My name is Charlene. I’m 53 and have had UC for 25 years. My husband was in the navy during the early years of my UC and we moved a lot. A Navy doctor in San Diego was one of my best GI’s. I have seen many different GIs. I like a doctor that works with me as a team and respects me and my time. I have been with my current doctor since 1999.
Some more about me:
I am a stay at home mom and I homeschool my kids. I quilt and knit. I have been a Girl Scout leader and I Contra dance when I can. I have been married 32 years. We are originally from So. Cal. but we have been in Austin, TX the last 18 years. We just bought a travel trailer so we can camp and still have a bathroom close by.
My symptoms are general pretty mild now. I currently experience joint pain, mild cramping, urgency, mucous, 2-3 BM’s per day and awful hemorrhoids.
25 Years of Colitis
I have had UC for 25 years. The first 11 years it only affected my descending colon. I was treated with sulfasalazine and the occasional Cortenema during flares. I had been given Prednisone once and the side effects (emotional swings) were horrible.
In 1999 I had a really bad flare. I lost 20 pounds in two weeks. I was in the process of changing GIs when this happened so the first time this doctor saw me, I looked like death warmed over. My UC had spread to my entire large intestine. The doctor convinced me to try Prednisone again. The mood swings were more manageable knowing what to expect. Once the flare was under control, we talked about other long term options. Immuno Suppressants were a new thing for UC so he put me on Imuran. I’ve been on it ever since. He also switched sulfasalazine to Asacol.
I have had what I call mini flares over the years; only a few times needing Prednisone to get them under control. The problem with Prednisone is that I gain 5-10 pounds every time I am on it and I don’t lose it afterward.
I often wonder what caused the big flare in 1999. My theory is aspirin. At that time, no doctor had told me that aspirin products can irritate the colon. In 1998 I had deep vein thromboses (blood clot) in my leg. No known cause, possibly hereditary. After 7 months on Coumadin, my Gen. Practitioner said I should take one aspirin per day. Five months later, I had my big flare.
I have never handled stress well and luckily I have been able to eliminate a lot of stress from my life. I am a stay at home mom and I homeschool my kids. No carpools or rushing around to be somewhere on time, no co-workers or boss, my kids are happy and well behaved, and I have the best husband on the planet.
Traveling is what gets me. I think the change in food, fast food, restaurants with unknown ingredients, does me in. About 6 days away from home and I can almost guarantee a mini flare.
I like to Contra dance but the jostling makes me feel like running to the bathroom. My husband and kids are so great. They are always ready to step in if I am doing something like cooking and need to run to the bathroom.
Even though my symptoms are general pretty mild now, I would love to be symptom free. I am starting the Specific Carbohydrate Diet to see if it helps. We’ll see how it goes.
I am currently taking 150 mg Imuran and 4800 mg Asacol. These have worked pretty well for me. I also take Calcium, Vit D., Fish oil, multivitamin, probiotic. I am trying different probiotics; still looking for the best one for me.
written by Charlene H
submitted in the colitis venting area