Knocked confidence

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Miss UK
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Date Joined Oct 2007
Total Posts : 128
   Posted 11/29/2008 1:50 PM (GMT -7)   
So even though it's only been 3 weeks (since major surgery and loop ileostomy) I thought I was doing quite well.  I've discovered with a body suit I can wear low cut jeans and you wouldn't even notice the pouch there.  So there I was ready to be taken to my mums for my first outing feeling good and confident even singing much to my 2 year old sons distress then it all changed.  My pouch had leaked and wow when they leak they leak don't they, they give you no warning.
 
This happened a couple of mornings ago too but I know that was my fault as I'd been rubbing my scar with bio oil so I'm guessing the oil travelled to the nearby pouch. 
 
The thing is, how do you ever dare go out? It was hard enough cleaning up in my own bathroom I can't begin to imagine how awful it would be if it happened in public.  Now I'm checking the seal on my pouch all the time I'm getting obsessed.
 
I'm guessing there's no tips really on how to cope but just in case you've all found your ways I would be very grateful to hear

Blossom28
Regular Member


Date Joined Oct 2008
Total Posts : 47
   Posted 11/29/2008 5:20 PM (GMT -7)   
Actually, there are lots of tips about how to prevent leakages . . . they are pretty common.  Every person is different and the ways to prevent a leak will come to you with experience (I hate to say). .  .I always used an Eakin Shield and also, I was very careful if I was wearing jeans, because when you sit down, the jeans may get too tight in spots and cause the leak . . . best of luck and I know that you'll master this . . .

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 11/29/2008 9:16 PM (GMT -7)   
yeah there are lots of ways to protect against leaks
and yeah i worry about it too, i think Oh god how would i ever change that thing in a public bathroom with a 3 year old in tow???
But i spent 8 years not going out cause of having UC and always worrying if i would make it to the bathroom, so i just hope.
And i do things to help keep from getting leaks too.
One thing about it is, if you leak noone is going to see something on the front of your pants and think it's poop. And the one good thing abotu having a kid with you, is you can blame the smell on the kid, lol. poorkid!

peggy113
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Date Joined Aug 2007
Total Posts : 1998
   Posted 11/30/2008 3:23 AM (GMT -7)   
Confidence is certainly something built up in time. I know that isn't what you want to hear, but it is true. Even a veteran gets shaken when a leak occurs out of no where. But, once you get your system down and learn from your mistakes and by others' mistakes, leaks become infrequent.

I, too, am a believer in Eakin Seals. And I don't use the whole seal - just a small strip around the stoma hole opening, as you would use stoma paste or the like. Do you use any of these products?

Yeh, any kind of oil near the flange is probably not a good idea as it can travel during a hot/warm shower. And, it's not something that you can really See or Feel to know that. Best bet, minimal oils on the abdomen as you know now.

As the days/weeks go by, you will gain confidence again and won't give going out a second thought. I know it is easier said than done!

Best of luck to you,
Regards,
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Miss UK
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Date Joined Oct 2007
Total Posts : 128
   Posted 11/30/2008 5:30 AM (GMT -7)   

Thanks for your replies.  Summerstorm that made me laugh blaming it on my 2 year old haha I'm never sure if it's him or me when I smell anything dodgy.  I will watch where my jeans crease.  I'm seeing the stoma nurse on Wednesday so I shall ask about eakin seals and stuff.

Thanks again I appreciate your replies


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 11/30/2008 10:36 AM (GMT -7)   
i am always wonedered if its me or my kid too! he will usually tell me he is letting stinky toots, but you never know!

Also,be very careful with what type of soap you are using! And if you are still using barrier wipes they can shorten wear time.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/30/2008 12:49 PM (GMT -7)   
Good point, Summer. I tried a barrier wipe once, and my wafer would not stick. I read the box and noticed that the wafer I use - the Coloplast Assura Extended Wear - has a built-in skin barrier. I get 7 days wear time and have never had a leak, so I recommend it to everyone! Dove soap for sensitive skin is good, too. :-)
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 11/30/2008 2:14 PM (GMT -7)   
Ooh thanks I'm not using barrier wipes though I have been using a powder the nurse give me as my skin was sore there I wonder if that might not have helped.  I don't get it because I've read a lot about people getting many days wear time yet my nurse looked at me as if I was mad when I said should I wear it for 3 days before changing.  She said change it everyday I wish I could wear it for 7 because I really hate doing that change.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/30/2008 3:25 PM (GMT -7)   
i dont know why you should change it everyday, i change mine everyday 3 or 4 days. I could go longer, i just don't like to.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 11/30/2008 5:17 PM (GMT -7)   
I usually push mine as long as safely possible - usually 6 or 7 days.

I'm with Summer - I wouldn't know why she said to change it everyday. That would make the skin more sensitive and raw I would think, until it gets accustomed to it. But everyday is excessive, and imo unnecessary.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 11/30/2008 9:44 PM (GMT -7)   
Anytime I've used powder, I can only put it close to the stoma, because the wafer won't stick well where there is powder. Maybe that's what happened to cause your leak.
 
I agree with Summer and Peggy that changing the wafer every day is excessive. I usually know it's time to change my wafer when I start to get the itchies. They go away as soon as I put on a new wafer. I also recommend using adhesive remover wipes to remove the wafer. It makes it slide right off.
 
:-) Cecilia


Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/30/2008 10:14 PM (GMT -7)   
i take mine off right after a shower and it pulls off very easily

Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 12/1/2008 6:28 AM (GMT -7)   
Perhaps it's because I'm new and haven't got the hang of making the perfect hole in the flange but I'm itchy all the time then it feels like the stoma is really hurting but that could be all the surgery I had underneath as it was quite extensive I had to have my bladder and vagina repaired and a resection along with the stoma. 
 
 I think once I've got the sore skin under control if the nurse still reckons every day I might ignore that and try and go for 3 and work up to more as it seems no one else has to change that often and I absolutely hate changing it.
 
I'm pleased to hear it could have been the talc stuff I'm using that may have caused the leak it's always good to have a reason as you can sort that out.
 
Your all fantastic thanks very much!
 
 

awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 629
   Posted 12/1/2008 4:06 PM (GMT -7)   
just to echo what was already said-the confidence to go out and DO stuff will come with time. take a few short outings to build it. i was at an amusement park a couple months ago and went on all the rides and everything-no probs...just had to be careful they didn't make the harnesses too tight. when i'm out and about liek that i just carry a precut flange and pouch in a ziploc, "just in case" and shove it into a pocket. i don't carry all the supplies with me, they stay in my car. but everyone has their own system, you will too

--matt
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 12/1/2008 4:26 PM (GMT -7)   
Thanks awesomeame.  Can you believe it's leaked again! this time no powder, no moisteriser of any kind, nothing.  It leaked from the top oh I'm just not getting the hang of this where am I going wrong!  I spend ages changing it making sure everything is just right.  Thank goodness the nurse is coming Wednesday morning maybe she will give me some seals or something to try.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 12/1/2008 9:43 PM (GMT -7)   
ok, tell us exactly what you do, step by step maybe we will be able to see where you are going wrong!

Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 12/2/2008 6:18 AM (GMT -7)   
Thanks Summerstorm what I usually do is have a bath with the old pouch on then dry myself thoroughly then get everything ready around me and then take off the old pouch using the adhesive remover spray. 
 
Then with just warm water I wash all round the area a few times.  Then when dry I dab the powder onto where the skin is red.  Then I try and scrub it off then sit there for a while with tissue powder waiting to catch any drips.  When I'm sure all is dry using a tip I read from somewhere I put the new pouch under my arm pit to warm it up (already holed) then I open the bag and put it on as close as I can from underneath then slip it over the stoma and smooth round that area all the way to the outer area with my fingers then I spend a few minutes just going over it with my fingers.
 
At that point it seems stuck solid and every time I check it it seems stuck but then all of a sudden 'Oh no! not again'.

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 12/2/2008 11:33 AM (GMT -7)   
ok i dont see anything that you might be doing wrong so much, but maybe try doing it like this, this is how i do it. It may be hard to explain.
Ok, i take a shower with it on. then i get out and it peels right off, i dont use the remover stuff (you know it may be that that stuff isn't coming off all the way) I use a cloth and dry off all around it. I have a box wtih all my stuff ready to go, so all i have to do is just take it out. I have my flange wtih the paste already on it and i lay it and the bag on the floor. I hold a little piece of towel over it to keep the stuff from coming out. After it's all dry, i lay down on the floor, get the flange, then i quickly remove the old towel put on the wafer then put on a clean towel to catch stuff. I take off the rest of the bandaid stuff, then use my hands to smooth around and hold them there for a second. then i snap the bag on, and stand up. Once i stand up i make sure the bag is on the wafer good, I think i get a better seal with the wafter laying down and get the bag clipped better standing up. Then i take the hair dryer and turn it on and heat up the area for a while, then smooth it down again. And then i am done. I know that sounds liek a lot, takes me about 8 minutes or less.
I hope that made sense.

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 12/2/2008 11:44 AM (GMT -7)   
Here's a thought--is your stomach uneven? Mine "dents in" in one area and when active retracts pretty deep...which can cause some leakage issues!! I had to try many different brands to find the right wafer that works with my stomach. Some of the wafers are too ridgid and pull right away...have you tried getting samples from some of the manufacturers out there? I also swear by the Eakin Seal:)

btw--the brand my stoma nurse had me try was one of the brands that two too ridgid:(

Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 12/2/2008 12:30 PM (GMT -7)   
Thanks Summerstorm and Ohio76.  I'm guessing thats what you do with a two piece, mines just a one piece but I shall definately try laying down to put it on next time as I'm usually sitting up.
 
My stomach isn't really uneven it has a very gentle hill haha but I'm fairly thin at the minute.  Perhaps I should look into getting some samples I've seen websites on here for them but they seem to be in the USA I'm not sure if they are the same named brands in the UK.  At least I got through last night without leaking (in bed) so here's hoping for another!

roxZ
Regular Member


Date Joined Sep 2007
Total Posts : 21
   Posted 12/2/2008 1:46 PM (GMT -7)   
Hi Miss UK, I like you are new to the whole bag thing and had been very frustrated because it kept leaking. My surgery was 2 weeks ago yesterday. I visited my stoma nurse and she fit me with a light convex bag that has made a huge difference so far, no leaks since last Wednesday. I also have to use the stomahesive powder just around the stoma where my skin is raw then on top of the powder I apply no sting cavilon adhesive, just where the powder is. I also use an eakin seal which I apply to the bag and smooth the edges. I wear a belt too, which I think helps a lot. It makes a big difference if you have children to run around after and are active. Good luck! I was in your situation just last week and am still keeping my fingers crossed that a leak never happens in public.
Vikki, 30
dx with ulcerative colitis at 16
Due to years of prednisone dependence had j-pouch surgery 11/17/08, temporary ileostomy.
prednisone 15 mg tapering 5mg/wk


Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 12/2/2008 3:25 PM (GMT -7)   
Thanks roxZ and good luck to you too may you never have any more leaks!  I think I need to see if I can get the stoma nurse to cough up some more goods for me to try.  The funny thing is I had never had a leak till I saw her haha she is nice though.  I will ask about the convex bag too.

Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 12/3/2008 6:01 AM (GMT -7)   
Well the stoma nurse came and went.  She didn't seem at all bothered by my leaking problems she said oh people leak and use tape I tried to make it clear that when I leak I leak.  I said I wasn't sleeping at night now for fear of it happening she said try immodium.  I did get some smaller type pouches off her though and some kind of seal but not eakin seal she said she hadn't any of those.  Well lets hope this seal works to be honest the best ideas and advice I have got is off here from all you so many thanks :-)

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 12/3/2008 7:51 AM (GMT -7)   
I don't lay down to apply my pouch/wafer, but I do try to stand up very straight and gently pull the area/skin around the stoma flat before adhering it all the way. Probably the same idea as Summer's w/o laying down to do it. That way, you can move and stretch w/o the skin being pulled by the wafer sticking to it. And possibly causing it to leak. I'm sure that doesn't make much sense now that I re-read it, but if you don't understand, I will try to explain better.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Miss UK
Regular Member


Date Joined Oct 2007
Total Posts : 128
   Posted 12/3/2008 3:48 PM (GMT -7)   
Thanks Peggy, that does make sense.  That does seem to be the best way to try and do it (with stretched skin) I am definately giving that a go next time.  I'm a bit nervous about getting through the night with a smaller bag now haha you can't win but at least I no longer sound like I'm walking around with a bag of crisps under my top! 
 
If I go wrong now after all your advice I will cry for sure but I'm quite confident that I will get there just got to keep the spirits up and like Summerstorm said if things do go wrong no ones going to really know whats happened I will just have to walk with a smile on my face as fast as I can to safety :-)
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