Seven Years into Colitis (and what has worked for me so far!)
I was diagnosed with Ulcerative Colitis (UC) in January 2015, 3 months after turning 40. I took 0.375 gms. of Mesalamine (Apriso) daily for the first six years. It was not until last year, after a 3-week flare, that my GI doctor decided to increase my medication to 6 capsules.
I've had two visits to the ER since 2015, and surprisingly they were not because of my UC. The first was epiglottitis which could've killed me if I had delayed going to the hospital. The second was gastritis which was the most painful condition I've experienced thus far. This must be how the Cruciatus Curse feels like, I thought to myself.
Namimilipit ako sa sakit sobra, para akong kinukulam.
I haven't changed my medication for the past seven years (and neither have I skipped them). I haven't had any surgery. I haven't lost weight either (but I've lost a lot of hair which thankfully keep growing back!).
UC patients' have different stories, and not everyone has the same set of symptoms. How I maintained my mild-to-moderate UC is not simply luck, it also took a lot of experimentation, sacrifices, and "cleansing."
Here's what has worked for me so far:
Having a support group
My husband eats the same food I eat so that I won't feel alone in my journey (and more importantly, I don't have to cook two separate meals at home!). My relatives and close circle of friends are also aware of my needs and dietary restrictions. Sometimes they're even the first to remind me if I'm about to eat something questionable. I can also count on them to barricade a restroom if I have an emergency. Lastly, there's my IBD tribe from Girls with Guts and Crohn's Colitis Philippines - they're the ones who can genuinely relate to what I'm going through. It is comforting and inspiring to connect with other IBD patients!
Setting boundaries and filters
I've learned how to say "no" to things, people, places, and events that do not make me happy or healthy. I chose to filter the information that makes its way to my inbox, social media feeds, and TV channels.
It can be as simple as saying "no" to a slice of cheese pizza, unfollowing or disconnecting with a friend/acquaintance/influencer who's a ball of negativity, not going to an event where there are no decent restrooms (yikes!), or giving up social media altogether. The point of all this is to detoxify and decrease the amount of stress you bring into your life. You have control over what you feed your mind and soul! Alisin ang mga toxic sa buhay!
Embracing gut-healing foods
I explored different diets such as Autoimmune Protocol, Specific Carbohydrate Diet, FODMAP. I went dairy-free, lactose-free, and sugar-free; I avoided fast foods and processed foods. Sinubukan ko lahat para makita kung saan ako hiyang. I realized it's safe to stick with anti-inflammatory foods, and whole foods are the best (it's unprocessed and uncomplicated)! Boiling, steaming, and air frying are also my favorite methods for cooking. If I'm in remission, I eat as many raw veggies and fruits to get optimum nutrition out of them.
Many patients will say (me included) that there isn't a "one diet that fits all" for IBD. While I've embraced everything "gut-friendly" and "gut-healing," once in a while, when I'm in remission, I will treat myself to a donut, and occasionally I will drink wine. But the absolute no-no's on my list are:
Soda
Corn (including popcorn)
Raw fish and meat
Drinking lots of water
I drink a glass of water on an empty stomach when I wake up. I have this pitcher that holds eight glasses of water to remind me that I need to empty it before I sleep. Other people buy a drinking jug, and some have apps to remind them to drink water throughout the day. Do what works for you, but the point is, stay hydrated! Water helps your body in many ways (with or without IBD!).
Spending time in the sun
I did not appreciate the benefits of absorbing good 'ol Vitamin D until I started to experience joint pains in my 6th year with IBD. I read the medical literature, articles, and testaments from other patients swearing by its powers. What is there to lose if I try? Now I spend 10-20 minutes every day walking outdoors while listening to music or reading a book. Not only does the sun help re-energize my body, but it also lifts my spirits when I feel like going in a funk.
Getting enough sleep
It's hard when you have Netflix and Instagram that never sleeps or when you have friends and family in a different timezone. But sleep is essential to healing.
We don't have a TV in our bedroom, and I try not to tinker with my phone when I'm already in bed (except to check on the alarm). I have a pile of books beside me to read if I can't sleep. And then I have my lavender pillow spray, weighted blanket, and earplugs. It's a process. I don't fall asleep quickly, and I have to be in the proper position, with the right pillows and blankets.
I set a sleep time by 10 PM, no matter how awake I am - I have to be in bed and try to sleep. No matter how healthy you eat, if you don't get enough sleep, your body will not have the energy to heal properly.
Having an attitude of gratitude
I would not have been able to go through each day if I didn’t have the proper mindset. Sure, my case may not be as severe or complicated as other patients, but my UC is still there, and it can get worse at any time. I’ve just been trying my darn best to control whatever I can to make sure I’m healthy - and one of those things is controlling my attitude towards my illness and life in general. Every day I wake up, I am reminded that I am still here for a purpose. When there are days that I feel like being pulled into a dark place, I count my blessings so I can turn my gaze towards the light. I‘m grateful.
And that's it - my Top 7 things for my 7th year with Colitis. It may be more challenging in some areas, but it’s still doable. Kaya kung kakayanin.
So what’s next? I'm going to try new things (more gut-friendly foods!), experiment with new recipes, and, if the opportunity allows, maybe return to traveling (and go home to Manila!). I'll continue living based on my rules, not what society or the media dictates. I hope to connect with more patients as I continue my journey with Colitis. And lastly, I’ll continue to pray that science gets closer to finding a cure.
Tuloy ang laban.