How I Managed My Diverticulitis, Burst Colon, and Colostomy
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 followed by three hours of projectile vomiting what looked like fecal matter. It was incredibly hard to walk, and I could barely stand up straight.
I managed to make it to a clinic. The doctor, amazed that I was able to walk there, said, "I think your appendix burst—you'll need to go to the emergency room straight away!"
My First Visit to the ER: I Had a Burst Colon
During my surgery, the doctors discovered my colon had burst, sending feces swirling around my abdominal cavity and filling it with puss that coated my organs. However, they couldn't find the perforation the first time around. They removed the puss, closed me up, and sent me home a few days later with some medications.
At the time, the doctor told me I had diverticulitis, a condition in which pouches form on your colon that can become inflamed and burst.
The following night, I started throwing up again. After five days of staying in bed—in pain and with nonstop vomiting—I went back to the emergency room.
My Second Visit to the ER
This time, when I got to the ER, they rushed me through quickly. They hooked me up to an IV, took some blood samples, and placed me on a heart monitor for the first time. The doctor came within 15 minutes and gave me morphine (it only reduced about 75% of the pain).
In order to better understand what condition I had, they took some scans of my abdomen. The on-call general surgeon had trouble interpreting the results, so she deferred to a gastroenterologist, a specialist of conditions of the digestive tract.
The scans revealed a whole mess of problems: damage to both my large and small intestines, an abscess on my esophagus, and what appeared to be a hole in my bladder. My abdominal cavity had also filled with pus again. Despite the severity of my condition, they couldn't operate right away—my body wasn't stable enough.
My Second Surgery
Ten days after getting the results from the scans, my body was ready for surgery, and I was nervous; at this point, I was aware that people with my condition can die. But I had a great doctor and a lot of faith.
My specialist and surgeon, Dr. Ahmer A. Karimuddin, sat down with me and told me that what I had was serious. However, he said he was confident in his ability but confessed that he wouldn't know exactly what was going to happen until he took a look. He started talking about stomas and what that meant—I was kind of lost and didn't understand what he was talking about. This is why, when you're a patient, it helps to have someone else with you to hear what you can't process.
Post-Surgery: I Found Out I Had 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—very soft. I didn't understand.
The doctor came in and told me that the surgery went well but that there were complications:
- I was allergic to all the antibiotics they had been giving me, so they took some tissue samples and sent them to a lab. The results would be back in 12 days.
- Two sections of my intestines were in really bad shape, so he removed parts of both my small and large intestines. He was confident that my intestines would heal, but for now, he performed a colostomy. He hoped to do another surgery within the year to reverse the procedure.
He pulled back the bandages to reveal the tender spot: a stoma. He hoped that it would just be 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 had this stoma. She was going to teach us—me and my husband—how to care for my new stoma.
What Is a Stoma?
As the nurse changed my bandage, she explained what a stoma was.
Simply put, part of my large intestine was now sticking out of my abdominal wall, channeling fecal matter to the stoma rather than the rectum. The fecal matter would then be collected in a disposable colostomy bag. I was shocked, humiliated, and terrified, to say the least—there aren't enough adjectives to describe how I felt at that moment. I couldn't imagine myself living with this for an extended period of time. However, over time, I learned to accept my condition and actually became really interested in it.
You can read more about my experiences with a colostomy bag later in the article.
Thankfully, I didn't have to live with a colostomy for too long. In December 2010, my colostomy was reversed. In other words, the surgeon reconnected my colon—I would be able to make normal bowel movements again! Once they determined that I was healing properly, I was able to go home!
Complications of Diverticulitis
The biggest challenge of having diverticulitis—before and even after the colostomy—was dealing with bowel obstructions, when you are unable to pass fecal matter. I had 18 bowel obstructions from May 2010 to February 2012 and needed extended hospital stays each time.
After half a dozen admissions with a bowel obstruction, the enterostomal therapist, or ET, talked to me about making dietary changes. She made it clear that I needed to control the types of foods I was eating; nuts, seeds, chips, popcorn, and carbonated drinks were off limits if I wanted to heal well.
I started to strictly control my diet. In addition to her list, I added milk and wheat to my list of foods to avoid because I noticed they cause me discomfort after digestion. I can now detect a problem well-enough in advance to adjust my diet quickly. I haven't had any bowel problems since Feb 2012.
My Tips for Recovering From Diverticulitis
I monitor myself very closely and adjust what I eat according to how my body feels.
Here are some tricks that have helped me:
- Drink lots of water
- I control loose stools by eating a banana or mashed potatoes (more fiber).
- I control stomach tightening or extremely hard bowels with Senekot, or another stool softener, 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 to responsibility for my health and healing path. When I go 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 90% of the time for an extra pair of ears.
My Experiences With a Colostomy Bag
Having a Colostomy Bag Changed My Life
My husband was unbelievably good with the whole mess. He said it was like cleaning a baby's bottom and never complained once.
On the other hand, I still couldn't even look at it. The site of this bright, pink, round, skinless flesh was a reminder of the reality that my life was never going to be the same. It haunted me and made me mad.
All dignity had left the building. I needed regular bag changes, and at first, I relied on my husband to help. There was an unpleasant smell that leaked out when the bag needed to be changed. Even changing clothes was humiliating at first.
After about four 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 slowly became comfortable with the process and was finally ready to embrace it; well, as much as I could.
As I became more comfortable with my new situation, I became obsessed with my bowel. Yes, obsessed with what was happening in my bowels. I started watching how the stoma moved. All the time. It was better than live television.
The stoma would protrude out of the opening in my skin—sometimes as far as an inch or three. It was still bright pink and glistened in the light. When it decided to tuck into the opening, it lay flush with my skin and appeared wrinkly.
During bag changes, its actions were unpredictable. Every so often, some feces would come out during the change; a slow stream of solid, about 1 centimeter in diameter, would start pushing its way out. It wasn't as messy as I anticipated; it was easy to wipe away with a tissue since it was always a soft solid. It was a crazy process to watch, and I learned that there was a lot of things I couldn't control with regards to my body.
I Learned What My Body Actually Digests
My curiosity led me to look into my colostomy bag to see what came out. I made sure we used clear bags that I could see through. It sounds disgusting, but it was actually quite interesting.
- Tomato skins were rolled up into little tubes and stay whole.
- Seeds came out completely undigested, and it takes a long time for them to get through our intestinal tract.
- Gummy bears and gummy worms come out undigested (I've only tried this once!)
- Long strands of fibrous food that were not ground or chopped well before I ate them came out in long strands.
One day, I accidentally swallowed a cherry pit. That sent me into a slight panic, so I tried to ease the anxiety by turning 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!
The First Time I Changed My Colostomy Bag by Myself
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 laying in bed watching a movie when my bag filled up. It got so full that it started to leak. I knew I was going to have to do this myself because I was on my own.
I sat on the toilet and removed the bag. Then, I stood in front of the mirror so I could see more clearly. As I cleaned around the outside edge of the stoma, I nicked it and started to bleed. I panicked. There wasn't a lot of bleeding, but it was still bleeding. I held the towelette tightly between my skin and the edge of the stoma. Thankfully, it stopped after a minute or two.
I carefully got a new bag on and never cut myself again.
The First Time I Went Out in Public With a Colostomy Bag
One of the most horrifying experiences with my colostomy that I'll never forget was the first time I went to a public event with the bag on.
I had been housebound for months and had missed out on numerous 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 had a dance recital coming up, and she really wanted me there, so I agreed to go. I rushed to the mall and tried on dress after dress until I found one that could hide the bag.
When the big night came, I carefully got ready and was actually excited to go. We arrived at the theater and went to our seats, which were fairly close to the front and center of the stage. Her performance was scheduled for the midpoint of the program.
About 20 minutes into the show, I smelled gas. I didn't give it a second thought until I noticed that it didn't go away. Then a horrifying thought came into my head: could it be me?
I subtly reached under my dress and felt the seam where my bag met the stoma. It was wet. It was a true OMG moment.
I leaned over and whispered to my husband 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.
When I got to the washroom, I discovered that the glue was not holding my bag in place, and the feces 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. I was glad that no one walked into the washroom as I quickly tried to come up with a solution.
I reattached the bag as well as I could and found a couple of staffers to ask 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. I wrapped the colostomy bag around my waist with the tape. What a sight!
I slipped back into the theatre and watched my girl's dance recital from the side aisle behind a post. It took a while for me to go back out in public again. When I did, I made sure I had back up supplies with me at all times.
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.
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.
The information provided in this article is not a substitute or replacement for professional medical advice. Please consult your physician or alternative healthcare 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.
Do you know anyone who has or has had to wear a colostomy bag?
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
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