Anyone had a stoma ?

[Tricky Dicky]

Best wishes TD,

My Mum had a stoma for a while, after her bowel cancer op. Better than having cancer of course, but I don't think she ever got used to it. Though she was quite hesistant at having the reversal done as the original op was very tough. She went through with the reversal though, and it was fine.

Thanks. By my count that's about 3-1 success against problematic for the reversal so far. I hope for a few more success stories to ease my mind a little.

 

[Jam The Man]

thats it cheer him up

ever thought of holding your tongue and not saying anything?

Yeah alright mate. I apologised and if mods wish to delete my post, then please feel free to do so.

I posted with innocent intent as I know my dad would have liked to have known some more facts before suffering what he has had to do - i would never mean to kick someone when they are down. I've had enough personal abuse hurled at me on this website to deliberately do the same to someone who is going through a rough time themselves, and I wish Tricky Dicky all the succes in the world.

 

[Tricky Dicky]

Yeah alright mate. I apologised and if mods wish to delete my post, then please feel free to do so.

I posted with innocent intent as I know my dad would have liked to have known some more facts before suffering what he has had to do - i would never mean to kick someone when they are down. I've had enough personal abuse hurled at me on this website to deliberately do the same to someone who is going through a rough time themselves, and I wish Tricky Dicky all the succes in the world.

Don't worry about it Jam, better to hear the good as well as the not so good stories to get a truer picture (unless something is posted out of spite, but I don't believe that for a second). Hope your dad is ok these days.

 

[Jam The Man]

Don't worry about it Jam, better to hear the good as well as the not so good stories to get a truer picture (unless something is posted out of spite, but I don't believe that for a second). Hope your dad is ok these days.

Thanks TD. I genuinely meant no offence, but i can see that it may have come across as insensitive. Dad had a rough road, but is better now than he's been for a long while - i'm sure his wasn't helped by lifestyle choices (excessive alcohol!)
I suspect you'll have a better experience - best of luck.

 

[Tricky Dicky]

Thanks TD. I genuinely meant no offence, but i can see that it may have come across as insensitive. Dad had a rough road, but is better now than he's been for a long while - i'm sure his wasn't helped by lifestyle choices (excessive alcohol!)
I suspect you'll have a better experience - best of luck.

Changing a stoma bag while pissed, now that's something I don't even want to contemplate

 

[Mo Gosfield]

Changing a stoma bag while pissed, now that's something I don't even want to contemplate

Best of luck with that one!
( Trying to change the bag when the stoma is active is bad enough! )

 

[sydney]

good luck tricky..hope things get better for you soon...all the best mate...

 

[Tricky Dicky]

Best of luck with that one!
( Trying to change the bag when the stoma is active is bad enough! )

Indeed, been there, done that. Fortunately, I don't reslly drink at the mo.

 

[Since1982]

Best of luck with that one!
( Trying to change the bag when the stoma is active is bad enough! )

Brings back memories! For a while I had a loop ileo which was a real bugger, it could keep going for hours, like a tap! Just on the reversal point - mine was a bit different because I lost all of my colon (ulcerative colitis) and had an internal pouch formed from my small bowel (brilliant surgery) so not really a reversal as such and with its own risks but for me its been good. I do think there is sense in letting your body recover between ops - I had my first in the Feb, second in the Nov and a third the following March and my surgeon wouldn't let me have them done any quicker than that. I actually got to love my stoma in a weird way - I saw it as something that represented my life saving surgery, once I got the hang of it I was in good shape, got back to running, drinking beer, eating curry and all the rest. I had to have a good long think before I began the surgical process to have it reversed and if I had to spend the rest of my life with it, whilst not ideal, I could have done it.

 

[Tricky Dicky]

Brings back memories! For a while I had a loop ileo which was a real bugger, it could keep going for hours, like a tap! Just on the reversal point - mine was a bit different because I lost all of my colon (ulcerative colitis) and had an internal pouch formed from my small bowel (brilliant surgery) so not really a reversal as such and with its own risks but for me its been good. I do think there is sense in letting your body recover between ops - I had my first in the Feb, second in the Nov and a third the following March and my surgeon wouldn't let me have them done any quicker than that. I actually got to love my stoma in a weird way - I saw it as something that represented my life saving surgery, once I got the hang of it I was in good shape, got back to running, drinking beer, eating curry and all the rest. I had to have a good long think before I began the surgical process to have it reversed and if I had to spend the rest of my life with it, whilst not ideal, I could have done it.

Teething problems aside, I can see that it could actually be easier than going for a dump naturally. I have had so many issues over the years with frequency and urgency, having the ability to just empty a bag when you can see it is starting to fill could be so much simpler - it's something you could do on the side of a road quite easily just with the aid of a tissue if the need arose.

We'll see when the time comes, but it may become a choice I need to make.

 

[Shropshire Seagull]

Hi, this is Mrs SS typing

I'm on the local IA committee [up here in Shrops] and I had a stoma for 3 years [at Hove Nuffield] about 15 years ago before having a J-pouch at RSCH - same surgeon, Mr Farrands, now retired, a lovely man.

As you can see everyone has different experiences. My first 3 years was a relief having suffered for so long with Ulcerative Colitis and I was only too happy to be able to do normal things with my husband and 2 very young children instead of being on the toilet all day. Having mastered the stoma and bags and having a new friend [the stoma] I was offered a reversal. I was really well and happy with my life but now feel I was maybe pushed into having the reversal. When you have a reversal and waiting for your pouch to heal and ready for use (not less than 4 months) this temporary stoma seems to be sighted quite close to the skin causing more leakages (didn't have any with the normal stoma) There are lots of supplies on the internet and they will be more than happy to send you some samples, there are lots of pastes and things called acubond strips to give extra security on your appliance. Your stoma nurse will also have suppliers details as well. I know they are busy people but they are there to support you and have a duty of care so use them.

The IA support is a brilliant support group and if you contact them they will put you in touch with a person who has had either a stoma or pouch and will be happy to answer your questions or if they can't, put you in touch with someone who can. I am myself one of those people who have had both and will be happy to help if I can. I was only 33 with 2 small children and I know how scary it felt and lonely but now you have a lot more support especially with the IA so don't feel alone. I just kept reminding myself that this changed my life for the better and no one needs to know what you have and you don't have to wearing boring clothes. I was a swimming teacher and was always in the pool and lived in my jeans.

I'm here if you need me. PM me if you want my number to call me and I wish you all the best.

Mrs SS

 

[Since1982]

Hi, this is Mrs SS typing

I'm on the local IA committee [up here in Shrops] and I had a stoma for 3 years [at Hove Nuffield] about 15 years ago before having a J-pouch at RSCH - same surgeon, Mr Farrands, now retired, a lovely man.

J Pouch at the Nuffield with Mr Farrands for me as well (sounds like a game of Cluedo!) He was a genius as far as I am concerned. And I'll second your further support and advice about IA - I couldn't have got through it all without them.

 

[Tricky Dicky]

Hi, this is Mrs SS typing

I'm on the local IA committee [up here in Shrops] and I had a stoma for 3 years [at Hove Nuffield] about 15 years ago before having a J-pouch at RSCH - same surgeon, Mr Farrands, now retired, a lovely man.

As you can see everyone has different experiences. My first 3 years was a relief having suffered for so long with Ulcerative Colitis and I was only too happy to be able to do normal things with my husband and 2 very young children instead of being on the toilet all day. Having mastered the stoma and bags and having a new friend [the stoma] I was offered a reversal. I was really well and happy with my life but now feel I was maybe pushed into having the reversal. When you have a reversal and waiting for your pouch to heal and ready for use (not less than 4 months) this temporary stoma seems to be sighted quite close to the skin causing more leakages (didn't have any with the normal stoma) There are lots of supplies on the internet and they will be more than happy to send you some samples, there are lots of pastes and things called acubond strips to give extra security on your appliance. Your stoma nurse will also have suppliers details as well. I know they are busy people but they are there to support you and have a duty of care so use them.

The IA support is a brilliant support group and if you contact them they will put you in touch with a person who has had either a stoma or pouch and will be happy to answer your questions or if they can't, put you in touch with someone who can. I am myself one of those people who have had both and will be happy to help if I can. I was only 33 with 2 small children and I know how scary it felt and lonely but now you have a lot more support especially with the IA so don't feel alone. I just kept reminding myself that this changed my life for the better and no one needs to know what you have and you don't have to wearing boring clothes. I was a swimming teacher and was always in the pool and lived in my jeans.

I'm here if you need me. PM me if you want my number to call me and I wish you all the best.

Mrs SS

Well, thank you very much for both the info and support. I know it's early days and I have a lot to learn, but the main this is to hope they got all the tumour out, without that everything else is rather for nought. I'll find something that works for me, I'm sure, and will look back on this in a couple of months.

 

[phazza]

Don't worry if you don't know what one is (I didn't until 12 days ago), if you knew anything useful, you would know what one was.

I had an op 12 days ago leaving me with a stoma for a while. I'm having "leakage" issues, which I'm finding very hard to cope with. Just wondering if anyone had any useful info to share.

i had a stoma about 6 years ago. it's not nice or comfortable. but i quickly thought it best to get on with it and laugh at rather that cry (which is what i wanted to do). go back to the hospital if it's not right they will help you out. as you know you have the stoma to allow the work thats been done to heel properly. so keep your chin up and be as possotive as poss. good luck

 

[Brightonfan1983]

Don't worry if you don't know what one is (I didn't until 12 days ago), if you knew anything useful, you would know what one was.

I had an op 12 days ago leaving me with a stoma for a while. I'm having "leakage" issues, which I'm finding very hard to cope with. Just wondering if anyone had any useful info to share.

Without reading through the whole 3 pages, and sorry if this has come up before, but the stoma nurse will give you a selection of 'joining parts' - convex/concave etc, as the wound and surrounding skin swells and retracts.

I know someone who went through this, and the reversal op was a piece of cake.

Hope it gets better for you.

 

[Leighgull]

WhooH, nobody has mentioned that. They said I'd have this for 4 to 6 months while my colon recovered, then we'd look to reverse it. It sounded like a rather simpler op with keyhole, so I'm going to have to discuss and think about this.

Pretty sure I'll want it reversed, I can't imagine living like this for the rest of my life, although if we can get over these teething problems and know how to live with this in a practical way and resume some sort of life, maybe it won't be too bad.

Early days and I'm sure it will get better, but that doesn't help me a lot right now.

Oh you poor soul. There is always a risk when forming and reversing a stoma but many people have both without too much hassle.

Leakage is very common. The most important thing is to get in touch with your "rhythm" once you know when you are likely to pass through it you can bung it off and use the bag when you know there is likely to be some product.

Plenty of fibre too obvs.

 

[Shropshire Seagull]

dup err

 

[Tricky Dicky]

NSC at its best. Thanks for all the input

 

[Seagull58]

WhooH, nobody has mentioned that. They said I'd have this for 4 to 6 months while my colon recovered, then we'd look to reverse it. It sounded like a rather simpler op with keyhole, so I'm going to have to discuss and think about this.

Pretty sure I'll want it reversed, I can't imagine living like this for the rest of my life, although if we can get over these teething problems and know how to live with this in a practical way and resume some sort of life, maybe it won't be too bad.

Early days and I'm sure it will get better, but that doesn't help me a lot right now.

My mother had an op for colon cancer, had a colostomy bag for a year and then had her colon reconnected. She passed away from unrelated issues more than 20 years later and never had any problems following the reversal EXCEPT she used to suffer from wind and could not stop herself breaking wind audibly!!
I hope this information is relevant to your situation.

 

[Tricky Dicky]

My mother had an op for colon cancer, had a colostomy bag for a year and then had her colon reconnected. She passed away from unrelated issues more than 20 years later and never had any problems following the reversal EXCEPT she used to suffer from wind and could not stop herself breaking wind audibly!!
I hope this information is relevant to your situation.

I think a bit of windy-pops is not too high a price to pay. Right now, 20 years sounds pretty good to me