Knowing that it helps to hear from others who've been there, I thought I'd throw our story in the ring too. My daughter was dx'd at 19 in Aug 06, 4 months later, her colon was so diseased, it fell apart in the surgeon's hands. She had one long relentless flare and we were scared out of our minds about all of the drugs and the very idea of living without a colon and all of the possible complications until she had two young ladies who'd been through the surgery visit her in the hospital. You must be thinking, "4 months is nothing" but, it felt like I was watching her die before my eyes...blood transfusions, hemmorhaging, all the drugs that weren't working, it was the right decision for her...her life truly was in danger.
She's 22 now, is about to start her senior year of college, is having the time of her life with her friends, can eat anything she wants, goes to the bathroom 4-6x a day, but she does take an industrial strength probiotic to keep pouchitis (**) at bay (VSL #3 DS)-prescribed by her CS and paid for by insurance. She took a year off from school to get through surgery and recovery; yes there were a couple of bumps along the way while awaiting takedown, but it was the right decision for her.
As you can see from my signature, she's had some complications (osteonecrosis) from the Prednisone, but we're dealing with that too. I can't imagine what she may be facing had she stayed on the medications longer or tried more of them before going to surgery. Many countries recommend surgery before the docs here in the US do because the side effects from the medications are worse than the disease itself when surgery can give you your life back.
(**) Read as much as you can about bacteria and its effects on the gut. I'm absolutely convinced that although the docs say that UC isn't diet related..why then would her colorectal surgeon recommend a good probiotic for the rest of her life? Why do certain antibiotics work to reduce flares? If antibiotics sometimes work, why not take a more natural approach with probiotics and reduce the toxic effects of medications on your body? Hindsight is 20/20, but I wish her flare wouldn't have been so aggressive and given us more time to research and find VSL #3...maybe she'd still have her colon and maybe the bones in her joints wouldn't be dying.
20 yo daughter w/ Pancolitis
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
VSL #3 DS
21 yo Daughter diagnosed with right shoulder, bilateral wrist,
bilateral elbow, bilateral knee, and bilateral ankle avascular necrosis
(aka Osteonecrosis) as a result of Prednisone use