Bowel Obsession: What Happened After My Colon Burst
Stoma - Your Inside Is Out
It all started in March 2010. That's when I became bowel obsessed. I had just spent 22 days working in Vancouver at the 2010 Winter Olympics.
Three days later, I wasn't feeling well and went to bed early. The next morning, I woke up with excruciating pains in the lower right side of my belly. That started 3 hours of full on vomiting what looked like fecal matter. It was incredibly hard to walk, and I couldn't straighten up fully.
Amazed that I walked there, the doctor at the clinic said "I think it's a burst appendix - you'll need to go to emergency straight from here".
By the end of March I had a stoma sticking out of my stomach, an inch from my belly button.
- Diverticulitis - MayoClinic.com
Diverticulitis — Comprehensive overview covers symptoms, treatment, causes of this common colon disease.
To explain it very simply, I had a hole in my bowel. This is called a perforated bowel.
In surgery they discovered my colon had burst and sent feces swirling around the inside my body cavity. It was filled with puss that surrounded my organs.
They couldn't find the perforation. They removed the puss, closed me up and sent me home a few days later with medications.
The doctor told me I had Diverticulitis.
I had never heard of it, did not know I had it and was genuinely surprised.
The next night I started throwing up again. After 5 days of staying in bed in pain and 3 nights straight of vomiting, I went back to emergency.
Emergency - Again!
This time when I came into emergency they rushed me through quickly. I was taken in and hooked up to an IV, they drew blood, and even put me on the heart monitor for the first time. The doctor came within 15 minutes and then they gave me morphine. The morphine only helped 75% of the pain.
Next were the scans. They sent me places and took pictures of my insides. It was confusing and the details get blurry, but this I know...
The on call general surgeon passed my results onto a specialist. She said she couldn't concur with what the radiologist was saying about my xrays. She said there was so much going on inside of me, that a specialist needed to see the test results.
It was the best outcome possible. In the end the specialist saved my life, and the journey had just begun. He read all the test results and agreed with what the radiologist had seen.
There was damage to my large and small intestines. There was an abscess on my esophagus. They thought there was a whole in my bladder. My cavity was filled with puss again. But they couldn't operate right away. My body wasn't stable enough.
Ten days later my body was ready for surgery and I was nervous. I knew by this point that people often die from my condition. But I had a great doctor and faith.
My specialist and surgeon, Dr Ahmer A. Karimuddin, M.D., M.A.Ed., F.R.C.S.C., sat down with me and told me it was serious.
He said he was confident in his ability but he wouldn't know exactly what was going to happen until he took a look.
When he started discussing a stoma and what that meant, I was kind of lost and didn't understand what he was talking about.
*This is why sick people always need to have someone else with them at meetings; to hear what they can't digest.
So into surgery I went.
What the Heck is a Colostomy?
When I woke up there was a large bandage gently covering my left stomach area. I touched it and it was kind of tender underneath, soft. I didn't understand.
My husband was with me and smiled, asked how I was feeling. I just wanted to know what had happened.
The doctor came in and told us the surgery went well but there were complications.
- I was allergic to all the antibiotics they had been giving me, so they removed tissue samples and sent them to a lab. The results would be back in 12 days.
- Two sections of my of my intestines were in bad shape, so he removed part of my small and part of my large intestines. He was confident it would heal but for now he gave me a colostomy. He explained to me that he hoped to do another surgery within the year to reverse the procedure.
I thought I understood.
This is what a stoma looks like
Then he pulled back the bandages.
As tears rolled down my cheeks, I heard him say he hoped it was temporary.
I still didn't understand what I was looking at as he left the room.
Then a nurse came in. She was the ostomy specialist who would work with me for as long as I needed.
She was going to teach us, that is my husband and I, how to care for my new stoma.
I wondered if I was ever going to be able to look at it again.
I Need a Bag???
So what had happened? The nurse explained as she prepped me for a bandage change.
Simply put part of my large colon was now sticking out of my stomach so I had a place to send my poop.
My rectum was closed for business. Hopefully temporarily.
As a result, I would have to wear a colostomy bag so the stoma could put the poop somewhere.
To say I was shocked, surprised, upset, humiliated, terrified, and horrified is just the tip of the iceberg.
I couldn't believe my eyes. I
couldn't believe this was happening to me.
How was I ever going to live with this and why did it happen?
I still didn't understand.
I freaked and not really quietly.
This was no joke, my life just took a major left turn and I wasn't even there for it.
The Stoma Changes Sizes
My husband was unbelievably good with the whole mess. He said it was like cleaning a baby's bottom and never complained once.
At first I couldn't look at it. The site of this bright, pink, round, skinless flesh was a reminder of the reality that I my life was never going to be the same. It haunted me and made me mad ... for a while, a long while.
Regular bag changes that relied on someone else to help. The smell that leaked when the bag needed to be changed. Even getting clothes on was humiliating at first.
All dignity had left the building.
Then one day, after about 4 months of wearing the bag, I started to become curious.
I started watching instead of looking away when my husband changed the colostomy bag. I started to become comfortable with the process. After months of being cared for and refusing to be part of this new extension of my body, I was finally ready to embrace it, well as much as I could.
My mom's words in my head kept telling how far medicine had come. Years ago I would've died from this and they wouldn't have been able to help. I knew that.
After I was released from the hospital, I met a man who was in a hospital room with 3 others who all had had perforated bowels resulting in surgeries ... and all 3 men died.
Maybe this wasn't so bad. Time to learn something new, now that I could.
Bag Lady Has New Meaning
Ostomy Bag Change
Bowel Obsession Starts Here
As a result of becoming comfortable with my situation and having the courage to look at what was going on, I became bowel obsessed. Yes, obsessed with what was happening with my bowels.
I started watching how the stoma moved. All the time. It was better than live television.
The stoma would push right out of my stomach, sometimes as far as an inch or three. It remained a bright pink, looking like a hose about 1 inch in diameter, shiny and clean, glistening in the light reflecting off it.
When it decided to tuck in, it would withdraw and sink back into its hole in my stomach, shriveling and becoming wrinkly, laying flush with my skin.
During bag changes it was often hit or miss as to the action we'd see. Every so often poop would come out voluntarily during the change (I guess it wanted fresh air!).
The stoma would push out of my stomach and a slow stream of poop, about 1 centimeter in diameter, would start to rise and push it's way into freedom. Not the mess I anticipated, it was easy to wipe away with a tissue as it was always a soft solid.
It was a crazy process to watch and I learned that my body is one thing I have no control over.
Inside The Bag
What Goes In Must Come Out
The second part of the obsession for me became looking into the filled poop bag to see what came out and in what form. I made sure we used clear bags that I could see into. It sounds disgusting but it was actually quite interesting.
I began to learn about how and what my body actually digests.
- Tomato skins roll up into little tubes and stay whole.
- Seeds come out of our bodies completely undigested and it takes a long time for them to get through our intestinal track.
- When we eat our food however it gets swallowed, if you don't break it down, is how it comes out at the other end.
- Gummy bears and worms come out undigested (only did that once!)
- Long strands of fibrous food that were not ground or chopped well before I ate them, came out in long strands.
The human body is an amazing machine.
One day, by accident, I swallowed a cherry pit. That sent me into a small panic, so I turned it into a game with my kid. We tracked how long the cherry pit took to get through my body. 42 hours later a cherry pit popped out into the bag and I was relieved and my girl danced around the room!
The biggest challenges that have come with my condition, even to this day, are called bowel obstructions ... and I hate them.
I experienced bowel obstructions from May 2010 to Feb 2012. I had 18 during that time and was admitted to hospitals for extended stays each time.
My Stoma and Me
On My Own
My husband patiently retaught me how to deal with the bag myself. He was amazing.
I'll never forget the first time I tried to change it myself.
I was at home alone laying in bed watching a movie and my bag fill up. It got so full it started to leak. I knew I was going to have to do this myself, I was on my own.
I went into the bathroom and started the procedure.
I sat over the toilet and removed the bag. Then I stood in front of the mirror so I could see. As I cleaned around the outside edge of the stoma I nicked it. It started to bleed.
I panicked. There wasn't a lot of bleeding, but it was there. I held the towelette tightly between my skin and the edge of the stoma. It stopped after a minute or two.
I carefully got the bag on.
I never cut myself again.
First Time Out
The other horrifying experience that won't leave me was the first time I went to a public event with the bag on.
I had been house bound for months. I had been missing out on adventures with my family and friends and, although I didn't mind, my daughter did.
So, I decided it was time to venture out. My daughter was having a dance recital at the University theatre and she really wanted me there. I agreed to go.
I had my husband take me to the mall. I tried on dress after dress until I found one that hid the bag.
When the big night came I carefully got ready and was excited to go.
We arrived at the theater, got seats fairly close to the front and center of the stage and got comfortable. The program indicated her group would preform halfway through the evening.
I Smell Something Funny
About 20 minutes into the show I smelled gas. I didn't give it a second thought until it didn't go away. Then a horrifying thought came into my head. What if if was me.
I subtly reached under my dress (yes, close your eyes and picture it). I felt the seam where my bag met my stomach. It was wet.
Yes it was a true OMG moment.
I leaned over and whispered in my husband's ear that I was in trouble and needed to go to the washroom. I left, leaving a trail of terrible odour behind me and quietly panicking as I moved my way to the theatre doors.
The situation? The glue was not holding my bag in place and poop was pushing it away from my body. The bag was also full.
I emptied the bag into the toilet, a skill I had gotten quite good at, then looked at myself. Glad no one was going to walk into the washroom I quickly tried to come up with a solution.
In my industry gaffer tape fixes just about everything, so I attached myself temporarily went looking for some.
I found a couple of staffers and asked them if they had a first aid kit. I was looking for tape. They informed me they couldn't help me without calling an ambulance, but they'd be happy to get one for me. We discussed my situation a bit and I convinced them to give me some masking tape.
Back in the washroom I wrapped the colostomy bag around my waist with the tape. What a sight! It was the first time I laughed all night.
I slipped back into the theatre, watched my girl's dance recital from the side aisle behind a post, and left in a taxi.
It took a while for me to go back out in public again.
When I did I had back up supplies with me at all times.
Info and Support
- UOAA Ostomy Information and Care Guides
UOAA is an association of affiliated, non-profit, support groups dedicated to improving the quality of life of people who have or will have an intestinal or urinary diversion
Colostomy Bag Removed!
In Dec 2010, my colostomy was reversed.
In English, my colon, or large intestine, was put back together. I could now poop in the toilet once again!
And when I healed enough I got to go home. It was a great day. For a week.
Because back I went into the hospital with another obstruction.
After half a dozen admissions with a bowel obstruction, the Enterostomal Therapy specialist ("ET" or the "bag lady" specialist) had a discussion about food with me.
She made it clear that I needed to control the types of foods I was eating. Nuts, seeds, chips, popcorn, gaseous drinks and foods were off the list if, I really wanted to heal.
I believed her and started to strictly control my diet. Along with her list I added milk and wheat to my list, as they cause me discomfort after digestion.
I can now detect a problem well in advance and I adjust my diet quickly. I haven't been admitted for bowel problems since Feb 2012.
The ET specialist has been working with patients like me for almost 15 years full time.
Ostomy Supplies are Big Business
That shocked me. My experience is not an unusual one.
I believe disfunctional colon health of North Americans is a disease that is a quiet killer. I believe the problems with bowels and colons is reaching epidemic proportions.
So does my ET nurse.
Are we are not hearing about the huge numbers of people experiencing colon and bowel diseases because the subject matter is poop?
We have been taught that poop, poo, our bowels, sh*%, feces, fecal matter and all the other synonyms are disgusting, uncomfortable and just not okay to talk about openly.
A taboo has been put on a subject that touches all of us, we just don't know it.
Colostomy Bags For All
You Are Not Alone
After what I've learned and experienced, I guarantee that someone you know, is suffering from a form of colon or bowel disease, whether you actually know it or not.
Most likely they either have, had, or will have to wear an ostomy bag.
You won't know unless you are very, very close to that person or that person has completely dealt with the emotional and mental issues that come with the diagnosis.
Those issues are hard to get past.
It took me 4 months to be able to look at myself.
For those of you experiencing or who have experienced what I have I leave you with this.
You will get through it.
It will change who you are but you will still be you in the end.
It's an unbelievably horrific process to go through, but you will come out the other side a strong, humble person who appreciates life in a whole new way.
This is where the saying "if it doesn't kill you it will make you stronger" really is true.
Do you know anyone who has or has had to wear a colostomy bag?
I am happy to report that I have had no further bowel obstructions since 2012.
I monitor myself very closely and adjust what I eat according to how my body feels.
Some tricks I'd like to share:
- drink lots of water
- I control loose stools by eating a banana or mashed potatoes
- I control stomach tightening or extremely hard bowels with Senekot and watermelon
- finely cut salads help keep me regular
- I listen to my body and adjust way before there's the chance of a problem.
- I have become responsible for my health and healing path. When I go a to the doctor for a problem, he listens because he knows I know my body best.
- I listen to my doctor and take someone with me if 90% of the time.
I hope my experiences can help shed light on this incredibly scary process.
There is an end, it just takes time to get there.
I am happy to answer questions and lend support if needed. Please feel free to comment.
The information provided in this article is not a substitute or replacement for professional medical advice. Please consult your physician or alternative health care provider before taking any herbal supplements, home remedies, new products or changing your health regime. Even though we are responsible for our own health, we need the guidance of trained professionals.
© 2012 eye say