Venting: Bag changing

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Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 3/31/2008 9:32 AM (GMT -6)   
AHHH! Ok, so I kept my last bag on too long and it leaked (2nd time this has happend) and had to change it emergency style with my dad assisting. I completely forgot the no sting barrier film but did apply the powder...big help that was. I also cut the flange/wafer to wide so that by the end of the night the blood ring around my stoma was complete. Ugh. So I ended up changing it again that night with my fiance's help (much better at this stuff than anyone else) and this time the stupid stoma was putting out so much green goup (I tried not to eat a few hours before hand so it wouldn't be active, which backfired horribly) that I was almost crying in frustration. Basically I would get the powder on and get halfway through the barrier application and it would output AGAIN. We eventually got the bag on and the barrier set up...in just enough time for me to realize I forgot to put the adhesive on the wafer! >:( That was Friday, now its Monday and even with the belt around the bag I'm starting to get the itchies again. So I guess its time to go through this wonderful process all over again. I really can't wait for my reversal surgery...anyhoo, my vent is done. For now.
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February:Complete!)

Meds:
Prednisone (5mg taper)
Coumadin (6mg)


Stoma Girl
Regular Member


Date Joined Oct 2007
Total Posts : 55
   Posted 3/31/2008 3:00 PM (GMT -6)   
I had a similar thing yesterday, mine decided to output a load of lovely yellow gunge all over the clean bag i had half applied so i had to grab another, which turned out to have a hole in..

Changing is always the luck of the draw, whether it's immediate itchies or it going all over the bathroom/clean bag/bath-mat at precisely the wrong moment. I've taken to rewarding myself it everything goes to plan with chocolate :P it's excellent therapy. And if I have a bad bag change I console myself with chocolate as well. It's little wonder I am an XL in all my clothing :P

Chin up ducky, it won't suck forever. :)
Never Give Up, Never Surrender!
 
.. Stoma Girl ..
.. Ileostomy following Crohn's Disease, 2007 ..
.. Meds? Tried 'em all! ..
.. Time between diagnosis and operation - one year ..
.. Trying to find anything happy in life ..


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 3/31/2008 3:24 PM (GMT -6)   
To help with the itchies --- not solve the problem, but to tame the itchies until you can change, just rinse your bag and around your stoma with cool water --- it really does help.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


HisWill
Regular Member


Date Joined Mar 2008
Total Posts : 43
   Posted 3/31/2008 4:54 PM (GMT -6)   
Hi, After reading some of the stories of bags leaking, bursting, etc. I am getting nervous about my upcoming ileostomy on April 3. LOL. What bothers me is that mine is not going to be reversible. So I am one of the lucky ones that will have to deal with this for the rest of my life. I seriosly and trying to be positive and will try my best to keep a sense of humor. But, I promise you all that I will be back for support the first time my "bag" bursts! lol. HisWill

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 3/31/2008 6:13 PM (GMT -6)   
be positive hiswill, it does get better

carlow i totally know that feeling! i used to get so pissed b/c my stoma was constantly putting out...even when i didnt eat. i started just wrapping my stoma in papertowel (folded) and trying to cut b4 taking the initial bag off, that way u can kinda gauge if its gonna fit ur stoma...if u cut to big by mistake, u should invest in the eakin seals...they work wonders, i used those when i was cutting


but i have to ask have u tried convatecs moldable flanges? no cutting! cuts so much of the hassle out of changing the bag, cutting was my biggest obstacle...
and i have had no leaks with this flange, it turtle necks up around ur stoma...i really feel like the spokeswoman for these things...if u can u should definitely order a sample and give em a try

most people get longer wear times with them as well
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 625
   Posted 4/2/2008 7:05 PM (GMT -6)   

i used to be pissed with the output while i was changing the flange/bag too.  what i do now: get one of those huggies wet naps and put it on your bathroom counter.  change your appliance, keeping the stoma above the wetnap.  if you have output it just goes on the wetnap, and you throw it in the toilet when you're done.  easy-peasy.  if your stoma is active it's gonna be active, might as well contain the mess :)

--matt


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


Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 4/2/2008 9:34 PM (GMT -6)   
Hey all,

Well thanks for all your advice and support! I really like the sound of these moldable wafers...gonna have to check into that. I do have some good news. I changed my bag last night with no problems! It was amazing, worked like a charm. I did have my wafer cut before hand, and this time I just cut it in a circle instead of trying to "custom" fit it exactly to my stoma. I got the powder down after cleaning up (my blood ring has been confined now to just a small section in my lower left area of the stoma) and then the barrier. I remembered the glue adhesive and put on a brand new "opaque" bag. Up until now I had been using the transparent bags from the hospital. So much better, what a difference from last Friday!

In other news, it looks like my lovely portal vein clot and pelvic abscess adventure from 4 weeks ago will set me back another 3-4 weeks for my reversal. Unfortunately this means its going to be too close to my upcoming wedding... :(. So today, I finally accepted the very real possibility that I'll changing bags for another 3 months. Oh boy. Oh and wearing a bag to my wedding and honeymoon...hmm. Could be worse I tell myself. I could still be flaring from UC, or I could get the surgery done and not have control in time for the wedding (also a real possibility). So it looks like a second honeymoon will be in order once this is finally done and over with. <whoo, big sigh/breath)
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February:Complete!)

Meds:
Prednisone (5mg taper)
Coumadin (6mg)


Ash83
Regular Member


Date Joined Nov 2007
Total Posts : 128
   Posted 4/2/2008 9:48 PM (GMT -6)   
Hey Carlow,
 
Glad to hear things are working out better for you. Originally I was set on having a reversal around this time(5 months before my wedding), but after my brain started working I realized that probably wasn't the best idea. I'd rather have a bag than have to worry about running to the bathroom every 10 minutes in a gown that is twice the size of me. I admit that I still get upset when I think about it all. I always pictured me on my honeymoon laying out on the beach on some incredible island in my cute little bikini. I can still do that, but just not as freely and with a few tweaks along the way.
 
But like you said, better this way than the alternative...which isn't a good one. It's really easy to let the surface stuff in life get us down. But when that happens we really just need to take a step back and realize how many great things life has in store for us that weren't there before. I actually think it's pretty cool that I won't have to worry about the bathroom much on my day. I like to think of it as an advantage!
 
 
 

gilgirl
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/3/2008 5:49 PM (GMT -6)   
Dont worry hiswill this site sounds as if it gives lots of advice and support, CarlowI get my bags precut so dont have the hassle myself, it doesnt seem to matter what I eat the output changes as if Freddie the stoma has a mind of his own, usually when you are in a rush.

Liz
Permanent ostomy formed in 2003 after years of pain and divertcular disease.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/3/2008 8:52 PM (GMT -6)   
i always cut my bags before hand in fact i keep two boxes in the batrhoom with what i need for a change already in there.
However i am not the best person to give advice on supplies, given my history with the paste, lol.
But, i can tell you this it has been almost a year since my surgery and i still get upset every once in a while, but every single day i have found something, even a little something sometimes that i realize i could have never done before, and it just makes me even more sure that i did the right thing!

gilgirl
New Member


Date Joined Apr 2008
Total Posts : 4
   Posted 4/4/2008 2:45 PM (GMT -6)   
tongue   Two years since my final surgery and I still get bad days, but they are getting fewer.  Like today I had to change the bag twice because of pancaking. But off to London next week so fingers crossed.
Permanent ostomy formed in 2003 after years of pain and divertcular disease.


Indabag
Regular Member


Date Joined Aug 2007
Total Posts : 254
   Posted 4/4/2008 4:50 PM (GMT -6)   
You know, changing the bag for yourself seems so matter of fact to me now but I was so sick when I first got my ileo that my wife really handled it for me for months. It was so liberating to do it myself. Maybe it's like a toddler getting toilet trained. Now, I hardly think that much about it. Yes, I have my share of leaks & blowouts but so what! Life goes on. So Hiswell, it's not nearly as bad as it may sound.

Richard
Indabag
 
Ileostomy since August 2005.
As result of surgery (modified whipple) for necrotising pancreatitis. Removal of gallbladder, 2/3 of pancreas, resections of large and small intestines. Massive infection. 


Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 4/4/2008 7:24 PM (GMT -6)   
I'm glad to hear I'm not the only one who has had their fair share of problems. Peggy113 thanks for the water tip, its worked wonders! I looked into those moldables today and I like the sound of it. It seems like it might take a bag change or two to get used to (setting up), but they look much more effective than the cut ones. Anyhoo, I wanted to ask anyone who wears these moldables what type of two piece bag they wear with it? I'm a guy who's about 5'7" and weighs about a buck twenty eight so I've definitely become a stick since my hospital stay.
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February:Complete!)

Meds:
Prednisone (5mg taper)
Coumadin (6mg)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 4/5/2008 9:30 AM (GMT -6)   

Carlow,

Glad to hear that the water tip worked for you.... most of the time it works for me too.  At least it is temporary relief until bag changing time.

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 4/6/2008 1:00 PM (GMT -6)   
Ok, so my third bag change since coming home went well last night! However I noticed I'm still bleeding around parts of the stoma. This is weird because for the past week I haven't really felt any stinging sensations which usually cause the irritation that leads to these blood rings, or arcs. I think I'm going to schedule an appt with the WOCN dept of my hospital just so one of the nurses can take a look and make sure everything is ok down there, even though I'm not in any pain <knock on wood>. Oh, I'm also going to try to order some of those moldable wafers on monday too. I hope they fit the bags I just bought, they should I think, considering they are both from convatec!
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February:Complete!)

Meds:
Prednisone (5mg taper)
Coumadin (6mg)


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 4/6/2008 3:54 PM (GMT -6)   
carlow, is the bleeding on ur skin? or the stoma? u know the stoma is very vascular so u can practically look at it and cause it to bleed.

As far as the moldables, I'm 5'2 120lbs. female. I the wafers are pretty much interchangeable w/any of the snap on convatec bags. i.e. the surefit invisicloses, which i use now (no clips), or the clear transparent ones, u might have gotten these right out of the hospital, or the opaque 10 inch w/the clips. As long as they snap on im pretty sure theyr ok. And believ it or not, it doesnt take much getting used to at all. For me, after a shower (w/out the bag) and making sure my skin is dry, its like 5 mins getting it on...a little longer if i use the blow dryer tomake it stick better. Just set everything up ahead of time.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 4/6/2008 5:26 PM (GMT -6)   
Carlow, if the bleeding is from the stoma, it could be because of the length of time you were on the prednisone. I was on that nasty stuff for exactly a year. Even 6 weeks post-op my stoma would bleed just from the water in the shower hitting it. Now, since I've been off prednisone for a month, it doesn't bleed as easily. My nurse at the Cleveland Clinic even said at the post up appointment that my stoma bled more easily than normal, so I attribute it to the prednisone. You'll probably do better a few weeks from now if that is what is causing it to bleed easily.

Sidenote:
Prednisone is very bad stuff long term (if on it more than 3 months). It gave me osteoporosis at age 31, so anyone who's been on it more than 3 months should get a bone density test. My GI doctor in Akron was a retard (couldn't connect the dots) and my family doctor was the one who tested for it and caught it. The test is two x-rays and doesn't hurt at all. They can give you Actonel to prevent further bone loss while your on it...so it is totally preventable and treatable. Prednisone also turns your other organ walls into the consistency of butter from the loss of your overall healing ability and suppressed immune system. Too bad the doctors will not tell you this at the hospital or on the prednisone (or any other steroid) drug labels. This is why I needed the 3 stage J-Pouch surgery...not because of the "poor health" everyone thinks or is told. It was because my internal organs would not hold the staples or stitches due to the effects of prednisone. Also steroids (for allergies, asthma, etc.) or any other drug that suppresses the immune system like Imuran and Remicade will do the same thing. Maybe this is why they keep that fact quiet. I dislike the drug companies and certain doctors if you haven't noticed. They feel it is fine to kill you slowly (while making a profit) with their drugs than letting you die from your original condition (even when cures exist). The good thing is that, once your off prednisone or other steroids, your organs will return to normal.

Anyway, I found a great solution that works for me and my stoma during wafer changes (2 piece system). Get the precut wafers when your stoma stops shrinking. Mine is in between two sizes so I order the larger size. I use paste to fill in the gap and stoma powder to fill in the areas that the paste didn't cover when I put on the wafer. It works every time and no bleeding stoma, leaks or skin irritation around the stoma.

Hope this helps.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays

10/2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all

10/12/2007 Diagnosed with Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily Iron Pills to the list

2/12/2008 open Subtotal Colectomy with Temporary Ileostomy Surgery
Off all meds except Actonel and feel normal again

8/2008 J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/6/2008 7:52 PM (GMT -6)   
the stoma itself bleeds very easily and it's not uncommon for it to bleed during a change, or if you bump up against something hard. I think it was Peggy that hit hers with her fingernail and it just bled and bled and bled.
GisGuy is right about the pred, that is some evil evil stuff. It's one of those that makes you wonder if the cure is worse than the cause.

Carlow
Regular Member


Date Joined Sep 2007
Total Posts : 113
   Posted 4/7/2008 9:31 AM (GMT -6)   
Its actually the skin around the stoma thats bleeding. Its a very thin strip and it just follows the track of the stoma right on the edge of it. I've tried reducing the size of my cuts, to the point where its touching the stoma on all sides (as best as a circular cut can fit on a slightly irregular shaped stoma). I do the barrier before I put it on and I put the adhesive around the cut before I finally slap it over the stoma. So I don't know what I'm doing wrong...it could be that it is the prednisone and its just taking a while to heal. I have the stupid itchies again as of yesterday, so much for a successful bag change, therefore it must be leaking onto the skin again. Hrmph. I just ordered those moldables today, and maybe I'll look into those eakin seals too. I hate the itchies. That is all.
Diagnosed Fall of 2004
(Scheduled for Stage 1 of IPAA in late February:Complete!)

Meds:
Prednisone (5mg taper)
Coumadin (6mg)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 4/7/2008 3:43 PM (GMT -6)   

Carlow,

Definitely try the Eakins if the moldables don't work for you.  That is exactly what my situtation was when I switched over to them less than a year ago.  They worked for me.  It just seemed to happen to me pretty much over night.  I didn't really notice my wear time gradually decreasing either.  Almost as if it was something that I was eating or drinking that caused the breakdown of the wafer.  It wasn't that at all.


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 4/7/2008 6:42 PM (GMT -6)   
i listened to peggy for the eakins when i was cutting, they did work wonders, and healed my skin very well
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you


jimmy36
New Member


Date Joined Apr 2008
Total Posts : 1
   Posted 4/19/2008 12:09 AM (GMT -6)   
Hi all......new member here.
 
I'm 36 years old and had ileo surgery about 3 years ago. As far as the changing process goes everything goes quick and easy for me if I have it all ready to rock and roll before I even start. I just lay everything out before hand and within 20seconds I have the wafer/bag off, clean stoma area, alcohol around stoma, add powder, and apply wafer. Once in a great while I have a little leakage while changing but for the most part I don't even start unless things are calm.
 
As for some people mentioning leakages.......where exactly is it coming from? The bag or the seal around the wafer?
 
I guess I've been fortunate because I only had one accident so far and it was my fault. I didn't velcrow the bad tightly enough and some "stuff" came out. My only saving grace was I was @ the medic shop where I purchase my ostomy supplies.........so actually I was very lucky.
 
-Jim
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