Posted 5/6/2015 2:38 PM (GMT 0)
I'll throw my hat in as one who has an end ileostomy and it is so much better than life with a colon was! My ostomy was not planned. Going in to surgery I didn't know that I would have one. Having said that, at first I was considering a takedown, but after I got used to the ostomy, I decided to keep it. I've had mine for 5 years and 7 days. Here are some of my observations from my experience:
1. Gas can smell a lot worse after colectomy. A LOT worse! According to others, you can control the smell and amount with diet or medication, but your mileage may vary. I don't bother with meds, and there are ostomy pouches that come with air filters to release the gas without the smell. I haven't had good luck with those, but I'm considering trying them again, because lately I'm pretty gassy and have to empty the gas once an hour or so. Not a big deal, just an inconvenience. The problem I've had with the filtered pouches is that the filter only lasts a day. Once I lay down, the filter gets gunked up and becomes useless. They come with these stickers that you are supposed to put over them that supposedly prevents that, but I never tried them.
2. Related to number 1, having an ostomy means you control when you release your gas. I would hate to let it rip in a theater or a populated enclosed area. I once had a small air leak on a plane because I was nearing the end of my pouch's life-cycle, and it was really full of gas because I hadn't eaten in awhile. I didn't realize the smell was coming from me till I was off the plane, and I laugh at it now, but it smelled like death.
3. Another one related to gas. Sound. With an ostomy, you can't control when it happens. For the first four years, mine sounded like stomach noises, which was great, but then I had another surgery due to adhesions and stricture. Since then, it has gotten louder and sounds a lot more like passing gas. It can get quite embarrassing -or funny, depending on your personality/situation. There are accessories to muffle the sound as well. I'm about to buy the stoma stifler to try it out. It's supposed to muffle as well as protect, but it's $138. If it does what they claim, it will be worth the money.
4. This one may be obvious, but with an ostomy you might have to wear looser fitting clothes. You may also need accessories to protect the ostomy when swimming or doing other activities.
5. Cost. One of the bigger downsides to an ostomy is the need to buy supplies. Last year we maxed out our out of pocket maximum when I had surgery, so I stocked up on ostomy supplies since it was at no cost to me.
6. Medical complications. With an ostomy there is a risk of developing a parastomal hernia. I haven't run into that one. Hoping I never do. There are other risks associated with surgery in general, not just with ostomies. For example, adhesions. Adhesions are internal scar tissues that may catch on your intestines, causing them to twist and may cause stricture and blockage. I have unfortunately experienced this.
All things considered, I'm very happy with my ostomy. Prior to it, I went months without a BM. It ended up being kind of an emergency surgery, because my stomach was so distended and I wasn't passing anything, even after a colonoscopy prep (which made it worse). I'm sure my colon could have gone into a medical journal, if my surgeon were so inclined. Also, even if I have to have surgery every 4 years due to adhesions, it's still better than life prior to the ostomy.