Hi, I'm Larry Pilarski... I'm a Colon Cancer survivor... 13 years ago I was having problems with my bowel movements. Slight blood was showing when I wiped. I didn't think too much about it because I thought I had, as my Mother called them Piles, or Hemorrhoids.
After about 6 months I decided to have my doctor check me. I told him I thought I had hemorrhoids and he sent me to the hospital for a barium enema screening for cancer.
I was so relieved to find the results were negative BUT the blood in the stool didn't subside... It didn't get worse it was just still there... So again I thought hemorrhoids -- I figured I could live with that, after all my Mother did!
This went on for another year then I told the doctor I still had this problem. He sent me again for another test... This time it was a sigmoidoscopy. Again the test came back negative but the bleeding persisted. Finally, after another year, I said to my doctor. "Listen something is wrong! Everything is negative yet I still have blood in my stool!"
He makes an appointment for me to see a surgeon and have my "hemorrhoids" removed. I'm in the surgeons office expecting to have a few cuts done and thinking my problem will soon be over.
The surgeon tells me "Bend over." and he probes what looks like a small telescope up my rectum. Then the surgeons says, "You don't have hemorrhoids... I think it's a little worse, I'll have to take a cutting."
As soon as the surgeon said 'cutting' I thought "Oh, No Cancer. "After the procedure the surgeon said "I will get back to you in a couple of days. He did and told me he had already made arrangements with the hospital -- I had to be operated on -- IMMEDIATELY.
I had colon cancer. A good deal of my colon was removed. I had to have a colostomy... meaning I would no longer have use of my rectum (I was going to be one of those "Front-End Models) : )
It wasn't the easiest thing to deal with. While in the hospital I was shown a short film on changing a colostomy bag, that's all! What made it even worse was there was no one or any place to turn to for help. No one to give me direction on what to do, no one to give me hope. Except my surgeon who saw First every six months; then every four months and now every three months for "follow-ups."
I looked all over town, to no avail, for a support group I might join. I searched the city and county web sites and again found nothing. Finally, after six months, at one of my doctor follow-ups I mentioned there were no colostomy support groups in the area. In fact, none in the entire county! The doctor looked at me, smiled and said jokingly, "Why don't you start one?"
When I left his office I started to think about this... "Why not start one!" I began to research and read everything I could on Colostomy, Ileostomy and Urostomy. I wrote ostomy supply manufacturers and received tons of information.
Then I decided to write a small booklet of tips. Things I had picked-up and could share with others. I called it "The Ostomates Owners Manual - Techniques You Should Know When Addressing Your Stoma." I had several doctors and nurses read it over and correct any mistakes I may have made.
If you would like a copy of the booklet you can get it free. Just send an email to: Ostomyvisitor@aol.com Not only will you receive the download link to the book, you'll also receive our monthly newsletter The "Ostomy Visitor" full of advice, tips and humor.
The writing of that booklet encouraged me to start the support group I searched for so fervently. The Bayonne Ostomy Alliance -- became a reality!
If you or someone you know is in a similar situation, have them email the alliance at firstname.lastname@example.org or give us a call 201-339-5251. Our meetings are the second Wednesday of every month, from 2 - 3 PM, at the Bayonne Medical Center (29th Street at Avenue E. in Bayonne, NJ 07002)