Hi, MikeAZ. I was diagnosed with colorectal cancer after 30+ years of ulcerative colitis. When a malignant tumour was discovered, everything progressed very quickly to remove my colon and create my j pouch in a two step procedure.
At first, my surgeon was pressing for a permanent ostomy. I didn’t know about this site, and I didn’t know I had options. My tumour was in a tricky spot and they didn’t know if I would be a good candidate for a good functional j pouch. I almost said yes to the permanent bag. Luckily, my surgeon referred me to a colleague who was certain he could create a j pouch for me, and away we went. I had a temporary ostomy bag for 10 weeks.
I am very happy with my j pouch, and it functions perfectly, although like everyone else in the first eight months it was very tough going: frequency, urgency, anxiety whenever I had to leave the house, leakage, burning raw skin. All normal reactions while your j pouch learns how to function in its new life.
Looking back to the few weeks I had an ostomy, I know that if I had to live with a permanent ostomy I would have managed it, although at first I denied that it was part of me. I even offered to pay my home nurse to come everyday to change it for me. But I soon learned how to remove the bag, clean the stoma and apply a new bag in under 10 minutes. Triumph! I soon learned to love and appreciate my tiny stoma because it allowed me to live and kept my bodily functions working. And there are all sorts of elastic body bands, bag coverings, and equipment to help you feel physically confident.
What was a concern for me, far in the back of my mind, was the real concern of a lifetime of purchasing expensive bags and equipment, possibly many decades or more, and whether there will always be health insurance to cover these costs. Also keep in mind that when you are much older, you might need assisted living. It can happen to anyone. No one has a crystal ball. Circumstances change, families change, finances change. A bag could be an issue if someone other than you had to care for it. Yes, j pouchers have real issues too, frequency, leakage, food issues, and some j pouch problems can be long term.
If you decide on a permanent ostomy, make certain that your surgeon creates a stoma that protrudes (like a tiny wall faucet) instead of receding so that output drops easily into the bag. If the stoma is not long enough, it can recede and sink under your skin line, resulting in a divet, or a dent. Your stool will pool inside this divet and cause burning agony if it can’t be fixed. Good luck. Let us know what you decide.