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.
t myself!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.
Rib said:
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 don't think people are even aware of it let alone have an opinion.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'm in, 9 months since my Urostomy due to Bladder Cancer. Still getting used to it, but not seen that the bag has stopped me doing anything that I did before, in fact years ago I was a parachute instructor and trained a group of people who had Stomas and the the only precaution we had to take was to ensure that the bag was emptied prior to the jump and when the harness was fitted that the bag didn't get trapped under the Leg-strap where it came off the main body harness,
Rib said:
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.
Interested to follow up to see if you had the rectal stump removed and the outcome.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.
In a similar situation at mo ...huh!
I've just had a Stoma fitted, apart from stomach muscles going through the healing process it seems fine. Hopefully it'll be reversed within 6 months with no problems. All due to Diverticulitis and a narrowing of the Sigmoid Colon. Inconvenient,yes. But a country mile better than the pain and discomfort I suffered for nearly a year. I'm thinking of posting a video on YouTube once I'm fit again to help other facing the procedure. A fifty two year old bloke on a skateboard should reassure some that life doesn't end just because of a bag.
My wife "celebrated" her 40th anniversary of having her stoma last week. Having the operation as a 25 year old suffering from ulcerative colitis and down to a weight of four and a half stone there wasn't really any other option. Would she preferred to have never had ulcerative colitis, obviously yes; but she's always been very positive and continues to make the most of the hand she was dealt and enjoys life.
weeboot said:
Daughter is running a supra pubic catheter (surgery earlier this week to replace it after a failed swap), will be moving to mitrofanoff within the next year.
Does the wee miss weeboot have spina bifida or similar? Seems quite unusual for kids to have SPCs but not really sure why. I don't have one but may well end up pleading for them in the future, as I have to live with grim bladder and bowel management regimes following cauda equina nerve damage. The former can only be voided by exerting abdominal pressure which my consultant warns me can damage the kidneys long term, so tomorrow following urodynamics and kidney scanning I'm expecting to be prescribed a lifetime of intermittent self-catheterisation. You take these complex autonomous nerve systems for granted when they work!
FlyingMeeces said:
weeboot said:
Daughter is running a supra pubic catheter (surgery earlier this week to replace it after a failed swap), will be moving to mitrofanoff within the next year.
Does the wee miss weeboot have spina bifida or similar? Seems quite unusual for kids to have SPCs but not really sure why. 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.
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. 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. 
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