Guest Article: My Journey with Ulcerative Colitis

Gut Heart Soul preface: As I have shared my experiences with the various health concerns I get to battle every day, I also wanted to share other invisible illnesses that friends, family members, and you the reader may face. The first guest article below is my spouse, who has lived with Ulcerative Colitis flares since we met. Ulcerative Colitis is one of the Inflammatory Bowel Diseases, and a chronic condition that inflames the large intestine's inner lining. It is not limited to the intestinal tract, as the disease impacts mental health, physical health, and emotional health. Jeremy's story is below, and in the past few months, we have also learned that our younger son has inherited the disease. Follow up posts will share our experience getting him diagnosed and started on a treatment plan. Written by Jeremy Brown, Special Guest Contributor I have been living with Ulcerative Colitis (UC) for 20 years.  It started in 2005, when I noticed I was having pain and discomfort in my stomach. My doctor at the time referred me to a Gastroenterologist in Raleigh, NC, where I was living at the time.  That is the year I had my first colonoscopy. It was a rough experience, as the colonoscopy prep took a lot out of me, which in turn made the recovery much more difficult as well. The Gastroenterologist gave me medicine after the colonoscopy procedure that I took for about a month or two and it helped me get rid of the pain I was having.

From that time, I did not have any more issues that I noticed until the fall 2007.  Kristen and I got married earlier in the year and we were living in Chesapeake, VA, while I went to graduate school.  I started having stomach pain again.  I do not remember if it was accompanied by bleeding at this time, but I do remember it was painful.  I went to see a Gastroenterologist in Chesapeake and again they scheduled a colonoscopy to see what was going on.  After this colonoscopy was when I was officially diagnosed with UC.  The Gastroenterologist put me on a low dose of an anti-inflammatory medicine called Asacol. It helped, but I would continue to experience flareups a few times a year.  For the flareups, I would get prescribed Prednisone.  Over time the flareups would come more frequently and require me to be on Prednisone for months at a time.

In late 2010 or early 2011 I had a bad flareup, which led to me continuing both a high dose of Asacol and Prednisone for a month with no relief.  My doctor at the time said I could either continue with those and hope it got better or go to the hospital to explore other options.  With Kristen pregnant with our first son going to be due in a few months, my choice was clear.  I needed to get better, so I went into the hospital.  While in the hospital, I was initially given only IV fluids, then a clear liquid diet, followed by the treat of other liquids, and finally adding in soft food. I believe they put me on stronger steroids, then they prescribed Remicade and Mercaptopurine, which was supposed to be temporary.  After my week-long hospital stay, I would go in every eight weeks for the infusion of Remicade, which would take 3-4 hours every visit.  My doctor at the time had no real plan to get me off the Mercaptopurine, which is a treatment more often used for patients with leukemia and has major side effects, so I ended up switching doctors. The new GI team was able to transition me off the Mercaptopurine and continue the course of Remicade as my primary treatment.  After a few years, my body adapted to Remicade, and I moved onto Humira pens at home for around 6 years, and I am currently on Entyvio infusions every few weeks.

Now in my early 40's, I have had 9 or 10 colonoscopies, roughly one every 2-3 years. The first few took a lot out of me, no pun intended.  It took a day or two to fully recover.  When you experience such a joyous event (ha) every few years, you figure out ways to adapt and adjust to make the process easier on your body. I have now learned that staying hydrated beforehand helps immensely and due to that, the recovery is much quicker.  Meaning I just need to rest for the rest of the day of the procedure, and I am usually good the following day.  With the medicine keeping my UC in remission, I do not think of it much.  Until I get a pain in my descending colon and/or when I get blood coming out.  Yes, I know where my ascending, transverse, and descending colon are! Without new medicines coming out when I need them, who knows where I would be.  I am thankful for the doctor I have now.  He really cares and we discuss things going on in our lives when I visit the office.

Some days I am tired and just want to watch TV or read a book.  Luckily, I have a loving wife who understands and so we just sit around enjoying each other's company while our boys play.  Other days I have energy and take care of things we need to take care of, and of course, enjoy traveling with our family as much as possible.