I was diagnosed when I was a just becoming a teenager. About 16-17 years ago. My last colonoscopy was about 6 months ago. I was recommended for surgery. Nothing was improving. Recommend to have a left sided colostomy. Surgery scheduled in January.
Some more about her:
I’m from Maine born and raised. I cherish the sea air like a religion. My favorite thing to do is set up a chair on any coastal beach and sit for hours and hours. I’m very good at that…sitting. I love to cook for others. I truly believe that food brings people together. I really think I won my husband through his stomach. I haven’t been to many different places, but it’s a goal to travel the U.S.
I not currently in a super flare, but I wake up every morning with a very gassy stomach. Like embarrassing, stinky, loud, take cover gas. It will subside usually by 10 a.m. About once a week it will stay that way for the whole day. I also have extreme urgency when I have to have a BM. I call it the 3 minute window. I literally have 3 minutes to find the nearest bathroom or else. I have nausea, painful gas, bleeding, and small hard formed Bms daily. This is nothing compared to a flare.
I was diagnosed with UC when I was a child. I’m not quite sure how old I was…it’s been about 16-17 years. I remember I used to double over with cramps and bloating. I had a colonoscopy and the doctor wanted to start me on meds right away. I took Rowasa Enemas, asacol, and prednisone. I got better for a few years. I got married, and started flaring when I was expecting my first child. Same regime for a while and I got better.
After about 5 years, my marriage started falling apart. I had two small children, a house, a husband who wouldn’t work, and I had to toughen up. While I was working full time, being a single mom, and trying to manage my life, I suddenly became so violently ill that my best friend randomly came over one day and found me on the floor next to my bed…so dehydrated and so out of it that I couldn’t walk. She rushed me to the emergency room. I had a colonoscopy and was told my whole colon was inflamed. I was very sick.
I had to start on some serious drugs or go to surgery. I chose drugs.
After two years of hardcore drugs, (Remicade, Humera, Imuran)I still have pain, urgency, fear of accidents….my UC is running my life. I can’t go anywhere without scouting out the nearest bathroom. I’m fed up! I told my doctor this and she was relieved to hear it and referred me to a surgeon. I’m terrified, but hopeful. Surgery will literally cure what I’ve been struggling with for most of my life! Does anyone have a stoma? I’ve done the research, but how bad is it? I’ll be cured, but what about my intestine coming out of my belly?? I want an active life. Will this be the answer? Meds never worked for me. I have nothing left. This is it. Help?
Medications Samantha’s Taken:
Rowasa enemas as needed
Imuran didn’t work
Remicade partially worked
Humira didn’t work
Always always always Prednisone
Suppliments: fish oil, probiotics.
Currently, no meds and trying to stay on top of a flare.
written by Samantha
submitted in the colitis venting area