Meet Neva:
I am a single mom, in my mid-40’s, of a 10 year old boy. I work full time in a very fast-paced office, and part-time in the evenings to make ends meet.
Some More About Me:
I give private Italian lessons to students of all ages, many of whom love to travel to Italy. My native language is Italian and I learned English from watching Sesame Street and Mr. Rogers.
Colitis Symptoms:
Terrible flare-ups almost weekly, with all the usual symptoms (resulting in prolonged visits to the bathroom). In addition, I occasionally break out in hives.
I now have bad joint pain, especially in my hands and shoulders, which is making even daily activities much more difficult.
The Whole Colitis Story:
Ulcerative Colitis has slowly restricted my world. I am afraid to eat because I’m always afraid it will trigger a flare-up, and I never eat at work.
I am afraid to travel, I’m always looking for a bathroom when I am in a store or have to attend an event for my son. I no longer go to dinner with friends or family because I figure why bother- usually there’s nothing on the menu that I can actually eat. I have missed some of my son’s milestones, like baseball playoffs and school field-trips, because I have had a flare-up or have been in the hospital due to one.
At the moment, I am currently on my 6th specialist and he was the one who diagnosed me. I have been in the Emergency Room or hospitalized almost every month over the last 24 months. I have insurance but the co-pays have added an extra level of difficulty to my financial situation.
One of the hardest parts is the “hiddenness” of the disease, and the fact that people know nothing about it. I get “well, at least it’s not cancer!” a lot. No one really understands the nature of Ulcerative Colitis, nor the hours of pain either. My mother means well but she constantly harps on me to eat and doesn’t understand the fear that comes before eating. My employer is somewhat understanding but I worry that one day, all goodwill will vanish and I will be left with no employment and no medical benefits. Having to leave in the middle of the day to go home and sit in the bathroom for hours during a flare-up is debilitating, not to mention embarrassing.
Some days I can cope far better than others. I would love any advice on how to cope, and what procedures others have put into place for dealing, and how to educate others on ulcerative colitis.
Medications:
Been taking Apriso for a while. Was helping. Seems to have stopped.
Was given Xifaxan for 6 weeks as well.
Align probiotic. Align Digestive Care Probiotic Supplement, on Amazon.com
written by Neva
submitted in the colitis venting area
I am a single mom, in my mid-40’s, of a 10 year old boy. I work full time in a very fast-paced office, and part-time in the evenings to make ends meet.
