Dear intestines, hurt me all you want, but, my family? Oh, no, you don’t.A Mother Living with Ulcerative Colitis from Alex Geli on Vimeo. (Filmed by Mark Yang)
Dear intestines, it’s about time I tell you I met someone else, and we really hit it off; he’s a doctor–a surgeon, actually…
Dear intestines, Merry Christmas and a Happy New Year to you, too…
I’ve always been like a child when it comes to holidays. I guess I can’t help it. There’s a visceral feeling of joy that transcends itself through the month of December and into the New Year. There’s more happiness, color and spirit in the air that can’t be matched by any other time of the year. I usually get caught in this wave, adoring the sparkling lights, wafting the pine scent of the Christmas tree and jamming out to nostalgic holiday tunes.
This year, though, was one exception.
I guess when you’re weak and tired and carrying around a backpack of TPN most of the day, that giddiness sort of wears off.
Yes, for about 20 of the 24 hours in the days I was home from the hospital, I had the TPN pumped into me. A nurse came and taught me how to administer it myself: copiously clean the tubes, inject the vitamins, wrap myself back up, reset the pump timer and seal the bag of liquid tidily in my handy dandy backpack to drag around the house.
I had plenty of emotions as Christmas came and went. I was anxious to be healed, nervous for surgery, happy to sleep in my own bed, comforted by my family, blessed to be celebrating the holiday at home, depressed about my breakup but also trying to gear up for an entirely fresh start.
The Sunday before my surgery, I remember going to church and having all of these emotions overwhelm me toward the end of the service as the second and final round of music started. I stood there reflecting on the last month and the turbulent ride I had taken to get this far—and what I still have lying in front of me in the upcoming months: recovering from surgery, finishing my final semester of college, returning to work, acclimating to my ostomy and eventually graduating and hitting the reset button once again.
I couldn’t help but send a river of tears down my face. I stood there, frozen, letting go of everything and expressing my vulnerabilities like an open sore. I seemed to go unnoticed by everyone around me, thanks to the darkness that blanketed over us—that was, except for… guess who… my mother.
- You know, that sixth sense mothers have when one of her children are upset? Yeah, that one.
She took a tissue out of her pocket book and handed it to me. Afterward, I sat, my family huddled around me now, reflecting on my journey thus far, on life, on God, and came to accept it.
- I wanted to beat it. To overcome. To persevere. I didn’t believe God “did” this to me, but I believed God would carry me through this. I accepted it as a challenge. A challenge to help build maturity, strength and character. I came to understand that through struggle ultimately lies something magnificent: hope. I think back to Bible verses Romans 5:3-5, which sum it up a bit more eloquently…
“Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame because God has been poured out into our hearts through the Holy Spirit, who has been given to us.”
I mention religion because it’s something that I grew closer to during this period of time as I got my priorities and values straightened out. Although I’ve always considered myself a Christian, my faith has certainly grown stronger as I continue to grow and experience life.
A couple days before New Year’s, I returned to Hershey Medical Center, where I would be stripped of my clothing, given a freshly made bed and a room all to myself with a complimentary carbonated beverage—ahem, a laxative—to sip as I watched television.
The next day I was carted into an eerie, white and chilly room where I eventually fell into a deep sleep.
When I woke up, I had no colon.
I also had all sorts of tubes coming in and out of me. Two in orifices I need not describe, and the worst of which surprisingly in my nose.
It started in my stomach, pumping black, acidy liquid up through my nose and into a holding container behind my bed. This acid had been released into my stomach during the surgery and they needed to suck it out, for lack of a better term, so I wouldn’t become nauseated.
I also had a button for pain medicine that I could press every 5 minutes or so.
The surgeon and his minions—aka, residents—told me the surgery went as planned. My colon had been removed. I still had my rectum, but for the next several months as I finish up college, I would have an ileostomy.
- Oh yeah, that…
It took me a while to lift up my shirt and reveal the bag for the first time. When I saw it first, I didn’t get overly upset. It was weird and surreal, for sure, but it wasn’t as depressing as I may have expected—I guess the pain medication helped me not think about it so much.
- It just so happens that my brother had a similar surgery for his Crohn’s. Not only did he now have an ileostomy, but he lost his job because of his disease and, therefore, his car. Life wasn’t going so well for him, so this was just the dried up, rotten cherry on top of his week-old, spoiled sundae. I visited him after the surgery and he broke down a little, opening himself up to me—something he rarely did—decrying the situation he found himself in. I remember staying calm and hugging him, trying to comfort him—because, really, what else can you do? As I left and closed the door, though, I burst into tears. I felt terrible. I wanted to take his pain away. And, now, here I was in a similar situation, wanting to be strong not only for myself, but for him.
As the days passed, I had my catheter taken out…. twice… and the other tube (on the other side) was also removed.
All that remained was the tube in my nose. It sucked and sucked. The more it stayed in, the more it irritated my nose and throat. It was one of the most uncomfortable, unsettling feelings, and it lingered for days.
At first, every time I would get up to walk—you know, blood clots—I would feel nauseous, the very thing they were hoping to avoid with the tube. They concluded it was too far down into my stomach, so they had one of the doctors pull it a bit higher to make it less of a nuisance.
But, boy, did it make it worse.
As he pulled it through my nose—not very comfortable to begin with, I might add—it looped around my tongue, stopping me from swallowing and speaking, causing him to abruptly stop and think of another game plan… and quickly.
I gestured for a pen and paper so I could write down what had happened. I tried to remain calm, simply focusing on each breath as the doctor figured out another way to maneuver it. Meanwhile, I gestured my mother to back off as she pierced the doctor with “you better fix my son” looks.
He explained he would have to take it out and put it back in, which he stated wouldn’t be comfortable for me at all.
After a couple seconds went by, he figured out a way to unloop it and, with the help of several swallows, dropped it into its proper place.
He fastened it back onto my nose with tape, and it remained there for another day or two. After a while, it grew extremely tiresome with my throat drying up and becoming itchy, making it painful to swallow and bothersome to speak. At a certain point, I didn’t want visitors anymore because of the unpleasant sensation when I spoke.
I’ll just be blunt and say it made me miserable.
- But, remember that beautiful nuance that comes with faith? Yes, I almost forgot about it myself…
With the countdown to New Year’s literally minutes away, the nurse came in, looked at her computer and asked, “Do you want that thing out?” meaning the tube.
At 11:59 p.m. on December 31st, she slipped the tube out of my nose. I watched the ball drop in Times Square with an extraordinary feeling of relief, gratitude and refreshment.
“3… 2… 1…” I heard the TV count down.
I soaked in that moment, just as I had done in church a week before. Instead of revealing my weaknesses, however, it motivated me and gave me strength to tackle the new challenge now before me.
It was beginning a new stage in my life, and I was ready. With the help of faith, family and others supporting me throughout this process, I believed I would get through it. I would do my best to persevere, to build character, all while clinging on to—wait, what was it, again?
And so 2015 arrived; it was a new year full of unexpected changes, some heartbreaking and life-altering, but I wouldn’t let myself be stymied by it. I would embrace it, and hope for a smooth recovery, a successful several months and a riveting fresh start to my life.
Now, about this bag on my stomach…
Dear intestines, all I want for Christmas is… not you
On December 19, 2014, I visited Penn State’s Hershey Medical Center with the intention of making 100 percent sure surgery was the correct answer.
Less than an hour into the appointment, I had spoken to the nurse, gastroenterologist and surgeon about my symptoms, failed medications, the surgery’s process and timetable and whether I would definitely need it or not. I figured that would be it. And then I would leave. Just like any other ordinary doctor’s appointment.
But this didn’t turn out to be an ordinary doctor’s visit.
It turned into a five-day hospital stay.
The nurse, GI and surgeon all seemed a bit worried. They said I looked pale, skinny, weak and fatigued. They not only confirmed I needed surgery, but I wasn’t even healthy enough to undergo the procedure yet.
After being admitted to the hospital and getting some tests done, they concluded I was anemic, dehydrated and malnourished.
- What a difference two year makes, huh?
I had corticosteroids, antibiotics and TPN (total parenteral nutrition)—some weird looking white liquid consisting of vitamins and minerals, amino acids and lipids and all that good stuff—pumping into my veins. They put the TPN through what’s called a PICC (peripherally inserted central catheter) line—a more durable, long-lasting form of intravenous therapy that’s admittedly a heck of a lot scarier to put in than an ordinary needle.
- How does it work? Well, I’d mumble off a bunch of medical jargon I found off the internet, or I could just show you this video from MacMillan Cancer Support, which I also found on the internet…
As each day passed, the doctors tried to get me one step closer to going home for Christmas Day. One big step was being able to eat enough so I wouldn’t return to the hospital for surgery in the state I originally came in.
I tried a diet of “full liquids.” Unfortunately, most of the foods they were able to give me were dairy products, such as pudding, yogurt and ice cream—which don’t pair very amicably with an inflamed colon.
So I wound up drinking a lot of Nestle’s BOOST non-dairy nutritional shakes. However, I needed to drink an obscene amount in order to receive an adequate level of nutrition.
As the countdown to Christmas continued, a plan was in the works. Slowly but surely, the plan was coming into fruition.
And then Christmas Eve came.
My diet was upgraded to “low residue,” meaning no nuts, popcorn, most fruits and vegetables and other fibrous, tough-to-digest foods.
So I had eggs and home fries for breakfast… and they were delicious—from what I could eat, that is.
You see, I had gotten to the point where I was almost afraid to eat. Plus, I would get full more easily, so I would pick at what I could eat without any cramps or urges, and then be satisfied.
When the doctors would come in, they had a look of disappointment, asking if that’s all I was able to eat.
So the plan went through its final tweak: I would go home (yay!) for a few days to spend Christmas with my family; to avoid worsening symptoms, I would stay on a low-residue diet; and, to avoid worsening hydration and nutrition over that span, I would go home with the PICC still inside me so I could administer the TPN at home. After a few days at home, I would return for my procedure: a total colectomy.
On December 24, 2014, I returned from my ordinary, run-of-the-mill, five-day gastroenterologist appointment.
Dear intestines, it’s not you, it’s me–wait a second… of course it’s you.
The ‘S’ word
The Remicade worked for a couple months. The bleeding stopped. The cramping dissipated. The urgency faded.
But after those couple months, the symptoms returned.
The doctors told me to get Remicade early.
It didn’t work.
- Weird, right? Something works so well for months, and, poof! Just like that, its effectiveness flies out the window. I was told that Remicade was a miracle drug. It seemed to help patients when all else failed. But for some of them, it suddenly stopped working months, even years after they started. I, unfortunately, was one of them. Heck, it just goes along with what seems to be one of the paradigms surrounding ulcerative colitis and other IBDs: no matter what you do, what you eat, what you take and when you take it, the disease is going to do whatever the (bleep) it wants.
With Remicade being on the top tier of drugs to treat inflammation, it was time to restructure my plan with the gastroenterologist. This is when the “S” word was brought up: surgery.
You see, ulcerative colitis is a disease that is treated medically to begin with, but when medicinal options run dry, surgery essentially as a cure. It is either done in one to three stages, by removing the colon and creating what is called a “J-pouch” to act as the replacement reservoir for stool. Patients are known to live a pretty much normal life following the procedure(s), just with a couple more trips to the bathroom each day—the normal is about six times a day.
- Ugh. Six times a day? Doesn’t sound very pleasant does it? Well, it certainly sounds better than the alternative. Those of you who know what I’m talking about can relate.
I learned all of this on a visit to a surgeon within the same medical group—the same that operated on my brother, who has Crohn’s disease. He got several feet cut out of his small intestine, used an ileostomy bag for about six weeks before his insides healed and his “plumbing,” as the surgeon phrased it, was plugged back together. My operation would be similar in terms of carrying a bag around for x-amount of weeks between surgery phases.
(This video is not of me, just a similar procedure–and feel free to stop around 2:20!)
Speaking to the surgeon was very informational but, most of all, eye-opening. It helped me understand what may possibly come next and, if that was the next step, how and when I would go about it.
But surgery scared me. I didn’t want it. The thought of having an ileostomy frightened me and it sent chills up my spine just picturing it.
Not only that, but I had college.
- Would I need to miss a semester?
I had work.
- Will I be able to keep my job?
I had a girlfriend.
- Would she be disgusted by me?
I wanted to keep up with the Remicade and try to assuage my symptoms medically—or try to, anyway.
I was put on an additional medicine, an anti-spasmodic, to alleviate the urges to go and make daily life a little less hectic.
But it didn’t get much better.
And then it got a heck of a lot worse.
The ‘B’ word
Near the end of fall, late November, was my four-year anniversary with my girlfriend.
- How about we finally give her a made-up name. How does Ellie sound?
Let me tell you about her.
We originally met at McDonald’s, our first job, during orientation. We always seemed to have break together, and those short conversations turned into texts, texting turned into coming over to help her with homework, and helping her with homework turned into my first kiss and first serious relationship. It marked the beginning of the happiest, fullest, most lively and passionate time of my life.
Throughout our relationship, Ellie was always there for me, always there with me; she understood and was patient with me; she didn’t judge and never made me feel uncomfortable or awkward because of my disease, including the long periods of time I would hunker down in the bathroom. She brought me the most happiness anyone had ever before and I wanted nothing more to spend the rest of my life with her. With college winding down, she would tease at her desire for me to propose. There was no doubt in my mind that I wanted to be with her and only her as long as I lived.
But then things took for a turn toward disaster.
One day, I got a call explaining how she started to question things, how she liked hanging out with another guy and how she was losing grasp of the love she once felt for me.
I was crushed. Confused. Perplexed. Scared. Hopeless.
A few days later, I was in the emergency room with strong stomach pains. It was there that she said she no longer wanted to be with me—through texts, that is—and brought up the dreaded “B” word: breakup.
- Four years… Poof.
It’s safe to say my stress levels went through the roof. Stress and colitis? Yeah, they don’t mix very well.
My previous symptoms were exacerbated and I started developing new symptoms. My body began to ache and cramp not only in my stomach, but my bones and muscles. My knees and ankles felt like they were deteriorating, and I started walking around with a limp. My entire self, body and mind, felt like it was deteriorating. I was the weakest, physically and emotionally, I had ever been.
I was put on prednisone, and that didn’t even help. Instead, I woke up with a swollen face, barely being able to mutter a coherent sentence, being afraid what would happen next and struggling to find an answer.
- Sometimes it isn’t the answer in life you need to find. It’s simply the how: the “how in the world am I supposed to get through this, and how can I make it the best situation possible?” In life, you make a lot of decisions; but, no matter how hard you try and forge your own path or figure things out on your own, some pretty terrible things will happen. You can’t avoid it. But you can try to handle it the best you can and try to extract whatever good you can out of it so you can come out of suffering, pain, discomfort, confusion, hopelessness or heartbreak stronger, smarter, more mature, appreciative, willing, accepting and ready to take on other unforeseen challenges in the future. Because it’s going to happen, whether you like it or not, whether you plan it or not and even whether you deserve it or not. Because sometimes, life—to put it simply—sucks. But stand firm: no matter how lost you may find yourself, no matter how worthless you may feel and no matter how much pain you may be enduring, there is always hope. Hope for a future. Hope for a future better than you could ever imagine. Because it’s going to come… whether you like it or not.