After a much needed hiatus during and after my trip to the Mayo Clinic, I finally have the gumption to start blogging again. At least for the most part. I will admit I probably won’t be updating as much as I used to, due to the lack of energy, and — to be honest — inspiration. Life is just too hectic, and I’m finding I’d rather be spending time doing other things lately than blogging, especially since I sort of feel the same way I did a year ago.
That being said – if any of you readers have a topic you’d like to see from me, please let me know.
Anyhoo, let me get back on the blogging train by giving you the rundown of what took place in Rochester, Minn. at the Mayo Clinic over the course of two weeks (Feb. 27 through March 13). I warn you all now — this will be a very long post.
And before I forget — just a warning there will likely be some semi-graphic photos, so be prepared for that.
The trip to Minnesota is a long one, as you can imagine. I traveled there with Justin and both of my parents. The first two days were scheduled as testing and consultation days, so I underwent an MRE, blood work, and a fistulagram, then sat down with my (and Justin’s!) PA-C, Shayla, and my surgeon, Dr. Nelson. Together, they went over my imaging and said the fistulagram showed that the tracts are spiderwebbing throughout my abdomen, with one main tract connecting to my sigmoid colon (near the end of the colon), and another tract connecting with my small bowel where my previous surgery in 2016 took place.
Part of this was a surprise: never before have I had issues/disease in my colon. Also, the fistula was the main reason I had struggled gaining weight since the 2016 surgery. It was basically funneling all of the nutrients away from where they get absorbed into my body and pretty much to the end of my colon. Surgery, Dr. Nelson said, was necessary to fix the problem and any other issue she may encounter while exploring the rest of my insides. She would need to resect the area of sigmoid colon where the fistula ended, and also the area where it connected to my small bowel. Because imaging scans can only show so much, Dr. Nelson also said she may need to perform a more extensive surgery depending on the condition of my gut. One of these possibilities was having to create a temporary ostomy, but she believed the probability was low based on the knowledge she already had.
Trusting in her and Shayla’s expertise and confidence in a successful surgery, I did not hesitate to sign the consent paperwork.
On March 1st we arrived at the hospital, I used the antiseptic wipes to clean myself off and changed into a gown, had an IV inserted, and was prepped by a nurse. Justin was in the prep room with me, and we had a surprise as the stoma nurse came in to mark spots on my abdomen where to best place an ostomy if Dr. Nelson needed to create one. It was Laurie, the same stoma nurse who oversaw Justin when he had his colon removed at Mayo in 2015! She recognized us too, so there was a short, happy reunion before I was being ushered onto a stretcher that would take me into a pre-operative waiting room.
Some short goodbyes to my family, a thumbs up, and I was whisked away into the depths of the hospital, where I was visited by a few nurses and the anesthesiologist who told me more about what would happen in the OR. After an hour, it was time.
If you’ve ever had surgery, being wheeled into the OR is a strange experience. Everything is illuminated, white, sterile. It’s almost alien. Everyone in the room is covered from head to toe save for their eyes, and the air has a buzz of activity, almost like a prepared tension. I was transferred to the operating table and greeted by a few of Dr. Nelson’s female team members, and then Dr. Nelson herself, who reassured me everything was going to go well and I’ll be back with family before I know it.
She was right, of course, but for Justin and my parents it was about half of a full day. Surgery itself ended up taking 7 hours, and they didn’t see me until a few hours afterward, and I know it was late when I woke up in the hospital room. I had more IVs in me than when I went into surgery, a catheter, and an NG tube.
The following day I don’t remember much except being in a lot of pain. They eventually hooked me up to a PCA, where I could hit a button every 10 minutes or so and pain meds would be delivered through my IV. This also knocked me out, so that entire day I was comatose, but I remember in a state of “twilight” where I woke up in a ton of pain and didn’t know where I was, so I had a mini freak out. Fortunately, Justin has spent the night in the room, heard me, and was there to tell me to hit my pain button. Right back out I went.
Post-Op and Recovery
Instead of giving details in strict chronological order from here on out, I’ll provide details of what took place throughout the next week.
When I finally become coherent enough to understand the world around me, I came to realize what I was told would be unlikely during surgery had actually happened. I had a bag on the left side of my abdomen. I was definitely surprised, and Justin explained the scenario to me:
Basically when Dr. Nelson and her team saw inside my abdomen, it looked like a bomb had gone off. My small bowel was folded in on itself and was matted together, and apparently I had a small perforation but the way my intestine was laying on itself helped block anything from leaking out too much. Justin said he received two phone calls from Dr. Nelson while in surgery, one where she said something like, “I’m honestly not sure how she’s alive considering how poor she looks inside. We have our work cut out for us, but she’s in good hands.”
They removed about a foot of the jejunum area of the small bowel (where I had the problems last time), and about a foot of the sigmoid colon where the fistula was connecting to it. To allow a better chance for that area to heal, Dr. Nelson created a temporary colostomy. They recommend me having it for at least one full year before discussing possible take down.
It might shock some of you to know that having a new ostomy didn’t create more than a reaction of disappointment. But because Justin had a temporary ileostomy, and then a permanent ileostomy since 2014/2015, I’m familiar with and knowledgeable about everything that has to do with how they generally work, the supplies needed, and how to use the supplies. Going into surgery, I knew I could handle it if I ended up with a bag.
Back to recovery. In addition to my pain pump, I was given antibiotics, magnesium, and ended up having a blood transfusion along the way. I made sure to walk a few times each day, which was rough at first, but became easier each time I paced the halls. The NG tube was the largest annoyance, because it really irritated my throat, it was hard to move around without it being tugged on, and I wasn’t able to eat while it was in (obviously). I also ended up having a PICC line placed so they could administer TPN and lipids for extra nutrition, and draw blood for lab work since my veins are tiny and were wearing out from so many initial and replacement IV pokes.
I had a variety of fantastic, patient nurses on the floor who took very good care of me and were always kind. And with that came another surprise. Back when Justin had his permanent ileostomy created, he had a wonderful nurse named Mariah a few nights during his recovery. She was great, but mostly memorable because she also has Crohn’s Disease and the three of us connected that way. Justin and I had always wondered if she was still around, but doubted it. We were proved wrong when she walked into my room for her shift! She admitted she didn’t remember us, but we didn’t expect her to, as nurses take care of hundreds of people every year and cannot be expected to recall every single patient. Even so, it was a comfort, and we knew we could rest easy with her around.
Every few days Laurie, the stoma nurse would come around to check in on everything, and she would go over options of ostomy bags, pros and cons of each, and other ostomy care products. We also changed my bag a couple of times so I could learn a bit more about the process and how to take care of my skin around the site which can easily get irritated from not being able to breathe and, of course, stool leaking out. It’s a very odd thing to touch a part of your body that’s supposed to be on the inside.
What we were all waiting on was my bowels to “wake up,” or start moving stool through so I saw output in the bag. This takes time, though more time for someone with a colostomy, since it takes longer for stool to reach the end. However, with a week after surgery under my belt with no activity, my surgical team decided to try and stimulate some movement.
The first procedure to try is irrigation of the bowel. This is where a nurse attaches a very long bag (you can see it’s almost as long as my leg in the photo below) around the stoma, and also funnels water into it, which the colon then will flush out, along with stool. From there it’s hoped the colon will start to regulate bowel movements. The irrigation process did produce some stool output right away, but wasn’t continuous.
The next option was having a CT scan performed, which happened the next morning. I’m not too clear on how this helps, especially since I couldn’t drink any contrast due to the NG tube situation. Usually CT scans are a walk in the park, but I was slightly nervous receiving IV contrast during the test because at this point my veins were so shot from being poked so much they were pretty much not having it anymore. The one IV I had left was with a very small catheter, and hoped it wouldn’t be an issue with Mayo Clinic’s pressurized injection system for IV contrast. Unfortunately, my fears were correct and there was too much pressure going into the IV, which resulted in the IV blowing and contrast getting into both vein and tissue. So all the sudden I felt like the skin on my arm was being ripped off and the scan had to be stopped while I lay there sobbing as the attending nurses and radiologists tried to comfort me. After the pain subsided enough to where it was manageable (which was still about a 6 or 7 out of 10), they continued the scan as fast as possible.
At that point, it had been a week and a day since surgery, and no change in sight. I was getting stir crazy and emotional, as memories from my 2016 hospital stay still haunted me. Although my pain was decreasing significantly and I barely needed to hit my button, I still wasn’t able to eat, was extremely bored, was confined to my floor’s hallways, and was increasingly anxious. The awful CT scan experience put a dark cloud over the entire day, and my surgical team had no more options for me besides waiting.
But good news was right around the corner. That same night, output started and continued. And from there, everything happened quickly. The next day, my NG tube came out and I was allowed a liquid diet, then progressed to soft foods. Two days later and still feeling great, my PICC line was removed, was finally released and received the OK from Shayla to travel home.
It’s been more than a month since surgery, and all things health related have been positive. I’m on my way to my normal weight for the first time in nearly two years and I’m feeling stronger because of it. I’m back on a standard diet, and though I’m cautious about some foods due to the ostomy, I’m not finding many issues. I’m still receiving Entyvio infusions, and most of my Crohn’s symptoms are non-existent. Living with an ostomy is definitely a change and a learning experience, and sometimes not a pleasant one, but manageable. In most cases, someone passing me on the street wouldn’t even know I had a bag.
I’m extremely thankful to my team at Mayo and what they’ve done for me, even though to some it might seem extreme. I’ll cross that bridge when I get there, but I do hope my body allows me to become re-connected next year. Until then, all I can do is make the most of the situation I’m in!
—Some photos by Justin McKee—