Memorial Day- May 29, 2023
A sunny morning has given way to a hazy afternoon. The light precipitation of cottonwood that has blanketed the neighborhood has finally tapered off after three days. My allergies have calmed down, no more swollen eye, no more nasal drip. The random yeast infection I developed a week ago (I haven’t had one in twenty-freaking years) has cleared. And the skin around my stoma looks good after a debacle with an off-brand barrier film prevented complete adherence of my pouching system, allowing waste to leak on my skin, making it raw.
All three of these incidents gave me minor heart attacks as I want nothing to get in the way of my reversal surgery on Wednesday. WEDNESDAY!!!! Surgery is less than 48 hours away. This is the last stop on the cure cancer train. I cannot wait. I am ectastic! I am so grateful.
The tumor removal surgery that I had on April 3 was also exciting, but in a very different, very nerve-wracking way. I knew that the remnants of tumor would be removed. I knew that I would wake up with a stoma. I knew that I would live with that stoma for the next eight weeks, minimum. I didn’t know if I would be in excrutiating pain afterward. I didn’t know if I would be bed ridden for weeks. There were a lot of unknowns. Here is what happened.
Prep the day before surgery consisted of a clear liquid diet. At about noon I began Suprep, a heavy duty laxative that clears out your bowels. It is the same medicine that can be given to prep for a colonoscopy. On top of that, I had to take antibiotics to prevent infection: neomicin and metronidozole every 4 hours. Thank goodness for zofran. I took one at the start of my prep cycle and another closer to the end. Even the memory of taking all of that medicine makes me feel mildly nauseated.
After a restless night of sleep, I arrived at the hospital with an exhausted enthusiasm. After check-in, one thing rolled right after another and the next thing I knew, I was in a recovery room, dazedly commenting on the moans and groans of the man in the recovery bay next to me.
The three and half hour surgery was completed without incident. I don’t remember the transport from recovery to my private room, but I do remember seeing my husband there, and wanting nothing else but to sleep. David kissed me goodbye as visiting hours came to a close and I could barely open my eyes to see him leave.
Sleeping in the hospital is kind of an oxymoron. One is awoken every ninety minutes or so for a blood test, medicine to be administered, a check of vitals, taking your meal order, delivering your meal, etcetera , etcetera, etcetera. I had a catheter for less than 24 hours, so I had visits to empty my catheter and my stoma bag.
During this surgery, I was filled with gas to make it easier for the surgeons to access my innards. This gas has a tendency to sit in your upper chest and shoulder areas, causing me discomfort in bed. We applied heat packs and once I started to get out of bed and walking, this dissipated.
I was out of bed the next morning, urinating on my own. Beware, if undergoing this surgery, your first trips to the bathroom may include shaking of your entire abdominal area as your muscles are in massive repair mode. I will never forget the look on my husband’s face when he returned to the hospital the next morning to find me sitting in a chair rather than in bed. I would get up and walk laps of the recovery floor with my husband, gaining my strength, getting my systems moving. I showered, I learned how to change my stoma pieces on my own, and by day 2 in the hospital, I was being discharged to go home.
Living with an ileostomy for eight weeks, for me, was a piece of cake. After I came home from my lower anterior resection surgery, I had to have an ileostomy placed to reroute my digestive system to ensure the area where my remaining rectum was reattached to my colon would heal without complication. As an aside, I asked my surgeon to take a picture of what he removed. I had seen the picture of the tumor taken from my colonoscopy months earlier, and seeing the last remnants, outside of my body, provided me with a deep sense of closure. Dr. P removed nearly twelve inches of rectum and colon - I was stunned when I saw it.
The difference between an ileostomy and colostomy is where it is placed along your digestive route. An ileostomy is placed in the upper colon, at the beginning of the digestive tract. What comes out of an the intestine at this point is usually beige in color and the texture of applesauce, generally, depending on what you have to eat (or drink), and typically has little to no odor associated with it. A colostomy is placed lower in the digestive tract and, since food and drink has had the ability to move through more of the digestive system, typically empties more solid waste.
As with every part of this cancer journey, I wanted to be in total control of taking care of my ileostomy. I tried to name it - but it just didn’t stick. To me it was just my ostomy. I never felt embarrassed about it. I told people I had one and was happy to answer questions. The thing is, more people than you know have had one or are currently living with one, and really, it's no big deal.
Yes, the learning curve around it is a steep one. First of all, I had no idea how noisy it would be in the first week. The portion of the intestine that is outside of the body is still swollen, so anything passing through it can make some noise. This phase quickly passes and besides, I wasn’t going anywhere that first week after surgery anyway.
At the hospital, the stoma nurse taught my husband and I how to change my stoma equipment every 2-3 days. I learned how to confidently empty my bag. I had one home health visit post op to help change my stoma and after that experience, I knew I wanted no more help. I wanted to be fully independent in this too.
David helped me a few times in changing my stoma, but once I got the rhythm down I was on my way. Yes, I had a few small mishaps with some spilling, but that’s why you put multiple chucks on the floor every time you change. No matter what. And yes, it takes some getting used to to empty your stoma bag into a measuring cup for the first few weeks and then figuring out how to best empty it into the toilet, but once you get the hang of it, you’re good to go. I chose to wear my stoma bag at an angle, so it laid basically at my hip crease and it was easy to empty while sitting on the toilet. I attempted to wear the bag completely horizontally, but I think that is for the skilled stoma folks.
This photo was taken on May 11, 2023 when David and I attended the Blue Hope Bash in Chicago, hosted by the Colorectal Cancer Alliance. See? You can't even tell I have an Ostomy in this picture!
A low fiber diet is the only way to be during this time. Since I knew I would have my ileostomy for a short amount of time, I didn’t challenge it. I DID NOT want a blockage, it just wasn’t worth it. Skinless chicken breast, tuna fish, rice, sourdough bread, yogurt, cheese, no pulp fruit juices, and pureed vegetables, were on the menu. And yes, cheese pizza, Glorious cheese pizza. I could have a glass of wine or two (beware the thinned output) and made sure I stayed hydrated.
I preferred Hollister two-piece stoma products, including their stoma powder and barrier wipes. I used a lot of Good Wipes, a more eco-friendly wipe: https://goodwipes.com
I also ordered a custom Ostomy pouch from https://pouchwear.com/. It made it much more comfortable to navigate the world with an Ostomy.
Labor Day Weekend - Sept 3, 2023
When I wrote the above section about my lower anterior resection surgery and my excitement for my reversal surgery, I clearly had no idea what I was in for this summer. But I will say, that as summer is now officially coming to a close, that I am truly blessed to have the summer that I did. My first surgery, while not ideal, was a smooth recovery. My second surgery could not have been more different, with a recovery that was harsh, isolating, and seemingly unending.
And then all of a sudden, it did end and I reclaimed my life. My husband and I reclaimed our lives. And I have been grateful for every moment of it, including this one, as I am sitting on my back porch, listening to the summer winds that dull the intense heat of the day rustle through the willowy grasses planted in my window boxes, smelling the remaining summer sweetness in the air, acknowledging the intense blue of the cloudless sky, with my dog and my husband at my side.
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