When Your Doctor Says the S-Word: My J-Pouch Story (Part One)

I walked into the doctor’s office that day with my (then) boyfriend of one year. I had been diagnosed with ulcerative colitis just a few weeks previously. The doctor who diagnosed me seemed distant, uncaring and I could never get a hold of her. My boyfriend’s parents, being the absolutely amazing people they are, found another doctor. This one worked in a clinic that studied IBD and had a lot more credibility than my last one.

S-Word

I was nervous, tired of appointments and desperate for answers. I was so glad to have my boyfriend, Dave, with me this time. He lived three hours away so it was a big sacrifice on his part to be there with me.

The doctor walked in and we talked for a few moments. He told me he was going to test me for C. Diff and put me on a daily enema. Then he stopped and looked very seriously at me.

“Amber,” he said,  “you’re young. You have your whole life ahead of you. There’s something else I think you ought to consider… surgery.”

I looked at Dave. He had the same uneasy look on his face.

“Now, hear me out!” the doctor explained. “There’s a surgery that can be performed for UC patients. It’s called the Ileal-Pouch Anal Anastomosis.

He told me what happens during the surgery. They remove your colon and create a “reservoir” out of your small intestine that’s shaped like a “J”. This becomes your colon substitute. My heart was racing. Surgery? Are you kidding me!? I was only 26 years old! I don’t want to be cut open. I don’t want an ugly scar across my belly. Was this doctor insane?

“Look, I’m not going to push you,” the doctor continued, “but I definitely think you should think about it.”

When Dave and I left the office, we talked about the surgery. “I think it’s a bit extreme,” I said. “I don’t think we’re at that point yet!” Dave agreed.

CD001

I was still deluding myself into thinking that UC wasn’t that big of a deal. My previous doctor, after all, had said that some people flare once and then never flare again. I was convinced that I was going to be one of those people. “Nah, I don’t need surgery.” With the round of antibiotics and enemas the doctor gave me, I achieved remission.

Fast forward to about three years later. I had a new doctor due to the fact that I had moved. Dave and I had been married for just over two years. I had been flaring for a year. On and off of steroids and feeling absolutely miserable. I tried everything from diet change, biologics, natural remedies, fasting; you name it, I probably tried it. Nothing seemed to be working.

I was sick. Really sick. I had so many people voicing prayers and sending “healing thoughts” my way. But things just weren’t getting better. Dave was frustrated. I was depressed. I had been robbed of the joy in life. I was destined to be a sick person forever.

After attempting to taper off the steroids again, the raging flare came right back. The blood, the frequency, the pain. I felt miserable. I called my doctor again.

There’s nothing more I can do for you…” He said, “I think you should consider surgery.” I felt my heart drop and fear consumed me…

Read Part Two

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