An Ulcerative Colitis/J Pouch Update

Bloggers with ulcerative colitis, j pouch, jpouch surgery, mayo clinic, infertility -

This past March marked the four year anniversary of my final surgery for ulcerative colitis at the Mayo Clinic.  For those of you not familiar with the disease, I was diagnosed as a newlywed with UC back in 2006, not even a year after our wedding. It’s  a terrible autoimmune disorder that manifests as (eww) diarrhea, pain, and lots of blood loss. My quality of life was greatly diminished for over four years and I was always sick when I wasn’t on prednisone.

The turning point for me in my disease was in October of 2009 at a friend’s wedding in Dallas. I was so sick I could barely get out of bed at the hotel to go to the wedding. I had no business even traveling, and then when I got sick after the wedding again at a movie theater (read: loss of all bowel control), I knew something had to give. UC is a terrible humiliating disease – and I wanted my life back. I didn’t even recognize the girl I had become. I remember sobbing on the couch at my parents’ house as photos from my wedding, pre-UC,  flickered on their computer screen. Who was that girl? I thought to myself.My life was controlled by where the nearest bathroom was, and the idea of being in a car for long periods of time stressed me out big-time.  The Rachel that had fearlessly traveled solo across Europe as a college student and joyfully skinny-dipped in the Mediterranean with girlfriends suddenly seemed like a stranger. Fear fear fear.

So I made the hardest decision of my life and had my entire colon removed at the Mayo Clinic in Rochester, Minnesota. For three months I had an ileostomy complete with the ever-delightful bag attached to my abdomen. I have scars from my belly button all the way down to my c-section incision, and we now lovingly refer to it as my front butt. Because, well, if you don’t name it something stupid and laugh about it, you’ll just cry about it.

And now in the blink of an eye, it’s four years later. It feels like a lifetime ago that we were making all those terribly hard choices. At the height of my disease I was taking 21 pills a day, and I felt positively ancient and like nobody else my age could possibly understand what I was going through. There wasn’t a single person I knew who had this disease, much less someone in their mid-20s who could relate. Illness of that magnitude seemed reserved only for old people. Suffering was a daily part of my life until that surgery. Going to the Mayo Clinic and choosing the hard way out was what saved my life.

It hasn’t come without some amount of sacrifice. My fertility has been impacted in major ways, but we knew that going into the surgeries. A few weeks ago at lunch with a girlfriend, she asked me point blank: “If you knew then what you knew now about how hard it would be to get pregnant, would you do it again?”

And I answered immediately: “Absolutely.”

Yes, infertility is awful. Yes, miscarriage is TERRIBLE. But my life with UC was no life at all.  And so I live now with no regrets – I am healthy for my family and for my son. I am healthy for MYSELF.


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