Back in 2023 I termed colitis — an unfortunate and terrible side effect of the melanoma treatment — a hellscape.
My opinion has not changed. Those were dark days in June 2023 and yet my underlying mood at the time — as I think back now — seemed naively positive. Once I was diagnosed with colitis, doctors led me to believe that the symptoms would subside as the cancer drug left my body. But looming over me was the knowledge that IBD (inflammatory bowel disease) is a chronic autoimmune condition with no cure. For most people, it arises seemingly out of the blue and resists all manner of treatments. I did not want that to be me. I believed that I would come through this episode relatively unscathed and be able to restart my life.
Fifteen months have passed since my last immunotherapy infusion for cancer, time enough for the cancer drug to stop exerting its effects on my colon. Eighteen months have passed since the colitis symptoms started in March 2023.
I’m coming to grips with this disease as a chronic condition.
What I hate the most — and there are many things to hate about the disease — is that I lost my sense of wellbeing. A sense of everything being in order and working well. Instead, I’ve had a belly ache since March 2023. Sometimes it’s a dull ache, sometimes it feels like there’s a piece of 2x4 shoved up against my belly button. As with any chronic pain, it’s difficult to ignore it, to not think about how my body has been hijacked. I never realized how important feeling content was, how central to my happiness the state of my belly could be.
How I miss that feeling of contentment after eating a simple meal.That’s a distant memory. Looking forward to dining at a favorite restaurant? I think I’ve eaten out once in the past year. Looking forward to just eating a favorite food? Anything having to do with food is filled with danger in my warped world.
All in all, it really sucks to suffer from this disease. Like I wrote last year, a hellscape.
There are interventions, including meditation, exercise, food, and Rx. Before describing the good stuff, I’ll recap the medical side.
Pharma rollercoaster
After wandering the wilderness of ineffective drugs since my diagnosis in May 2023, I’m five months in on a newer biologic, Omvoh, that may be more effective than the others. Omvoh is an interleukin 23 antagonist. Specifically,
Omvoh selectively binds to the p19 subunit of IL-23 and inhibits its interaction with the IL-23 receptor
Inflammation due to over-activation of the IL-23 pathway plays a critical role in the pathogenesis of ulcerative colitis
It all sounds fancy and good, right? I am experiencing some better moments, but the jury is still out on long-term relief.
The road to this treatment plan has offered up numerous hurdles, all insurance related. The initial authorization took two months. Then my COBRA insurance ended and the auth process began anew with my new plan under United Healthcare. Their declaration: Declined. Since I had already started treatment, it was critical that I receive the next infusion in a reasonable window of time.
A line I never thought I’d write: Big Pharma came to the rescue
Eli Lilly — maker of Omvoh — has a free drug plan for unfortunate schmucks like me whose insurance carrier denies coverage. I signed up. Or more correctly, Eli Lilly signed me up. The pharmaceutical company has a vested interest in procuring new patients. It needs us and our data, especially for newer drugs, like Omvoh.
So I was golden for infusions 2 and 3. I sat in an infusion room for those first three treatments. In July, we started the at-home injections and learned the procedure over Zoom from the nice Omvoh nurse in Denton, Texas. Shout out to the anonymous technical writing and illustrating team that put together the excellent accompanying documentation.
Out of the blue, August brought another insurance-related change when United began to cover the drug. Okay. I will never truly understand what goes on in those organizations.
Is the treatment working?
Yes, the drug seems to be helping, but I’m still experiencing enough symptoms to know that I’m not in remission. Furthermore, just to play with me, the universe recently handed me ten glorious symptom-free days. I believed I was finally on the path to real healing, when one day my belly pain started up again. So I’m back at managing symptoms and feeling rather morose at my prospects.
Not content to blindly follow doctor’s orders, especially when the orders are not working, I have tried numerous interventions. In the early days, before the diagnosis, I followed the BRAT diet: bananas, rice, apple sauce, toast. That experience was a real joy killer and had no effect on my symptoms. Probiotics, turmeric, and cod liver oil did nothing. A vegan/gluten free diet was tasty but only caused me to lose precious pounds that I couldn’t afford to lose. It too had no effect on my symptoms. Chinese herbs caused more stomach upset, perhaps an initial reaction that would abate, but the experience put me on guard and so I stopped taking the herbs.
My current diet is (mainly) gluten and dairy free but includes meat. I try to avoid added sugar and processed foods. All the usual bits of nutritional common sense. The Center for Applied Nutrition at UMass Chan Medical School has been a helpful guide, especially in reminding me of the value of prebiotics and probiotics. It is my gut after all … with a microbiome.
In support, I recently started gobbling up Mutaflor, a different probiotic from the ones I had taken before and whose studies show promise with colitis patients. Since starting on that probiotic, my symptoms have improved. Was this improvement a result of the probiotic or due to Omvoh? Or both or neither? Not sure I can know without stopping one. I’m not inclined to do that test.
Walking: My version of a bunny flop
Aside from medical and food interventions, I have been at an impasse for months. I realized I had been waiting until a cure would take effect to restart my life. But if relief was still in the future, I didn’t want to reside on hold indefinitely. I knew I needed to take some action that is appropriate for me.
I decided to give walking a try. I have always turned to exercise to address physical and emotional issues in my life. When I was a girl, I started running, often with my dad. Our pace allowed us to talk, and we both were competitive enough to go the distance. My favorite memories of running were being able to run 5 or 6 or 7 miles, enough to get in to the zone where I would forget that I was even running.
I don’t run anymore, but I have found extended walks to be a fine substitute. Recently, I started walking for 10 to 15 minutes, a leisurely stroll. When my body didn’t complain, I gradually increased my walking time. These days I’m regularly walking 60 minutes in the morning, at a pace that lets me break out in a sweat. It’s not running, long lost love of mine, but it’ll do. And even if I begin the walk with a belly ache, the ache subsides as I continue walking. If the ache returns when I stop walking, I know I can enjoy some freedom during the next walk.
Tending happiness through physical exercise
Seated meditation is one way to tend to my happiness. I still turn to seated meditation most days. Exercise can also be meditative, and walking is a perfect complement for me at this time, as I am able. As I experienced when I was a runner, I am able to enter a relaxed state when I walk. So the activity becomes a time for me to tend to my happiness.
A theme in Buddhist wisdom is the importance of watering the seeds of mindfulness that we store in our subconscious. Mindfulness can help me stay centered and focused on the present. But tending to mindfulness requires discipline. It’s not enough to simply vow to think positive. I need to make a commitment to make my program part of my everyday.
Our subconscious also stores seeds of anger and division. These can be much more attractive to tend to. If I don’t pay attention to my focus, it’s all too easy for me to get exercised about a favorite rage-filled topic. Clicking a link to watch an outrageous video can feel so good! Over time, and especially if I’m not tending to my happiness, I can do real damage to my emotional wellbeing. Choosing to tend to the seeds of happiness and joy is more challenging, but is better for me and those around me.
Physical exercise — walking for me — can be a wonderful way to meditate. A focus on my happiness through physical activity has the potential to slay some of the emotional side effects of debilitating disease.
Meeting friends
A side benefit to walking the neighborhood is saying hello to neighbors, keeping up with new construction, and examining gardens. Here’s our neighbor dog Daisy, the Doberman. She’s delightful.
It’s an 858-day Duolingo streak
I reached an exciting Duolingo milestone: 858 consecutive days even while recovering from emergency surgery last summer. To celebrate, my daughter-in-law surprised me with this cake. That expression of mine is genuine surprise and delight. Look! My hair is back and curly!
I am so glad that this new drug from Eli Lilly may be starting to help the Colitis. Your words on finding more answers to improving your health and happiness are so inspiring. You are a true warrior on the many medical hurdles you have endured and always seem to find your North Star in dealing with it all.
Remember when you are feeling ready, I am taking you Prince Edward Island!
Sending lots of healing love your way!
Amazing how your post just seem to come always at the perfect time. Thanks for being so open and honest beautiful. Holy caca you're able to walk 60 minutes a day. That's fantastic by the way. Now if only I could get as flexible as bun. Love you.