Having a stoma revision & hernia repair: A patient’s perspective
My permanent colostomy was placed Feb 16, 2018 as a result of cancer. I’d never seen a stoma in person, just images I’d found online. To be honest I didn’t research very much as I didn’t want it to interfere with my mental health. I had a huge 8.5 hour surgery that involved more than just my stoma placement and needed my mental game to be as strong as possible. As much as “Dr. Google” can help us it can also drag us down.
Since my surgery was scheduled I had my placement done a few days prior. The nurse had me move and bend in various ways to figure out the best spot for my sigmoid colostomy. The nurse had a model stoma that looked like a ball of pink chewing gum to me. I went in for surgery early that morning and said goodbye to the old me, goodbye rectum…hello colostomy – for life!
Once I was a little more fluid I took a look at the stoma on my left side. I could see it since I was wearing a clear bag as (most of us) do post surgery. The clear bag is needed so nurses and doctors can see if the stoma is working and/or if it needs tending to. I didn’t have a bowel movement for a while since I was extremely medicated. Medications have always slowed things down for me post surgery which can be a pro and a con. At that time I had so much to deal with from mobility issues, drains, pain and more it was kind of nice not to have to learn how to manage my colostomy straight away. My stoma didn’t really look like the model the nurse or Dr. Google had shown me.
My stoma was flat and flush to my skin and I was surprised. Where was this gumball looking intestine I expected to have? Since I was cut bra line to bikini line the surgeon had a lot to deal with. When it came time to getting the intestine pulled through and my stoma created, simply put it wasn’t pulled out long enough. I don’t really know if the word pulled out is the medical way to explain it but it’s how it makes sense to me and how I explain it to others. I was extremely swollen, had 70+ staples, 6 drains and wounds galore. My hospital stay exceeded 3 weeks.
Over the next 6 years my stoma, who I named Winnie after Winnie the Pooh but now Poo, was troublesome. No matter what I did stool would stay around the stoma on my skin since it had no reach to get down the bag. I also figured out my stoma retracted inwards so that also added to the complexity of my ostomy life. At one point in 2020 my stoma and parastomal skin was so infected I could hardly stand and crawled in to emergency for help. They too were extremely shocked and even biopsied the area to make sure it wasn’t cancer which it wasn’t. I was infected by my fecal matter hanging around for way too long. Trust me when I say I tried it all from different fits to rinsing out the bag. The only way I managed was doing a complete change once the bag was full enough. I wore a 1 piece and because I removed it daily, my skin health improved and eventually super healthy. Shorter wear time meant less issues.
As a result of my stoma retracting I experienced cramping type pain with larger output. Add in a parastomal hernia and I was a mess. I was managing but barely. I waited for years for this hernia repair and stoma revision and finally got a date – May 15, 2024. 6 years 3 months later almost to the day. My hernia surgeon is said to be one of the best in Canada, hence the long wait along with the pandemic. They weren’t moving my stoma placement which was a good thing recovery wise. Closing up a stoma site and making another would be harder to heal from. Since I had this hernia (and an umbilical hernia repaired in 2019) for so long I was worried about how my skin would look post repair. I advocated for myself and reached out to the plastic surgeon who did some work on me during my life saving pelvic exenteration surgery in 2018 and he said YES. Along with my hernia repair and stoma revision I had a panniculectomy (skin removal) and the surgery lasted 6 hours. The two doctors working together.
I’d been working on my physical health for the 2 years prior to surgery. I’d lost a lot of weight, changed my eating habits, exercised 5x a week and gained muscle. Because of the work I did I knew I’d likely recover from this surgery quicker and better. I woke up in recovery and as medicated and out of it as I was at the time, the first thing I did was feel for my hernia bulge. It was gone and tears rolled down my face. The nurse asked what was wrong and I told her I was happy. She laughed and said that’s because your epidural is working wait till you feel the pain later. I absolutely love humor in situations like this and the nurse was on board.
I recovered in hospital for a week. No staples this surgery but instead dissolvable stitches which was amazing. My new stoma was pretty like the gumball I expected all those years ago. I’d written on my bag on surgery day “Dear Dr. Chiu, Please give me an outtie stoma and thank you for fixing my hernia.” I was told the entire OR team had a good laugh as they started my surgery and knew they had to get me the outtie I always wanted and to be honest, deserved. My new stoma is still named Winnie but sometimes Winnie 2.0.
As mentioned earlier my new stoma was in the original site and higher again since my hernia was gone. My ostomy bag hung lower and lower because of my hernia growth. It’s not only easier to deal with now because it’s an outtie, but also because I have easier access to it. Stitches are still around the stoma where it sits on the skin, but the tenderness has gotten better with time. I didn’t have any bowel movements for a while because of the medications, eating less and no exercise. After I was discharged and home I still only had gas and was definitely backed up. I had excruciating pain two separate nights and ended up the ER. My bowels eventually started moving with the help of soft foods, fluids and laxatives. I was using a walker, then a cane, learned how to roll out of bed and eventually walking on my own. I won’t lie to you, this surgery was no joke pain wise. Oh my was the pain real, more so from the panniculectomy, but I knew it would be worth it and improve over time and it did! 
A new stoma has meant a new ostomy bag system. For 6 years I wore a 1 piece as it was all that worked with my flush retracting stoma. Now I’m trying out the 2 piece life. I definitely see benefits of each and will likely rotate between the two, but mostly wearing a 2 piece. No ring just the flange/baseplate and the bag. One thing that won’t change with my colostomy life is not emptying. Not emptying has been a game changer for me and I won’t look back. My colostomy is ‘pretty chill’ and average 1 bag a day. I usually have one decent size bowel movement so manage this way quite easily.
I’m approaching 2 months since surgery and doing really well, better than I expected to be honest. Likely because I was in decent shape pre-surgery and because I’m not a surgery rookie. Having a good head space is so important for the winding recovery road. The stoma stitches are still dissolving and I’ll make a visit to my stoma nurse soon to find out if this is normal for my stage of healing. My hernia stitches have closed, my panniculectomy incision has scabbed over but I do have one open wound on my mid line. I’ve been going to wound care 3x a week the past month and it’s almost closed. As soon as it closes I can have a bath and swim which are big parts of my life. 
Often times with medical conditions and disabilities we think it is what it is. Suck it up and deal. I’m here to tell you as a 2x cancer survivor and ostomate you deserve to live life as best you can. Do whatever you need to get you there and seek help from professionals you trust. Get 2nd opinions if you need to. You matter. I’m well aware I’m different but I’m also aware that it’s ok to be different. Do I have down days, absolutely, but I’m alive and doing the best I can. You can find me online advocating on Instagram as Ostomate and the City or my website of the same name. I’m also fortunate to work for Inner Good, a company who understands what dealing with a life of illness is all about. If you’d ever like to chat call me call anytime.
