^That photo above shows me when I was at my strongest last fall before things started to go downhill.

*** There will be quite a few stoma/incision/wound/poop photos***

When Tyler dropped me off at the hospital on the day of my surgery on April 27th, 2020, he said he felt like he was dropping me off at the airport. I agreed as we said our goodbyes and I set off for the front door with my big green roller bag. I was on my own as I entered the hospital. 

Now, I’ll back up a month or so to explain what landed me in this situation of having a major surgery during the coronavirus pandemic. 

I spent the majority of 2019 working with a pelvic floor therapist and a trainer to decrease my bowel obstructions and to gain strength. By the fall, I was feeling stronger than I had in the past 10 or so years with my Crohn’s. I started off ski season in October/November feeling like it was my year to really improve my skiing and push my limits. I had a scope of my ileum and of my j-pouch in November, where my GI doctor said there was some Crohn’s by my stoma, but he didn’t make any medication changes and didn’t appear concerned. I then went on a a fun climbing trip to Red Rocks in December with my friend Celine and we enjoyed the warm desert sun (and rain). 

Toward the end of December, I felt something start to shift. I didn’t feel as energized, but I told myself that I was just missing the desert and traveling after a trip home to see family for the holidays. Throughout January, I continued to feel my energy dwindling, as I tried to get in some long nordic ski days in preparation for the Little Su 50K race. I saw my GI doctor again, and he increased my Cimzia dose and instructed me to alternate hydrocortisone and mesalamine enemas, hoping that it would calm down my Crohn’s and help with the situation. I also sought out a new primary care doctor who did some lab work, and found that my iron and testosterone were low, so she ordered iron infusions and put me on some supplements. I was hopeful that the iron would help!

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At the very beginning of February, I participated in my first Skimo race, which was a mini race with laps up and down Hilltop Ski Area. I pushed it really hard at the race, to the point where I felt like my heart was going to explode, but it felt exhilarating to have a goal and work my body hard. I felt fine the weekend after the race, but that next week, I crashed. I had no energy and would come home from work completely exhausted. Things got a little better with the iron infusions, and I was able to complete the Little Su 50K in the middle of February. 

From February to March, I continued to hang in there in this unmotivated, tired space. I was hopeful that my medication changes would fix things, but I didn’t seem to be getting better. Finally, in March, I stopped being able to eat food without getting a bowel obstruction. This didn’t make any sense, since I’d gone from June 2019- December 2019 without a bowel obstruction. I went back to see my GI doctor who ordered an MRI. The MRI came back showing continued narrowing by my stoma and bowel distention. My GI then gave me 4 options. The last of which was surgery. Prior to seeing my GI doctor, I had convinced myself that I was going to need surgery and started thinking about flying to NY to see the top colorectal surgeon who works with jpouch patients. I figured if I was going to have a stoma revision, I might as well just have one big surgery, and have my jpouch removed at the same time (I’ll have to talk more about that another time). Anyway, when my GI gave me 4 options, I was relieved to hear that surgery was his 4th choice, and that it didn’t sound like I would need surgery any time soon. So I selected the option of taking Prednisone for a month to really knock out the small amount of Crohn’s near my stoma that appeared to be causing the blockages. 

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I was feeling pretty good once I started Prednisone (a false sense of security), and was able to eat a little bit of food without getting a blockage. I then decided to really try to kick Crohn’s in the butt and combine the Prednisone with an elemental diet (elemental diets are proven to be just as effective as Prednisone at putting Crohn’s into remission). Once I started the elemental diet, my bloating went down. I felt like my blockage was resolving. 

Now, I also forgot to mention that around this time, my GI doctor decided that it was not safe for me to be working in the hospital because of COVID-19 and my Crohn’s flare/medications, so I was placed on disability leave from work about the same time I started the Prednisone. The conversation went something like me saying, “I heard we have one case of coronavirus in the hospital. When do you want me to go on leave?” My doctor simply responded, “NOW.” That was that, I had all the time in the world to focus on my health and I was feeling hopeful. I did not see surgery in my future. 

Then I started to develop a different pain next to my stoma. It wasn’t the type of pain I was used to. It was more of a burning, rather than a backed up feeling. So, I contacted my GI doctor again, asking him if he had noticed a hernia or an abscess on the MRI film. He had the radiologist look back at the images, and she did see an area of inflammation near my stoma. Again, he didn’t appear too concerned. To ease my own mind, I decided to have my imaging sent to my surgeon here in Anchorage. I immediately received a phone call from her where she started off, “I think we have to take you to the OR.” I was taken aback. I thought things were going okay. She asked me to come into her office as soon as possible. Once I arrived, she asked if I had seen my MRI images and that she thought I should. She said my bowel was distended to 10cm when the MRI was taken 3 weeks prior. She also went on to state that 10cm is dangerous for a large intestine, so when a small interesting in 10cm, there is extreme risk for perforation. I decided to take a look at the image myself, and was shocked to see a giant small intestine taking up my entire pelvic cavity. It did not look good. 

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I was still holding onto a sliver of hope that my elemental diet would shrink my intestine back down to a normal size, but I was concerned about the burning pain near my stoma. Before just going ahead with surgery, I asked for an updated MRI. My surgeon ordered an MRI and an ultrasound, as she suspected I had an abscess near my stoma. She came up with a complex plan to perform the stoma revision in the outpatient setting and send me directly home because she didn’t want me to be exposed to coronavirus in the hospital. She said that pain control would be the issue and that the plan might fail and I might end up in the hospital anyway. Basically what I heard is if anyone can do this, it’s you. But it still didn’t sound like a pleasant plan. As I left her office, I felt like she was my own personal body guard, protecting me from the coronavirus by keeping me away from everyone. She seemed really worried about me getting the virus and being worse off. 

That same day, I had the imaging done, and waited over the weekend to hear back about my results. In the meantime, the burning pain turned into an unbearable pain. I felt as though I was being stabbed from the inside out every day. I was a mess. I couldn’t sleep. I could hardly move. On the worst day of my pain, I had a Telehealth appointment with my surgeon where she told me that we would have to go ahead with surgery because a tract had opened up next to my stoma. She was hoping to do it the following week, and that because I did have a Phlegmon (fistula type tract), my surgery would have to be performed at the hospital. I was hoping for 2 more weeks (to allow my bowel more time to shrink and to be off Prednisone completely). She agreed to let me try waiting it out for the two weeks. She outlined a few options for surgery. Her first choice being laparoscopic surgery and just revising the stoma in place. Second choice was moving the stoma to the left side and performing the surgery laparoscopically, Third choice was open surgery with any of the above mentioned options. And then last choice was moving the stoma up higher above the infection on the right. Worst case scenario was not being able to do anything. Every option felt grim. And nothing would be known until she was in there looking at my bowel and abdominal wall.  

As I was hanging up the phone, I finally broke down. Everything about the surgery sounded so complicated, and as if I would never return to an active lifestyle. I couldn’t stop crying as I envisioned my entire life and everything that I find enjoyable ending. No more backpacking or expeditions or traveling. I didn’t see how being active again would ever happen. 

The shock slowly passed. At first, with the pain, I wasn’t sure I could make it the two weeks. Slowly, my pain faded and I was able to move my body more and be in a better space to prepare for surgery. After changing antibiotics, I made it the 2 weeks to my surgery date. I was a little more hopeful that I was in less pain and that my continued perseverance with my elemental diet would shrink my bowel enough that my new stoma opening would be smaller and decrease my risk for hernias. I also had an appointment with my pelvic floor therapist to discuss post-op exercises and a plan of action for scar tissue mobilization. I was feeling a little more optimistic.

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Prior to surgery, I was required to have a COVID test, so Tyler and I went to a Providence clinic the Sunday before my surgery. It was an interesting experience for medical testing to be performed through a car window, but it seemed to be a pretty smooth process, and my test result came back negative. 

Finally, all of this brought me to the curb of the hospital at 6am on the day of my surgery. After saying goodbye to Tyler, I headed to the front door with a line of others, had my temperature checked, was handed a face mask, and stood in a cue (like the airport), 6’ away from others, waiting to be checked in. After being checked in, I sat in the new designated waiting area until I was escorted back to the pre-op area by my nurse. It was explained to me how everything was sterilized, I answered the coronavirus screening questions, underwent a chest x-ray to ensure that I did not have the virus, and I was prepped for surgery. 

Finally, I was wheeled back into the OR where everyone had n95 masks and PPE, and off to sleep I went. I woke up in the PACU, and felt like I could barely speak. For some reason, being intubated affected me more this time. But I heard the good news that my surgeon had been able to relocate my stoma to my left side, and the she had removed a small portion of my small intestine and made a small midline incision, so that made me feel better. She did say that my infection had been quite extensive. After waiting a while and waking up more, I was finally given a bed on the 4th floor. I felt great the day of the surgery because of a TAPP block (abdmoninal nerve block). But once that wore off it took a bit to get pain under control to where I didn’t required oxycodone every 3 hours to comfortably lie in bed. I also felt like I had more difficulty with pelvic pain and bladder incontinence initially after surgery (I’ve never had a TAPP block, so it could have been the cause). I did later find out that the infection in my pelvis had spread over to a nerve bundle on my right side which could have caused some of the pain/issues (more to be discussed on that topic later). 

Honestly, being alone in the hospital for 4 days wasn’t too bad. I had just moved to Alaska at the time of my last surgery, so I was essentially alone. At least when I was out and about on walks this time, I ran into coworkers who were working on the floor. The only difference was that I had to wear a mask when walking in the halls and all caregivers had to wear masks and gloves when helping me in the room. It was lonely at times, but I used FaceTime to keep in touch with family. Unfortunately, my surgeon wasn’t able to see me in the hospital after surgery because of COVID restrictions, so one of the other partners in her practice followed up with me and was able to answer some of my questions. On the day of discharge, Tyler was able to pull up to the door, and I was wheeled out of the hospital. Freedom and fresh air felt nice.

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I’m a week and a half out from surgery now, and feeling well. I was a lazy blob for the first week or so, but mustered up the strength to do a little walking in the neighborhood. My surgeon took out my staples a couple of days ago, and said I’m healing well. I have to pack my wound on the right for the time being until it closes up. Unless my infection returns, my surgeon doesn’t want to see me in the office again to decrease my risk for getting coronavirus. She also informed me that she took out 45cm of small intestine (the distended and Crohn’s portion) and that I have 345 cm left (that was not the ‘small’ amount I was expecting). I’m not on any medication right now, except the occasional Tylenol. I’ve been increasing my walking with social distancing friend walks, and did my first 5 mile walk in the woods today! My energy definitely waxes and wanes, and I’m working on increasing my intake because I have 20lbs to gain to get back to reach my normal weight, and start putting muscle back on.

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Best of all, I can now envision my future full of adventure in the mountains and elsewhere. I know I will get there. It will just take time.