August 22, 2016

Stoma Life: My 3 Months With an Ostomy

Woman in a bikini wearing an ostomy bag.
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What my stoma life, the three months I lived with an ostomy bag, was like, including the physical and mental adjustments I went through, procedures, and what travel was like

This is my best attempt at recording what my stoma life was like for the three months I lived with an ostomy bag before my take-down surgery.

First off, the idea of a stoma is really hard to wrap your brain around. Even though I sat down with a surgeon and had the whole procedure explained to me, I didn’t understand. I have two stories that demonstrate this perfectly.

Videos and Images of REAL People with Stomas

Sales pitch gone wrong…but right

A Facebook friend, who was someone I hardly knew in college, sent me a sales pitch for the medical company she was working for. At first, I was angry. How dare she try to sell me something when I’m at a very vulnerable and scary time in my life?

But the pitch she sent included links to videos. These videos were about how to change your ostomy bag and how you could live a normal and active life with a stoma. And it was filmed with people who had real stomas.

All of the material I had seen previously used images of models with a stoma-like object glued to their stomach. The difference between a mock-up and reality was jarring. When I saw a woman change her bag on camera, and I caught my first glimpse of a real stoma, I almost threw my computer across the room.

I became angry and scared. Angry because those fake images hadn’t prepared me. Scared because I finally realized the enormity of what I was about to go through.

Oh my God, what’s that?!

On the last day of my hospital stay, my bag had to be off for a while. Before you are discharged, a stoma nurse has to come and give you one last lesson on how to change your bag and take care of your skin and stoma.

But while she was giving me instruction, my stoma started spurting blood. She wanted to get the surgeon to see it so I didn’t get another bag put on.

While waiting, my dad asked if it was okay to come into the room. Since I was covered in all the right places, with only my stoma showing, I let him come in.

At first, he didn’t see the stoma. But when he caught sight of it, he screamed.

Oh my God, what’s that?!

my dad

Once he was told it was the stoma his eyes got all big. And then it spurted some blood out and he screamed,

“Ewww gross!”

my dad

The stoma nurse gave him evil eyes. My mom rolled her eyes. I laughed.

He was flummoxed. He had thought that it was going to be a piece of plastic tube or something. Even though he had sat through the same meeting with my surgeon, his brain had interpreted what a stoma was differently.

The only person who actually understood was my mom. And that’s because her father had to have a stoma for a little while and she had seen it when visiting with him.

Stoma Life Table of Contents

Now that you maybe have a better understanding of just how hard it is to understand what a stoma is, here’s a table of contents for this post. As it’s going to cover 3 months of my stoma life, it’s long.

Topics include:

Physical Adjustments

There are a lot of physical adjustments to get used to when you have a stoma. Here are some of the ones I experienced.

Bag Leaks and Skin Irritation

The skin around the stoma is called peristomal skin. Ileostomy output is more acidic and corrosive because there is no colon to break down the enzymes that are in it. When the skin comes in contact with the waste, it can cause the skin to break down.

The peristomal skin becomes irritated primarily from bag leaks due to ill-fitting stoma bags but also from allergies to ostomy products.

An ostomy bag is a simple but technologically advanced product. The adhesive on the back of it is strong enough to melt into the skin, adhering the bag to the skin. It’s strong enough to catch the weight of the stoma output and for you to live an active life. But it can also be removed without damaging the skin.

I had trouble with bag leaks in the beginning because I was still learning how to put on the bag and finding what worked best for me.

My first bag change took over an hour. And I did it incorrectly and had to immediately try again. I also eventually learned that for me, laying down and putting the bag on was the best. Something about the way my stomach changes shape laying down versus standing made the bag stay one better.

Later I experienced bag leaks because I started becoming more active and because my stoma continued to shrink in size after surgery.

While you are still in the hospital after j-pouch surgery, a stoma nurse comes in and measures your stoma. Ostomy supplies are then ordered based on the size of it.

However, as you heal from your surgery, the stoma shrinks in size. If it shrinks enough, the measured hole opening that goes over your stoma becomes too big, leading to the peristomal skin coming in contact with waste.

My first bag leak

My ostomy nurse told me it would be really obvious when I had a bag leak and that it would hurt. I thought that meant “Ahhhh!!! My skin is melting!” level of pain. But it was more subtle.

I was feeling an itching and stinging feeling for a couple of days. I just thought it was from moving around and bending too much. But when I changed the bag, I noticed the skin closest to the stoma was raw and it looked really bad.

Unfortunately, you can’t put anything on it to try and heal it, like Neosporin, because that stops the bag from sticking and makes the situation worse. So, I couldn’t do anything. I put a skin protector on it and then put a new bag on. But I still felt the stinging sensation on my skin and it was incredibly itchy.

As my stoma got smaller and smaller, I started experiencing more bag leaks. I had trouble keeping my peristomal skin healthy and it began to look awful.

Changing my bag once to twice a day was not good for my mental health. I also began to have bad neck pain from looking down at my stomach so often.

Abdomen Pain

Outside the abdomen pain I experienced from my j-pouch surgery recovery, I experienced the pain of partial blockages.

The first time it happened, I was in agony for hours, wondering if I should go to the ER. My stomach muscles felt like they were moving in waves, like an earthquake. I was bent over crawling on the ground when I remembered the advice my ostomy nurse gave me.

To help a partial blockage pass, you need to chug a lot of hot liquids. So, I got down to chugging tea, coffee, and hot water. At one point, I swear I felt a release or pop and soon, I was back to feeling normal.

Throughout my three months with a stoma, I experienced partial blockages many times. But after knowing what signs to look for and how to deal with the symptoms, they became easier to get over.

Digesting Food

The first thing your ostomy nurse tells you is that you need to relearn how to eat. Because you have to chew your food beyond normal.

The colon is partially responsible for breaking down food further. But without it, food can occasionally come out whole (especially mushrooms). The small intestine does learn a little but it can’t mimic the colon completely.

The consequences of not chewing your food properly can be mild to life-threatening. Most blockages just require chugging hot liquids. But sometimes surgery is required.

What surprised me most about having a stoma is how much I enjoyed not having an anus. I’ve experienced so much pain in that area: swelling, ulcers, and bleeding. But for three months, it was like it didn’t even exist. There was no pain at all.

Also getting rid of gas was never easier. All I had to do was “burp” my bag. That’s not to say there is no farting involved. Gas is released silently or through “stoma farts.” It’s very weird having farting sounds coming from your stomach. There’s no smell until you have to empty your bag, which can be pretty smelly.

Clothes

Clothes for the most part were very annoying. My stoma was about an inch away from my belly button, down and to the right.

I bought some cute underwear that was made specifically for people with ostomy bags. They were designed with an extra layer of fabric in the front that you can tuck the bag into. This is nice when you are walking because it stops the bag from flopping around.

But I have a long torso compared to other people, so the top bands fell right on top of my stoma, which was extremely uncomfortable.

Low rider jeans, which I’ve never been a fan of, were far enough down that they didn’t bug my stoma. However, they were more likely to press and rub my healing groin scar too much.

I’ve never been able to buy a pair of high-waisted jeans that hit my actual waist because of said long torso. Instead, they hit about an inch away from my belly button, or right on top of my stoma. So, none of those jeans worked.

The only type of clothing that worked well with my circumstances was shirts. The fashion of long and flowy shirts this summer saved me. I could pair them with low rider jeans and be a hundred percent certain I wasn’t flashing my ass crack to people. They also draped in a way that hid my ostomy bag completely.

Mental Adjustments

When you first have to start dealing with a stoma, it’s a total heartbreaker. You have to relearn how to feel good about yourself.

When my bag was on, I felt completely fine. I felt normal and grateful. But the bag was like a band-aid holding in all my emotions. When I took it off, that’s when I had a hard time.

Eventually, I had to change my bag once or twice a day. And every time it came off, it was like I was ripping off the band-aid that was holding back the tide of my emotions.

My skin was raw, fragile, broken, and ugly. And I felt raw, fragile, broken, and ugly. I couldn’t help it.

meg

I got angry for allowing myself to get so down and I struggled to figure out how to not feel that way.

Feeling Dirty or Smelly Because of My Stoma

One of the mental struggles I had to get over was the feeling that I was smelly or dirty. I would say how I perceived myself was my biggest hurdle during my time with a stoma.

All your life you go to the bathroom a certain way. And sure, people have some hang-ups and get nervous about farting in front of people or going to the bathroom and having a stinky poo. But for the most part, it’s just a natural part of life. Everyone takes a shit.

Feeling Dirty

But suddenly you’re going to the bathroom a vastly different way. I have a stoma, a part of my intestine, sticking out of my stomach and an ostomy bag catches everything that comes out. When the bag gets heavy, I empty it into the toilet, which is sometimes messy.

When I empty my bag, the contents splash into the toilet and can cause a mess. Once I’ve emptied the bag, I have to clean the tip, both the outside and inside, and then roll it up and close it. Sometimes I have to clean myself up too.

And every time I come out of the bathroom after having struggled to keep things nice and neat, I feel dirty, icky, and angry. I feel like I’m covered in shit even though I’m not.

Do I Smell?

Ostomy bags are really simple but technologically amazing. Because no smell gets out. I swear you can’t smell anything. But you imagine that it does. Because you’re so jarred by the difference.

When I first came back from the hospital I was constantly sniffing and asking everyone “I smell right?” and everyone would tell me “No, you don’t smell, it’s just in your head.”

Anytime I smell something bad, I automatically assume it’s me. On the way home from Walnut Creek, you pass a refinery, which smells like sulfur. I panicked thinking my bag leaked.

This is My Natural

I have to get over this feeling that I smell and that I’m dirty. That’s the mental struggle I have to overcome in this healing process. I have to recenter myself and not compare myself to others or even to my past or future self. This process is natural for me at this moment in time. Accept it.

Confusion: Do I Still Have Ulcerative Colitis?

I still to this day will get confused about how I talk about my ulcerative colitis. If you watch my Facebook Live videos, I talk like I don’t have it anymore. Because that’s what my impression was at the time. And doctors talk about it differently too. So, I have found no definitive answer.

I was told that removing my colon was curative surgery and that I don’t have ulcerative colitis anymore. But I’ve found that that’s not necessarily true.

The basic fact is, it’s not really the colon that is the issue. It’s the immune system, which there is no “fixing” at this current moment.

By removing the colon, you are getting rid of the largest affected organ. But there’s a saying in my family now: “if you still had your colon, you’d be really sick right now.”

I get enough secondary symptoms that they can affect my daily life. These include

  • Fatigue
  • Joint and muscle aches
  • Fevers
  • Stomach cramps and spasms
  • Abdomen pain
  • Inability to release gas

I go through periods where I can tell my body is going through a flare. And I feel sick, but not nearly as sick as I would be if I had a colon.

Pouchitis and Future Fears

Before my surgery, I didn’t do any reading (blogs, medical articles, research) because I didn’t want to psych myself out.

I stopped following other bloggers who write about their j-pouches because some of them have switched back to a permanent ostomy. And that scared me. In order to go into the second surgery with some peace of mind, I stopped reading about failed j-pouches.

35% percent of people will get pouchitis, which a round of antibiotics will usually fix. But 5% of people can experience reoccurring pouchitis. If it’s bad enough, the only option is to have a permanent ostomy. And I am not ready for that.

I like to compare it to how most people feel when they hear I’ve had my colon removed. They think it was a hard decision for me and it’s difficult for them to grasp that it was an extremely easy decision because of everything I suffered through.

I’m them at the moment when I consider the possibility of a permanent ostomy. I can’t understand it and it seems like an incredibly hard decision that I’m not certain I could make. Hopefully, I won’t ever have to.

But when I have to change my bag so often, it makes all my fears about the future come into focus. It exposes all the things in my life that I think I’m okay with but that I’m actually not. I’m not okay with my stoma and ostomy bag.

Fluoroscopy Procedure

The first surgery raised my standard of living by leaps and bounds. But soon I’m moving on to an even greater improvement: ileostomy take-down surgery.

After this surgery, I won’t have a stoma and can go to the bathroom like a normal person. In order for the surgery to get approved, my j-pouch has to be inspected.

What is a fluoroscopy imaging test?

On August 1, 2016, I had a fluoroscopy imaging test done, which shows a continuous x-ray image on a monitor. The radiologist is right next to you looking at the monitor. My radiologist was very friendly and turned the screen towards me and explained what I was seeing.

It was fascinating to watch a moving image of my j-pouch working. And it was clear that my j-pouch had no leaks so my August 30th surgery is moving forward. However, my fluoroscopy procedure did not go as smoothly as it should have.

Typical Fluoroscopy Imaging Test

Typically, a radiologist inserts a barium contrast enema solution through the stoma or anus with a catheter. As the solution flows up and into your j-pouch, the radiologist can see whether there are any leaks from tears or fissures.

First Try: Through the Stoma

First, there was some confusion on what my surgeon ordered. The radiologist couldn’t read my surgeon’s handwriting. Normally, the radiologist told me, he inserts the catheter through the anus.

After decoding the writing, he determined that my surgeon wanted the catheter to be inserted into my stoma. This meant that I had to take my bag off and lay on my back on the very cold and very hard x-ray table.

With my bag off, I had barium contrast solution and bright green bile erupting out of my stoma like Mt. Vesuvius. I consider myself lucky that I hadn’t eaten. Otherwise, it would have been even messier and smelly as well.

The radiologist also had to find the right hole on the stoma: one leads down to the j-pouch and the other leads to the upper intestines. But he couldn’t find the j-pouch hole.

To be fair, I can’t even see the holes. They are so incredibly tiny that even when solids are flowing out of them, it can be hard to pinpoint where they are.

Because he couldn’t find the j-pouch hole, the solution kept flowing upwards, not downwards into my pouch. He tried contacting my surgeon, but he couldn’t be reached.

Second Try: Through the Anus

The radiologist asked how long ago my surgery was and made the decision that enough healing time had passed. By doing the procedure through the anus, the radiologist wouldn’t risk disturbing the staples that connect my j-pouch to my anus. Everything should be healed and permanent at this point.

So, I was asked to turn on my side, which made my stoma become even more active. Luckily this technique worked really fast and they got the image they needed.

But by this time, almost two hours had passed. And I’m soaked, chilled to the bone, and extremely sticky from the barium contrast solution. My hips and back hurt a lot too from having to lay on the hard x-ray table for so long. And my stomach felt weird because, besides the barium contrast solution that was pumped into me, I also had a lot of air pumped into me.

Some x-rays were taken before the procedure, during, and the radiologist also wanted post-procedure x-rays as well.

So, I had to get up. As the technician was trying to help me get untangled from the soaked gowns and blankets, she said, “Oh my gosh you really are soaked. Oh my gosh, I can’t believe you’re not freaking out.”

After getting up, I cleaned myself up in the bathroom as best I could, put another bag on, and got some more x-rays done.

The whole process was exhausting. I got home, took a shower, and finally ate. But I got a crushing headache that had me curling up in bed.

Travel Complications

I didn’t do much traveling with my stoma. The first month and a half were all about recovering from surgery and regaining my strength.

But eventually, I started running and being more active and travel didn’t seem like that big of a deal. However, there are a lot of logistics to think about when traveling with a stoma, such as

  • When and how much to eat and drink
  • Where to stop
  • The effects of elevation change
  • What to pack in your ostomy travel kit
  • How to change your ostomy bag in different types of bathrooms
  • Getting through security

Dixie Chicks Concert

Two women smiling into the camera for a selfie.
Picture of two women looking at the camera on a crowded outdoor concert field.
Two women smiling into the camera for a selfie.

On July 13 I went to a Dixie Chicks concert with my family. On the way to the venue in Olivehurst, we stopped off at a Mexican food restaurant to eat.

I was unsure what to eat and decided to avoid lots of fiber. That way, I wouldn’t have to worry about an obstruction. I ordered cheese enchiladas and made sure not to overeat.

Concert Security

Once we got to the venue, we had to wait in line to get past security. As soon as I saw how serious they were taking security, I began to be worried.

My sister’s friend was in front of me and she had some pills in a bottle. The security woman opened the bottle, dumped the pills in her hand, examined them, and said “these pills don’t match the bottle.” Because there wasn’t a prescription, the pills were tossed.

Ostomy Kit

When you have a stoma, one of the things you always carry with you is an ostomy kit. Inside of it is

  • Trash bags to put the old ostomy bag in
  • Paper towels for clean up
  • Skin wipe removers for removing ostomy bags
  • Skin protector seals for irritated skin
  • Ostomy bag rings for bags with hole openings that are too big
  • Extra bags
  • Scissors for cutting the ostomy bag holes to the right size

I was mostly concerned about the scissors but I was also worried she would toss the whole kit in the trash.

My First Time Flashing Someone

When it was my turn, my ostomy kit was immediately the only thing that needed further examination. The security guard took out my ostomy bags and opened them, flipping them over, asking “What are these? What are they for?”

This was a very hurried atmosphere because all the guards were trying to get people through as fast as possible while still doing a good job. It was loud and extremely hot, and I could tell she wasn’t comprehending my explanations of what an ostomy bag is and how it’s used.

Everything about the bag was suspicious to her and I could see the moment she was thinking that she should just toss the whole thing in the trash. I was wearing a dress with some shorts underneath so I did the only thing I could think of: I flashed her.

When she saw a bag attached to my stomach like the ones she was just handling, she practically jumped out of her skin and shook her head in disbelief. But she got it and gave me back my kit practically crying how sorry she was.

I kept telling her it was okay and not to worry about it. She was just doing her job and I wasn’t angry at all. After all, I myself couldn’t comprehend what a stoma and ostomy bag was even after a meeting with a surgeon.

But I learned my lesson about traveling with a stoma when there are security concerns.

Being Scared of the Crowd

When I got up from my spot on the grass and walked around to go to the bathroom, I felt unsafe. It was so crowded and there were many times when I thought I was going to get an elbow right in the stoma.

While the stoma itself doesn’t have nerve endings, my skin around it is very sensitive. I felt like I needed a protective bubble around my abdomen.

Changing Your Ostomy Bag in Public-A Discussion on Handicapped Bathrooms in the US

I follow Sam Cleasby of So Bad Ass on Facebook. She is a blogger and public speaker from Sheffield, UK who raises awareness of IBD and ostomies.

There was one post she shared about handicap restrooms and ostomy bag changes that really made me think about handicapped bathrooms in the US and how horrible they are for a person like me.

Handicap restrooms in the United States usually just mean a bigger stall. That means they don’t have their own sink, mirror, counter, or trash, which are all things you need to change your ostomy bag.

Without those necessities, I would be forced to find a way to change my bag in the stall. I could do it, but it would be very difficult. I hardly manage in the privacy of my own bathroom.

The other option is to change my bag at the sinks, which would mean doing it in front of people. And I’m sure someone would complain about that in America and I would get in trouble for indecent exposure or something.

The best option in America is family bathrooms. And newer establishments, especially in California, have those because they serve a lot of people:

  • Families
  • Handicap people
  • LBGTQ community because all family bathrooms are gender-neutral and serve everyone

But they aren’t everywhere and they still aren’t the norm.

Am I Handicapped?

Her post also made me think about how I have a hard time thinking about myself as a handicap person.

Because her handicap isn’t visible on the outside, she often has to justify herself to others for using the handicap bathrooms, parking spots, etc. People associate being handicapped with wheelchairs and other visible indicators.

But there are so many invisible diseases out there. Handicap means a circumstance that makes progress or success difficult.

Since being diagnosed with ulcerative colitis

  • I haven’t been able to keep a job
  • My daily schedule is often derailed because of my symptoms
  • There are many jobs that I am not capable of doing because of my disease
  • Doing normal things takes extra planning
  • I can’t answer very many questions about my life without coming back to ulcerative colitis, sacroiliitis, my stoma, or my j-pouch

I always feel like I have to justify my life and the reason I live the way I do. Sounds like a handicap to me.

Car Trip to Oregon

Every summer, my family makes a trip up to Reedsport, Oregon to visit our grandparents. This summer, I knew that I was going to have to put in some extra planning and patience.

I started reading about different approaches to traveling with a stoma and ostomy bag and the advice varied greatly. Some people say not to change your routine and others suggested not eating at all or eating very little.

I decided to go the eating very little route because I didn’t want to stress about my bag filling up with air or waste and me having to empty it every two hours.

My fluoroscopy appointment was on Monday, I decided to have a very light meal on Tuesday, and nothing on Wednesday.

The trip is about eight hours and I knew I would be uncomfortable. Unfortunately, seatbelts sit right on my incision site, and my ostomy bag is trapped by it as well.

We started the strip and I became very nauseous. I didn’t throw up but I did a lot of verping (burping bile up). The nausea was especially bad while climbing elevation. Around the halfway point there aren’t any more hug elevation changes and I started to feel better.

On the return trip, I experienced the same symptoms: nausea while climbing elevation and a decrease in symptoms once the elevation changes stopped.

Complications

One of the reasons I may have had problems traveling to Oregon was that I was in the beginning stages of acute pancreatitis. I have a whole separate post on that but it is important to be aware that pancreatitis is a potential complication from abdominal surgery.

My story continues in Part XIII – Pancreatitis

My Whole UC Story

You can read my ulcerative colitis story in order or you can browse all my ulcerative colitis and health-related posts here:

Other Posts You May Enjoy

Part III – UC and Severe Back Pain

December 14, 2014

UC Planning Realities: Trying to Write and Defend a Thesis

March 26, 2015

Post UC Flare Routine

March 26, 2015

Making Travel Plans with UC

September 9, 2015

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