Hello, I am a 22 year old gorgeous single woman trapped in the body of a married 43 old mom of 2.
I was diagnosed with UP(ulcerative proctitis) a year ago. I had a colonoscopy in May 2010 when I was first diagnosed and a year later I am advancing this disease nicely to UC which was diagnosed via Flex Sig just last week. My goal? Rectal transplant but they haven’t come up with that yet.
My treatment began with Liada (x4/day), Canasa suppositories which worked great at night but not so good during the day. I just couldn’t keep them in. Currently I have advanced to prednisone (1 month course). I use Cortifoam suppository in the AM and Anucort suppository in the PM. I don’t have excessive bleeding or diahreah. My symptoms are urgency and tenesmus (which is the devil trying to get out of my asshole for those who don’t have tenesmus). Tenesmus would be a great name for a punk rock band. It’s just that fun. I know how the Hulk feels when he gets mad. He has Tenesmus and he turns green.
After hearing all the nightmare stories about prednisone I was hesitant to try but I just can’t get into remission. I have to say that prednisone has allowed me to leave the house without wearing one of my daughter’s diapers. I also have to say that it gives me a false sense of security as well, having recently crapped my pants in the car wash. I have gained 10 lbs in a week but I love that I can actually eat.
Sometimes I should keep a diaper in the car….. just in case.
My early symptoms were awful, I have literally buried underpants all over Las Vegas. I was and still am in serious denial. This can’t be happening to me. I can’t go shopping with the kids unless I am wearing a diaper, otherwise I could have an emergency situation (and I have) and I just can’t leave my kids in the car, unattended, in a shopping cart near the bathroom, alone – PERIOD! As soon as I left the house I would return to use the bathroom, whether I had to or not. I’m taking Xanax for that now, but I’m not still 100% confident. I’ve changed my diet, I’ve lost weight, I’ve taken probiotics, I’m drinking mint tea and green tea and I’m still sick. Sometimes I have good days and sometimes I have great days. What is upsetting to me is that good or great, I still have symptoms. I’m like a Ninja in the office. I will be in mid sentence, deep conversation and then POOF! I’m out! I often wonder if my co-workers or clients discuss what just happened because they can’t miss that I’ve just completely ran out of the office. I also can’t believe in this modern day and age that I can’t find something to make this go away.I’m a good patient. I’ll do whatever you want me to do doc, just make this go away! You want me to grind up fire ants and mix them with baby turds and smoke it? I’ll do it if you think it will work! I’m desperate.
Ask me how funny “Bridesmaid’s” the movie was? I couldn’t tell ya because I was in the bathroom!!! I even took lomitil so I could enjoy the movie but NO. I’m discouraged but I haven’t lost my sense of humor. I often look for people like me around town. After a while I think I would notice if I was racing some other person to the nearest bathroom and I would have back up plans and short cuts from Wal Mart to Costco to Starbucks. I know every available easy access bathroom from Southern Highlands to Centennial Hills. The worst is when I have the kids with me because they’re hard to get out of the car and I don’t have the time to negotiate car seats. Sacrificing my dignity for peace of mind outweighs any kind of torture I might experience saving my underpants if I left my kids alone. Once I parked at Del Taco and quickly ditched my underpants in their trash enclosure while keeping my eye on the kids in the car. I think my most embarrassing moment. I happened to be driving a loaner car that day and the windows weren’t tinted, otherwise I would have ditched my pants in the car. There aren’t too many good bushy areas around and besides I don’t want to get arrested, for that!
This disease is really taking a toll on my lifestyle. I’m just not that carefree spontaneous person I know that I am. What are you doing? How do you deal with it? How long before you found the magic remission mix? Is dairy really the harbinger of all evil? I give that shit to my kids! Do I go on the Anti Inflammatory diet? What is next? My last visit the doctor said if this dose of prednisone doesn’t work he want’s me to go on Imuran. Hold the phone doc? Have you Googled Imuran? Is anyone else losing their hair? I can weave a Turkish rug everyday.
Thanks for reading.
submitted by: “Princess Poopy Pants”
Current Related Medications:
Prednisone, 1 week into 1 month course
Anucort (night time)
Lialda x4 day
Mom living with Ulcerative Colitis/ Ulcerative Proctitis with 2 kids in Las Vegas, NV.
UP / UC It’s still a pain in the a**!!! One year since diagnosis, not in remission, considering Imuran. Have you tried it?