Inflamed, Yet Untamed: Justin’s Crohn’s Story Part V

Many people are already aware about Justin’s Crohn’s disease, but we’ve been fairly quiet about it on the blog for the past 4 years because there hasn’t been much to say! His doctors proclaimed he was in remission in April 2021, he’s been on a maintenance infusion since 2018 and he continues to do all he can to keep himself healthy, including evolving his diet to regulate his system and keep inflammation low, staying physically active, getting enough sleep and keeping stress levels low. Except for the occasional stomach aches and poop emergencies, Crohn’s has turned into an invisible disease once again. Justin is an amazing inspiration to many, as his energy remains boundless and he hikes more in a week (for work) than I do in a month!

All that aside, we had a Crohn’s-related blip this month, and Justin unfortunately just spent 12 days in the hospital!! Previous posts live here: Part I, Part II, Part III and Part IV.

On Sunday, Sept. 4, Justin was out for a hike with clients (actually an awesome family he spent several days with). The night before, he felt pretty bloated, but we attributed that to heavy restaurant eating through the weekend. But he hiked 5.5 miles with the group, shuttled them on a rafting trip, washed his work vehicle, hardly ate anything that day and came home at 6:30pm. 

He woke several times Sunday night in excruciating pain, and though we have the ambulance plan that could drive him the ~2 hours to the Fairbanks Hospital, we both stupidly decided to wait until morning. By the time we arrived to the hospital, he had thrown up twice, which was definitely the sign of a bowel obstruction. 

Thankfully the emergency room was not crowded (for being the ONLY hospital in Fairbanks, and Labor Day weekend), and he was admitted pretty quickly. We met with a general surgeon who confirmed he had a blockage in his intestines at the site where the intestines had been reconnected during his 2018 surgery. She was hopeful resting the bowel with no eating would resolve the blockage, but warned us surgery might be the only answer. 

We had been so out of practice for hospital stays, especially ones that were 2 hours from home. We brought Justin’s toothbrush, but not mine, his laptop plug, but not his computer and I brought no changes of clothes for me, but yes for him (he inevitably lives in a hospital gown while in the hospital, so his clothing was unnecessary). I also found a headlight in our to-go bag, so it’s pretty clear we weren’t thinking straight. Thankfully, we had friends from Healy who rooted through our drawers and delivered supplies on multiple occasions during our hospital stay. We barely had enough time to notify anyone. In the past, I’ve always used Caring Bridge to keep everyone updated, but this escalated quickly.

After waiting 2 full days resting his bowels, there was no “progression” (AKA tooting and pooping). Justin even had an NG tube (AKA, elephant nose) to suck out most of what was in his stomach, but he was still in loads of pain. 

On Wednesday, Sept. 7, Justin had his fourth surgery in his life. It ended up lasting longer than they anticipated (6 hours!), and more invasive. The general surgeon started with 2 hours of laprascopic, but then had to cut him open to get in his abdomen more. The good news is that it wasn’t his Crohn’s or inflammation of his intestines causing a blockage. Instead, it was scar tissue (from his previous 3 surgeries). The surgeon’s summary: I’ve never removed more scar tissue from someone’s abdomen. Your connection site was narrowed down to a single finger tip size from all the scar tissue adhesions, so no wonder there was nothing passing through. How did you live with that pain??? 

For the next several days, both of our lives stayed on hold. It was all about the waiting game (for toots & poops). Justin became the star hospital hall walker on the floor to try to get things moving, and we cleaned up his beard and showered him. If there’s any silver lining, I’ve never had a cleaner inbox and I’ve completed a self-created “Taste of Fairbanks” tour. 

The anxiety behind “waiting for a poop” is really detrimental. Justin’s lacksidasical demeanor really endures the test. This whole time, he is pretty much sustaining on ice chips (and IV fluids/vitamins). He also kept having IV challenges where the line gets compromised causing great pain, and they have to move it. But getting poked and prodded to find another good vein … not hard to imagine that added stress. We received all sorts of encouraging messages. Some of my favorites … Paul said: “I’ve never wished a friend a shitty day before. You’re the first Justin.” (Get it?) Pat said: “He might be more inclined to shit if you take him outside and let him squat against a tree.” Jason said: “Come on Justin, you’re the best pooper I know!” Clara said: “We have been eating beans and dancing. Any luck?” Donna said: “Never have I so looked forward to someone else’s farts.” Aunt Pat said: “Justin is a mountain climber — he’ll scale this one too.”

Finally on Day 10 in the hospital, and day 7 post-surgery, he pooped! They put him on a full liquid diet, but things still moved slowly over the next 24 hours. Then they put him on a soft food diet, and discharged him on Day 12 in the hospital (day 9 post surgery). It felt great to be able to go home, although Justin still have a long and slow road to recovery. He lost at least 10 pounds, and tons of strength. Thankfully, we are in our “off season” for work, which means lots of computer time. 

His pain is still pretty high and his energy levels are really low. But I am confident he will make a full comeback from yet another traumatic Crohn’s-related event. Because he is Justin, and he is an amazing warrior!