I am very active (usually), have written and published a non-fiction book, love to play duplicate bridge, have completed a couple of marathons in my mid-fifties…..and hope for a great and productive future. But I am really scared about what may lie ahead. I lose sleep over seeing myself lying in a bed in a nursing home, wearing diapers and longing for the time when my life was normal. I will do anything to keep that nightmare from coming true.
No longer any blood, but still urgency and frequency….and unpredictability. As with everyone out there, I know where all bathrooms are located. I still have to cancel some plans at the last minute and have missed events important to me because they required travel.
Diagnosed at Age 73
I am a 73 year old female who had no GI problems until I had a knee replacement last June. Post-op I developed a hospital acquired C diff infection. For a variety of reasons that are confusing to explain and reflect poorly on the current medical system, the C diff was undiagnosed for about 4 months during which time I was essentially housebound and making 20 or more trips to the bathroom every day. I am not a drama queen type of person, but I would literally sit on the toilet crying and telling myself “This is just not normal”.
The C-diff was diagnosed in Oct and I was treated with initially Flagyl and predisone and then, after a consult by an infection control specialist, I was treated with Vancomycin. I then had a negative stool test, but the symptoms, including bleeding and weight loss, persisted. I was sure that I had cancer. Finally, in December, I had a colonoscopy which confirmed the diagnosis of UC. The gastroenterologist tried to convince me that there was no link between the C diff and the UC, but there is no other logical conclusion.
I have read everything I can get my hands on to understand this disease. Mostly I have learned that it is a disease of young people and that it tends to run in families, so I meet neither of those risk factors. I am very interested in hearing from people who were diagnosed later in life….and particularly anyone who had C diff followed by UC.
During my 40 years working as a registered nurse I have worked with people who have Crohn’s or UC, a couple of whom were employees in the department I directed. Looking back, I don’t believe that I provided what they needed because of my lack of knowledge about this disease. Now I am reading the stories of young people and getting encouragement from them. Thanks to everyone for sharing your stories and being so supportive.
Medications Tried So Far:
Predisone, worked well to control the bleeding but not the disease. Also it caused
my blood pressure to go to 200+/120+, so now I am taking blood pressure meds morning and evening. I have taken Balzalizide 9 per day for six months with improvement but not remission. No side effects from the med.
written by Shari S
submitted in the colitis venting area