Ulcerative colitis is a common, chronic inflammatory disease that results in long-term inflammation and ulcers in the large intestine. It can cause stomach discomfort and rapid emptying of the colon. Even though ulcerative colitis has no known cure, through medication and a disciplined diet the symptoms can be significantly reduced. In some cases, resulting in long-term remission.
For some people, ulcerative colitis can be painful, and at times it can also steal their confidence and ability to live a normal life. However, this is not the case of Renee Holt who has battled both ulcerative colitis and colon cancer.
Health and learning as a way of life
Renee Holt lives in Seattle and works in international public health, specifically in clinical trials of vaccines. For work she travels to places like Vietnam and Serbia, where she helps with operations, clinical trial process, and helps determine whether a study site should be considered acceptable for a trial or not.
In her free time, she enjoys hiking, running, playing ping pong, reading, and listening to podcasts. One of the podcasts she enjoys the most is “Hidden Brain”, which talks about behavioral psychology. She enjoys learning about human behavior and how the right mindset is important when facing challenges in life.
In 1996 Renee first started experiencing symptoms of ulcerative colitis. She says, “All of the sudden I started feeling an urgency to go to the bathroom, I would sit down and it would be blood coming out. I went to see a doctor, he did a colonoscopy and we found out that I had ulcerative colitis”.
Understandably, this diagnosis made her worried. Thinking about the implications of the condition brought some emotional distress to her life. When she was diagnosed, she learned that an UC diagnosis can result in three outcomes: UC symptoms can stay the way they are, it can progress to more sections of the colon, or it can progress to the whole colon (this is called Pancolitis).
Renee says that she didn’t have any pain or diarrhea as a result of her UC. This was because her UC was mostly confined to her rectum. It didn’t progress any further into the colon. She says this was a blessing in disguise.
“I was lucky because with ulcerative colitis you have a two-thirds possibility of it progressing. I definitely had flares (moments when the disease acts up), but my flare-ups were really about bleeding to the point of turning the toilet bowl water red. But not a lot of pain.” She says. “I’ve always felt very lucky with my UC. I have friends who have Crohn’s disease or UC, and they suffer so much.”
Tackling greater obstacles
Some years later Renee was still doing fine with her ulcerative colitis when suddenly, she received the news that her younger brother was diagnosed with colon cancer. Her brother’s surgeon at the time said that the entire family should get genetic testing done because it could probably be a genetic mutation. At that moment, Renee remembered that her father had had colon cancer twice and her grandfather had died of colon cancer. She got the testing done and indeed, she had the mutation.
Renee decided to do a colonoscopy, and unfortunately doctors found early-stage cancer in her colon. The standard recommendation when this occurs with the genetic mutation she had is to remove the entire colon. Renee’s doctors also suggested that she get her uterus and ovaries removed because she was more likely to get cancer there as well. So, in July 2011, Renee made the big decision to undergo major surgery.
For Renee, this was a bitter irony, “The ironic thing is that a lot of people who have their colon removed, do so because of ulcerative colitis. Removing the colon removes the colitis and they can often have a better life. Yet here I was with a UC that was manageable, and I ended up getting my colon removed because of a genetic mutation and cancer.”
Life after surgery
In December 2011, Renee started life anew with a J-Pouch. A J-Pouch is a surgically created reservoir to hold waste before it leaves the body. A J-pouch is an alternative to an ileostomy, where waste goes into a bag worn on the abdomen. People with J-pouches pass a lot of waste even in the middle of the night. As you can imagine, dehydration can be an issue.
At the time of our interview, Renee has lived six years without her colon. Even though she has had a couple blockages from scar tissue, she has learned how to manage them successfully and continue with her life. She adds that life is good, although a J-Pouch can create some embarrassing moments in the bathroom due to the release of gas. It can make a lot of embarrassing noise, but Renee says, “You must get over it. Make it a new normal.”
Renee feels that she is happy and doesn’t feel limited, even without a colon. “I’ve learned how to live my life, I go backpacking, I’ve run half marathons… It doesn’t limit me at all.”
Advice for people with ulcerative colitis
When Renee was diagnosed with ulcerative colitis, one of the things that helped her the most was getting in touch with someone who was doing well with UC. Her doctor connected them, “I’ll never forget this, I met her at the Bellevue Square Mall. I was so grateful to her. She didn’t even know me but she took the time to meet with me and tell me how she managed her UC. I really appreciated that.”
Talking to people who have been on the same journey was critical for the successful management of her ulcerative colitis, in fact, she feels like she can pay it forward to the next person. “It feels like by sharing my experience I can help people, the same way the lady who met me at Bellevue Square helped me.”
Renee encourages others to stay positive because having the right attitude is very important. “There are things that you can do, keep searching, and you will find what’s going to be best for you. Everyone has their own health journey. Enjoy life.”