Hi all:
I've been hanging around here since surgery on May 24. I hadn't said anything because I was dealing with so much pain, discomfort, and change; I felt like any of my questions wouldn't be fruitful. I ultimately was waiting for things to stabilize, even though I thought that day would never get here. I just had a CT scan last Friday, and things look like they are finally healing internally. I wanted to write and say, "thank you" to everyone with comments and suggestions in forums. I appreciated the suggestions from others. I used them to deal with my situation.
I was diagnosed with colon cancer on August 23 after a colonoscopy. I immediately began outpatient radiation and chemo. I was lucky because I was seeing a hematologist/oncologist in Houston, where I live, for ITP and hemochromatosis. She scheduled all the appointments with other doctors for me. I completed chemo on March 24, mostly because my body was crashing, and the doctors said I couldn't do it anymore. At that time, they safely said the cancer was not there but wouldn't give me an "all clear." Fibrosis had settled into the area of the cancer. They told me they wouldn't ever say I was cancer-free. I would possibly develop other issues due to the fibrosis. After weighing my options, I decided to opt for surgery. The doctor had three "game day" decisions to make, so it wasn't until I woke up from surgery that I knew I had a stoma and 10 inches of my colon cut out. Luckily, they didn't have to reconstruct any organs, which is a plus.
The plethora of issues I've dealt with physically, emotionally, and physiologically since my surgery would take hours to discuss. I guess there were three overarching issues.
First, in the five weeks after surgery, I couldn't stand or sit for more than five minutes without overheating or being in immense pain. The pain has finally gone away, per se, but for three months at work, I would have to stop and lay down. First, it was every three hours; then it moved to once a day. I'm in charge of a file room no one goes to. Even though it's musty and probably has never been cleaned, it's amazing what you'll do for relief from pain. I would have to go home and just lay in my bed until I had to go to work the next day. To this day, I tell people I think the surgery triggered "man-o-pause" because I get overheated with any physical activity. That also has generally subsided, but I found this product called Lume. It is a body deodorant that is the only thing that helps combat the places I sweat now.
The second had to do with the chemo. My lymph nodes in my lower body were fried, and my ligaments were weak. Plus, due to the chemo meds, the nerves in my hands and feet had no feeling. The feeling is about 98% back in my hands and 90% in my feet. But I had to re-teach myself how to walk and stand. At work, I walk up and down the stairwell between floors to exercise my legs. I tell my boss I walk up and down the stairs, but it's a sight you don't want to see. I noticed this week that this is the first time I walked like a normal person down the stairs without exhausting myself. Yay me!
The last struggle has been with the colostomy bag. In the hospital, they gave me a standard basic one-piece. I guess that works for most people. It worked for me when I was lying down after surgery. When I started to work, I found it didn't work anymore. I have the perfect type of oily and hairy skin that makes a basic bag unsuccessful. Plus, my stoma has transformed from a perfect circle to an unusually shaped oval. I switched to Coloplast Sensura Mio Click 2-piece. That worked great during the summer and fall months here in Houston. However, when the chill came through, I struggled with the base not sticking to my skin and causing leakage. I've been wondering if there is a better way. I mean, I see others here and in videos living lives and not worrying if poo is going to go everywhere. How is that? Then, last Friday, when I had my CT scan, the radiologist just happened to comment, "You have a parastomal hernia that wasn't there before; you might have the wrong colostomy bag, and you need to look into a support belt." Mind blown.
I write all this to say that through this first year, things have been changing as my body changes. What worked for me yesterday doesn't work for me today. It's only now that I have this first year underway that I even have some feeling I know what I'm doing. Along the way, I've had to change how I organize my living arrangements, exercise, eating habits, and dress. But hopefully, I'm on the right track. If not, I'll have to change that also, I guess. Ha!
Thanks for listening. Randy.
