Discussion
Just wondering if there are many on here with a stoma? seem to be surprisingly common these days without people realising?
I have been doing some mentoring on some Facebook groups and recently took on a solo travelling holiday to prove that a stoma shouldn't ever stop you from doing what you want to do.
So will just leave this here in case anyone ever comes across this thread on google, but would love to hear from others and help raise the profile of these awesome life re-inventing things rather than being seen in a bad way which I think a lot still do.
I have been doing some mentoring on some Facebook groups and recently took on a solo travelling holiday to prove that a stoma shouldn't ever stop you from doing what you want to do.
So will just leave this here in case anyone ever comes across this thread on google, but would love to hear from others and help raise the profile of these awesome life re-inventing things rather than being seen in a bad way which I think a lot still do.
Didn't think you were taking the puss, talking shut maybe 
I have mine due to having crohns disease. Diagnosed at 9 years old and after a few ops and avoiding it I ended up with my ileostomy at 17 years old (27 now so had a full decade with it) and whilst it hasn't always been easy, I wouldn't ever dream of going back. In fact I've just made the decision to have the rectal stump removed so a reversal will be impossible as that's the only part that's playing up these days with a high risk of cancer too.
I have mine due to having crohns disease. Diagnosed at 9 years old and after a few ops and avoiding it I ended up with my ileostomy at 17 years old (27 now so had a full decade with it) and whilst it hasn't always been easy, I wouldn't ever dream of going back. In fact I've just made the decision to have the rectal stump removed so a reversal will be impossible as that's the only part that's playing up these days with a high risk of cancer too.
Yeh, it really doesn't need to stop you doing anything, but for a lot of people young and old, when they get they often panic about what they can and can't do.
I think solo traveling around Vietnam, trekking, cliff diving,snorkeling etc has helped shown some people I know with them that they should go for it. Racing the TVR then keeps me busy at home.
Awareness is the other big thing for me now, I'm not wanting to throw my bag in people's faces, but get it to the point where it's just another medical marvel to fix a problem, not really much different to having to wear glasses.
I think solo traveling around Vietnam, trekking, cliff diving,snorkeling etc has helped shown some people I know with them that they should go for it. Racing the TVR then keeps me busy at home.
Awareness is the other big thing for me now, I'm not wanting to throw my bag in people's faces, but get it to the point where it's just another medical marvel to fix a problem, not really much different to having to wear glasses.
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.
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
You will find things may change in the coming weeks as everything inside and out heals it creates the base for what bags etc you will need.
For me, I was mega skinny at the time and then as I put on weight I now need a convex bag, hopefully you get a good stoma nurse to help guide you to the best one, but many will limit their options to what they get 'offered' from the local supplier.
For me I personally love the coloplast sensursa bags, best emptying folding, nice pad that sticks well and I have 2 tabs on the edge of the bag that I use a slim Stretchy belt with (works better with convex)
Changing, all I do is take bag off (no adhesive remover but wouldn't recommend that post up untill it's healed!) wipe over with a skinsafe wipe, add a little paste to a dip I have in the skin and bosh the new one on. Takes 2 mins.
Mines a short illiostomy
For me, I was mega skinny at the time and then as I put on weight I now need a convex bag, hopefully you get a good stoma nurse to help guide you to the best one, but many will limit their options to what they get 'offered' from the local supplier.
For me I personally love the coloplast sensursa bags, best emptying folding, nice pad that sticks well and I have 2 tabs on the edge of the bag that I use a slim Stretchy belt with (works better with convex)
Changing, all I do is take bag off (no adhesive remover but wouldn't recommend that post up untill it's healed!) wipe over with a skinsafe wipe, add a little paste to a dip I have in the skin and bosh the new one on. Takes 2 mins.
Mines a short illiostomy
Gassing Station | Health Matters | Top of Page | What's New | My Stuff