Why'd You Have to Go and Make Things So Complicated? The Story of the Angry Guts

Well well well, back at it again with the ER visits. The ol’ routine is getting tired at this point; CT scan, tube down my nose, no eating or drinking, the whole shebang. Back in October was the first time I got to know this regimen so well. Before that first hospital stint, I’d never even spent the night in a hospital for me or anyone else. It was surreal and scary, but of course had some novelty to offer as a first-time experience.

That time, I ended up diagnosed with a small intestine obstruction. This occurred just after my first round of chemo. I had sort of the perfect storm going on – chemo brought down white blood counts, while I had a minor, otherwise easily-treatable obstruction (aka blockage) that made getting anything down my digestive tract impossible an incredibly painful.

The October incident actually came on rather slow, and was just a reminder of a similar, though much more minor, version of pain I’d had several times before in life. In years past, I’d felt this distinct pain and told friends and family it felt like I’d swallowed poison. Luckily, every other incident of the pain I’d had just seemed to work itself out. This time, we suspect, my body wasn’t able to fight it off like normal because of chemo. During that occurrence’s treatment, we did exactly as I described at the beginning of this post.

I came in with no clue the cause of such intense pain, but was quickly diagnosed via a scan, then had an NG tube inserted to remove any pressure my stomach’s contents were putting on my intestine to avoid a deeper blockage or a rupture. These steps, along with bowel rest (bowel in this sense encompasses the entire digestive system,) helped resolve that obstruction. That time, I had to remain in the hospital for 4 days after the blockage was fixed as my white blood count (WBC) was too low for me to safely go home.

After this incident, I thought I was through the woods with regard to blockages. I’d had no more before my surgery, and it introduced a new element into my chemo regimen. Now, every time I get disconnected on day 3, I also get a shot called Neulasta, which helps keep my WBC high and healthy as I recover from that particular chemo treatment. So since then, I’ve felt more confident and safe after chemo treatments, I was taken aback when I felt that exact same pain stinging through my stomach on March 12th after the first day of my second round of post-surgical or “cleanup” chemo.

I had been extremely careful with what I’d been eating anyway, thanks to my new ileostomy, which is notoriously easy to block, so it was that much more surprising to so easily recognize that terrible pain. I took all the meds I had on hand, timed the periods between painful bouts, and finally agreed to go into the hospital after nothing treated it. I got to the ER knowing, unfortunately, exactly what was going on, but boy I was in for a surprise.

They got to work with the routine. The CT scan affirmed exactly what I’d suspected: another small intestine obstruction and the same regimen to treat it. You can see it here!

I moved forward with the DREADED NG tube, seriously reduced any food or liquid intake, and waited. But days later, the obstruction hadn’t gone anywhere. Although a small bowel follow through X-ray series showed that the blockage had – at least in some moment in time – been resolved, the proof was in the pudding. Every time my nurses attempted to clamp my NG tube to let my stomach take over, I got violently ill. Like...more ill than I’d ever been in my life. When the tube gets clamped, it gives the stomach and intestines back their control. Normally, if the blockage is resolved, things just move along like normal at this stage, and it’s a first step toward going home, but none of that happened this time. I felt extremely close to death during the times the tube was clamped, and it was scary and frustrating to not have any answers.

A note on the NG tube: I think I’ve talked briefly about it here before, but as a refresher, the NG tube goes in through your nose and extends all the way to the stomach. Having it placed is incredibly uncomfortable. It involves a lot of forced swallowing, while resisting gagging and choking. When I had one in October, I had it for less than a day and thought that was a long time. I had no idea that this go-around, I’d have it for more than a week straight. By day three, my throat and nose were both completely raw and inflamed. Here’s a video of me having the tube placed.

2019 X-rays are done right in your room, and they’re like the chillest thing ever.

Preparing to have the NG tube placed. AKA contemplating how much I REALLY need functioning intestines.

Accepting my fate. The fate of the tube. This hair/headband combo make me look like Willie Nelson. 

For several days, my team assumed my stomach was just taking its sweet time to come back to life. But finally, on day 6, they ordered a new CT scan to see what was possibly going on. This scan was surprising, and showed that I indeed still had the blockage, and it had actually gotten worse. The success of the X-ray series was odd, but must have been a fluke. Next, the surgeon I’d been consulting with came to talk to me. Until this point, all talk of surgery had been relatively far off – everyone agreed that these blockages normally don’t need to be treated with surgery, so this would probably be no different.

The very best hospital attendant, as always.

However, at this point, we’d run out of options. I hadn’t eaten anything for a week, and was getting only paltry amounts of calories from tiny sips of juice. My surgeon – who I’ve now come to absolutely love – said it was likely that scar tissue from my big surgery in January had formed adhesions around some of my small intestine, causing the blockage. The only fix for this was surgery. I was terrified, but ready to get it fixed.

Then came the most complicated step. I requested my local surgeon contact the MDA surgeon who’d performed the big resection surgery before we moved forward. I wasn’t expecting him to react the way he did – I just assumed that if there were any outlying factors with my case, or he had any advice for my new surgeon, that this would be the time he’d share it.

He did not say this….he said plainly: “don’t do the surgery.”

This was a horrifying prospect for me. I knew that whatever was happening inside of me would not be resolved without surgery, but he was adamant that performing any surgery that close to a chemo session was too dangerous. Typically, there is a required one-month wait from end of chemo to any surgery. Emergency surgery is obviously necessary at times, but this was sort of an “on the fence” situation.

Technically, I was stable. Dr. Chang, the MDA surgeon had heard this, and firmly suggested I wait “indefinitely or at least 3 weeks” before proceeding with surgery to mitigate the risks which included infection, hernia or an unsuccessful operation. What he didn’t see was how absolutely miserable I’d become. I was starving in every way. I had no answers as to what was wrong. My nose and throat were in severe pain due to the NG tube, which had been in for over a week at this point. The thought of spending three more weeks stuck to a hospital bed and a vacuum down my throat was too much to even imagine for a moment.

I begged Dr. Lainez, the local surgeon, to please take my quality of life into account in deciding whether to operate. Ultimately, he agreed with me, and it’s a really good thing he did.

When he got to my insides with the laparoscopic tools, he saw that the real problem was nothing we’d suspected at all.

During my resection surgery, I’d had several tiny blood vessel clips placed. This is common practice. Usually, the tissue grows over these clips smoothly, and they’re never thought of again. This time, though, my intestine instead got snagged on the clips, and had been flipped over before finally healing in a kinked position.

Images from surgery. In the lower left corner, you can see the tiny white blood vessel clips, with bloodied intestinal tissue after having been cut away from my abdominal wall.

This was easily fixed for good with surgery. I woke up to the good news that everything had gone well, and learned that choosing surgery had unequivocally been the right move in the situation, despite the risks. Had I let it continue, my intestine would probably eventually have ruptured, causing a much worse problem. I respect and greatly admire my MDA surgeon, but I was very glad I’d gone against his advice in this very important scenario.

Home!

Finally, after 12 days in the hospital, I was released! It felt INCREDIBLE to be free and back in the real world. I was very worn out and beaten down though, so recovery was again frustrating and slow. During the days right out of the hospital, I began to feel a vague but intense pain in my upper abdomen/lower chest area. My oncologist ordered a chest CT scan to ensure it was not a blood clot in my chest, which checked out fine.

Slowly but surely, this pain became more and more intense. While by description, it sounds like the same pain as the blockages, this was very different, and a pain I’d never felt before.

Before I knew it, I was back in the ER, just 10 days after I’d escaped it. I absolutely dreaded going back, and seriously considered my options of just letting whatever was happening happen out of dread of the hospital. But alas, back I went, expecting pretty much the same ordeal as the past two times, but confused by the starkly different pain.

Back In the Bed

Once I’d gotten checked in, I realized this was a very different situation. There was no talk of an NG tube, and the immediate CT scan showed I indeed had no blockage. There was no immediate dispensing of pain medication (this was indescribably awful), there was no obvious suspicion of what it might be.

Don’t let the eyes fool you, it’s the most amazing, sweet, rad beautiful rainbow nurse in the world!

It was a blur from there, but I was at least happy to be almost immediately transferred upstairs to the 6th floor and my favorite nurses in the universe. During the first night, I was inexplicably given an ultrasound of my belly. I later learned this was due to suspected gallbladder involvement, which was then ruled out.

For the next few days, I ate and drank nothing, and got no answers. Finally, Dr. Lainez marched in one day and diagnosed me with pancreatitis. It made perfect sense. Although, as he said, it’s a disease that mostly affects “homeless alcoholics,” there was a good reason for me to potentially have an acute case: my TPN.

The TPN was a liquid form of food given to me during the last few days of my first stay, via IV. Because it’s so rich and fat-heavy, it can be hard on the body. My body, which had no nutrition for over a week, was suddenly given a ton of nutrients, many of them in lipid form. The pancreas handles fats, (among many other functions,) so it would make sense that such a shock to my system would have been badly recieved by my poor pancreas.

Reading about people who’d suffered from it, I couldn’t believe how accurately they described it. It was a deep, hot pain that could only be described as feeling like someone with a fiery sword was trying to stab their way out of my abdomen. I thought I’d felt some of the worst pain a human could feel with the blockages, but this was on a completely new plane.

I was at the pain’s mercy. It could break me down and put me literally flat on the floor in just seconds. It came on quickly and kept coming in waves and cycles. Usually, the pain meds were enough to keep it away, but as I moved toward answers, I had to steadily reduce pain meds, which was scary and indescribably painful.

During all this, another doctor, a gastroenterologist at the hospital, also joined my case. However, he had a very different opinion. In his view, I didn’t have pancreatitis. There was no way – pancreatitis is primarily diagnosed via a blood count of your lipase levels. On the first day it was measured, mine was a ~650. The next day, I received the good news that they’d fallen to below 170. This sounded about right to me, a drop that coincided with my treatment and pain level that day. But according to my GI doc, lipase levels in the 600s simply don’t constitute pancreatitis. He told me in other pancreatitis cases, lipase levels are commonly far over 1000, even often in the tens of thousands. He was stumped and so was I.

So for the next 8 days, I stayed in that hospital bed with my little pain button, simply existing. It was unquestionably one of the darkest periods of my life. The pain, even when well controlled, was like nothing I’d ever imagined. The sadness, especially after having JUST escaped my last hospital visit, was overwhelming. I had no desire to busy myself, work, watch TV, or be any sort of productive.

Finally, I had an endoscopy and an ileoscopy. This meant the doctors would send a tiny camera down my throat into my stomach, and into my ileostomy to see my intestine. The procedure went perfectly, and nothing was found. Nothing.

I was and still am dumbfounded by how this much pain could be so thoroughly unexplained. Ultimately, my GI doctor conceded that I may have originally had a mild case of pancreatitis, but only gotten treated for it near the end of its course. Alternatively, he suggested I may have something called visceral hypersensitivity. This was a bit discouraging, because all it really means is that your abdomen is mistakenly interpreting things that aren’t painful as extremely painful. It’s a half-explanation, and not the one I was hoping for.

After the scope, all the doctors agreed that they’d done everything they could for me in the hospital, and that I could just go home and treat my pain and hope for improvement. I signed the discharge papers and packed all my things up. I was frustrated and fearful of going home in this state without knowing a cause, but pumped nonetheless.

Images from the scope – clean as a whistle and no clues.

Out of nowhere, the pain took a serious turn for the worse. I won’t even try to describe how it felt because my words flounder in comparison to the force of this pain. I found myself rolling on the ground, not even able to sob because I could hardly breathe, let alone cry. I paced the room, bent down on all fours, panic-stricken and changing positions in search of relief constantly for half an hour.

I called my mom and told her she probably did need to come to town after all, because I was absolutely sure there was no way any human could experience that amount of pain and survive. It was especially awful because they’d de-accessed my port, meaning there was no needle attached to me through which to administer pain meds. Of course, I have a very fickle port, which isn’t easily accessed, so sitting there while the nurse from heaven, the “Port Whisperer”, finally found the right angle for the needle, was a low point in my life. Finally, she got the needle to work. Several hefty doses of pain meds later and I was ok again. I will never ever forget those moments. I knew I was done for. Because again, there was no possible way humans could feel this much pain and come out unscathed.

The spike in pain was chalked up to irritation by the gas required to fill up my abdomen during my scope earlier that day. Hearing this pain attributed to gas was absolutely insulting, and I’m still not sure I believe it. Incidentally, I was diagnosed with Influenza B the day before this all happened. I didn’t really have any of the traditional flu symptoms leading up to it, so there was some level of suspicion that the flu was manifesting in my digestive tract rather than my head or respiratory system, causing the pain and then being irritated by the scope. Leave it to the hospital to give you the flu!

In a weird turn of events, I went home the very next day with reassurance that they’d ruled out anything dangerous or anything that would qualify as an “emergency” and that the pain would almost certainly get better with time. I went home with a fentanyl patch and prescription for more, and a bottle of the very strong oral narcotic, dilaudid.

Relief

Finally, as promised, my pain finally began to improve after about 2 weeks. I’m still taking milder pain meds, and am on my last pain patch. It’s incredibly frustrating to not know what was wrong this second time around, and I find myself in constant fear that it will return since I still really don’t know what caused it.

My great escape, via Wheelbert!

Ultimately, I do believe I had some form of pancreatitis. The pain is very commonly compared to that of childbirth, and while I’ve certainly never experienced that, the way it’s been described to me by friends and family, it sounds pretty spot on. (This will probably make some moms who had horrible labors mad...we need to find someone who’s experienced both to get the real story!)

I’m finally back at work, and it feels so good to be a human again. It’s incredible how much being in the hospital can make you forget how important and big and real the rest of the world really is. Ahh, yet another exercise in gratitude and forcing us to find silver linings. :)

I’d be remiss to not offer a little catchup on life in general. While almost a month of the past several weeks have been spend in the hospital, there were several moments that brought me real joy, and kept me going at the lowest points.

My roomies snuck me in a weenie dog!

She came to celebrate St. Paddy’s Day and it made everybody smile.

The roomies also brought the pups back for a visit in the parking lot another day. Oh and my mom was there too!

I hadn’t breathed fresh air for 9 days before this!

My amazing wonderful fabulous mama surprised me during my first hospital stay. It was so incredibly good to have her there. My hospital outfits need work.

Pals like these dudes came to visit, which was a delight!

My beautiful friends Eli and Woojin were frequent visitors, and getting to feel and hear all about the impending darling of our lives, Malena Victoria, was SUCH a pick-me-up.

Heidi sent her love, which fueled me through at least 24 hospital hours.

No real flowers are allowed on the 6th floor, so Marissa brought me a dupe. :) Plus, my skyline view was pretty beautiful.

My favorite fisherman caught this very supportive little guy one day.

Rowan’s birthday fell on a Friday when I was locked up. Instead of spending it doing fun stuff, he stayed with me in my depressing hospital room, happy as a clam. We shared takeout and a finely aged bottle of the good stuff, (Sprite) over a fire, and attempting to play Scrabble but instead falling asleep. He is the best of the best.

Oh! And another highlight. The weekend after I broke free the second time, my good friend Brett did a kind, amazing, bizarre thing for me. He waxed his back for cancer! A notoriously hairy and big-hearted dude, his friends and family have been wanting to wax the fringe for a while now. He decided that for his big 3-0, he’d auction off strips of wax to take off his fuzz. It was so incredibly generous and humbling. Of course, those extra funds could NOT have come at a better time. I am so thankful for this sweet and hilarious friend of mine, and to everyone who thought Brett’s pain was worth a few bucks for cancer. <3