ileostomy

Living with a j pouch: The first month (Part One)

Dear intestines, so, this is it, huh?

OK, I lied.

It’s been three months.

That’s right. I’ve officially been ileostomy-free for three whole months. To be honest, it feels great to say that, but it also hasn’t been the easiest recovery in the world. In fact, I’d say it’s been the hardest of my three surgeries. Let me explain…

The hospital stay

Waking up without an ileostomy was extremely odd. I remember, leading up to the day of surgery, I was pretty sure when the time came post-operation to lift my shirt, see my stomach-sans-stoma and bawl my eyes out.

Well, I didn’t cry.

Don’t get me wrong, it was an intense moment. But, between the nausea (for some reason, I get really nauseous soon after I wake up from anesthesia, whether it’s because the surgery itself, the anesthesia itself or the pain medication), grogginess and pain I was in, my first thought wasn’t necessarily “Oh my goodness! No stoma! SWEET!” It was more like “Holy crap, it’s gone. Thank you, God. Now, what’s next?”

Well…

  1. Managing pain.
  2. Peeing.
  3. Having my first bowel movement in, like, forever.
  4. Eating.
  5. Leaving!

(1) With the handy-dandy pain button by my side, the pain wasn’t terrible, although, as I mentioned before, the nausea seemed to get worse when I would press it, so I tried to be conservative with it.

(2) Let’s not talk about that. I peed, yes… eventually.

(3) This was a biggie. If it all came out OK, that meant there were no major complications with the surgery. And, thankfully, on the first or second day, it did. I remember that moment like it was yesterday. “Whoa…” I said aloud. It was like, in 10 months, I forgot what that felt like…

  • For those of you who are wondering, it feels basically the same as a regular, healthy person.

(4) Of course, right after surgery, nobody feels 100 percent, so the pain and soreness, difficulty urinating, etc. are normal. The real issues started to arise, however, when I was bumped up to a full liquid diet.

You see, my third surgery consisted of reversing my ileostomy and diverting the plumbing, for lack of a better term, down to my pouch for the new system to officially take over. So, when they closed up my ostomy, it was swollen and narrow for several days after surgery. And a swollen, narrow piece of intestine + food = not good.

Gas and liquids would get lodged in that particular area and cause pain, discomfort, nausea and, eventually, vomiting.

Long, gross, painful story short, it took about a week for the gas pains and nausea to alleviate. By then, I was walking regularly, rarely pressing the pain button and able to tolerate a full liquid diet.

(5) Then, it was time to be discharged–perhaps for the final time.

So many emotions swirled through my head at that moment. I was thankful for my surgeon, the other attending and resident doctors and nurses, but I was ecstatic to go home and sleep in my own bed. I also felt relieved that, after years of dealing with this disease, I could see the light at the end of the tunnel. I couldn’t help but feel, however, like I was leaving a portion of myself and my history there.

  • Staying at the hospital certainly isn’t an ideal experience–I know that–but the people you encounter and the care they put forth is like no other. I would almost, dare I say it, miss it.

… I had to say it, didn’t I?

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The Good, the Bag and the Ugly: Part Three

Dear Intestines, you don’t scare me.

Let me preface this post with some information about myself, following my first surgery.

A little less than a month after my colectomy, I started my senior year of college. There, I was Editor-in-Chief of the campus newspaper, and, in order to graduate on time, I planned to take 18 credits, including an internship (for my job in the sports department of a local newspaper, which I interned at the previous summer) and an independent study (the impetus to the inception of this blog).

After a rip-roaring two months leading up to the semester, I wasn’t exactly sure what I could or couldn’t take on, who I would or wouldn’t tell, how much or how little motivation I would have, and so on. To be honest, it was daunting to think about.

  • At the same time, though, I didn’t want to surrender to my situation, and I wouldn’t allow the future I’ve been trying to build for the past three-and-a-half years to crumble right before my eyes.

So I didn’t think.

I just worked as hard as I did the previous seven semesters and hoped (and prayed) for the best.

And it worked.

But I’d be lying if I said it didn’t come without its hiccups.

The ugly

Early on with an ostomy bag, you realize there are a bevy of different brands, kinds and supplies that you can order. When I first got out of the hospital, and a couple weeks after, I was using a basic one-piece system that got the job done, but only for a few days. So I switched to a two-piece system, which comes with a skin barrier (what sticks to your midsection) and the actual pouch which can be fastened on and off.

Shortly after testing the two-piece system, I slept over my brothers’ apartment. Everything went fine. We joked and talked and laughed as usual, and eventually fell asleep, I on one of two couches in their living room.

When I woke up, everything was not fine.

Half-asleep, I slipped my hands underneath the blanket, when I felt something wet on my shirt and sweatpants. I lifted the blanket and saw my pouch had not connected right and, therefore, was hanging half-open, letting you-know-what leak out as I slept.

I rushed into the bathroom, cupping my hand over my ostomy. I sat down and took my shirt off, wiping myself off with handfuls of toilet paper and an extra towel. I then attached a clean bag I packed just in case (phew!). Afterward, I asked my oldest brother for an extra shirt and shorts, changed clothes and bid adieu to my soiled T-shirt, boxers and sweatpants.

  • I just bought those sweatpants, too, gosh darn it.

I drove home, still somewhat shell-shocked at what just happened. Luckily, though, your adrenaline kicks in at that moment, and, instead of lamenting what’s going on, your eager to find the solution and do it as swiftly and cleanly as possible.

It’s safe to say I switched back to another one-piece system following that episode; however, I would soon attempt the two-piece once I felt more comfortable changing the bag.

And it worked well. Very well.

For the most part.

I had a similar mishap a month or two later; but, this time, I wasn’t in the comfort of my (brothers’) own home.

It was right before a meeting I was to conduct in my school newspaper’s office with my adviser, fellow editors, writers and photographers. Beforehand, I was rushing to print out and organize ballots for the staff to vote on the next year’s editorial board. Once I had nearly everything ready to go and the staff was trickling in, I felt my shirt press against my stomach and, once again, I felt something wet.

I threw down the folders I was organizing and raced out of the room, trying not to make it obvious that something was wrong.

  • Only a few staff members knew I had an ileostomy, so who knows what they were thinking as I suddenly became pale-faced and fled the room… but, quite frankly, it doesn’t matter!

I went into the bathroom and realized, somehow, even with an ostomy belt clipped onto it, my bag detached and caused a leak. I zipped my sweatshirt off and hung it on the stall door, lifted my shirt, grabbed gobs of toilet paper and–well, you know the drill.

This time, however, I had no extra bag. So, after I cleaned most of the mess, I tried to place the bag as tight as possible, dropped my shirt back down, walked out of the stall and held my sweatshirt against my midsection to cover some of the mess.

  • Yes, I washed my hands, too.

I–a mess, physically and mentally–walked back into the office, whispered to my adviser that I had a malfunction, apologized to the staff and briskly escaped to my car.

During moments like those, it’s easy to break down, scream and cry and give up. But, I’m telling you, take it one step at a time: clean the mess, fix/replace the bag, change clothes, take a deep breath and take a nice, hot shower.

There are ways to avoid leaks, and they’ll happen less frequently–if at all–once you’re comfortable with your appliance and changing it at the right times. It’s up to you which bags you like best, but, no matter your choice, know this:

It will all be OK.

  • It was–and still is–for me. Through faith, persistence, focus, hard work, family and friends, I am now blessed to call myself a college graduate. Whatever your particular goal may be right now–be it graduating college, running a marathon, learning to scuba dive or sky dive, attracting the girlfriend or boyfriend of your dreams–you can do it. Whatever you do, try not to allow your predicament to hinder you from living the life you wish to live. Sure, having an ileostomy is a constant battle, and, sometimes, it can rip the confidence right out from under you; but, if you take it day-by-day, stay focused and keep your head up, all while holding a firm grasp on hope, you’ll be just fine–and probably even stronger once it’s all over.

To ease you along your path, here are some tips and tidbits of information I’ve learned along the way:

BRANDS

Once you’re discharged from the hospital, you’ll surely bring basic bags home with you. But, sooner rather than later, you’ll start receiving samples from companies like Coloplast, ConvaTec and Hollister (no, not the clothing store). Each will likely provide a purse-like bag full of miscellaneous products that can be useful, as well as some pouches. I’ve sampled supplies from all three, and, quite frankly, you can milk the free supplies they offer for a month or two.

BAGS

As far as ileostomy bags go, I’ve tried one-piece systems with and without a filter, plus two-piece systems with a filter. The filter allows some of the gas outputted by your stoma to flow out, avoiding the bag inflating like a balloon. I’d definitely recommend it. After a few nights in bed not necessarily monitoring the pouch overnight, the filter eventually gets clogged, rendering it basically useless.

This is where the two-piece comes in handy. Rather than changing the entire appliance when this happens–the bag fills up with gas, that is–peeling the skin barrier off your abdomen and having to measure, cut and stick the other appliance on, you can simply detach the bag and place another one on in seconds. To avoid leaks, make sure you hear a click as you connect it, and you press firmly through the entire plastic ring, or flange. Once the appliance starts to wear or peel, that’s when you can change it entirely.

These various pouches can also come in clear or tan. When you’re no longer worried about your output, my suggestion would be to switch to the tan, more concealing pouches.

MISCELLANEOUS SUPPLIES

Your samples will also be packaged with some information regarding each company, which can be very helpful, whether you’re not sure how to change an appliance, curious about another type of pouch, wondering how to order more supplies or looking for tips on how to live a normal life with an ostomy.

The most notable products, in my opinion, are wipes to clean the area around your stoma and accessories to help avoid leakage.

There are adhesive wipes, which you can use to help alleviate the irritation and pull when peeling off the skin barrier, as well as to remove excess adhesive that still remains on your skin.

There are also protective skin barrier wipes to protect your skin from rashes and the like when changing an appliance; these can be applied directly before you place another appliance on, especially since, in most cases, it will provide some extra stickiness on your skin.

Before you go ahead and stick that baby on, however, one of the most vital accessories to avoid leakage is the barrier ring, or Eakin seal. These are malleable, almost clay-like rings that can be molded onto the inside of your appliance before sticking it around your stoma, providing an extra layer for any wannabe leakage to soak into.

To add yet another level of protection, you can wear an adjustable ostomy belt, which easily clips onto the sides of two-piece systems and wraps around your waist. These also come in white or tan, so I’ve experienced.

ONE… OKAY, TWO MORE THINGS

If you order the two-piece systems, the skin barrier and pouch will be two different items. Also, there will be varying sizes. Keep track of the size of your stoma, as it will likely decrease in size over time, albeit slightly. You can adjust the size of your skin barrier–and, thus, the pouch’s flange size–with the size of your stoma. Make sure they match!

MY VERDICT

After all the sampling and testing, I have chosen the tan-colored Hollister two-piece pouch. Since I have chosen Hollister, I also order their Adapt skin barrier and adhesive wipes and barrier rings, along with their ostomy belt (also in tan). Although I don’t wear the belt at all times, it becomes very helpful once the appliance is starting to fray or peel, as well as when performing physical activity or even when sleeping.

The Good, the Bag and the Ugly: Part Two

Dear Intestines, I appreciate you leaving me with this special memento, but you shouldn’t have… really…

Living with an ileostomy surely has its fair share of ups and downs. Physically, you’ll likely feel better than you ever remember. Mentally and emotionally, it may be a challenge.

But not impossible. Here are some thoughts/ideas/tips/rants on managing your ostomy when in public.

The bag

I got my first surgery after freshly being dumped and about to trek into my final semester of college, so it’s safe to say my mental state was a bit disheveled.

I was excited, nervous, anxious and, quite frankly, a little lost. Looking back at the last month-and-a-half flummoxed me beyond measure. Being in my early 20s, that teenage feeling of invincibility wasn’t quite worn off yet. By the time school rolled around, however, I felt the complete opposite of invincible.

But I had a mission to accomplish: graduate college.

It seemed easy enough. Go to class, attend meetings, study, read, write, work on homework, write some more. It was the same routine I had been performing for seven semesters prior to that. It would be the first, however, with my new friend.

When I first stepped into class, I felt like I was smuggling a package of drugs under my shirt.

  • Can anyone see me? Can anyone see IT?

The answer was yes, they could see me. The next answer was no… well, most of the time.

The bags would dip a little below my pant line, so all it took was a little tuck under my jeans or shorts to conceal it. Bags vary in brand and type and size, but once you get used to your favorite system, it’ll stay pretty fastened and hidden.  As long as it wasn’t getting full of gas or you-know-what, it should stay stay that way.

Just keep in mind you may make an “oopsy” or two.

I, for instance, walked into a computer lab one day; unbeknownst to me, I forgot to slip my bag under my sweatpants. It wasn’t blatantly obvious, but you could see a little something something dropping an inch or two below my shirt. I took a seat, looked down and noticed my blunder. Quickly, I stood up, walked briskly to the door and, thankfully, about four additional steps into the bathroom.

I walked back in the room with my bag now tucked and hidden, heart racing and face probably red as a cherry. I tried to distract my mind with casual conversation with the students next to me.

No one mentioned it. And I never made that mistake again.

People noticing the bag was one of my biggest worries. Sure, school and the various responsibilities that came with it kept me and my mind busy, but I couldn’t help being self-conscious about it.

And, no, that feeling may never go away. But you learn to deal with it. You learn to keep your mind and body busy so everything you think or say or do doesn’t revolve around your bag. It’s as much of a battle with your mind as it it with your body.

  • So, go ahead: read a book, write a blog post, go for a walk, spend time with family or friends, play tennis, play video games, meditate, pray, go to church, take a nap… whatever you can do to clear your mind.

Sometimes silence helps, but other times it can exacerbate angst to a whole new level.

At different times, your stoma may “spit,” as I call it, or, basically, “pass gas,”  so you may be worried about people hearing your stoma as much as seeing your bag. The sounds could range from a short and soft crackle to a long and deep squawk.

I quite vividly remember my first week in class–AKA syllabus week. It was full of zombified students staring at yet another packet of instructions, guidelines, schedules and grading procedures. Suffice to say, it was pretty quiet, aside from the professors speaking.

I would start hearing the soft groans of my stomach, hoping my ostomy wouldn’t make a peep. With that nervousness came fidgeting and even a little sweating. I had to leave the room once or twice to collect myself. They were some of the most uncomfortable moments of my life, besides, say, when I’m in the hospital.

  • We’ve all passed gas once or twice in school before, or at least felt the need to… embarrassing, wasn’t it? Well, try not having the ability to hold it in. 

With a deep breath and maybe a short prayer, I would try and focus on what I should’ve been focused on all along: that long, boring, tedious syllabus.

There are ways to avoid that moment, however.

By knowing your body, understanding what makes it digest faster or slower and what produces more gas or less gas, you can become confident that you won’t have any of those embarrassing moments. It’ll take some time, but, in the end, it’ll become so routine you may end up forgetting you even have a bag.

Take me, for example.

My system seems to be quick in the morning, much slower in the afternoon, but then pick up again in the evening and overnight. It’ll take some trial-and-error with the type of bags, too, emptying and changing them, but you’ll gain a sense of when you should head over to the bathroom.

When all else fails, if you start feeling a slight pull, like a light weight is hanging on your stomach, or you look down and see what looks like a small water balloon under your shirt, there’s another green light for a bathroom trip.

  • If it is actually a water balloon, feel free to slip it out from under your shirt and chuck it at someone. If it’s not a water balloon, please don’t throw–you know what? I’ll stop there. 

Your “output,” as the docs call it, can also be affected by the way you eat.

Most likely, a nutritionist will visit you at the doctor’s office or hospital to give you a guide of what you can and cannot eat, how you should eat and when you should eat it.

Foods in the list (1) below can thicken stool and decrease gas:

  1. Rice
  2. Pasta
  3. Applesauce
  4. Bananas
  5. Potatoes
  6. (White) Bread
  7. Marshmallows
  8. Peanut butter
  • Also, waiting to drink until AFTER you’ve finished a meal can help accomplish this. 

Foods in the list (2) below can loosen stool and increase gas:

  1. Dairy
  2. Greasy/Fried foods
  3. Spicy foods
  4. Chocolate
  5. Raw fruits/vegetables
  6. Some fruit juices
  7. Carbonated beverages
  8. Alcoholic beverages
  • These, I’d say, are things to avoid if you plan on going out somewhere–especially if that somewhere is somewhere very quiet, like an office at work. 

Foods in the list (3) below are likely foods to avoid altogether, thus avoiding blockages:

  1. Nuts
  2. Seeds
  3. Popcorn
  4. Mushrooms
  5. Raw fruits/vegetables
    1. Especially pineapple, coconut, dried fruits, corn (that almost got me), celery and some Chinese vegetables
  6. Whole grains
  7. Anything with “Fiber One” on it…

If you believe you may have a blockage (no [or very watery] output for several hours, sudden pain and swelling near your stoma and nausea), see this list (4) of tricks you can try to get things moving again:

  1. Try foods in list No. 2 that make your stool more watery/gassy
  2. Massage around your stoma
  3. Loosen the opening of your appliance if it may be blocking circulation
  4. Lie on your back and lift your knees up to your chest (remain in that position)
  5. Do NOT take a laxative
  6. If symptoms worsen, CALL YOUR DOCTOR or GO TO THE HOSPITAL
  • To avoid this, stay away from foods on list No. 3 and chew all foods very well!

Up next: The ugly

Climax: Part Two

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?

  • Hope..

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…