I was diagnosed 18 years ago with ulcerative colitis.
I had a colonoscopy approximately 18 months ago with some inflammation due to a flare. I tend to cruise along in remission for a long period of time and once I have a flare, I have a tough time getting back in remission again. Staying on my medication seems to be the most effective thing for me so far. I have tried MANY diets and a few different medications. Staying active helps a lot…..it’s a stress reducer, hence keeping me healthy. I have a feeling that stress has a major impact on my disease activity. When I was initially diagnosed, I was student teaching and was under a great deal of stress trying to finish my Master’s degree in education. I was studying a lot, working, and super stressed from it all. It seems that my stress was at an all time high then, so I wasn’t surprised that I ended up with an intestinal illness. Stress has always manifested itself through my digestive system. Even as a kid, I had diarrhea and vomiting often, especially in 1st grade when I was stressed because I went to a new school.
Some more about Lori:
I am a mother of 2 kids, a wife, teacher, and runner. My kids are 8 & 10. I teach 6th grade English/Language Arts. I enjoy the outdoors, gardening, staying active , traveling, reading, and eating healthy, tasty food. Prior to becoming a teacher, I became a Master Gardener and a Certified Professional Horticulturalist. I also used to race mountain bikes at local WV races. I live in Huntington, WV and grew up in Ohio. I’ve also lived in Colorado and North Carolina. I love family activities and love teaching.
I’m doing well overall. The key is for me to stay on my medications, which I’m a bit stubborn about. I am trying to wean myself off Uceris, because I’ve been on it for almost a year. I usually get joint pain and inflammation prior to a flare. The inflammation affects my large joints/elbows and knees mostly. I’m not currently having any intestinal issues but the joint pain is the 1st sign that things will lead into that if I don’t take care of it soon. I tried weaning myself off Uceris and did well for a while but got to a point where the joint pain started. I’ve also had skin manifestations in the past that were a result of my UC, so those usually start appearing once things progress.
When I was diagnosed, I was mostly vegetarian and super healthy overall. I had traveled to Switzerland on a bike trip prior to starting my last semester of graduate school. I never knew if my diagnosis was part of intestinal bacteria from drinking random spring water in Switzerland or stress from student teaching in graduate school….or neither of the above! Anyway, I was really sick and barely finished my student teaching for graduate school.
Initially and for years, Sulfasalazine worked well for me along with supplements and a Mediterranean diet. I’ve taken probiotics for as long as I can remember, along with fish oil, vitamin C, B vitamins, Vitamin D and Calcium.
Shortly after being diagnosed and taking high doses of prednisone, I ended up with an severe infection in my right foot/ankle area. It was basically flesh-eating bacteria that landed me in the ER and admitted to the hospital for 30 days for 8 surgeries to remove the infections and do skin graphs on the areas affected. I never did get a complete diagnosis. All I know is that I was really sick prior to it all and was on high doses of prednisone in the middle of winter with no possible injury to the area. It was all internal. The good thing is that I kept my foot and have some impressive scars.
My goal after that was to get in good shape again and be able to run and bike again. I did achieve that. :)
I was on and off meds, mostly sulfasalazine for years and did well for the most part. I eventually got to the point where sulfasalazine didn’t work for me and tried other medications. Prednisone gets me out of a flare, Uceris and Apriso are helping me currently.
Apriso 4-1x daily, Uceris-1x daily, probiotic, Vitamin C, B vitamins, Fish Oil, and Vitamin D with Calcium.
Medications and Other Treatment Ideas from Lori B:
Like I mentioned, Uceris and Apriso are helping me now, but my doctor wants me to try something new soon because I’ve been on Uceris long enough (it’s a steroid and not for long-term use). I have tried every diet possible SCD, gluten-free, Whole30, Mediterranean, and vegetarian. I feel like I have the most success with Mediterranean. When I did the Whole30 medication free, by the end I was a mess. I don’t do well with a lot of nuts and meat. I am a healthy eater and don’t really eat junk food or high fat food, that’s not my thing anyway. As long as I take my meds, eat healthy, exercise daily, and take supplements, I feel my best. My current supplements are probiotics, calcium, vitamin D, vitamin C, and fish oil.
My son was diagnosed with Crohn’s disease at the age of 9 about a year ago. He is on Remicade, which has kept him out of the hospital and has done wonders for his health. It allows him to be a normal kid. He has no interest in a specialized diet but eats healthy for a kid his age anyway. The fact that I have ulcerative colitis and he has Crohn’s leads me to believe there’s a strong genetic factor in these diseases. I worry about the side effects of Remicade but am thankful that it is helping my son. He was inspired to read about Larry Nance Jr. who plays for the Lakers and has Crohn’s. My son is a basketball junkie, so it really helped him to feel more normal reading his story. I encourage anyone to read about him. He’s inspiring to kids and adults.
Most of all, I’m thankful to read everyone’s stories on this website. Sometimes I feel alone with my concerns and thoughts about this disease. It can be overwhelming. My son is a good example for me. He never mentions his disease and doesn’t want to be defined by it. I feel like I obsess about my medications and diet. It can be overwhelming as we all know.
written by Lori B
submitted in the colitis venting area