It has been just over a year since I was diagnosed and operated on for colon-rectal cancer. Fortunately the cancer (stage I) was discovered early. It was revealed after I had my first colonoscopy at age 51. I had several more tests to determine the extent and location of the cancer. The doctors determined that the cancer was located just a few centimeters from my sphincter muscles. Luckily my surgeon believed he could save my sphincter and I would not require a permanent colostomy pouch. Instead I would have a temporary ileostomy bag. After I healed from the surgical removal of my rectum, the ileostomy would be taken down and I would be hooked back up “normally” again.
On November 13th 2009, I had my rectum removed at Kaiser Permanente Hospital in San Francisco. The surgery went well but I had a number of complications over the next several months dealing with an infection and abscess. I was in and out of the hospital a several of times. I spent close to a total of four weeks in the hospital between November and January. For the next 5 months I had an ileostomy bag hanging from the right side of my belly. The end of my small intestines was pulled through my abdominal wall so that waste could be discharged without passing through my healing colon. The care and management of this was time consuming and required lots of fidgety work. It was not as uncomfortable as I feared but it was really bizarre to have a piece of my insides hanging out. Finally in mid April I had my last operation to restore my colon to “normal”.
This so called “normal” was a totally new reality. One does not usually think about their rectum and its function. I learned that the purpose of the rectum is to be a temporary holding area for your poop. When it fills up, it sends a signal to your brain telling you it is time to go. If all is well, you don’t think about it more then once or twice a day. For the first month out of the hospital I found myself going 60 to 80 times a day. My colon was doing its job of pushing food waste along (peristaltic waves). But there was no rectum at the end to collect it. I felt like a rabbit pooping little pellets all the time. Although the surgeon has shaped the last part of my colon to act like a small rectum (transverse coloplasty pouch), I was going to have to train it to act like one.
Fortunately, a friend of a friend came to may aid. He had a similar operation a couple years back and had a strategy that worked for him. He had found a bowel-training program that worked with a combination of Metamucil (psyllium, a dietary fiber supplement) and antidiarrheal medications such as Lomotil or Immodium.
If you are interested, the bowel-training program can be found HERE. My new regimen consists of starting off the day with a large meal. I then stay close to the bathroom for a couple of hours. When I am ready to go out I take an Immodium or two. Lunch and dinner consists of very, very small amount of food - no more than a cup or two in size. It is followed by a very concentrated shot of 3 teaspoons of Metamucil dissolved in a couple ounces water. I don’t have any food restrictions. However, I have learned some foods are no longer easy to digest, especially beef and corn for example. Other than at breakfast, I can’t have hot liquids such as coffee or soup. Rich and sweet foods (cakes, cookies, chocolate, etc.) also are limited to mornings. Some days are a real challenge and I can’t go more than a few hours without thinking about and physically clenching and squeezing my butt muscles to hold it all in.
Things that are a challenge:
- Can’t take for granted that I can always control when I poop.
- If I don’t stick to my eating and Metamucil program, there are unpleasant consequences. Gone are the days of eating whenever and whatever I want.
- Eating, drinking, sex, going out to a movie or a play are no longer spontaneous activities. They now require planning, organizing, and preparation.
- Wherever I go, I need to carry a bag of supplies: Metamucil, Immodium, spare underwear, extra toilet paper and underwear pads.
- Keeping a sense of humor when my body betrays me.
When I start to get overwhelmed or depressed about the situation, I try to remember the positive outcomes:
- I am alive, active and productive. I am working part-time. I can travel (we spent the month of August in Scandinavia). I started running again.
- I didn’t need radiation or chemotherapy or a permanent colostomy bag.
- The procedures didn’t make me impotent or have erectile dysfunction or urinary incontinence (all possible side effects).
- I have lost 15 pounds from my high point. My clothes fit better and friends say I look healthier. I would still like to lose 7 to 10 more pounds.
- I have the most wonderful and supportive husband. He has taken great care of me in a multitude of ways.
- The doctors, nurses and staff at Kaiser Permanente have been first rate. I could not have asked for a better health team.
Previous entries about my surgery and recovery: : 1, 2, 3, 4, 5.