Hello, I'm new to the site. My name is Cameron and I'm from British Columbia, Canada. I'm going in for surgery on August 28 to have stoma surgery. I have a spinal cord injury at level C4. Realistically, I'm not too concerned about most things. The only thing that I'm really concerned about is being able to get back to my off-roading life! I do bounce around a lot, but I use a four-point harness, which holds me in quite securely! This is kind of the point of the topic. Does anyone really know if this is possible? Are there any products available that could help protect the stoma? Is bouncing around a bad thing after the surgery/recovery (I am talking about after having adequate recovery time and being okayed by my doctor)? My seatbelt is quite adjustable in height. I am just really concerned about placement as I have not had the surgery yet! I found the site kind of by accident and I was reading and it seems like a very forthcoming group. I really think I want to be involved in this! Please, any input or if you have any questions that would help with an answer, please message me directly! I've been thinking about the surgery for many years as my bowel, after my spinal cord injury, has never ever cooperated. It's left me at the mercy of the "where is the bathroom?" scenario. It's been a little hellish. I just want my life back! I have a wonderful girlfriend who is very supportive and I just want to be able to offer her more of myself rather than staying at home and only going out on the days I feel good. I don't want to lose her! Thank you in advance!
After recovery, you can live life as you did prior to surgery. I have a four-wheeler and bounce around doing other fun pastimes. 😜 I would be more worried about your spine issues.
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...Hey Cameron. Welcome to the group. I think you will get all the answers you need from members here... sit tight.
We do have a few members with spinal cord injuries.
I have never heard of a walking quad though. That says a lot about you...
Good for you. You are driven.
May I ask the type of stoma surgery you are going to have?
You understand the difference between an ileostomy and a colostomy?
The 2 types of surgical procedures involved?
As a motorcycle enthusiast, I understand where you are coming from... off-roading is your thing. 2-wheeling is mine.
It seems you have the basics down with that harness. It must be a sight!!
Now for some laughs.
Are you freaking nuts? If so, join the club.
You have what I call the "Mad Max syndrome". But I think Mel Gibson would be scratching his head at your desire to ride.
Evil Knievel would blush, too.
Sorry... just breaking the ice. Maybe I should have led with that opening?
Please advise the stoma type and we all will pitch in to help you out.
Plumber is also wise to mention the spinal cord injury concern. I ditto that.
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Hi, thank you for the comment. I appreciate you letting me know that bouncing around is not a concern! Regarding my spine, it's really my neck at cervical C4. I'm fully healed, no worries there. I have been doing some pretty serious four-wheeling in the past with no issues! Titanium cage in between my C3 and C-5 vertebrae with a bracket and like half a dozen screws, it's quite the picture! I'm more worried about my guts!
Hello and thank you for the comment! I appreciate your candor! Yes, I've been told I'm a bit on the screw-loose side! I'm out in the middle of nowhere and people are looking at me like, "What the hell are you doing here walking around with my cane?" Nothing will ever stop me! The only reason why I am on four wheels is because I broke my neck on two wheels! That's why I'm now considered a quadriplegic, but I can walk. All four of my limbs are affected, mostly on my left side! Crazy thing, I was left-handed! I have had to learn how to use my right hand as my dominant hand, just so I can write, and probably better than my doctor 😂! To be honest, I'm not really too sure what style of ostomy I'm going to be having as of yet; my doctor thinks most likely it will be a colostomy, but the surgeon thinks for my lifestyle, it might be better to have an ileostomy. TMI, but I suffer from chronic constipation with spinal cord injury. It's about as close as you can get to living in hell without the heat! I do live on the West Coast just outside of Vancouver, so it gets a little chilly here in the winter! I live a great life, though, with lots of good people in my world, and my girlfriend is one of the most amazing people I've ever known in my life and she's very supportive. I absolutely love her to death! Anyways, thank you for the warm welcome and I will be looking for some more comments!
Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister
Whoa... a former biker and southpaw? Yeah... two-wheeler accidents you don't normally walk away from. I busted my femur. Ended up in a 3/4 body cast. Many years ago. Didn't stop me from riding... but nightmares still linger...
That is some story you have.
Re: ileo vs colo...
Speaking as an ileo of 8 yrs,
I don't think in your case, an ileo would benefit you. On the other hand, when they give you a stoma, you gotta know... are they taking out the entire large intestine? Rectum? Anus? And sewing you up down there? (Kenn butt surgery). Having a rectal stump just hanging inside you without support isn't what I call good for bouncing types, dig?
I don't know much about colostomies, I do believe they leave the large colon in... which might be good... or bad for you bouncing wise.
It's more solid waste and I'm told you can "go" a few days without pooping. To me that's priceless, man.
With an ileo, you dump roughly every few hours... or more often.
This means your bag fills up rather quickly... hit bump... splat.
You don't want that. Consider very carefully the appliance and stoma type. It takes about 2 years to recover from the procedure.
Just think how you want to handle pooping with a bag.
My final thought, which you have heard often, perhaps?
Superman fell from a horse. The powers that be could not even help him. I saw him once here in NJ. There was a benefit on his behalf. An amazing man, too.
The key for you to focus on is the part where you said "adequate time to heal." To be fully healed will be much longer than when you just feel ready or even when your surgeon says. There are guards you can buy to protect your stoma, and it's not going to fall off with proper attachment and maybe wearing a belt to hold it tight. Let it heal and then go enjoy whatever it is you like. We went off-roading in the Sonoran Desert last December for my birthday and survived. Have fun.
Hi again, that's some great information, thank you! I have been thinking a lot about it, and I know my doctor has been talking about the colostomy over the ileostomy. I still have one more visit with the surgeon before the procedure. I'm going to bring up a lot of points that you made! We were also talking about it being reversible! Obviously, that's something that I probably would not want to have done if I'm going through all this in the first place, but they were talking options! I have made the choice to have this procedure. Nobody else, my doctor just made the referral and my psychiatrist at the rehabilitation hospital says this is something that would benefit me, the colostomy that is! Apparently, in Europe, this is the procedure that happens more frequently for people with a spinal cord injury! I already use a bag for my bladder, so what's the difference? With a condom catheter, TMI, sorry! I have been watching a lot of YouTube videos and understanding different types of bags and belts for support. It seems like it's trial and error to find out what works for you! I have an appointment at my rehabilitation center a month after the procedure to go through different appliances available and understanding my stoma. I never really thought there was this much involved in it, but it's mind-boggling. The supplies needed for different applications! I'm just glad I found this website. I have had a lot of my questions answered already, so I thank you very much! I apologize in advance as my replies are voice to text, not always the greatest for punctuation!
This isn't actually my picture from my C4 fusion; it's the closest one I could find to the way mine actually looks, with a couple more screws. This is a C5 fusion. Good times 😁
Hi camboron68
Do it, you will learn to support and protect your stoma. Think of a boob tube for some support while bouncing around, and there are lots of different stoma guards available, or even make your own out of something. Keep in mind you will be emptying more with an ileo than a colo, as the output is much more liquid, but there are ways to thicken it up while you're having fun.
Enjoy
The good news is that you can avoid them with some small changes in your diet.
Wow Cam...this looks like a muffler repair I did last week.
😆 You are a lucky son of a gun; it's repairable where you can walk. Doesn't look too comfortable.
Do you trip the metal detectors at airports? Probably need a medical note.
No apologies needed for voice to text. Understandable. I'm trying to figure out how to do that on this p.o.s. phone. It saves time. And lessens pain in fingers.
Also, there is no such thing as TMI on this website. People speak openly and honestly. It's a safe place to talk out loud. No worries.
Most things are mind-boggling to new people. Over time, it becomes second nature, and you don't even give it much thought; it just comes naturally.
Trial and error. Good point. Nailed it.
Hi Cameron, welcome to the site. I've had an ileostomy for 30 some years due to Crohn's disease, and it hasn't held me back from living an active life. I had a 4-wheeler, then went to a SxS so my wife could go with me. We've gone on 6-hour rides with only one stop needed to empty and to grab a cold one, as this time of year here in N. Mich., the trails are dusty. You can somewhat manage your output with foods like bananas, peanut butter, etc., but it takes a while after surgery for things to settle down and for you to know what foods work for you. As for colostomies or ileostomies, I would think an ileostomy would be better due to constipation, as the colon isn't getting the signal to empty due to the spinal cord. Good luck.
G-Day camboron68, you have nothing to worry about if you can handle your current situation. I also had a spinal operation many years ago and have metal at C4 and C5. I have an ileostomy, but it does not stop me from bouncing around the Australian Outback in my Toyota Landcruiser Troop Carrier, so go hit the road, my friend. But wait until it's fully healed. Regards, IGGIE
As an incomplete paraplegic for over 40 years, the bowels were a true pain. Following an ostomy because of bladder cancer, I became incontinent and needed a colostomy. That was 2 years ago, and life is so much better. The only issue is with the products used; get samples from all the manufacturers. I have found Convatec Body Esteem the best. Barrier, bag, and borders complete the process. In regards to offloading stoma guard—or a towel on each side of the stoma to isolate the stoma, allowing flow and avoiding contact. Only the best.
Hi Cameron! Ostomy from BC too! I got a stoma guard from my ostomy nurse in New West; you can find them on Amazon. I wear mine every day because my seatbelt sits on my stoma; it just helps with mental peace doing day-to-day things. I work in construction, so getting bumped or carrying a heavy box could injure me easily. Along with that, I wear compression shorts. I've had issues with little hernias trying to happen, so good core awareness is important. That being said, I learned to dirt bike last summer, and it was a lot of fun! I'd be more concerned about your spine! Any kind of fall could injure anybody, so I just stay conscious of how to fall, and I'm sure you will too, not to slide on your stomach or anything. The stoma guard I have is from ConvaTec; the support garments I wear are from Comfizz (a UK-based company, pretty expensive, and I'm sure you can find something similar domestically). Those are my suggestions; if you want to go crazy, I got a guard called Ostomy Armour, and it doesn't work for me because my stoma is set low, so my hip joint would move it around, but those ones are pretty serious. For motorcycling level of activity. All the best!