As soon as I found out I was going to be living with an ostomy, I did what any control freak receiving life-changing news would do: started spending hours and hours researching. I looked anywhere I could to find anyone knowledgeable about life with an ostomy - personal blogs, health websites, YouTube stars, Instagram accounts, Facebook pages, you name it, I checked it. And while all of those resources were extremely useful in educating me before my surgery, I quickly learned that there isn't a single source that can fully prepare you for such a life-changing procedure. So here are some of the things that no one really told me about and I learned once I had surgery.
Your mind will be ready for exercise before your body is.
I am a very active person - my boyfriend makes fun of me for a time in college where we met up for lunch and then dinner and I hadn't sat down once between those two meals. I function best when I have a booked schedule from the time I wake up to the time I go to bed, especially when that schedule involves a lot of exercising and walking around. So over the last eight weeks, I've really struggled with the fact that my body requires significant amounts of rest and very little physical activity in order to heal properly. On one hand, I know that the last thing that my body needs is to get exhausted, but on the other hand, I crave that amazing feeling of exertion and accomplishment after finishing a challenging training session. And that's a hard situation to navigate.
Something I'm really missing right now is training for obstacle course races. I used to compete in Spartan Races with my boyfriend - we actually met because of the Spartan Races stickers covering my water bottle - and that makes me miss the starting line even more. It's especially hard on days that he races. Although I am always excited for him and proud of how his training pays off to perform the way he does, there's always a part of my heart that breaks. I am nowhere near joining him on the starting line because of my health, even though I have the drive and motivation to climb over walls and swing from ropes like all of the other racers. I am still trying to find ways to cope, but ultimately I know that I need to be patient because eventually, my body will be ready for that challenge again.
"Exercise" during recovery doesn't feel like it counts as exercise.
Before I got so sick, I was in the best physical shape of my life. I was running dozens of miles a week. I was squatting more than my body weight. I was in the gym at 6 A.M. every day for two hours for my own training sessions. And then I would come back three times a week to teach group fitness classes under the reputation of one of the toughest instructors. Fast forward to today, eight weeks post-op, and my exercise for the day was a mile-long walk around the neighborhood and abdominal exercises designed for someone who just had a C-section. That's a pretty drastic change from where I used to be, and it's often frustrating to think about.
It's hard not to compare my progress today to my progress a year ago. After all, I'm the same person, so I should still be able to do everything I could before and then some. Plus, every single motivational poster out there makes it feel like taking steps backwards in your fitness is the biggest crime you could ever commit. But these aren't posters addressing those members of the population who are recovering from major surgery or illness that requires a significant period of rest. That requires me to tell myself a different story with a different message. Instead of reminding myself of how far I've fallen in my physical fitness, I must choose to remind myself of how much I can bounce back by taking the time to heal correctly and listening to what my body needs. Suddenly, those pelvic tilts and head raises bruise my ego a little less because although they're not part of a 30-minute strength training circuit, they are the building blocks that I will use to do that training circuit in the not-so-distant future.
I worked out while I was sick before surgery, but I still couldn't run as far or as fast as I could before, and I couldn't lift without sprinting to the bathroom every five minutes. Even without an ostomy, my fitness level was harshly lowered, which makes the goal of hitting my mile times and lifting my maximum weights even harder to reach. However, if I jumped right back into the level of intensity that I exercised at before I got sick, I would undoubtedly end up injured and sidelined for even longer than I already should be. So in order to get back to that level, I can take little steps forward every day. Granted, they don't seem like much in the moment, but when I look back over the span of a few weeks, I can recognize how far I have come.
It's easier to see the progress over a longer period of time, and that helps me get less frustrated about my day-to-day progress. So while pushing myself before surgery meant running an extra mile or lifting an extra set, right now pushing myself means walking to the next mailbox in the neighborhood or doing an extra set of pelvic tilts. Pushing myself is how I can improve, but in a circumstance where I’ve undergone a major medical procedure, the balance of challenging myself to test my limits and holding back to listen to my body has to be even more important.
There are some moments during your time with an ostomy that literally no one will ever talk about.
The first time I made it to a scheduled bag change, I was so excited. It was my first time I was going to shower without my bag or wafer attached to my body, and the first time I was going to be completely naked in almost two weeks. I made it into the shower, I didn’t feel lightheaded, my stoma didn't produce a single thing while I was in the shower, and everything was going smoothly. Until I got out. All of a sudden, my stoma decided that it was time to be tremendously active. I had no warning time, so I just stood there as my bathroom turned into one of those horror movie scenes, except replacing the blood with poop.
When I talk about what we affectionately call "Poopmageddon," I can laugh about how ridiculous it was. But I was not laughing when it happened. I felt completely defeated and embarrassed and unable to process what exactly was going on. I didn't know how to react. Was I supposed to think it wasn't a big deal and sing to myself as I cleaned up my bathroom? Was I supposed to lock myself in my room and refuse to leave for hours?
For a while afterwards, I was ashamed that I hadn't immediately developed a superhero complex and jumped into action, because that's what “resilient people” do. But I eventually realized that my response was not only understandable, but completely expected and valid. The way we deal with the crazy situations in which only ostomates find ourselves varies person to person, and that doesn't mean any one response is better than another.
And there are some times where all the preparation in the world can't save you from a Poopmageddon. There isn't anyone who is going to tell you to prepare for that moment, because there are a lot of people who won't experience anything like that. While you may find articles like “5 Tips for Controlling Odor with an Ostomy,” you won’t find one titled “Here’s What to Do When Your Bathroom Walls are Covered in Poop.” So in those unexpected, undocumented, unfortunate moments, I have learned to take a minute to recognize all of those emotions, take a deep breath, and handle the situation.
People like me aren't common in the ostomy community, but that's ok.
Through all of my searches, I found a gigantic ostomy community that is full of decades-worth of knowledge. Ostomy patients have all developed their own tips and tricks while figuring out what products, techniques, and accessories work best with their stoma and lifestyle. However, the majority of its members either suffer from an IBD like Ulcerative Colitis or Crohn's Disease, have colorectal cancer, or underwent emergency surgery. And that's fine – I have learned a lot from people with ostomies whose reasons for undergoing surgery are vastly different from each other.
I personally ended up with an ostomy to deal with chronic constipation caused by functional and anatomical abnormalities, and I had a hard time finding people who had a similar case. Because of that, I found myself feeling somewhat alone and lost since no one was talking about the reason why I was undergoing surgery. I even struggled with feeling a bit of "imposter syndrome" because since I had no chronic illness, I felt like I didn't belong in the community. Over the last few weeks, I have come to realize that it doesn't matter the cause: ostomates can and should support each other. Just because I don't have Ulcerative Colitis doesn't mean that my decades of chronic pain and suffering ultimately culminating in an ileostomy aren't valid. Everyone's case is a little bit different, but at the end of the day, we're all trying to figure out our new normal while we wear a bag of waste on our stomachs.
Major surgery like ostomy surgery can put a strain on relationships of any kind.
I feel tremendously lucky to have a strong support system that has helped me navigate the last year of medical adventures. Over the last twelve months, my younger brother took me to the Emergency Room after I developed a blockage. My dad continued to bring me whatever food sounded good in the hospital even if that meant stopping at four different grocery stores in an hour. My mom spent every single night sleeping on a window seat while I stayed overnight after surgery. My boyfriend flew cross-country to surprise me in my hospital bed this fall. And that’s the short list – I have dozens more people whose actions deserve recognition. Every single person in my closest circle has seen me at my lowest points, loved me through them, and pushed me back up on my feet when I was ready.
But that doesn't mean that I've had only romanticized moments of illness that you see in movies. I've had moments where I have been completely intolerable because I couldn't process my thoughts about my condition and diagnosis. I’ve had moments where I have directed all of my anger and sadness and fear and frustration in the direction of the people who I love the most. I've had moments where my mood has changed at the drop of a hat, and words of encouragement like "it'll be ok" and "you're so strong" go from boosting me up to making me want to scream at the top of my lungs. And while all of my emotions are valid and understandable, I have come to realize that the people who work so hard to keep me positive and happy need a break to recharge.
It's exhausting to love someone with a chronic illness of any kind, and it takes a certain amount of unconditional love to make it through. I have so much respect for the people in my life who have endured everything my medical adventures have thrown my way, because there have been points where running away would have been easier. But it would be unfair of me to expect my support system to handle everything I’m going through without a break. I now try to let some of my emotions run their course without directing them at anyone before I ask for more help.
An ostomy can be a life-changing surgery in the most incredible way.
Before I had surgery, I was terrified that my ileostomy wasn't going to change a thing. I was terrified that the miserable life that I knew would just continue, except with the additional complication of wearing my poop on my stomach. I would have to keep eating the exact same meals I had eaten for the last nine months, keep writhing on the floor in pain, keep running to the bathroom dozens of times a day, keep watching as relationships I treasured slipped away, and keep living in a truly pessimistic world. But I am pleased to say after eight weeks, I am finally excited for the life I have in front of me.
Of course, I have some new challenges too: I have dietary restrictions because of my stoma that are hard to explain (is there really a good way to tell people that basil clogs your stoma?), I develop uncomfortable mini blockages every now and then, I empty my bag pretty frequently, I have to explain my ostomy to people and gauge how grossed out they are by the concept, and I have to be realistic about what I can and can't do on a daily basis. Yes, sometimes they're annoying to deal with. Yes, I have moments where I am back in a black hole where all I can think is "why me" and wish that my bag would disappear. But all in all, my quality of life has increased dramatically.
I cried from happiness when I ate a waffle for the first time in a decade and didn't end up struggling to make it through pain. I watched an entire movie without missing a million scenes because of my constant bathroom breaks. I made it to a wedding with my boyfriend where even though we performed an impromptu bag change in a bathroom, we danced the night away and smiled more than we have in months. It's things like that that you're supposed to be able to do in your twenties, and without my ostomy, there is no way I could have done any of those things. So for that, I am thankful that I wear a bag.
I am only two months into my life with a bag, and I am sure that I will only learn more as time goes on. I am by no means an expert – I would be lying if I said that I don't look up ostomy stuff online on a daily basis because I'm still brand-new to it all. But I’m soaking up as much information and advice as I can get. Even in the moments where I get frustrated with my limitations, I still feel thankful that I can finally see a path towards where I want to be. And I know that path will become even clearer as I figure out my new normal.
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