Well, it’s been a whirlwind of a year so far! In the last ten months, I’ve graduated with my Master’s Degree, started a job, and also gotten engaged to my best friend! Oh, and had my entire colon removed and spent more than three weeks in the hospital. So I’ve had my share of major successes and setbacks through this whole process. The last time I wrote an update, I set three goals for myself to achieve by this June: run a 5K, climb a rope, and do a pull-up. Out of those three, I achieved one. I had a few curve balls thrown my way that prevented me from checking off all three, but I also had some moments of triumph. And plenty has happened since June too, so here’s a brief recap of what’s been going on - the good, the bad, and the ugly!
On Valentine’s Day, I went in for my weekly personal training session. Robert and I had been working on pull-up technique using resistance bands, and because I had made good progress in my strength, the next step was taking away those bands and instead relying on a little bit of a jump as the momentum for getting my chin above the bar. Everything was going fine until the end of my session when I went to the bathroom to empty my bag and looked down at my stomach - my tiny stoma had grown from the size of a dime to the size of a golf ball.
That’s when the panic set in. I was scared to death that I had completely ruined my stoma, that I would need emergency surgery to correct it, that by the time I got to the hospital blood supply would have been cut off from my intestine. Some frantic calls to my surgeon got my dad and I an appointment as soon as we could get to the office. In all of my research about exercising with an ostomy, I’d heard about developing a parastomal hernia, where the intestine bulges through the abdominal wall near where the stoma was created. But I’d never heard of a stoma increasing in size like this.
By the time we got to the hospital, my normally recessed stoma was prolapsed - I had about three inches of intestine sitting in my ostomy bag. I was in pain, but more importantly, I was terrified. I had no control over what was going on with my body. I felt like I had ruined everything by trying to accomplish my goals. Luckily our nurse comforted me and said that she’d seen plenty of prolapsed stomas and that it would be ok, even if it didn’t feel like it right at that moment. And by the time my doctor came in to check on me, my stoma had reduced in size - there was no longer intestine hanging out, and my stoma was about the size of a quarter.
I was instructed to be careful, but to continue exercising. The stronger my abdominal wall could be, the less likely I was to have another prolapse. Hearing that made me so scared. Why would I keep doing something that had thrown my body out of whack? But after a few days of lighter activity, I started conquering my fears again. For the first few days after that scare, I had some mini prolapses. But none of them got out of control, especially since I had learned some tips on how to fix them if they happen (like pouring sugar on the stoma, oddly enough!).
So why did I get a prolapse in the first place? I had started to get a little too comfortable - I no longer thoughts about bracing my abs when I did every exercise, I just assumed that my stoma would be fine since I’d been working out consistently for several months. But that’s where the danger crept in. It was a good wake up call to keep working on the building blocks of safe exercise with a stoma like simple abdominal stabilization exercises even while chasing loftier goals like doing a pull-up.
Fast forward two months. With the weather warming up, I started getting emails from the running events I’d done in the past filled with listings for different races. I’d been prolapse-free for several weeks, my cardio training had gone pretty well in terms of controlling my heart rate, and I felt ready to achieve one of my goals from January: running a 5K. I picked out a race with plenty of time to complete a training plan and started ramping up my efforts. I was running three days a week, not pushing my pace to keep my heart rate in a safe range, and eventually, I ran a mile without stopping. It may have been at a pace about a third slower than I was running pre-medical meltdown, but I was still running. But that’s when things hit the fan.
One week before the race, I woke up with a ton of pain in my left hip and knee. I hoped that it would be a 24-hour thing, but by day three of hobbling across campus to all of my classes, I knew that I was in trouble. From my training and my predisposition to joint issues, I had developed IT Band Syndrome, a nagging injury known to affect runners who try to increase their mileage too quickly. The IT (ileotibial) band runs from your knee to your hip, explaining the pain that I was feeling. After my efforts the entire winter to fight my medical conditions and get my cardio ability ready to run a 5K, I was sidelined by a tendon issue. It didn’t seem fair - couldn’t I just get an exemption from inconveniences like pulled muscles after all I’d been through? Even though that would be nice, it’s just not the way the world works.
Unfortunately, this was not the first time I had to back out of a race. In fact, it was the fifth race that I couldn’t run because my body wouldn’t cooperate. I started to doubt myself, question why I kept setting goals for myself only to watch them collapse in front of me. I felt disappointed, betrayed by my body, jealous of everyone who never had to wonder if their body would limit them from doing something that they wanted to do. I wallowed like this for a little bit, but just like after every other setback I’ve faced, I picked myself up and pressed forward. And that made my next successes even sweeter.
328 days post-surgery, I accomplished one of my goals: I did my first pull-up with an ostomy. It wasn’t a straight path to get there - I can remember sitting in my surgeon’s office right after my stoma had prolapsed and saying to myself “well, that’s one goal I’ll never achieve.” I actually found myself fighting back tears after that pull-up. I had proved to myself that my goals were still within reach, that even after a life-changing surgery and plenty of setbacks I still had the fight inside me to do anything I set my mind to.
But that pull-up wouldn’t have been possible without some major support from Robert. He met me where I was, motivated me to achieve the extraordinary, and learned all that he could about my conditions in order to adapt our workouts to me. I am and forever will be grateful to his help and mentorship.
That pull-up wasn’t my only success from this spring. Even though I ended up unable to run my 5K, all of that training paid off - on my family’s vacation to Utah and Arizona, my cardio work gave me the stamina to hike in some absolutely incredible places. The hikes that we completed weren’t always the easiest, but because I had pushed myself earlier this year, my body was fully prepared to hike in places like Arches National Park, Canyonlands National Park, and even a mile down into the Grand Canyon! Given the choice between running a 5K and hiking in some of the most awe-inspiring places on earth, they’re not even comparable.
And, I went canyoneering, ostomy bag and all! I was concerned about the harness situation and whether or not it would damage my stoma, but I have photo evidence that I did rappel down the side of a 150-foot cliff! Special shoutout to Stealth Belt for making that possible - wearing my bag sideways and out of the way made the experience so much more enjoyable.
On June 13, almost exactly one year since my initial ileostomy surgery, I went under the knife again - this time, for a total colectomy, gallbladder removal, and revision of my stoma from a loop ileostomy to an end ileostomy. I knew going into surgery that my body would be taking quite the beating, and I tried to manage my expectations accordingly. I spent nine days in the hospital post-surgery, no major complications in sight. After a rocky post-op recovery last summer from an ileus and an NG tube, I was elated that this one had gone so smoothly. And so, again, I got a little bit cocky.
The big mistake? I decided to try and expand my diet earlier than I should have. I was craving vegetables and thought that I could have some beets with dinner one night. I woke up the next morning with no output, crampy pain, and a nagging feeling that I’d wind up in the ER. I was right. I’d gotten a pretty major small bowel obstruction and needed my second NG tube. After 72 hours, I had my NG tube removed, but then wound up with an ileus that took more than a week to resolve. So after a surprisingly easy hospital stay the first time, I finally left the hospital after an additional 13-day stay. My body and my mind were both traumatized from that experience, and I’m still working to rebuild the confidence I lost from those two weeks.
It has now been almost four months since my surgery, and I am fighting to make progress every day. I’m back in the gym, working on my basic core strengthening and other rehab exercises. Is it frustrating? Heck yes. I’d just gotten through the rebuilding phase, finally able to do a pull-up, and now I’m back to the bare minimum. But despite this obvious wrinkle in my progress, the last year has proved to me that I’m not the type to let a setback stop me from moving forward. That I’ll never say “I can’t,” unless it’s immediately followed by “for now.” And that even when everything seems to be going wrong, life can surprise you with little blessings like the ability to hike the Grand Canyon or the chance to go canyoneering or the opportunity to say “yes” to marrying your best friend. So although I’ll be putting some of my athletic goals on hold for the next few months, no setback can totally stop me from going anywhere and doing anything.
Written by Molly Atwater.