Discussion
FlyingMeeces said:
leggly said:
Well, having had the snippet valve disconnected for two months now. Imagine my surprise when after an enema to X-ray the intestines (which looked empty of course) I can't get off the loo. 
Still apparently it all looks healthy and healed at the moment so a reversal op looks likely soon rather than later. I must admit I won't miss changing the bloody bag.
Result! Still apparently it all looks healthy and healed at the moment so a reversal op looks likely soon rather than later. I must admit I won't miss changing the bloody bag. 
I'm back at work now as well. 
It looks like I’ll be joining the club in September!
Rather than start a new thread I’ll add a bit of my story here and see if it prompts others.
I was diagnosed with UC in 2007. After an absolutely hellish few years with no sign of remission I found myself hospitalised in 2013. At that point all the conversations were around surgical options as there was very little medical help available for UC patients.
My specialist decided to go another route and diagnosed me with ‘Crohns Colitis’ which opened up options for Infliximab and Humira. After a couple of years on each, I was moved onto Vedolizumab. This was a game changer. Since 2016 my life has been pretty much ‘normal’ - I’m still careful with certain foods/drink, but otherwise function at a decent level with less fatigue/bone ache/toilet trips. Having had 10 years out of the solid stool game I find myself impressed daily with what I can now produce.
So all’s going well, except..
I went in for a routine colonoscopy a few weeks back. I’d put it off for far longer than I should’ve because things were great. Inside things were a mess with a number of areas of intense scarring, some active UC and precancerous polyps. Balls!
I was booked back in for another colonoscopy.. two in two months isn’t particularly fun, (I’ll save the bowel prep stories for another thread) but needs must. They used a dye spray and confirmed after various photos/biopsies that my whole colon needs removing. I now have a decisions to make between permanent stoma, or a temporary one and having a ‘J pouch’.
I’m kind of decided on the permanent stoma route, I’m really not that bothered. I fought it when it was stoma vs UC, however stoma vs Cancer is a whole different fight and not something I’m prepared to mess around with.
It’s interesting to hear the opinions of others, but UC/Crohns forums generally bring out the worst case stories. I’ll keep the thread updated when I have news, I’m meeting stoma nurses later this month so should have an idea what I’m up against.
Rather than start a new thread I’ll add a bit of my story here and see if it prompts others.
I was diagnosed with UC in 2007. After an absolutely hellish few years with no sign of remission I found myself hospitalised in 2013. At that point all the conversations were around surgical options as there was very little medical help available for UC patients.
My specialist decided to go another route and diagnosed me with ‘Crohns Colitis’ which opened up options for Infliximab and Humira. After a couple of years on each, I was moved onto Vedolizumab. This was a game changer. Since 2016 my life has been pretty much ‘normal’ - I’m still careful with certain foods/drink, but otherwise function at a decent level with less fatigue/bone ache/toilet trips. Having had 10 years out of the solid stool game I find myself impressed daily with what I can now produce.
So all’s going well, except..
I went in for a routine colonoscopy a few weeks back. I’d put it off for far longer than I should’ve because things were great. Inside things were a mess with a number of areas of intense scarring, some active UC and precancerous polyps. Balls!
I was booked back in for another colonoscopy.. two in two months isn’t particularly fun, (I’ll save the bowel prep stories for another thread) but needs must. They used a dye spray and confirmed after various photos/biopsies that my whole colon needs removing. I now have a decisions to make between permanent stoma, or a temporary one and having a ‘J pouch’.
I’m kind of decided on the permanent stoma route, I’m really not that bothered. I fought it when it was stoma vs UC, however stoma vs Cancer is a whole different fight and not something I’m prepared to mess around with.
It’s interesting to hear the opinions of others, but UC/Crohns forums generally bring out the worst case stories. I’ll keep the thread updated when I have news, I’m meeting stoma nurses later this month so should have an idea what I’m up against.
I've recently joined the club.
Mine was installed to combat Crohn's, but came about by a roundabout route. I was diagnosed with Crohn's as a child, and after a somewhat sickly childhood it went a bit quieter and I thought I had got off lightly compared to many - I led a largely normal, active life and rowed at a reasonably high level for many years. Recently I have been diagnosed with pulmonary fibrosis, the only cure for which is a lung transplant. Having been for transplant assessment, I was "not ill enough" to go on the transplant list. Fast forward a few months and I end up in hospital with sepsis caused by a fistula. By this stage my lung function had declined to the point where I would ordinarily go on the transplant list; however, as they shut down your immune system completely for transplant, they won't put me on the list due to the infection risk posed by the fistula. The fistula is inoperable due to where in the gut it is, so Plan B was a stoma - ie divert the flow away from the fistula. Step forward a further complication: by this stage my lung function is such that to intubate me for a general anaesthetic was considered highly risky, so I ended up having it done under a spinal. That was one of life's bizarre experiences: wide awake, chatting to the anaesthetist and her assistants,a curtain across my midriff, the other side of which 2 surgeons are slicing open my stomach. And you can occasionally feel them rooting about.
I'm used to the stoma now; just waiting to see what the situation is with the fistula and whether I can now get on the transplant list. It was a bit weird to start with (reminded me vaguely of an Alien embryo), but I'm now used to it. Such a simple thing conceptually but a game changer for many people.
Mine was installed to combat Crohn's, but came about by a roundabout route. I was diagnosed with Crohn's as a child, and after a somewhat sickly childhood it went a bit quieter and I thought I had got off lightly compared to many - I led a largely normal, active life and rowed at a reasonably high level for many years. Recently I have been diagnosed with pulmonary fibrosis, the only cure for which is a lung transplant. Having been for transplant assessment, I was "not ill enough" to go on the transplant list. Fast forward a few months and I end up in hospital with sepsis caused by a fistula. By this stage my lung function had declined to the point where I would ordinarily go on the transplant list; however, as they shut down your immune system completely for transplant, they won't put me on the list due to the infection risk posed by the fistula. The fistula is inoperable due to where in the gut it is, so Plan B was a stoma - ie divert the flow away from the fistula. Step forward a further complication: by this stage my lung function is such that to intubate me for a general anaesthetic was considered highly risky, so I ended up having it done under a spinal. That was one of life's bizarre experiences: wide awake, chatting to the anaesthetist and her assistants,a curtain across my midriff, the other side of which 2 surgeons are slicing open my stomach. And you can occasionally feel them rooting about.
I'm used to the stoma now; just waiting to see what the situation is with the fistula and whether I can now get on the transplant list. It was a bit weird to start with (reminded me vaguely of an Alien embryo), but I'm now used to it. Such a simple thing conceptually but a game changer for many people.
Europa1 said:
I'm used to the stoma now; just waiting to see what the situation is with the fistula and whether I can now get on the transplant list. It was a bit weird to start with (reminded me vaguely of an Alien embryo), but I'm now used to it. Such a simple thing conceptually but a game changer for many people.
Thanks for posting, it seems like you’re going through a tough spell, so fingers crossed for you with the next steps. In terms of recovery and getting used to things, how long were you In hospital for? And how long to get back to work? Have you had issues with fixing bags/leaking?
I spend a fair amount of time in the car and don’t know if it’ll get in the way of the belt etc or feel uncomfortable sitting down. I guess the IBD nurses will go through all of this, but it’s good to get first hand info!
I suffered with UC for many years undiagnosed * , finally getting diagnosed in 1995. By then my health was sufficiently bad to need full removal of large intestine, with the surgeon telling Swmbo that I had no more than a 50% chance of surviving the operation.
My surgeon (Peter Sagar) at Leeds was able to re-route my small intestine such that he created an internal pouch. This meant that I had a stoma for around 6 months and then that was closed off and the internal pouch came into play. All fairly new to the U.K. when I had it done. (post-ileal pouch with anal anastomoses if anyone’s interested)
All these years later and I’ve completely adapted to things, a bit careful on diet sometimes and the massive number of drugs I had to take have taken their toll on liver etc so I am no longer able to tolerate alcohol. A small price to pay!
The * above is because interestingly my mother also had UC, and has had a stoma for the past 45 years. There are few 85 year olds who can match her vigour and lust for life! Also what was interesting is that despite family connection, no Dr even considered my fatigue, upset digestive system and general malaise might be connected to an auto immune system disease...
So in answer to the question, no I don’t have a stoma but have first hand and family experience and there is no doubt life definitely continues post stoma, with very little restriction - but sometime you have to be bloody minded and determined to make the best of a situation rather than be a slave to it.
My surgeon (Peter Sagar) at Leeds was able to re-route my small intestine such that he created an internal pouch. This meant that I had a stoma for around 6 months and then that was closed off and the internal pouch came into play. All fairly new to the U.K. when I had it done. (post-ileal pouch with anal anastomoses if anyone’s interested)
All these years later and I’ve completely adapted to things, a bit careful on diet sometimes and the massive number of drugs I had to take have taken their toll on liver etc so I am no longer able to tolerate alcohol. A small price to pay!
The * above is because interestingly my mother also had UC, and has had a stoma for the past 45 years. There are few 85 year olds who can match her vigour and lust for life! Also what was interesting is that despite family connection, no Dr even considered my fatigue, upset digestive system and general malaise might be connected to an auto immune system disease...
So in answer to the question, no I don’t have a stoma but have first hand and family experience and there is no doubt life definitely continues post stoma, with very little restriction - but sometime you have to be bloody minded and determined to make the best of a situation rather than be a slave to it.
I had a stoma for eleven months after a bowel cancer op.
Strange at first but got used to it quite easily, only had two malfunctions where the bag came adrift in that length of time.
Got a reversal after eleven months--which wasn't much fun for a long time, could have easily continued with the stoma without a a care.
Strange at first but got used to it quite easily, only had two malfunctions where the bag came adrift in that length of time.
Got a reversal after eleven months--which wasn't much fun for a long time, could have easily continued with the stoma without a a care.
bristolbaron said:
Thanks for posting, it seems like you’re going through a tough spell, so fingers crossed for you with the next steps.
In terms of recovery and getting used to things, how long were you In hospital for? And how long to get back to work? Have you had issues with fixing bags/leaking?
I spend a fair amount of time in the car and don’t know if it’ll get in the way of the belt etc or feel uncomfortable sitting down. I guess the IBD nurses will go through all of this, but it’s good to get first hand info!
Thank you; yes, fingers are firmly crossed! It's been a pretty gloomy patch, I have to say, but all you can do is keep buggering on.In terms of recovery and getting used to things, how long were you In hospital for? And how long to get back to work? Have you had issues with fixing bags/leaking?
I spend a fair amount of time in the car and don’t know if it’ll get in the way of the belt etc or feel uncomfortable sitting down. I guess the IBD nurses will go through all of this, but it’s good to get first hand info!
I was in hospital for a week - but I was an odd case because of my lung condition: they put in intensive care post op to monitor me, plus I needed extra care having had a spinal - it takes a while to get use of your legs back, so I had the physio team visiting, then off work for a further 2.5 weeks. I have had one minor leak. No problems with getting the bags fixed on - the stoma team at the hospital will give you a lesson, and you won't be discharged until they're happy you can manage it solo. I am still a bit nervous about getting in/out of the car and driving, but no issues so far.
It has actually improved my life, in that I am no longer feeling the need to go the loo, which used to mean (particularly at work) switching from the static oxygen machine to a portable tank then trying to get to the loo quickly but without being a panting, coughing wreck by the time I got there. Plus I have got some time back each day, as I am no longer in the toilet so often or for so long.
You'll need to be upfront with friends and colleagues about it - you won't have muscular control over it, so your days of being able to quietly float an air biscuit are over: there will be squeaks and splutters. But no smell.
Any other questions, just shout.
Fat Wolfie said:
So in answer to the question, no I don’t have a stoma but have first hand and family experience and there is no doubt life definitely continues post stoma, with very little restriction - but sometime you have to be bloody minded and determined to make the best of a situation rather than be a slave to it.
All interesting reading, it sounds like you had a very early J pouch, which is the other option available to me. Except for the booze how do you find it to live with? I’ve heard there’s more frequency/urgency but otherwise fairly ‘normal’? Stan the Bat said:
I had a stoma for eleven months after a bowel cancer op.
Strange at first but got used to it quite easily, only had two malfunctions where the bag came adrift in that length of time.
Got a reversal after eleven months--which wasn't much fun for a long time, could have easily continued with the stoma without a a care.
Your feelings towards it seem in line with mine, stoma becomes negligible compared to cancer! With the reversal, did you lose a section or full colon? I guess keeping a spare shirt and some wipes in the car is a good idea in case accidents happen?Strange at first but got used to it quite easily, only had two malfunctions where the bag came adrift in that length of time.
Got a reversal after eleven months--which wasn't much fun for a long time, could have easily continued with the stoma without a a care.
Europa1 said:
You'll need to be upfront with friends and colleagues about it - you won't have muscular control over it, so your days of being able to quietly float an air biscuit are over: there will be squeaks and splutters. But no smell.
Any other questions, just shout.
Mate it sounds like it’s been hell. At least it’s giving some relief now. I’d not clicked that there will be no more Dutch ovens available! Devastating! Any other questions, just shout.
I’ll be in touch after speaking with the nurses if I think of anything, thank you for your replies.
bristolbaron said:
It looks like I’ll be joining the club in September!
Rather than start a new thread I’ll add a bit of my story here and see if it prompts others.
I was diagnosed with UC in 2007. After an absolutely hellish few years with no sign of remission I found myself hospitalised in 2013. At that point all the conversations were around surgical options as there was very little medical help available for UC patients.
My specialist decided to go another route and diagnosed me with ‘Crohns Colitis’ which opened up options for Infliximab and Humira. After a couple of years on each, I was moved onto Vedolizumab. This was a game changer. Since 2016 my life has been pretty much ‘normal’ - I’m still careful with certain foods/drink, but otherwise function at a decent level with less fatigue/bone ache/toilet trips. Having had 10 years out of the solid stool game I find myself impressed daily with what I can now produce.
So all’s going well, except..
I went in for a routine colonoscopy a few weeks back. I’d put it off for far longer than I should’ve because things were great. Inside things were a mess with a number of areas of intense scarring, some active UC and precancerous polyps. Balls!
I was booked back in for another colonoscopy.. two in two months isn’t particularly fun, (I’ll save the bowel prep stories for another thread) but needs must. They used a dye spray and confirmed after various photos/biopsies that my whole colon needs removing. I now have a decisions to make between permanent stoma, or a temporary one and having a ‘J pouch’.
I’m kind of decided on the permanent stoma route, I’m really not that bothered. I fought it when it was stoma vs UC, however stoma vs Cancer is a whole different fight and not something I’m prepared to mess around with.
It’s interesting to hear the opinions of others, but UC/Crohns forums generally bring out the worst case stories. I’ll keep the thread updated when I have news, I’m meeting stoma nurses later this month so should have an idea what I’m up against.
Personally, I'd avoid the jpouch, hardly heard of any being successful long term, sister is a dietician who specialises in this and she wouldn't even let me consider it lolRather than start a new thread I’ll add a bit of my story here and see if it prompts others.
I was diagnosed with UC in 2007. After an absolutely hellish few years with no sign of remission I found myself hospitalised in 2013. At that point all the conversations were around surgical options as there was very little medical help available for UC patients.
My specialist decided to go another route and diagnosed me with ‘Crohns Colitis’ which opened up options for Infliximab and Humira. After a couple of years on each, I was moved onto Vedolizumab. This was a game changer. Since 2016 my life has been pretty much ‘normal’ - I’m still careful with certain foods/drink, but otherwise function at a decent level with less fatigue/bone ache/toilet trips. Having had 10 years out of the solid stool game I find myself impressed daily with what I can now produce.
So all’s going well, except..
I went in for a routine colonoscopy a few weeks back. I’d put it off for far longer than I should’ve because things were great. Inside things were a mess with a number of areas of intense scarring, some active UC and precancerous polyps. Balls!
I was booked back in for another colonoscopy.. two in two months isn’t particularly fun, (I’ll save the bowel prep stories for another thread) but needs must. They used a dye spray and confirmed after various photos/biopsies that my whole colon needs removing. I now have a decisions to make between permanent stoma, or a temporary one and having a ‘J pouch’.
I’m kind of decided on the permanent stoma route, I’m really not that bothered. I fought it when it was stoma vs UC, however stoma vs Cancer is a whole different fight and not something I’m prepared to mess around with.
It’s interesting to hear the opinions of others, but UC/Crohns forums generally bring out the worst case stories. I’ll keep the thread updated when I have news, I’m meeting stoma nurses later this month so should have an idea what I’m up against.
I've gotten use to having the bag though and now live pretty much trouble free, but that's not to say everyone gets to that point aswell!
nail_it said:
Interested to follow up to see if you had the rectal stump removed and the outcome.
In a similar situation at mo ...huh!
Sorry I never replied to this, missed this thread as I'd changed my email. In a similar situation at mo ...huh!
How'd you get on in the end?
Mine never got removed, they attempted but after puncturing my bowel 3 times and excessive scar tissue was deemed to risky to carry on (plus it'd been several hours already and they'd just effectively made things worse!
Had a few flare ups since of my stump but seems to have chilled out recently
bristolbaron said:
Mate it sounds like it’s been hell. At least it’s giving some relief now. I’d not clicked that there will be no more Dutch ovens available! Devastating!
I’ll be in touch after speaking with the nurses if I think of anything, thank you for your replies.
Oh trust me you can still 'fart' if you really wanna cause some pain, I've often had to 'burp' my bag if I've been out and it's filled with gas and there's not a loo nearby,never done it to anyone on purpose yet though lolI’ll be in touch after speaking with the nurses if I think of anything, thank you for your replies.
I'll admit my 1st year or so with it was hell, but the stoma car teams back then were none existent and what advice they did give was all wrong.
But I was in and out of the hospital in less than a week, it's painful to begin with obvs, but I don't get any pain from it now, you get like an itchyness to it if your not getting a good seal or it's getting abit old and the skin starts to get sore round the edge, or for example you have a loaf of vinigar on your chips! But then that wil also depend on how much bowel you have left.
bristolbaron said:
All interesting reading, it sounds like you had a very early J pouch, which is the other option available to me. Except for the booze how do you find it to live with? I’ve heard there’s more frequency/urgency but otherwise fairly ‘normal’?
You’re right, it is/was an early J pouch (at the time they were experimenting with S and W pouch, I don’t know which has ultimately been deemed the best).I find the J fairly easy to live with but I’m a stubborn bugger who refuses to be defined by the pouch/it’s restrictions.
Probably the best way to describe the day to day live is a bit like being a small child again. In so far as once you eat, within a fairly short time frame what you’ve eaten will start to push through and I need to empty the pouch.
The first few years were not so good (but much better than being unwell!) and they were the inevitable sharting incidents. Embarrassing for sure but no one died...
Over the years the pouch has become more like a colon in so far as there is a very high element of control and no daytime sharting for maybe 7 or 8 years. There is sometimes a bit of night time leakage but only when in a really deep sleep. I have a very understanding Swmbo !
In the immediate post operative aftermath there was a lot of pain as things healed, but relatively short term.
Health wise, it doesn’t really stop me from doing anything I want - I’ve done 2 half marathons, 3 sprint triathlons and a couple of seasons of cross country running. I didn’t used to do anything! But to be fair I’ve not done any major exercise like that for about 5 years now.
It takes a bit of time to work out what food you can/should eat, which will clog you up and which will pass through too quickly, and which will cause internal pressure and cause leakage. These foods will be different for everyone, and there’s no quick fix other than experimentation.
If you want to know more, please feel free to PM me.
bristolbaron said:
Stan the Bat said:
I had a stoma for eleven months after a bowel cancer op.
Strange at first but got used to it quite easily, only had two malfunctions where the bag came adrift in that length of time.
Got a reversal after eleven months--which wasn't much fun for a long time, could have easily continued with the stoma without a a care.
Your feelings towards it seem in line with mine, stoma becomes negligible compared to cancer! With the reversal, did you lose a section or full colon? I guess keeping a spare shirt and some wipes in the car is a good idea in case accidents happen?Strange at first but got used to it quite easily, only had two malfunctions where the bag came adrift in that length of time.
Got a reversal after eleven months--which wasn't much fun for a long time, could have easily continued with the stoma without a a care.
Yes, it's best to keep a 'kit' with you when out and about.
I was also doing intermittent self-catheterisation at the time so had to take these with me as well.
Keeping spares is worth it to start with but you should get the point where you won't need to, I think I've only had 1 situation in the last few years where it would have been useful.
Went to water park in tenerife and instead of being Simon Cowell with my shorts over it I had my shorts at normal height.
1st thing we did was went to the wave machine and I stodd up to it shouting I am invincible!
Only for it to rip my bag off and send it round my back (wear a belt with it)
At that point if I had a spare I would have cleaned and dried up and put a new one on as the ahedesive when it's wet goes quite slimy.
Couldn't be arsed to drive Al the way back so went loo, dried it all off as best as poss, stuck it back in place and sat in the sun for half hour to let dry and stick again and was fine then for the rest of the day and went of the rest of the water slides.
Looking back it would have been sensible to take a spare bag but I honestly don't have any fear or concern for any sort of leaks or issues these days
Untill I got the right bags etc I did have issues and leaks but it's certainly not somethig you should have to live with forever
Went to water park in tenerife and instead of being Simon Cowell with my shorts over it I had my shorts at normal height.
1st thing we did was went to the wave machine and I stodd up to it shouting I am invincible!
Only for it to rip my bag off and send it round my back (wear a belt with it)
At that point if I had a spare I would have cleaned and dried up and put a new one on as the ahedesive when it's wet goes quite slimy.
Couldn't be arsed to drive Al the way back so went loo, dried it all off as best as poss, stuck it back in place and sat in the sun for half hour to let dry and stick again and was fine then for the rest of the day and went of the rest of the water slides.
Looking back it would have been sensible to take a spare bag but I honestly don't have any fear or concern for any sort of leaks or issues these days
Untill I got the right bags etc I did have issues and leaks but it's certainly not somethig you should have to live with forever
J-pouch for 10 years, ran the London marathon, can't drink fizzy drinks, need to lie down to fart, have a VERY noisy digestive system.
Long story but my stitches ripped open in hospital so the wound didn't heal properly round the stoma. Really struggled with the bag, sometimes it felt like someone was putting out a cigarette on my stomach.
Good luck to anyone going through this, the mental aspect is challenging but i feel i've come out of it a better person if that makes sense.
Long story but my stitches ripped open in hospital so the wound didn't heal properly round the stoma. Really struggled with the bag, sometimes it felt like someone was putting out a cigarette on my stomach.
Good luck to anyone going through this, the mental aspect is challenging but i feel i've come out of it a better person if that makes sense.
honest_delboy said:
J-pouch for 10 years, ran the London marathon, can't drink fizzy drinks, need to lie down to fart, have a VERY noisy digestive system.
Long story but my stitches ripped open in hospital so the wound didn't heal properly round the stoma. Really struggled with the bag, sometimes it felt like someone was putting out a cigarette on my stomach.
Good luck to anyone going through this, the mental aspect is challenging but i feel i've come out of it a better person if that makes sense.
Interesting - after I had the stoma closed, the whole stoma scar burst open when we were out in the car...(Swmbo was driving). Pretty scary to have a gaping 5 inch wound in your side, no blood but plenty of clear fluid. Long story but my stitches ripped open in hospital so the wound didn't heal properly round the stoma. Really struggled with the bag, sometimes it felt like someone was putting out a cigarette on my stomach.
Good luck to anyone going through this, the mental aspect is challenging but i feel i've come out of it a better person if that makes sense.
We go home and Swmbo said “whatever you do, don’t look at it”.
I looked.
I passed out.
Swmbo then took me back to hospital where I was re- stapled and all was well after that
Out of interest, has anyone had any hernia issues?
Because of my lung condition, I cough a lot and was worried I'd done myself a mischief, but it seems to have just been a pulled muscle. However, my stoma nurse has suggested I should get a support belt.
Any experiences people want to share?
Because of my lung condition, I cough a lot and was worried I'd done myself a mischief, but it seems to have just been a pulled muscle. However, my stoma nurse has suggested I should get a support belt.
Any experiences people want to share?
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