Starting the J-Pouch Journey

Who is Dan…

I’m one of those rare Los Angeles natives and have been all the way up and down Interstate 5. Technology nerd, baseball fan, and I love to travel. I’ve visited Japan, Spain, Italy, England, and Canada so far.

Dan wrote:

I currently have no symptoms of Ulcerative Colitis.

Dan’ Story – “Starting the J-Pouch Journey”

I first experienced signs of Ulcerative Colitis about a year ago while my dad was battling cancer (great timing, eh?). It started off controllable but after a few months every medication began to fail. I tried diet changes but nothing stopped the bleeding. In January 2016, I had to be rushed to the ER after a week of pain and irregular bowel habits. I was so malnourished that I had lost 80 pounds (over two weeks) and was very anemic. They pumped me full of steroids and rebuilt my nutrition, iron, etc. for exactly one month. I was released on steroids and Lialda. Two weeks later I started Remicade. It seemed to work well and I spent another month recovering/rebuilding my strength. In April 2016, days before I was scheduled to go back to work I experienced extreme abdominal pain. I tried everything to get rid of the pain because I feared the idea of having another month long hospital stay. The pain got so bad I eventually gave up and drove mysel f to the ER. Within 1 hour I was told that my colon was perforated, I was septic, and I had peritonitis. I asked for an hour to “think” about consenting to the surgery. I laugh about that because it was the first time I’ve seen two doctors’ jaws drop simultaneously in disbelief that someone was “thinking” about life or death surgery.

The end result? I had a total colectomy with an ileostomy. The future plan is to have 1-2 more surgeries in the next couple months to a year for the J-Pouch.

This has been a long and tough journey with a lots of ups and downs. My GI once said “everything that can go wrong, goes wrong” when talking about the progression of my UC. But I’m optimistic that the surgery and eventually the J-Pouch will finally provide some much needed symptom relief.

The biggest challenges for me are mental and dietary, I’m still battling some depression and trying to figure out what I can or cannot eat. Any tips would be greatly appreciated.

A big thank you to everyone on this site for sharing your stories and Adam for maintaining it! It helped me tremendously while in ICU depressed with a tube down my nose and throat. I wish everyone going through this the absolute best. You have to be extremely tough and brave to battle this disease.

Medications Used:

I’ve tried Sulfasalazine, Mesalamine (various), Prednisone, and Remicade.

written by Dan C

submitted in the colitis venting area