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?

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

The Good, the Bag and the Ugly: Part One

Dear intestines, we are never, ever, ever getting back together. 

I’m going to be frank about life with an ileostomy: it sucks.

But it’s worth it…

Let me tell you why.

The good

Since I was diagnosed with ulcerative colitis, it had been an uphill battle. It was a guessing game I never seemed to win, where each guess may have resulted in temporary relief, but none ever lasted.

With everything I ate, I never knew how it would affect my symptoms. I had completely avoided particular foods: whole grains, most dairy products–especially milk–tomato sauce and other acidic foods and drinks, etc. No matter what I ate, when or how much, anything could make my symptoms go haywire. It was, again, an entirely unwinnable guessing game.

I’ve already described the multiple medicinal avenues I took before surgery. Each came prepackaged with a side of hope–like some microwavable meal. But, like nearly all microwavable meals, they were a letdown. They were either terrible for my body, didn’t work… or both.

After surgery, however, none of these symptoms–bleeding, cramping, diarrhea, urgency, etc.–came back.*

  • The * is important there. You see, my surgery is either two or three stages. The first was removing my colon. Next up will be removing my rectum, creating the “J pouch” and reconnecting everything so I can go to the bathroom normally again. The key word there was “rectum.” I still have it, so some bleeding and urgency still remain, albeit on a much lesser scale. And, no, it isn’t stool that comes out when I have the urgency. Since my rectum is still inflamed, it’s mainly, well, blood. But enough about that gross red stuff, though, and on to some less gross red stuff… 

Obviously, my diet wasn’t completely back to normal the first day without a colon. Heck, it won’t be normal probably until after my second surgery. However, as weeks of recuperating went by, I weaned back into a regular-ish diet. I could have most things, but, to this day, I’ve avoided extremely fibrous and tough-to-digest foods like whole grains, nuts and popcorn.

I will never forget the first lunch at the hospital after surgery No. 1.

  • This is the part where you look back to my list of foods I avoided at all costs. 

After the food services employee came in with my tray, we slid the table closer to me and I made myself comfortable enough to sit up and eat. I grasped the lid, felt the steam push against my hand as I lifted it away and unveiled one of my arch enemies over the last two years.

It was tomato soup.

I can’t quite explain what went through my mind then and there. There was confusion and fright and nervousness; but, as I took my first spoonful, and then another, and another, those frantic thoughts dissipated.

Afterward, there was no pain or cramping or discomfort. I was able to enjoy my meal without any ramifications. It was nice, but certainly not the only perk of being sans colon.

The most rewarding thing, of course, isn’t simply the ability to eat regularly again. It is to finally be free of the physical and emotional toll colitis had taken on my body. My physical body was no longer deteriorating and my stomach–for lack of a better term–wasn’t constantly irritable; meanwhile, a weight of anxiety and embarrassment that stemmed from those physical symptoms was lifted from my mind.

Unfortunately, though, another embarrassment has temporarily filled that void.

Up next: The bag