I’m not crazy, I’m just a little unwell….and it’s making me crazy.
I am all about wellness and self-care. Herbal teas and supplements, acupuncture, meditation, rituals and routines, candles, you name it. However, all the “wellness” in the world is not helping me become well. Which obviously has left me frustrated (and exhausted). In this post, I’m discussing a very crappy disease. This post may not be ladylike, but it will be real.
A little background: In 2010, after my fifth birth, I developed Ulcerative Colitis. UC is an inflammatory bowel disease, very similar to Crohns Disease. My symptoms during a flare are constant diarrhea, blood and phlegm in my stool and urgency (which means if I have to go, I have to go NOW!) It also leads to exhaustion, from lack of nutrition, bladder infections and kidney problems from “accidents”, and depression because it makes it difficult to get out of the house due to the aforementioned urgency and accidents. I refuse to stop living my life so accidents happen most frequently in the car because I can’t get my car to a place where I can park and run into a restroom in time. RIP some of my favorite pants, and I keep my car seat covered with a towel, always.
It took months to get diagnosed, which led to prescription meds that did nothing for me except cause unpleasant side effects. Doctors will tell you they have no idea what causes a flare and prescription mesalamines, a form of anti-inflammatory, and steroids are the only hope to combat it. The IBD community, on the other hand, believes the inflammation is caused by the bad bacteria in the gut growing out of control and the solution is to stop feeding them the carbs they love and increase the good bacteria, or probiotics, in your system. Over the course of the next few years, I managed to control my flares by controlling my diet. Sometimes, I’d fall off the wagon, my guts would rebel, I’d straighten up my act and bam, flare over. Between 2011 and 2016 my longest flare-up was maybe three weeks. I haven’t been on pharmaceutical medication since 2012.
Last July, that changed. I’ve already talked about how I let my eating get out of control when I was on the Topomax for my pseudotumor cerebri. A year after I weaned off of the Topomax, my eating was still wild and free and my body started showing me signs that it was not happy with the path I was on. A week before I took off for Wanderlust Fest at Squaw Valley last July, I noticed blood in my stool. Uh-oh. Never a good sign. Of course, having gone through this before, I knew what to expect and I started to get really nervous about three days of camping, sandwiched between two three-hour drives. Luckily, the flare had not gotten out of control yet, and at Wanderlust the only option really is to eat clean, so my nervousness was completely for nothing at that point. But when I got back into the real world, my digestive system resumed its steady decline.
By September, I was desperate. I asked my doctor for the prescription grade probiotics and I was taking them with Yakult. Within two weeks of that treatment, I was all good. So, of course, I got cocky and stopped taking the probiotics. I was cured, right? Um, nope. Partway through November, my symptoms came back with a vengeance. Seeing as it was food season and I’m a little slow, I took my time getting back on the probiotics and cutting out sugar. January first, I resumed my probiotics regimen, cut out processed sugar and white carbs, and truly thought I’d be good in a couple weeks. Frustratingly, that has not been the case.
My typical day starts with my eyes waking up then my belly rumbling. No matter what time it is, when my eyes open, my belly rumbles and I need to answer the call. Most mornings, I’m bouncing between getting ready for work and occupying my throne. On a good day, I can get out of the house on time, on a bad day, I’m stuck in the bathroom and I’m late before I even get started. Then there are days that I make three pit stops on my way to work. There’s a stretch of my commute where I drive twenty minutes and there is nowhere to stop in that stretch. It’s horribly nerve-wracking but I’ve been very fortunate that I’ve made it to work clean so far. Nights like tonight make me a little more than nervous. I have to pick up my boyfriend’s son on my way home, cook dinner then take my daughter to register for classes at the high school. Bet your butt I’ll know where every bathroom in the high school is. Also, I won’t eat dinner until I get home because I want to keep my system calm until I’m safely in my own house. I’ve actually gone days without eating while I was in a flare because I have a life to live and I don’t have time to hunt for restrooms. True story.
But there is a silver lining: I haven’t had an accident in four days, hoping to make it five by bedtime tonight. My acupuncturist gave me some herbal tablets to help the situation along, as well. A Colitis flare doesn’t just end. You just slowly accumulate good days until they outnumber the bad days. I’m not exactly counting good days yet. I’m happy enough without horrendous days, and when a grown ass woman shits herself, that’s a horrendous day.
So let’s bring this full circle back to self-care. It’s very hard to mutter the words, “I hate my guts,” then turn around and preach self-care. With everything I’m going through, I really have to watch my self-talk first. I thank my body for allowing me to navigate this life and remember that there are lessons in every experience, even the crappy ones. Next, I remember that food is medicine. As much as hot chocolate sounds amazing right now, it’s not what’s best for my healing system. Peppermint tea is a wiser choice. I remember to drink my water because it’s very easy to get dehydrated right now. I allow myself as much rest as I can get because, quite frankly, I need it. I also try not to push myself too hard; I save my limited energy for what I feel is most important. Above all else, laughter really is the best medicine. If I couldn’t laugh at myself and this situation, I would not have made it this far. My son was 10 when I developed this condition so while not everyone appreciates potty humor, it’s a staple at our house.
My hope is that if I can be open about this most embarrassing aspect of my life, it will give you the courage to accept and love yourself, flaws, funky diseases and all.