Every time I sit down to write about my recent surgery, I have a different idea about how I want to convey my surgery and recovery process and the emotions surrounding them. Which makes sense given that every day after surgery feels different. So here are today’s thoughts:

Six weeks ago, I thought that it would be a good idea to have my jpouch removed, my stoma revised for the 5th time, and my recto-vaginal fistula repaired all at once. I guess if I really think about it, I still think it was a good idea. But it was not an easy decision. And it hasn’t been an easy recovery process. 

I avoided having my jpouch removed for 13 years because the idea of that surgery was terrifying and the timing just never seemed right. My symptoms were also never bad enough (to me). But in the last year, I had recurring inflammation and pelvic pain from my de-activated jpouch. And my latest and greatest stoma stopped working, with narrowing and bowel obstructions for 6 months leading up to surgery. It was time.

Surgery Consults

I had three surgery consults before making a final decision on where and when I would have my surgery. I consulted with my local surgeon in Anchorage, an east coast surgeon who is an expert when it comes to jpouches, and a surgeon in Boston. I had my first surgery consult in January with my local surgeon and I felt confident in her plan. Every detail of her approach was specific to me and her understanding of my lifestyle. I truly appreciate her care for me as a whole person.

My second consult was in early February with the jpouch expert. I felt confident in his surgical plan, but he wasn’t the right surgeon for me. Long story short, he told me that I needed to STOP being active. The whole point of this surgery was to improve my quality of life. Taking athletics out of my life would do the opposite. I wanted to tell him that telling me to stop being an athlete would be like telling him to stop being a surgeon. Being active is what brings me joy and is a part of every aspect of my life. Besides worrying about my happiness, I’m also a facts based person. And there was no evidence to substantiate his opinions regarding the impact of athletics on my stoma. Plan number two was off the table.

After my second consult, I took a break from the surgery talks, and escaped to France for a glorious week of skiing in the sunny Alps. It was a much needed break. 

Once I was back from France, I had my third surgery consult. This consult was with my old surgeon in Boston who created my first permanent stoma and did my first stoma revision. Although I hadn’t talked to him in almost 10 years, he knew my history and better understood my personality than surgeon number two. He also offered a unique surgical technique that nobody else had offered. He told me that he wasn’t sure it would solve my stoma issues, but it was worth a shot. 

I ultimately chose to have my surgery in Boston because of the offer of the alternative technique and because I would have more family support during the recovery period. That also left Tyler to close the deal on our new house in Anchorage and move while I was away (Thanks Tyler!).

Preo-op

My surgery was scheduled for April 24th, so I flew to New England on Saturday. Jeanine had flown in a couple weeks prior, so we spent the rainy weekend doing puzzles and hanging out with our parents. Since we couldn’t go hiking, Jeanine had the brilliant idea to go to Planet Fitness on a free trial pass. Being soaked in sweat while working hard on the Stairmaster and lifting weights was just what I needed, knowing that I wouldn’t feel that way for a long time. 

Then it was surgery day. My surgery was at Massachusetts General Hospital in Boston. Interestingly, they actually encourage drinking fluids going into surgery to make sure that you’re hydrated. I tried to time my water consumption with the hour drive in order to avoid peeing my pants on the way to Boston. Luckily, I made it unscathed. My mom, dad, Jeanine and I went to the pre-op waiting area and hung out there for quite a while.

When it was my turn, I was paged, and Jeanine went back to the first pre-op area with me. We were there for a very long time, way beyond my scheduled surgery time. I was happy to have Jeanine to entertain me. My last surgery was during the height of COVID, so I was all alone in the hospital. This experience was much different. We had a lot of laughs. I was told to lay down on the gurney while I waiting, but I opted to enjoy sitting for the last time in what would be a while.  Let me tell you folks, don’t take sitting on your butt for granted. Life is very different in the horizontal world.

Finally, it was time for me to go to the second pre-op area where I would meet with the anesthesiology and surgical teams. It was another long wait because my surgeon’s first surgery of the day was running behind schedule. Once things got moving, I chatted with the nurse anesthetist and surgical residents. Everybody had questions about why I chose to fly all the way from Alaska for surgery. After a long wait, my surgeon came to do the final sign-off. That solidified that I made the right choice. 

It was comforting to see Dr. Hodin who had been a strong ally in the early years of my Crohn’s diagnosis. Years ago, he was one of the first doctors who acknowledged that my opinion regarding my health and my medical choices mattered. He also supported me in a tricky situation when I first moved to Alaska and my bowel became necrotic while I was out hiking. You can listen to that story here. I guess you could say we’ve been through it together. So I had confidence in him despite his being upfront with me that he didn’t know if he’d be able to fix the issue with my stoma. 

Next, I’m going to get into some of the nitty gritty about my surgery and what it’s like to have your anus, vagina, and abdomen operated on at the same time. I’ll tell you, it’s absolutely nothing but fun times (insert east coast sarcasm). I honestly don’t know what order they performed the surgery in, but I’ll start with the stoma revision. 

Surgery Details

Part 1: Stoma Revision

I’ve had my ileostomy since 2013 with two revisions in 2014 and another in 2020. For some reason, my small intestine seems to move around an abnormal amount. There’s no consensus on whether my Crohn’s causes narrowing at my stoma or whether the mechanical issues ultimately leads to my stoma to fail. But since I’m medically managing things well and don’t have any other evidence of Crohn’s, surgery seems to be the only option at this point. For all four of my other stomas, the surgeons have taken the typical approach of creating the stoma. 

For this 5th stoma, Dr. Hodin decided to try an extraperitonal approach where he threaded a few inches of my small intestine into the extraperitoneal space before pulling the bowel through the entire abdominal wall to create the stoma. Most of the literature I read beforehand on this approach discussed it in the context of decreasing risk for hernia with colostomy. I hadn’t seen much about extraperitoneal ileostomy, but my surgeon had performed the technique before. He also tacked my small intestine to my abdominal wall in a few other places to secure it even more. This was all done through an open midline incision. Interestingly, during the surgery, he found very few adhesions in my abdomen, and he speculates that the lack of adhesions has led to my bowel being extra mobile. Just a hypothesis, but an interesting one. 

Part 2: Recto-Vaginal Fistula Repair

I had this fistula for almost as long as I had the jpouch. For those who don’t know, a recto-vaginal fistula is a connection between the rectum and the vagina. When my jpouch was functioning, I had stool passing from my rectum to my vagina. That was unpleasant. For the past ten years, I’ve just had mucus drainage passing through that tract, so it hasn’t really been an issue. But since the jpouch was coming out, the fistula would have to be repaired to decrease my risk for additional complications. When the jpouch was removed, the fistula was repaired and portion of my omentum (omentum flap) was pulled down to fill the space behind my vagina. Not only does the omentum fill space but it helps with tissue healing and regeneration. 

Part 3: Jpouch Excision

Technically my whole surgery was called Abdominoperineal Resection (APR). Typically, this is when the anus, rectum, and sigmoid colon are removed and a permanent end ostomy is created. In my case, I had my colon removed in 2007 and the jpouch created. So my resection was the removal of my jpouch, rectum, and anus, including the internal anal sphincter. Then everything was sewn up, so I have a large perineal incision. Colloquially, I refer to it as “the incision in my butt crack.” Others use the term “Barbie butt” or “Ken butt”because everything is closed up like Barbie dolls.

So there you have it, my three part surgery. Sounds super fun, right?

It actually went very smoothly according to my surgeon and they had booked the operating room for almost double the time they needed. I felt good about that. 

Post-op

After surgery and spending time in the PACU, I was transferred to the floor (White 7). I found it interesting being on the other side of the lift equipment, being transferred from the stretcher to the hospital bed in the ceiling lift, which is what I do a lot of at work. I had a lot of pain immediately. The initial pain was mostly in my vagina and pelvis. My abdominal incision has been the least painful of the entire process. I usually have a habit of trying to tough it out when it comes to pain, but this time around, I decided that I wanted all the pain meds so that I could get myself moving as soon as possible. Unfortunately, I was on bed rest until the next day after surgery. My family was able to come visit though, so that was nice. 

I ended up spending five days in the hospital. There were some pretty tough moments in there. I cried a lot when I couldn’t stand up straight or go on a walk one night because my pain level was too high and my pain meds had been reduced. My ostomy bag kept leaking into my abdominal incision which required the residents to clean out my whole incision which was very painful. But I also had some pretty awesome nurses who were very responsive. I enjoyed chatting about hikes in the White Mountains of New Hampshire and Alaska connections with them. I was able to take one shower during my hospital stay which felt like a huge accomplishment. I made sure to get myself dressed in my own clothes once I was up and moving and I requested a pass to get off the unit so I could go on longer walks and find some sun and different scenery in a nearby hallway. I wasn’t allowed to sit up. So I had to either recline in bed or in the chair. And my surgeon stressed that I should never be on a hard surface nor should I sit on a donut cushion, so I used (and continue to use) a cushion on every surface. 

I looked forward to my family visiting every day. Andrea came down with my nephew one day and the family took turns visiting and taking him out to play when he had too much of the hospital room.

Once I was eating and my pain was a little better controlled, it was time to head home. We figured out how to adjust the seat in the truck to accommodate my activity restrictions. The ride home was better than expected. 

I spent the next 4 weeks recovering in New England, going from my parents’ house in New Hampshire to Andrea’s house in Maine. Those weeks were also not easy. I continued to have a lot of pelvic pain and my tolerance to upright activity was limited. I eventually progressed to taking walks that were 2 miles at a maximum. But even that could be quite painful at times. We snuck in a beach day and found some creative ways for me to recline and enjoy my time. All I can say is thank goodness for couches and reclining beach chairs (I don’t like to be in bed during the day). 

Kate came for a visit one week and that was fun to show her around the area. It was also a welcome distraction from my pain and nice to still feel connected to my Alaska people. I feel pretty lucky to have a friend who will fly across the country to hang out and do nothing for a week. 

When I was three weeks out from surgery, I had my follow-up with my surgeon. He was pleased with how my stoma looked so far. I’m cautiously optimistic because it always looks good at this point. My perineal incision is not infected and seemingly healing well, but he isn’t sure why I still have so much drainage. Even at this point in time (7 weeks out), I still have drainage and some bleeding, so we’ll have to monitor that. Some individuals with Crohn’s continue to have drainage from chronic perineal sinuses, but it seems too early to say if that’s what’s going on. 

After my follow-up, I was cleared to return to Alaska. I’m supposed to avoid sitting as much as possible with continued use of my cushion. I still having lifting/pulling/pushing restrictions. I’m not supposed to do anything strenuous right now and I’m supposed to avoid any bouncing or jostling. So my summer is going to involve a lot of walking, Physical Therapy, and monitoring my symptoms.

I’m incredibly grateful for my support system as a whole. Leaving my family was the worst part of coming back to Alaska. My family is the best. Being able to spend so much time with them was the silver lining to the whole surgery experience. I’m also thankful for my support system back home in Alaska. Since I’ve been home, friends have gone walking with me every day. Tyler put a lot of work into moving and supporting me from afar and since being home. He’s also the best. 

I’m hopeful things continue to heal. There are still a lot of unknowns. Having a jpouch removed is not for the faint of heart. It was hard to decide to have surgery when I felt like I was strong and doing so well physically. My goal is to get back out into the mountains by the end of the summer, but I’m taking things slow this time. I need this surgery to work out without complications. I have big goals on the horizon.