MARK'S STORY

In 1997, while in architecture school at the University of Kansas, I was diagnosed with ulcerative colitis and began treatment.  In the beginning, the disease was largely kept in check by different medications and I just experienced random flare ups.  The nature of ulcerative colitis and Crohn's Disease is that people can feel wide-ranging symptoms from mild to severe. One person with the disease might never have any problems with it other than taking maintenance medications, while others fight a constant battle to keep their ever-present symptoms manageable.

In 2002, while living in Denver, Colorado, my ulcerative colitis took a turn for the worse and began to not respond to medications.  I underwent numerous tests and started my first rounds of high-dose steriods to combat the inflammation.  Symptoms included constant diarrhea, abdominal pain, weight loss, and fatigue.  As a result, I started to miss a good deal of work and eventually had to go to a reduced schedule, which was not easy in the architecture world. Fortunately, I had a very understanding employer. It became apparent by summer that my entire large intestine (colon) had become diseased and surgery was the only option.

In the fall of 2002, I checked into Presbyterian St. Luke's Hospital in Denver for the first part of a two-part surgery called Ileoanal anastomosis or J-Pouch.   Part one of the surgery involved removing the entire colon and creating a temporary ileostomy, while the J-Pouch had time to heal between the first and second surgeries.

The surgery took four hours and went well, but when I woke up in recovery, I was in extreme pain.  Since I had never had surgery before, I thought I just had a low pain threshold and the pain I was feeling was probably normal post-surgery pain.  However, I found out later that my pain pump was not properly hooked up; I had not received any pain medications for the first 12 hours after surgery.  NOT FUN.  I think I probably broke Amanda's hand during this time, gripping it to ride out the pain.

After this was corrected, recovery went much better and after six days I was released from the hospital to recover at home.

Post surgery puffy

Post surgery incision with temporary ileostomy

I had an almost three month recovery at home before the second stage of the surgery.  In this stage, the temporary ileostomy was reversed and the J-Pouch was re-connected and functional.  Surgery lasted about a hour and half and I was only in the hospital for three days before being sent home to recover.  Everything went great and I started learning how to adjust to my J-Pouch and life without ulcerative colitis.

Post second surgery, healing up

The new year, brought on the motto "Colon free in 2003."  However, I started experiencing problems with dehydration and chronic diarrhea and began undergoing testing once again to determine the cause.  I was told that I had celiac disease and began a gluten-free diet to combat this. The next several years would become increasing frustrating as I would later learn that I did not have celiac disease. I was finally diagnosed with Crohn's Disease in 2008.

After all the problems of the previous five years, we made sure we had the correct prognoses through multiple means and several different doctors.  I had been "lucky" to both have ulcerative colitis and Crohn's Disease.  If the diagnosis of Crohn's had been known at the time of my colon surgery, I would have had a permanent ileostomy because the Crohn's Disease can cause the J-Pouch to fail over time.

That is part of my battle, to keep the J-Pouch in the best health I can to try to avoid another major surgery down the road.

The Crohn's Disease has been a battle.  There are times when the disease is in remission, and other times where I am rendered sick for months at a time.  It is a constant shuffling of medications and therapies to try to get the symptoms under control.  It involves being on high doses of steriods to control the inflammation and dealing with their side effects.  It involves being on biologics and giving yourself injections, which as a side effect lowers your immune system and ability to fight off infections.

The most simple things become difficult as you are basing you routine around access to a bathroom.  In 2010, my wife and I made the decision for me to become a stay-at-home dad in order to better deal with my situation and be able to focus on my health. It was a tough decision, but the right one as I was having a hard time sustaining normal work periods and was getting sicker simply because I felt guilty about calling in sick to work so frequently.  It turned into a double bonus of being able to spend more time with my daughter and being able to do things that helped out my health when I needed them.

2011 has turned into a tough year; the Crohn's has been out of remission for most of the year.  I have had more periods of sickness than health this year, unfortunately.  In July I started experiencing anal abscesses for the first time as a result of Crohn's. I would not wish these on my worst enemy, as they are extremely painful and uncomfortable.  It requires a surgical procedure to be done to open up the abscess and drain out all of the infection and then allow the open wound to heal.  I have had this procedure done four different times since July.

My doctor discovered that on top of the abscess, there is a fistula behind causing the recurrent abscesses.  I recently had another surgery called a fistulotomy with a seton placement, which basically creates an open path to the outside so no new abscesses can form. It's too early to tell, but I'm hopeful that this seton--which is basically a band inserted up through the abscess and fistul and out through the rectum, keeping the tunnel open so that the infection can continue to drain--will prevent further abscesses from forming.

If I'm able to conquer this additional barrier to better health, I'm hopeful I can find a way to treat the Crohn's and bring it into remission again. After all, hope doesn't cost us a thing, unless we lose it.