Do you have a stoma?

[devildee(donna2005)LOL]

Hi All

hope you dont mind me asking im just curious how many people have stomas
(((((((((hugs))))))))))))
i have a permenant ileostomy

 

[mikeyarmo]

I do not have one now. I guess there is always the possibility of one though for everyone, but I have never been given any indication of requiring one.

 

[Kate]

i dont have one

 

[Valentina]

no for me... we did discuss surgery a lot when none of the meds were working, but my pathology was never clear, so was never sure of what surgery I would have.. but thankfully the remicade, mtx etc.. have kicked in, and I can avoid it for now.. and hopefuly it never comes up again.

 

[k-t]

No i don't have one, i had a resection last year however no stoma....

 

[jlbastian]

Just one resection (terminal ileum, ileocecal valve, 2 cm of lg. intestine- under 2 inches total) no stoma.

For those of you that do, I am curious how life changed? For the worse, or for the better?

 

[ElaineH]

Yeah I have a temp ileostomy, tho not so temporary cos have had it for 8 years now lol! Will be made permanent someday.

 

[Jonny]

I have a Stoma not sure if permanent yet.If i get rid of my fistula its possible for a reversal.Has it made my life better?Sure did after the operation i was in remission for a year but i soon got a peri anal fistula so that is a pain but i will never be as bad as i was before now ive a Stoma.

 

[Spongie Sonya]

I don't have one - I had a resection in March and was warned it may be a possibility, but everything healed nicely and I didn't need one.

 

[DannyB]

I don't have a stoma however I have a great deal of respect and admiration for people who do either through choice or because it was necessary. My docs have asked me for many years to consider this but I don't feel that I am a strong enough person to deal with it.

Muchos Respecto

 

[Ryan]

have a j-Pouch here

 

[Mozam]

I have a permanent ileostomy, and have had for 13 years now, since I was sixteen. It was a horror thing to go through back then, as I thought my life was over - I would never be able to socialise, meet girls, play football, do crazy things - all the things you worry about as a young man. I can safely put my hand on my heart though and say that it has never stopped me doing ANYTHING - I am in NO pain, don't have twenty visits to the shitseat every day, nobody knows I have it unless I tell them, I've been on stag weekends, scored winning goals on five a side football teams, have had three long term relationships, (a few!) one night stands, am father to a gorgeous wee oy called Ronan, can hold down a stressful job - you name it.

I'm not saying that all this has been possible purely cos I have a stoma, cos it's not - it's certainly helped, but it's my attitude that's allowed me to do these things. What I'm saying is, if you see an obstacle, work out a way to get round it - if someone throws you a lemon, make lemonade.

I've been asked by my doc to have have chats with half a dozen people in the past who were all a couple of days away from getting a stoma, to see if I could put their mind at rest. They ALL came back to me withing two-three months and said " you're right dez - nothing to worry about, and I can see a life ahead of me now".

Sorry for rambling folks, I've got a job interview tomorrow and if it was physically possible, I'd be bricking it, so no sleep for me tonight. xxx

 

[Kossy]

Yep, I have a stoma. I name it Jeb. He wants to get his own email address. He was thinking [email protected]

 

[BTRoadie]

Terrified

I am having a resection done, the doctor has told me the whole colon is coming out and that a stoma is a possibility either temp or perm, at my upper and lower scope in may they did something ridiculous like 18 biopsies, a few were pre cancer they say, I do however trust the surgeon greatly he took his time with me and spent about an hour and a half explaining things to me, I am incredibly vain and selfish and don't really want to do this but my appointment is in two weeks, I have great friends and family but can't seem to talk about it in too much detail with them, appointment was yesterday with the cool surgeon and even after taking a few lunesta's last night I am still awake, thanks for reading everybody, and your stories have given me a glimmer of hope,

Freaking out
but gonna get great care at the Lahey clinic in Mass, yes I flew 3000 miles for my third opinion

Paul

 

[Sojourn]

I couldn't vote on this because I'm not really sure what it is I have. After my first surgery to drain an abdominal abscess and fistula last month they installed a J pouch. But most of the drainage was coming out through the incision instead of the tube so they did another drainage surgery and removed the J pouch.

After this surgery they tried to stick an ostomy bag on me. This is not for the intestine but for the fistula. Stomach content is actually coming through the fistula and out of the incision left from the surgery. There is a little rubber drain but it doesn't drain through there. It just runs down my stomach. So the ostomy patch didn't work. The way it's draining, it erodes the adhesiveness of what's holding the ostomy to my skin.

So what I've been doing for the past couple of weeks is using these big bandages for heavily draining wounds and taping it over that side of my stomach. I have to change it about a 3 times a day because of all the drainage. It's a mess but I'd rather do that than have the bag falling off and leaking. When I saw the surgeon last week he seemed determined to come up with an ostomy setup that would work. He said he was going to send some Home Healthcare nurses to my house but haven't seen them yet. I don't know how they can get one to stick to my stomach when the drainage is running down the skin. It will get into any kind of adhesive they try to stick on there. I've done my own research on the internet and have found one that might work. But I'm stable enough to go on steroids now and will start them tomorrow which will hopefully seal off the fistula.