15 Questions & Answers on Living With Ulcerative Colitis
"Existence wants you to be you." –Osho
For anyone new to this IBD site, you might be wondering more about your own diagnosis or maybe the diagnosis of a loved one. So, I thought I would take a different approach and interview myself to help explain what it's like living with ulcerative colitis.
Q&A on all-things UC
1. Who are you, and when were you diagnosed with ulcerative colitis?
My name is Traci. I'm a 51-year-old high school English language arts teacher who lives in the foothills of Appalachia. Around 1989, I went to a doctor because I had experienced powerful gut pain along with terrible bouts of diarrhea for a few years. This was during my first year of college at age 19. A doctor first performed an endoscopy. That led to a colonoscopy, which then led to the diagnosis of ulcerative colitis.
2. Had you heard of ulcerative colitis prior to your diagnosis?
No, I wasn't aware of any IBD. But a newspaper article I read written by a mother about her son's diagnosis of ulcerative colitis led me to seek medical attention. If I hadn't read that article, I'm not sure how long I would have gone without knowing the cause of my painful symptoms.
3. What is ulcerative colitis?
It's an inflammatory bowel disease that causes inflammation and ulcers in the large intestine and rectum. This problem most often leads to abdominal pain, loose and urgent bowel movements, diarrhea, and bloody stools that might also consist of mucus or pus.
4. Since you were diagnosed at 19, I wonder if it's common in young people?
It seems that UC most commonly gets diagnosed in people under the age of 30 and over the age of 60. But I've been told that it can occur at any age.
5. What were some of your symptoms that led you to know that something wasn’t "right" with your body?
All during high school, I experienced abdominal cramps/pain, diarrhea, and urgent bowel movements. When the rectal bleeding began, I knew that was a sign that my problem was more than just simple diarrhea. I became anemic and knew I needed help.
6. What’s the difference between IBD and IBS?
Many people think I mean irritable bowel syndrome when I say I have an IBD. They're not the same. Although I'm not a doctor, I know my colitis manifests itself as an "ulceration" during colonoscopies. There's also evidence of inflammation and bleeding. Believe me, I've seen the pictures. Irritable bowel syndrome consists of a group of symptoms. There might be pain and bloating, but there's no evidence of inflammation.
7. What is a bad day like for you when experiencing a flare-up?
On a bad day, my gut hurts like a thousand knives stabbing me internally. I'm usually doubled over or balled up in pain. Bowel movements hurt. I bleed from my rectum. I sit on the commode for a long time because I don't feel like I can get up — like my body isn't finished emptying itself. When I do leave the bathroom, I feel exhausted. Like life is drained from my body. Sometimes I have a fever. And then there's the constant, urgent feeling to get to the restroom again. Like, I don't feel comfortable leaving my potty post.
8. How is life different since you were diagnosed?
I've experimented with every medication under the sun. My most hated medicine is prednisone, but it works the fastest on tamping down the inflammation. Every 2 years, I get a colonoscopy to check on my UC and to check for cancer. (Think about it: colonoscopies every 2 years since I was 19!) I realize how stress goes straight to my gut. So, I have to focus on not allowing stress to creep in. That’s super tough during a pandemic.
9. Speaking of the pandemic, how is your body dealing with COVID-19?
The unfolding of COVID in "real-time" is scary — especially for anyone on an immunosuppressant. Thankfully, I'm not currently on any UC medications. But that doesn't remove the fear of "will my body be able to fight it off" if I would contract COVID. In addition, I worry about a UC flare if I tested positive.
Stress doesn't help my body. So, I do my best to mentally block out the "unknowns" of COVID and focus on "good feeling thoughts." I've received 3 doses of the Moderna vaccine. I wear face masks in public (especially in the classroom) and keep my distance as much as possible. In other words, I'm doing everything I can to protect myself.
10. Are you able to work with UC?
Yes, I still teach. But I miss a lot of days when I'm experiencing flares. Sometimes it's hard just to drive to work because I don’t pass any restrooms along my route. Also, I can't leave my classroom whenever the UC "urge" strikes. That's a liability. So, I have to make sure teachers in nearby classrooms know of my condition in case I need them to cover for me.
11. Are you sure you really have a chronic disease because you "don’t look sick"?
No one has ever said this to my face, but I see it in their questioning eyes. I tell people that I know you can't see my disease on the outside, but if you saw my colonoscopy pictures you'd understand. And I do have pictures! A photo album's worth! Besides, when they see me running to the restroom as much as I do, they give me leeway.
12. Have you had surgery on your colon to help with your UC?
I traveled to the Cleveland Clinic during my 30s because I was at my wit's end with medications. At the Digestive Disease and Surgery Institute, I received a thorough (and I mean "thorough") exam. Then, I reviewed and discussed with specialists about J-pouch surgery, which is the most common surgical procedure when medications don't control UC. The final decision was up to me. For whatever reason, something inside me said "no" to surgery. I returned home with my colon intact and began a new path set on researching alternative therapies — mostly natural therapies.
It took me until age 42-ish before I ever fell into remission. I've been in UC remission for about 9 years now with only occasional flares. For me, I've learned to "listen" to my body. My body knows best. Surgery wasn't the right path for me at that time. Learning your body and listening to it is key to being the "you" you are meant to be.
13. What advice do you offer to anyone newly diagnosed with UC?
First and foremost, be good and kind to yourself. Remove stressors from your environment. Find ways to relax. A relaxed body is better equipped to deal with a flare.
Watch what you eat. It's common sense, but what goes in must come out. So be picky about food choices. I have learned what foods I can and cannot eat during a flare-up. Experience has taught me to adjust my diet in times of need.
Find a good doctor — one who will truly listen to you. Each body is different, so medication that works for one person may not work for you. So, be patient as you navigate the medicinal path. But also become a "good" researcher. Only within the past decade have I realized the value of researching different methods and techniques for treating UC.
You'll always have this disease. So, embrace your UC dragon (that's my term of "endearment"), and then find ways to live with it that are most comfortable for you and your lifestyle.
14. Is raising awareness important to you?
Absolutely! I think there's such a taboo around IBD. We don't really know how and why UC happens. Also, we can't just make it go away. It's a long-term disease. So, why be embarrassed about an illness that you can't control? That’s why I love this IBD community. It helps raise awareness through personal stories, offers mental and physical health resources, treatment options, recipe ideas for healthy living, and so much more!
In this community, no question or discussion topic is off-limits. Everyone is welcomed, embraced, and offered resources. Through awareness, my hope is that people gain confidence in talking about their IBD and not feel so alone. Because as the Osho quote goes, "Existence wants you to be you."
15. Can you offer a motivational quote for other IBD patients?
"Take care of your body. It's the only place you have to live." –Jim Rohn
If you have any questions about UC, please feel free to ask. I, along with others in this community, will be happy to respond.
Do you have a diagnosis story to share?