Hi all, I've been a lurker for a while now and enjoyed your comments and tips. I had my ileostomy done on Feb 24 and now I'm going to have a proctectomy and colostomy done in the very near future. I am told by my surgeon that the colostomy bag is much easier to manage. I believe this to be true from my research; however, I wanted to ask the community if this is indeed true. And also, any tips from anyone who has gone through the same process.
Thanks in advance,
Stoma Steve
I've never had an ileostomy, so these are just the observations of someone who has a colostomy.
I think a colostomy needs emptying less frequently (never in the middle of the night for me), and output is usually firmer. We worry less about hydration and absorption... though your individual health and how much colon you have left will make your needs unique to you.
Everything else is the same; poor stoma siting, flat or inverted stomas cause problems for everyone. You'll need to start over at finding a system that works for you.
Congratulations! I expect this will be a positive change for you. And welcome out of the shadows.
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Hi Mike and all. I am not sure how panoramic my perspective really is as my peripheral vision shrinks with each passing year. I can tell you that when I came to this website six years ago I was truly ;impressed by the positive attitudes of so many members, especially the younger folks who refused to let their ostomies define who they were or what they would become. I also came to appreciate that having an ostomy is not the same thing as having a disease. Pardon ;my pun now, but ostomies and cancer don't belong in the same bag. One is a solution, the other is a problem. Celebrating National Ostomy Day ;is also well outside my comfort zone. That's like celebrating National Wheel Chair Day. Come on!
I think there is a ;need for improved ;public awareness of ostomies, but I am not sure how that's best done. There ;remains ;some social stigma attached to our situation, and it's acutely felt among our young. We need to get out of the dark ages on this issue, but not by going 'in your face' to everyone else. I think Bill and NDY are 'spot-on' when it comes to telegraphing the right message to friends and family. People will know how to react when they ;see ;how we accept the cards we were dealt. I also appreciate the contribution some people here are making to this effort through their publications.
On a personal note, my son has been suffering from ulcerative colitis for years just like I did. I am very concerned because people with UC are at a higher risk for colon cancer. Years ago my GI told me to get annual colonoscopies to be on the safe side. I am glad I did because he eventually found pre-cancerous cells which led to several surgeries and my becoming an ostomate. Since then I have always ;conveyed a positive attitude to ;my son about wearing a bag because it has kept me alive to enjoy many more years with my loved ones. I think he got the message. We both go to the same gastroenterologist in NYC and get scoped on the same day. Father and Son moments!
Someone once wrote that our children are the letters we write to the future.
PB
I got a hernia!!! Should you get them removed or handle it? Just had a blockage up by the stoma. Went to the emergency room because of pain, but it did clear finally. Waiting to see the surgeon and see what he thinks. This is the first time in almost 4 years that I've had problems. Any advice appreciated.
Most surgeons advise leaving a hernia if it isn't causing problems. Surgery to fix the hernia may well induce a new hernia. Mesh used to fix hernias can migrate and cause other problems.
We have members who've had successful hernia repairs, so not all are negative.
I'd see what your surgeon says. The blockage may have been unrelated. If the hernia caused the blockage, you may need to consider repair.
What Susan said. Unless they cause issues, most recommend leaving them alone.
Hi Steve,
I had a colostomy and proctectomy back on June 23, and it has been reasonably trouble-free. From what I understand, a colostomy is generally easier to deal with and has fewer dietary restrictions, but you may get a bit more "variety" 😉
If you're getting flap surgery for the proctectomy, a few tips from my experience are:
After surgery, you may need to lie on one side for a few days to prevent any restriction of blood flow to the flap. A rolled-up towel or something to help you avoid accidentally rolling over helps. I have a profiled memory foam pillow I use at home, and although it was bought for a neck problem, it helps stop me from falling over unintentionally. After your surgery, get up and mobile as soon as you can, but don't overdo it, though. Once you're ready to take a shower, there are plastic skirts you can put around your waist in the shower to help keep the dressings dry. The thing I wish I'd known at the time 🙄 was that it was truly miserable showering half in and half out of the cubicle. Once the dressings come off, they will still weep a bit; some pant liners will protect your pants. After the surgery, things will probably feel a bit weird; everything is very tight, and for me, it kind of felt like I'd had a carrot shoved up my a*#* and then been given a massive wedgie. Over time, the carrot gets smaller and disappears, and the tightness reduces. You'll probably experience some numbness on your butt; this generally improves over time. For me, there was no massive pain, just a bit of discomfort, but it does take a long while to fully heal.
Oh wow, okay, thank you. This is very helpful. I was really worried about the hole that would be left to close up on its own!
When you say "felt tight," is that the "Barbie butt" trying to find a bit of room and loosen up?
Hi Steve,
With the flap surgery after the anus is removed, a flap of skin is stretched from the butt cheek to cover the void. This is where the tightness comes from. It takes time and exercise to get the range of movement back. Initially, it's difficult to tie shoelaces, etc., but over time, the range of movement returns. I'm 2 years in and still have some tightness.