Questions About My Long UC Journey

I’ve learned the value of connecting with those who also struggle with Crohn’s and colitis. The encouragement offered by each member seems vital at this time in the world when negativity often seems to roar louder than positivity. Sometimes, people who struggle with IBD don’t know where to turn when flares and pain make one feel so alone.

One day, an individual reached out with some pointed questions about my nearly 4 decades of living with UC. I thought I would answer those questions for not only that individual but also for anyone else who might be looking to hear from a UC veteran.

After living with UC for so many years, how do you relate to your condition today?

Answer: As I referenced in another article (“Do We Really Know the Root Cause of UC?”), I call UC my “body-mate.” It’s like a roommate, but this is one I can’t break up with or kick out. It lives forever within me. At age 54, I’ve learned to accept this body-mate of mine.

I’ve lived with it since my teen years. When I was young, I used to fight and get angry every time my UC would flare. The college years were the worst for me. I was stressed all the time with schoolwork, holding down a job, while I was also occasionally homeless. In other words, stress didn’t help my relationship with UC. During the years of rocky personal choices and learning to find my true footing professionally as a public school educator, the battle raged on with my body-mate.

Now, I’ve settled down with my UC. I no longer get mad when the flare signs appear in my body. Today, I now believe my body-mate tells me when it’s time to do some deep reflection — some inner work. Such as:

• Is there a stressor weighing on me?
• If there is, how can I gently smooth out the wrinkles of this stress?
• What do I need to change?
• Do I need to perform deep breathing exercises?
• Do I need more sleep?
• Have I been making healthy food choices?
• Do I need to drink more water?
• Did I take on a project that I didn’t want to do?
• Where did I not say “no” when I should have?
• Do I need to take more time of quiet relaxation?

These are the questions I pose inwardly and then move accordingly. Daily responses with this body-mate in tote seem to be what works best for me after almost 4 decades of living with this complex condition.

Have you had any surgeries for your UC or has your intervention been primarily pharmacological?

Answer: I considered having J-Pouch surgery during my early 30s. After traveling to the Cleveland Clinic and consulting with their specialists about the surgery, I didn’t think I was ready for such a big, surgical step — mentally and physically. So, I opted to stick with the medicinal approach. By my early 40s, I began a “deep dive” into alternative therapies for UC. Motivated by my husband to find other treatments than just prescription meds with all their potential side effects, I began experimenting with supplements and dietary changes. My body seemed to respond in kind.

So, I kept tweaking a new regiment of herbal supplements, removing certain foods from my diet, adding daily exercise, deep breathing exercises, and meditation. Now, when flare symptoms occur, I reflect on stressors and begin a low dose of Mesalamine. For about the past decade, this approach has helped me live cooperatively with my body-mate.

What is your opinion on routine colonoscopy?

Answer: I’m a proponent of routine screenings. Is getting a colonoscopy every 2 years necessary? Here’s how I look at it: My maternal uncle died of colon cancer. He never wanted to get a colonoscopy. In addition, my maternal grandmother had colon cancer, and I believe it ultimately led to her death. My paternal grandmother also struggled with bowel issues. To my knowledge, she never had cancer. So, the bottom line is since I have a family history of colon cancer and bowel issues, I’m just not willing to risk the chance of cancer going undetected. So, as miserable as the prep day is, I still get colonoscopies every 2 years.

Do you ever ask yourself after all these years, “Why am I still getting sick?”

Answer: Honestly, I believe generational trauma and neglect are at the root cause of my UC. These stress hormones are great when someone needs to run away from a bear, but to have stressors present all the time, it causes the fight-or-flight-or-freeze reaction to stay perpetually on. This description characterizes the first 18 years of my childhood.

As a result, my body’s tissues and organs stayed inflamed. That’s why the first route my GI takes for a big flare is to prescribe the steroid prednisone. That reduces inflammation. I know this to the core of my being. When I get stressed, my body immediately responds like it did in childhood — stress hormones flood my body (I can feel them), and I stuff them down into my gut (this “depressing” leads to “depression”). Hence, UC lives as my body-mate.

So, I’m working on peeling back the layers of the trauma and neglect I experienced as a child. I’m doing this work all on my own. But I am also reading and researching as much as I can on how chronic stress impacts the mind and body. Also, I just bought the book The Myth of Normal: Trauma, Illness, & Healing in a Toxic Culture. I’ve listened to many interviews with the author, and I truly believe he’s spot on with his diagnosis of the brain-gut connection. Again, I feel this truth in my body. I’ve learned to become so attuned to how my body reacts under certain conditions. I recommend everyone with IBD become their own body “expert”, too.

My healing journey

Moreover, to answer your question about “why” someone still gets sick after all these years, I believe we have to look inward. Find the source of your pain. Heal it first. Then, I believe UC will go into a long-term hibernation. I’m working on that part now. In essence, I believe healing our wounds will set us on a path of reducing the body’s inflammation. But healing years of emotional damage will be a difficult challenge.

In the end, I hope I’ve helped anyone who might have the same questions as the person who reached out to me. To be sure, this support is also part of my healing journey. If you have any questions you’d like any of us here at IBD to answer for you, please leave your questions below in the comment section.