Struggling with Decision - Colostomy vs. Alternative Treatments for Neurogenic Bowel

I seriously doubt you are following a proper human diet to the T. If you want to, PHDHealth.community 14 days trial, then 5 USD a month if you want to really live a happy, bag-free life. Good luck 🙏

Hey Beachboy, me again. Not wanting to beat a dead horse, but I'm still thinking about your comments regarding ileostomies. A couple of other points I'd like to make, one regarding maintenance. We use exactly the same products as colostomates and maintenance is no different. I spend exactly the same amount of time on maintenance now as I did with my colostomy, actually less, as I've naturally become more proficient at it. I also wanted to point out a couple of upsides to having an ileo. We have a slightly lower risk of hernia because the hole in our gut is smaller, and our stomas are smaller (may I say daintier?) than those with colostomies, so lower profile and easier to hide. My abdomen is flatter also because I don't have all those feet of colon taking up space in my gut. Even when wearing my bathing suit, you would not know I have an ostomy. Okay, I'm done now, promise!

Terry

Mine doesn't show under my swimsuit either. However, every once in a while it slips out for all to see. 😬
🔒 Login to see image

Lol! Only you, Alex... only you!

Think of it this way:

What's easier, draining a bag on an infirm elderly person, or changing a soiled diaper?

2-piece systems.

The bag snaps off in less than a minute. It could then be drained or replaced with a new one. Wafer (baseplate), easier to change than a soiled diaper. Wafer could last 3 to 4 days before change out.

The above scenario was told to me and my wife by my surgeon during a reversal consultation. My wife was pushing me to go for reversal surgery. She quickly changed her mind.

Words of Encouragement from Ostomy Advocates I Hollister

Beachboy, that's kind of my thought process. It's one thing to wipe a baby's bottom but to wipe an adult's ass is very unsettling and gross!

So how is flatulence different and how is it handled compared to the "out the bunghole way"? Seems like everything I eat causes gas!

You fart in the bag, no smell. If you have a working filter in your bag, it'll usually let the air out. As it gets clogged with output or liquid, you'll have to let the air out as the bag will fill like a balloon.

Your life would be much better with either a colostomy or an ileostomy. I have an ileostomy and a Barbie butt. Not something that you talk about other than on sites like this. Yes, it's life-changing, but it's a lot more comfortable than what you're going through at the moment. I'm in my 10th year on April 14th. Bowel cancer took the lot… even my pelvic floor… I don't have a coccyx either. Believe it or not, I also broke my back and had spinal surgery in 1997. I wish you well on your journey 💜🙏

Having a colostomy gives you better control of your life. Pooping in your pants, even if it is rare, is no joke.

I have had mine for over 30 years. While it was a shock in the beginning, you realize it's just a small part of your body and nobody knows you have it unless they see you naked or you tell them. I am working, had children, was married, now dating—a very good life.

Hello,

Since I don't have an ileostomy, I'm only pointing out facts I've read here. Mainly the difference in output and propensity for suffering leaks. And if an ostomate suffers leaks, more maintenance would be involved. At approximately 14 months post-op, I've never had a leak or bag blowout. But that's my personal experience. "Everyone's mileage will vary."

I have a parastomal hernia, which is not too bad... but still pisses me off. My surgeon had to remove impacted hernia repair mesh during my surgery. As a result, it's like I got liposuction on one side of my stomach. As I gained weight back... it mostly returned on the side opposite my ostomy. So I'm now lopsided. As a former surfer who was very fit and toned... it's tough to look at.

Thanks for your experienced input.

Hi Beachboy, Indeed if you are having more leaks, your maintenance time will increase, but why you are having more leaks is the issue. I believe from everything I've experienced and learned myself that the reason some ostomates have more leaks than others has less to do with whether they have a colostomy or an ileostomy, and more to do with a few other things. Stoma placement and the stoma itself, along with each individual's physiology, play a huge role. Not all surgeons are created equal when it comes to creating stomas, and some leave their patients with stomas that are really difficult to manage. It also may not be the surgeon's fault depending on the person's situation, i.e., surgery that necessarily leaves the abdomen in rough shape. Finding the products, appliances, and other aids that work best for you plays a huge role too, and some may be suffering needlessly because they just give up. I can tell you that I suffered far more leaks with my colostomy than I ever have since getting the ileo. There are so many factors involved, and each situation is different. That is why I try to avoid making sweeping statements.

Cheers,

Terry

Very good points. Luckily, my surgeon was experienced in colorectal and hernia repair surgery. He placed my stoma perfectly for my body shape. My surgery was emergency/exploratory, so I didn't sign any paperwork or have a preoperative consultation. I just told him, "I'll live with whatever you gotta do."

I was lucky too. My first surgery was an emergency, so I didn't have a choice in surgeon. I just lucked out that the guy I got was so good, and I stuck with him through my next three surgeries. The nurses on my ward all told me that he was the best and made the 'best stomas.' I'm sure it's made a huge difference in my quality of life.

Terry