Colostomy

First, get the whole detailed story from your healthcare professionals. Make them explain, to your satisfaction, exactly what -must- be done and -why-. If they don't or can't make it all understandable and justifiable, then ask other healthcare professionals. I wouldn't let anyone do anything to me, especially anything radical or life-changing, without feeling it was the right plan for me.

I was diagnosed T3 N0 M0 (or MX, no known metastases) and the tumor took up most of my rectum. It was low enough to be -very- close to my anus. The game plan developed by my team was neoadjuvant (pre-surgery) chemo and radiation, then about 6 weeks later, surgical removal of the tumor and resection (reconnection) of the remaining colon to my anus. To let all of that heal, feces has been rerouted through a loop ileostomy (a temporary colostomy). I am now awaiting a leak test of my patched colon and the take down or reversal of the ileostomy to make use of my colon again. 

Prior to surgery, I actually had a heart to heart with my surgeon and asked him not to leave me with a permanent colostomy, no matter what he found. He said he could not make that promise. He said he would have tissue from my anus tested, while I was on the table, and if it was cancerous, he would remove it. He said he would not knowingly leave cancer in my body as I am -only- 49 years old and too young to want that sort of option... choosing death over my perception of quality of life being destroyed.

So, when I went into surgery, I didn't know what I'd wake up with... or without. I thought a lot about that and the bottom line is, I want to live.

The truth is, people live full and happy lives with permanent colostomies. A pouch on your tummy does not define you. Other people don't even know it's there unless you tell them. There's a little inconvenience to it, but there's inconvenience in having to hunt for a restroom, stock toilet paper, wipe your own butt, etc... when you go like other people do. This is just a bit different.

Even though I am only temporarily 'bagged', it has become a sort of natural part of my life. I could see how you could get used to it and just carry on. Sure no one would choose it, but it's easy enough to live with. It also beats the heck out of dying some grueling death, or in fact dying at all.

If a pouch seems like a hardship, imagine the tortures of the damned from a colon being eaten or blocked by cancer, a cancer which would surely spread to other parts of your body if left unchecked and causing havoc there too. That would be a seriously evil choice.

I didn't really trust all of that before my surgery and living with an ostomy, but I get it now and it's okay. If my future ultimately includes a permanent colostomy, then I know I can live with that. I want a future, period.

Yes, I had a colostomy performed on June 3, 2005.  (please see my recent post Colostomy and CEA).  My preferences?  Of course I'd like to have a normal, healthy digestive system, but that will never be again.  I have what's known as a stoma.  Essentially, it's the end of my transverse colon turned back on itself and sown through my lower left abdomen.  It looks rather like a bright red hemisphere.  Think of a golfball sawn in half, painted bright red and sewn to your stomach.  Stool passes through the stoma whenever it needs to and I have no control at this time when I will pass stool so I wear a bag.

Wearing the bag is really not that bad.  I just think of the bag as an artificial rectum and the clamp that keeps it closed as an artificial sphincter muscle.  After all, it saved my life.  There are several kinds of colostomy systems available.  I use a two-piece system by ConvaTac.  It consists of a "wafer" that adheres to my abdomen using a very high-tech adhesive that lasts from 4-6 days.  A long (8-10") double lined plastic bag attaches to the wafer and can be removed for cleaning.  Properly attached, there is no odor.  However, I might pass gas at embarassing moments.  I usually just grin, tell the folks I had abdominal surgery and at least "they won't have to smell it!"

Since I have most of my colon left, I am a candidate for "irrigation".  Water is inserted in the stoma once a day and all the stool is washed out.  A bag will not be necessary after that.  A large bandage can be applied daily.

I can not irrigate at this time because I developed a peristomal hernia.  This was the result of eating too much and gaining too much weight after the surgery.  The stretching caused by the overeating and weight gain tore the already weakened abdominal walls.  The surgeon said it can be repaired in about two months but only if I lose weight.

I also joined a colostomy support group here in Charlotte, NC that is composed of people with colostomies, ileostomies and urostomies.  They are a great group of people and each bi-monthly meeting has a speaker or lecturer who addresses many of our concerns.

My biggest concern and problem at this time is a side effect of the surgery:  It has brought my sex life to a virtual halt.  Apparently, nerves were damaged during the surgery.  If this is a concern of yours, I will discuss it with you in a private exchange.

The best of luck to you.

Billy Haake, Charlotte, NC

I have a colostomy for over a year and have had my share of accidents. From trial and error, would like to share my method and insite in minimizing the skin irritation around the stoma. Regardless of what product you choose, extending the life of the appliance beyond five days will expose the skin to the caustic fluids. Understand when sores develope the only time to care for them is the window during wafer replacement. I use a two piece system with 1-3/4 lock ring. To insure good adhesion around the stoma it is recommended to shave the area. Clean the area with a skin cleanser and throughly dry. Apply stomadhesive powder to any open sores and pat off excess. Using a skin barrier pad, dab over the powder and up to the edge of the stoma, with a second skin barrier applicator wipe the remaining 4 x 4 wafer area and let dry. Find a two sided adhesive hydrocelloid strips approx 3/8 wide and 4 inches long, encircle the stoma and pinch close to seal. Center the wafer over the stoma and apply pressure to surrounding area working out avoiding folds or bubbles. Note; the adhesives used are body temperature activiated and need about an hour to achieve bonding strength. Do not shower for about two hours after applying a new wafer and when you do, use paper tape along the top edge to prevent the water from working it's way under the wafer and breaking down the adhesive. Trust me, taking the time to prep and install the appliance properly using the above method will make life almost normal. Dave, Laguna Niguel, CA