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Double Bagged!

Posted by Toppermost

Hello Ostomates! First blog. just joined up.  I'm here because 4 years ago I had a literal one in a million form of cancer that left me double bagged with a colostomy and urostomy. Wondering if there are any other creatures like me on this site. Would love to hear from you or anyone else,  as I have never met or chatted with any ostomates. 

See all blogs by Toppermost
Dec 28, 2021
Bill : Hello Toppermost.
Welcome to the site. I am not in your position but there have been a few people posting on here in the past who are 'double-baggers' as you put it. I do hope that some of them are still watching and will reply to your post.
Best wishes
Dec 28, 2021
xnine : Welcome to the forum. I like to welcome all fellow Canadians to the site. Hope you get a few bits to your question. Good luck enjoy the site.
Dec 28, 2021
ron in mich : Top of the morning Topper, i couldnt resist doing that, welcome to the forum i have an ilieostomy for 30 some years due to crohns disease.
Dec 28, 2021
delgrl525 : 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!

Dec 28, 2021
Panko : Hi Topper!
I was hoping some one on here would pop up with 2 man bags like me as it is much harder thanks one bag most girls or boys have on here & don't realise the extra time & hassle it is!
I've had my 2 since May 2019 after having a total pelvic exerneration at a top London hospital St Mary's & 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 an hernia behind it and a incompetent stoma nurse who just watched it grow over 18 months & not recommended a stoma belt which I had to get myself! My oncologist told me recently that out of 16000 patients she has only 3 are double bagged so it is very rare to have & 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
Dec 28, 2021
Panko : Topper, What type of cancer did you have?

Dec 28, 2021
Toppermost : Hey Adam. High 5 to a double ostomate! We are indeed, a rare breed. 4 years ago, I had a rare form of cancer called chordoma which consists of a tumour wrapped around the bottom of my spine which houses the nerves to my bladder and bowels, To remove the tumour they had to take the nerve within so 2 bags.I also had a superstar surgeon who had a dream team of 7 specialists who performed a 24 hour operation to cut out the f'in tumour 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 2 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 4 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 night is great. Can sleep thru. 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 ok? And which ostomy is a bigger pain in the ass to manage?
Dec 29, 2021
Bill : hello Adam & Toppermost.
I am so pleased that you two have come together to discuss the intricacies of the two-bag situation. Now I can sit back and learn from your experiences. Please don't take the other option and start communicating by personal messaging, as this would deprive all us others of this learning opportunity.
Best wishes
Dec 29, 2021
Caz67 : Welcome to the site, not a double bagger but definitely a friend as are all of us. Xx
Dec 29, 2021
Panko : Hi all,
Yes I can honestly say the urostomy is more hassle than the colostomy as it is relentless in passing urine all day & night & remembering to check it's full as you do not get the feeling that your bladder is full anymore so you have to police it yourself so constantly on check mode as for colostomy it's near normal as I'm having output once or twice aday & get on with life! 3 years in now & a way of life now no point in getting depressed as no point in opening the door to that one as sink or swim flight or fight?? I'm a fighter & love life I'm mid 50s & never thought I would be in this position in a million years & planning my funeral but in the middle of my crisis my partner got struck down with pancreatic cancer with only palliative care on offer that really shook me to the core & she only lasted 7 months so life really sucked but had to dust myself off & get back on my horse as had too much to live for but at same time made you realise we are not immortal & live for the day. It did bring things home that are more important than material things & money so I brought things forward or call it an early bucket list like buying a motorhome & started travelling like no tomorrow as I need to have my shower room & toilet etc close by so why not! Yes it is a big game changer & im doing things I thought I would do in my 60s/70s if I got there & who knows what shape I would of been in without having cancer so I see it as a blessing in disguise maybe??
Go well & stay well
Dec 29, 2021
Panko : I would like to hear from peeps about their experience with their pouches & leakage etc as I had two pouches that were different brands & leaked all the time or did not last the two days they were designed for! Partly because it is all new territory & the other half was incompetent stoma nurse who do fxxk all for you as in offering different bags to stoma belts & 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 & things changed over night because she had compassion & a fellow cancer survivor so we had a connection from day one & she turned my life around with much better bags which I can relax & go out & wine & dine in moderation with out 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 & bad the ones who can't be bothered to go the extra mile as at the end of day they do not walk in your shoes! I have tried quite a few manufactures lately & always make a point of trying samples from different makers half of them the stoma nurses have not heard of so who's educating who for example I started off with 2 litre night bags which were full in 6 hours so I had to set my alarm so it never backed up to my urostomy bag & leaked what a pain in the arse so I asked for bigger bags to be told they are the biggest so I ended up finding 3 litre bags made by great bear & my supplier did not believe me until I sent them the details now I can lay in for upto 8 hours leak free! So don't take no for an answer! Rant over! TC
Dec 30, 2021
Caz67 : Hi
Thanks for your post I have a illeostomy which tbh was a big shock if you read my profile. I have had a few problems with leaking 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 leak's. I have tried a few different bags from suppliers but I have found for me the sensura Mio by colorplast is better. Glad to hear your 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
Dec 30, 2021
Panko : Hi Caz, yes pouches or bags whatever you want to call them are a mine field? At first you think that what you start with are the best for you as your stoma nurse would of selected them for you depending on your stoma shape but after things settle so does your stoma or change 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 a moment but hoping to get it sorted back up 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 & sloppy so then months down the line the hernia forms & starts pushing through the stoma hole too as it's the path of less resistance.My older brother had an ileostomy for a while but had it reversed & had the hernia repaired at 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 were not sticking too good so then I used the Coloplast brava tape extenders which are horse shoe shaped to give you extra grip but too be honest I think they created more leaks! I found the Coloplast mouldable ring worked better you put them on the inside of the bag around the ring then stick them too your body or you can use a paste like my brother did I have not personally unless your contours are really up & down?? I recently changed my Coloplast bags to Holister which I found are much better using the brava tape extenders work better with these bags & so far had no leaks!! My brother used Dansac 2 piece bags for his ileostomy & Drainable so you have a base plate you change every 3/4 days & bags just clip on seal quick & easy ?? But different cleaning regime 6 of one & half the other??? I prefer one piece bags try SALTS BE Confidence as I used to use them as they have a wide flange 75mm & were bullitt proof & bomb proof never had a leaker & sure they make them for ileostomy as I had them on my colostomy & miss them as had to get a bigger bag due to prolapsed stoma! Hope this helps also try OAKMED & Pelican & wellmed a flushable bag! Yes flushable I tried but they are not perfected it yet 80% there when 100% I will try again as will revolutionise bags as we know them! Take care Adam
Dec 30, 2021
Toppermost : Hi Panko and thanks to EVERYONE else who has extended a warm welcome to me. This is great being able to talk about all this shit. Panko, being a double bagger,your reply made me laugh and cry. The colostomates know about the regular shit shows they endure but only a urostomate knows what a piss-off a urostomy can be. It's all kind of slapstick comedy but not so easy to laugh when it's happening to you. So I got a good laugh (probably at myself) reading about your pee bag issues. In same way, the real life parts of your story tugged at my heart strings because I know how you feel, having lived through a similar nightmare. Sounds like we both survived and are blessed to be able to say. What does kill you, makes you stronger. More to say later…
Dec 30, 2021
Toppermost : OOPS!. What doesn't kill you makes you stronger( Worth repeating)
Dec 30, 2021
Panko : I'm interested in what gets you through the day? & what gets you through the night??
Dr Panko
Dec 30, 2021
Panko : Yes topper you got to laugh as you can easily go mad! Anyway laughter is better than any meds I've had lately!
I keep reading about peeps who let rip or fart in public places & it brought an old story to mind from an old lady I knew who lived through 2 wars Lilian her name & she was in the land army & what a character she was! Anyway she was brought up in the garden of England kent & told me this story of a man who was buried in a local grave yard there & on his head stone was a poem!
Where ever 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 this man was a anal retainer & tried his best to hold a fart in whilst in church but it ended up being the demise of him & died! I just hope it was not spontaneous human combustion as shit would of gone every where! That's a true story!
Dec 30, 2021
Toppermost : Agree again doc. Laughter sets the soul free. To answer your question of what gets me thru day and night…that's a big one but in the most general terms I have to say gratitude. Like you, I lost everything because of my illness and for a couple years life did not feel sustainable with the level of chronic pain I was in. So I kind of feel I was a gonner so this stage is a bonus. As you mentioned, there are silver linings, most of which are gratitude and newfound wisdom. The challenges of everyday life are a different story.
Signing off for now…Dr.Toppermost
Dec 31, 2021
Bill : Hello Toppermost.
I agree about gratitude and, just in case you missed it, I will copy & paste my rhyme again on your post.
Best wishes

The worst of times has got to be
when first you find your ostomy.
You can no longer hide away
it's on your side and there to stay.

It shakes you to the very core
and makes you feel that you deplore
the very thing that helped you to
avoid the brink and then pull through.

In those early days you're stressed
and easily become depressed.
After your stoma comes along
you start to grow healthy and strong.

If you proceed I feel you'll find
this will recede within your mind.
Then you may start to understand
as you take part and play your hand.

I found life's game's not done until
you're underground and lying still.
Not much to be hateful for
but much you can be grateful for.

With experience comes a kind
of recognizance in your mind.
From introspective attitude
onto respect and gratitude.

I ponder problems that I had
and yonder trouble bad and sad.
I am now grateful to be free
from all that pain and misery.

It's not just all the things you've got
but must include the grot you've not.
I now conclude my attitude
tries to exude my gratitude.

B. Withers 2013

Dec 31, 2021
Toppermost : Very Nice Bill. Thanks for sharing. One more point on gratitude…..
Attitude + Gratitude = Altitude
Happy New Year
Dec 31, 2021
Bill : Hello Toppermost.
A good point well made!
Best wishes
Dec 31, 2021
Panko : Hello B.Withers,
Great poem with great words it took me back abit to the start of my journey & how things have planned out?
For better or worse? I know it makes you re-evaluate your life & get everything into prospective & what's really important?
Yes your spot on Topper Attitude & Gratitude go hand in hand along with hope,faith & charity with good cheer!
I think at the end of the day what ever journey we have all been on we are mostly thankful we are still here with a good quality of life as many do not?
Bill Withers was one of my favourite song writers & singers back in the 70s/80s & one of the first vinyl albums I had bought “watching you watching me”
The lyrics are still etched in my brain & have never heard heard heart warming words from any other song writer come close to him, I saw him live in 1985
At the corn exchange in Cambridge he was awesome & felt privileged to finally see him in the flesh, His biggest hit was probably “Lovely Day” which I'm sure it's going to be!
He passed away a few years ago & a big loss in the music industry. God bless xXx
Dec 31, 2021
Bill : Hello Panko.
Thank you for the mention and thanks for your perspectives. I too liked the singer/songwriter 'Bill Withers' and agree wholeheartedly that his lyrics and singing were superb. I had never heard of him until years after I adopted his name as a nom de plume. However, that did nothing to dampen my enthusiasm and admiration for him when he did appear on the music scene.
Here's hoping you read my eulogy to him when he finally died, but if you didn't, I will reproduce it for you below to maybe jog some pleasant memories.
Best wishes

I thought I ought to write some rhyme,
acknowledging that over time,
Bill and I have shared a name,
which may have brought us both some fame.

Whilst Bill's fame was on the stage,
mine was on the written page,
and he had talent with his songs
while I was busy righting wrongs.

I had a great respect for Bill,
and now he's dead I have this still,
for all his music will live on
long after Bill is dead and gone.

I admired Bill because
in his early life he was
not from a privileged descent
and yet, he made that great ascent.

From a poor start, he did not stop
until he rose right to the top,
and through his songs he took control,
expressing himself through his soul.

For him, singing was a career,
where he created atmosphere,
and mesmerised by mellow voice
people listened out of choice.

I loved the way his mellow sound
encompassed me and would surround
me with a sense of contentment
whilst listening to his sentiment.

The fact that we both shared a name,
did not mean we were the same,
but if we had been in some way
then I would think that was okay.

B. Withers 2020
Jan 01, 2022
Caz67 : Fantastic word's for your name sake Bill xx
Jan 01, 2022
Panko : Bill, you just have a knack with words that just seem to flow it must feel great to string them all togeather & in sync, I imagine it's like song writing but harder as most songs don't make much sense these days anyway with the different dialects & accents you can hardly understand some singers!
Anyway you fired up my sinaspses & I had to dig out Bill Withers 1986 vinyl album “watching you watching me” I remember too well when he released “Oh Yeah” in 86 then the album off the back of it which is his finest in my opinion apart from his big hitters we all know, one track on the album “you just can't smile it away” he describes how love moves mountains & if you close your eyes you can hear them move that was the power & depth of his wonderful voice. Well now I'm going to have to dust this album off & spin it on my turntable! Thx Bill
Jan 01, 2022
Bill : What better way to spend one's time - than listening to songs in rhyme?
Jan 02, 2022
sunflower111 : Welcome :) I'm just finding my way around this site too. Folks are friendly here.
Jan 07, 2022
wiljpeters : Welcome to the site! I too am a double bagger with a full APR since May of 2019. Certainly a life change and still challenging. Good to see I'm not the only one :)
Jan 07, 2022
Toppermost : 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 tumour wrapped around my spine. The nerves supplying my pelvis came out with the tumour. 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 ok with my dynamic duo, likely a small mercy given the fact they are the lesser of my post operative 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.
Jan 10, 2022
Panko : Don't know how you coped for 6 months in hospital hope the food was nice & nurses that would of sent me stir crazy ????
Jan 11, 2022
Toppermost : Hey Panko. I wasn't stir crazy. More like bat shit crazy! My first 2 months in the hospital were easy, because I was not fully conscious and have no memory of it. Didn't come out of anaesthesia and on a ventilator for 2 weeks then when I did I was literally out of my mind. Pulling lines, tubes etc out of my body. Couldn't feed myself, wouldn't eat, ranted about paranoid thoughts, and hallucinations, I claimed that the nurses were terrorist. Regularly pleading that I wanted to die. Then one day I just fully “woke up “ having no idea what had gone on.and I was my normal self After that though, all the nurses were amazingly nice., treating me like I came back from the dead. Pre Covid days. Cool thing about it is by time I awoke my ostomies and surgery had already healed.
Jan 11, 2022
Panko : Yeah must admit I thought I was in a hospital for spare parts for wealthy people & your organs went to the highest bidder!
Fuck me my head was well & 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 & hey think thank fuck that was a nightmare?

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