ileostomy bag

Changing an ileostomy bag

Dear intestines, at what age are you going to learn how to dress yourself?

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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