Why Join MeetAnOstoMate?
First off, this is a pretty cool site with 37,000 members who truly understand you.
It's not all about ostomy. We talk about everything.
Many come here for advice or to give advice, others have found good friends, and some have even found love. Most importantly, people here are honest and genuinely care.
🛑 Privacy is very important - we have many features that are only visible to members, ensuring a safe and secure environment for you to share and connect.
Create an account and you will be amazed by the warmth of this community.
Welcome to the forum. I would like to welcome all fellow Canadians to the site. I hope you get a few bits to your question. Good luck and enjoy the site.
Top of the morning, Topper, I couldn't resist doing that. Welcome to the forum. I have had an ileostomy for 30-some years due to Crohn's disease.
Hello Toppermost and welcome to our group! I am currently not a double bagger, but I was one for about a year, sort of, so I can identify to some degree. I started with a colostomy, which did not work well for me (long story), so the next step was an ileostomy, but my surgeon didn't want to eliminate the chance of reversing things if it didn't work, so he left my large bowel and stoma in place and gave me a loop ileostomy. For a year, I had the ileo stoma that functioned, and the colostomy stoma, that did not function. I still had to wear a bag over it as there was some regular mucus discharge. I just had surgery a couple of months ago to get rid of my old stoma along with my large bowel, so now I'm a one bagger again. There was a member from Australia who was a two bagger on this site, but I haven't seen anything from him in quite a while. He may still be around and will hopefully read your blog. Or, there may be others out there who will read it. There are many members who don't post regularly. In any case, we are all here to help, so don't be shy!
Terry
Hi Topper!
I was hoping someone on here would pop up with two man bags like me, as it is much harder than one bag most girls or boys have on here and they don't realize the extra time and hassle it is!
I've had my two since May 2019 after having a total pelvic exenteration at a top London hospital, St Mary's, and a world-class surgeon who performs bowel operations globally. Thank God I had him!
My urostomy has stayed the same size, about 40mm, but my colostomy stoma has prolapsed due to the pressure of a hernia behind it and an incompetent stoma nurse who just watched it grow over 18 months and did not recommend a stoma belt, which I had to get myself! My oncologist told me recently that out of 16,000 patients, she has only three who are double bagged, so it is very rare to have and a pain as you have to sleep on your back connected to a night bag! The only bonus I can see is you don't have to get up in the night to pee! Take care, Adam
Hey Adam. High 5 to a double ostomate! We are indeed, a rare breed. Four years ago, I had a rare form of cancer called chordoma, which consists of a tumor wrapped around the bottom of my spine, which houses the nerves to my bladder and bowels. To remove the tumor, they had to take the nerve within, so two bags. I also had a superstar surgeon who had a dream team of seven specialists who performed a 24-hour operation to cut out the f'in tumor the size of a large orange away from my spine. I remember the first consult with my surgeon. I almost shit my pants when he told me about the two bags. He calmed me down by telling me the bags would be the least of my worries, and was he ever right. Anyways, much longer story short, four years later I've managed to claw my way back to a life worth living, and I agree about the silver linings. Not having to get up to pee in the middle of the night is great. Can sleep through. And never having to feel the urge to pee is great. Glad to not have to deal with an old prostate. Enough blabbing. Are you managing your life okay? And which ostomy is a bigger pain in the ass to manage?
Welcome to the site, not a double bagger but definitely a friend as are all of us. Xx
Hi all,
Yes, I can honestly say the urostomy is more hassle than the colostomy as it is relentless in passing urine all day and night. Remembering to check if it's full is crucial, as you do not get the feeling that your bladder is full anymore, so you have to police it yourself, constantly on check mode. As for the colostomy, it's near normal as I'm having output once or twice a day and can get on with life! Three years in now, and it's a way of life. There's no point in getting depressed, as there's no point in opening the door to that one. Sink or swim, flight or fight? I'm a fighter and love life. I'm in my mid-50s and never thought I would be in this position in a million years, planning my funeral. But in the middle of my crisis, my partner was struck down with pancreatic cancer, with only palliative care on offer. That really shook me to the core, and she only lasted seven months, so life really sucked. But I had to dust myself off and get back on my horse, as I had too much to live for. At the same time, it made me realize we are not immortal and should live for the day. It did bring home that things are more important than material things and money, so I brought things forward, or call it an early bucket list, like buying a motorhome and started traveling like there was no tomorrow, as I need to have my shower room and toilet close by, so why not! Yes, it is a big game changer, and I'm doing things I thought I would do in my 60s/70s if I got there, and who knows what shape I would have been in without having cancer, so I see it as a blessing in disguise, maybe?
Go well and stay well.
I would like to hear from people about their experience with their pouches and leakage, etc., as I had two pouches that were different brands and leaked all the time or did not last the two days they were designed for! Partly because it is all new territory and the other half was an incompetent stoma nurse who did nothing for you, such as offering different bags to stoma belts and Brava tape extenders for a better seal! I put up with bags that leaked most days for almost 3 years until I changed my stoma nurse, and things changed overnight because she had compassion and was a fellow cancer survivor, so we had a connection from day one, and she turned my life around with much better bags, which I can relax and go out and wine and dine in moderation without fear of a leak! Because you think the stoma nurses know better, you take what they say as gospel, but I tell you, like all walks of life, there are good stoma nurses and bad ones who can't be bothered to go the extra mile, as at the end of the day, they do not walk in your shoes! I have tried quite a few manufacturers lately and always make a point of trying samples from different makers, half of whom the stoma nurses have not heard of, so who's educating whom? For example, I started off with 2-liter night bags, which were full in 6 hours, so I had to set my alarm so it never backed up to my urostomy bag and leaked. What a pain in the arse! So I asked for bigger bags, only to be told they are the biggest, so I ended up finding 3-liter bags made by Great Bear, and my supplier did not believe me until I sent them the details. Now I can lay in for up to 8 hours leak-free! So don't take no for an answer! Rant over! TC
Hi,
Thanks for your post. I have an ileostomy which, to be honest, was a big shock if you read my profile. I have had a few problems with leaking and have tried every trick in the book, so to speak. My downfall is that I have a hernia above and below the stoma, so that's why I tend to have leaks. I have tried a few different bags from suppliers, but I have found that for me, the Sensura Mio by Coloplast is better. Glad to hear you're enjoying your bucket list early. My motto is life's too short, so live for today because we don't know what tomorrow will bring. XX
Hi Caz, yes, pouches or bags, whatever you want to call them, are a minefield. At first, you think that what you start with are the best for you as your stoma nurse would have selected them for you depending on your stoma shape, but after things settle, so does your stoma, or it changes shape by hernia or even worse, a prolapsed stoma caused by the hernia behind pushing out the stoma, so it becomes a vicious circle like I'm in at the moment, but hoping to get it sorted back up in London in February, fingers crossed. Apparently, the reason for the hernia in most cases is when the surgeon makes the opening for the stoma, they make it too big and sloppy, so then months down the line, the hernia forms and starts pushing through the stoma hole too, as it's the path of least resistance. My older brother had an ileostomy for a while but had it reversed and had the hernia repaired at the same time, but you can have yours reinforced with a mesh-like material, so look into it. As for the Coloplast Sensura Mio Convened Urostomy bags I used when I first had my two man bags, I found after a while they were not sticking too well, so then I used the Coloplast Brava tape extenders, which are horseshoe-shaped to give you extra grip, but to be honest, I think they created more leaks! I found the Coloplast moldable ring worked better; you put them on the inside of the bag around the ring, then stick them to your body, or you can use a paste like my brother did. I have not personally, unless your contours are really up and down. I recently changed my Coloplast bags to Hollister, which I found are much better; using the Brava tape extenders works better with these bags, and so far, I have had no leaks! My brother used Dansac 2-piece bags for his ileostomy and drainable, so you have a base plate you change every 3/4 days, and bags just clip on, seal quick and easy. But different cleaning regime, six of one and half a dozen of the other. I prefer one-piece bags; try SALTS BE Confidence as I used to use them as they have a wide flange, 75mm, and were bulletproof and bombproof, never had a leaker, and sure they make them for ileostomy as I had them on my colostomy and miss them as I had to get a bigger bag due to a prolapsed stoma. Hope this helps, also try OAKMED, Pelican, and Wellmed, a flushable bag! Yes, flushable, I tried, but they are not perfected yet, 80% there, when 100%, I will try again as it will revolutionize bags as we know them! Take care, Adam
I'm interested in what gets you through the day? & what gets you through the night?
Dr Panko
Yes, Topper, you've got to laugh as you can easily go mad! Anyway, laughter is better than any meds I've had lately!
I keep reading about people who let rip or fart in public places, and it brought an old story to mind from an old lady I knew who lived through two wars. Lilian was her name, and she was in the Land Army. What a character she was! Anyway, she was brought up in the Garden of England, Kent, and told me this story of a man who was buried in a local graveyard there, and on his headstone was a poem:
"Wherever you may be, let the wind blow free, as if you are in church or chapel, you just got to let it rattle!"
Well, the story was that this man was an anal retainer and tried his best to hold a fart in while in church, but it ended up being the demise of him, and he died! I just hope it was not spontaneous human combustion, as shit would have gone everywhere! That's a true story!
High 5 2U Wiljpeters. Awesome to meet another doublebagger. Seems like we are a rare breed, maybe even an endangered species. I got my new plumbing 4 years ago thanks to a tumor wrapped around my spine. The nerves supplying my pelvis came out with the tumor. You are right about the pee bag being the most difficult to manage. It's like working on the plumbing without turning the water off. Overall, I'm doing okay with my dynamic duo, likely a small mercy given the fact they are the lesser of my postoperative challenges. 24-hour surgery, 6 months in hospital. The thing with the 2 ostomies is that you keep practicing endlessly so you can't help but eventually learn lessons, new maneuvers, and just improve. If you have any questions, need any advice, or just want someone to whine to, please feel free to check in with me.
Don't know how you coped for 6 months in the hospital. Hope the food was nice & nurses. That would have sent me stir-crazy ????
Yeah, I must admit I thought I was in a hospital for spare parts for wealthy people and your organs went to the highest bidder!
Fuck me, my head was well and truly in the shed!
I can remember the vivid dreams when I was in a coma for two weeks; that was better than any film I ever saw!
Like you said, you finally come back to Earth with a bump and think, thank fuck that was a nightmare?
