistent with colitis. So, they did another colonoscopy (we’d become pros at this around our house by this time, with my son holding my hand while I drank the “gross stuff”).
This time, they found active colitis, despite already being on Humira for my arthritis. So there it was— my diagnosis: ulcerative pancolitis. I was put on prednisone, and then Entyvio. But that meant no more Humira for my arthritis—and this GI doc would NOT talk to my rheumatologist to consult about what medication would help both illnesses. So, I stopped Humira and started Entyvio. It didn’t help. Not after 1, 2, 4 or 5 doses. But, around the 5th dose, with my arthritis getting bad, I sought a consult with a different gastroenterologist. When the first one found out, he discharged me from his practice, locked me out of my online patient portal, and canceled my Entyvio infusion… I was deleted. Luckily, my new GI doctor took charge. He scheduled me a new infusion, gave me some budesonide (which is helping!), and will actuallly consult with my rheumatologist.
I am hopeful now that I am with the right people to help me feel better and find some healing in the process.
Sara was diagnosed with ulcerative colitis at age 36, and while she was already familiar with Crohn’s and colitis from family circumstances, becoming a patient instead of a caregiver was an entirely different world. She found Girls with Guts in an online search for support for women with IBD, and is grateful for this discovery. While Sara has not yet achieved remission, she is hopeful to get there soon.
Sara holds a Ph.D. in Cognitive and Sensory Processes with a Certificate in Gerontology from the University of Florida, and currently works as a professor at The College at Brockport, State University of New York. In addition to her full time work at the college, Sara is incredibly passionate about self-care, which she writes about on her blog (www.takecareofyoublog.com). In her down-time, she enjoys reading as well as camping and hiking with her husband (Erik), two sons (Danny and AJ), and two large dogs (Callie and Dessie).