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walkinghorsefan
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/2/2010 3:07 PM (GMT -7)   
I am having problems with the ostomy bag.  It sometimes smells. (I keep it very clean) Leakage at times. I just don't have enough experience to know what is best.  Do they make something that is doesn't cause embarrassment?  Every time I look down, it looks swollen like it needs to be emptied.  It really doesn't.  I live with a teenager, so my confidence with the ostomy bag is zero.
 
Sherry
 

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/2/2010 4:35 PM (GMT -7)   
The swelling is probably gas, just let the gas out.
Ify ou are having smells you dont have a good seal.
Please tell us what system you use and what you do, so we can try to help
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/2/2010 4:39 PM (GMT -7)   
Sherry~welcome to the forum :-)

There is a ton of knowledge here and we'd love to help...like summerstorm said, let us know what you are using, and if your ostomy is a colostomy or ileostomy.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


walkinghorsefan
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/2/2010 10:01 PM (GMT -7)   
It is a colostomy and the gas happens all the time.  I am using a clip on-ConaTec Bag.  I tried the two piece bag and wasn't really better then the one I have.  I did change the adhesive, to Hollister.  I take my bag off to shower whenever it is time for a chnage.  I had the surgery in April of 2009, it was rectal cancer back for the second time.  Although, I hated the diarrhea, I would really like to get comfortable with the bag system.
 

walkinghorsefan
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/3/2010 6:21 AM (GMT -7)   
My Ostomy nurse indicated that the vents didn't work.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/3/2010 6:35 AM (GMT -7)   
Sherry~for the most part filters do not work long term...but they do work!

I only use ostomy pouches with filters and can get 1-2 days where it works. If your output is thicker (whether through diet, Imodium or Gel Tabs you put in the pouch) they'll work longer. They do not work when you are sleeping, but will start again after you get up.

How often are you having leaks? Does your pouch have covexity (is it cupped)? Sometimes that is all you need to stop the leaks. What soap do you use?

The gas problem you are having could be a direct result of the foods you eat...do you use a straw when drinking? You may want to keep a log of foods and how fast they move through and if they cause a lot of gas. That way you could limit those items and only eat them when you are at home or don't care if you get gas!!

Have you tried Gas-X? Some on this site swear by it, too!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 3/3/2010 7:36 AM (GMT -7)   
My old system had a bag with a filter and it DID work. I had to change every 1-2 days because of leaks anyway, so I don't know how long the filters last. BUt the system I use now does not have filters, and the bag swells up a lot. There is a big difference to me
26 year old female
Diagnosed with unspecified UC 11/08
Asacol, Prednisone, 3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
12/18/09 First part of J-Pouch surgery; recessed stoma
12/30/09 Second part of J-Pouch surgery too soon; fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Fistula Repair
Now just trying to hold out as long as possible until we can try the next surgery
Imodium (4/day), Questran (3/day)


walkinghorsefan
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/3/2010 7:23 PM (GMT -7)   
It only leaks every once in a while. I change about every 3 days. I use Ivory soap. I also use a protective patch to clean the area. Can someone recommend a bag? I guess it could be my diet. I eat almost anything I want, except cucumbers. Would spicy food bring on the gas? I don't have stomach pains, just gas. Pam, you have been through a lot. I had cancer surgery twice, the first time was a scraping, the second was a permanent colonscopy. I would rather have the bag then that terrible diarrhea. If I could get more of a handle on the bag.

Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 3/3/2010 9:13 PM (GMT -7)   
My reason for getting my colostomy was the constant diarreah from Crohn's. I use the Hollister 2 piece, with the closed pouch. The pouch has a built in vent and during the day I clean the pouch. I change the pouch every day. I go 3 days between skin barrier changes. The pouch will balloon if there is runny poop blocking the vent, otherwise the gas goes into the pouch and is vetned out asap with no smell. During my showers I leave the pouch on, and if it is day 3, I take a shower totally nekkid (appliance free..lol) use NO soap, the adhesive wipes only every third change. When putting on the new skin barrier, I use liquid bandaid around the stoma. This last's 3-4 days and if I do get a leak, the bandaid prevents the feces from sitting directly on the skin. Hope this helps!!!

-Allie
www.oscartheostomy.blogspot.com
-Allison
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


walkinghorsefan
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/3/2010 9:27 PM (GMT -7)   
Yes, that helps a lot. Not having control of the system has really caused me to be depressed. My husband of cancer this year. We both were fighting cancer at the same time. Although, I feel cancer has helped me grow, I don't know any one personally with a colonscopy, and that made it hard to cope. I have to order soon, so I will the the hollister brand.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/3/2010 10:25 PM (GMT -7)   
I use the hollister, and it has a filter, that works for a while, then i find it starts to leak around the edge sometimes, way before i need to change, so i just put a piece of tp over the filter and tape it down.
Anyway, i dont use anything at all, i takea shower, take it off, clean it with water, put the paste on the wafer then put it all on, then use a sure seal.
The more prep stuff you use, the weaker your seal will be. whne i was using the prep, if i got the slightest bit wet it peeled right off, even from alot of sweat, and if i managed to stay dry i was only gettina few days. Lots of people have that trouble.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 3/4/2010 5:10 AM (GMT -7)   
Welcome Sherry! :-)

I'm sorry you're having leaks. There are lots of ostomy products to choose from, you just have to find the right one for you. If you call or visit the manufacturers web sites, they will send you free samples:

www.coloplast.com
www.convatec.com
www.hollister.com.

On a personal note, I have been using the Coloplast Assura Extended Wear wafer #2833 with matching pouch #13986 for 4 years now and have not had any leaks. The skin prep is built into the wafer, so I put it on dry skin with some Stomahesive paste around the hole in the wafer.

You will find the right product for you. Now, I just wish I knew how to fix a teenager's attitude... eyes

Good luck and keep us posted!

Cecilia
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


walkinghorsefan
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/4/2010 6:47 PM (GMT -7)   
I would love to know how to fix my teenager's attitude. My husband died in February and I am still here. At least, until the Lord calls me home. I am going to the links to help me with choosing products.

You mean the protective patch will loosen the adhesive? It smells like it has alcohol in it. Is there something else that will take any thin adhesive left behind? I do shower with the bag off. But if I shower with the bag on, I try to keep it from getting too wet. I noticed it wasn't lasting at all, when I was flushing the bag every time I emptied the bag.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/4/2010 7:02 PM (GMT -7)   
Sherry~you can also go to www.uoaa.org for a complete list of companies and some great overall ostomy information:)

Sorry, cannot help you with the teenager thing...I've got one of my own!

Yes, the skin prep can impede with the appliance sticking...you could try a second wash with soap after using it, that works when I use it. A Sure Seal will help with wear time by protecting the wafer when showering or swimming.

Have you tried M9 drops for the smell?
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 3/6/2010 11:06 AM (GMT -7)   
Sherry,  One thing that I have been told is that if you put a few tic tacs in your bag it reduces the smell.  I don't know the first thing about having a bag but that is what my friend told me as she has one...Leslie
Leslie King


walkinghorsefan
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/6/2010 7:44 PM (GMT -7)   
That is very interesting. Do they have a website for people in our same situation that might be able to meet and be friends?


Sherry

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/7/2010 4:51 AM (GMT -7)   
Sherry~www.uoaa.org ...you'll find general info and support group links for your area
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 3/7/2010 4:48 PM (GMT -7)   
I had a total colectomy in November 2007. after trying a few "pouches"' two piece and one piece I settled on one piece Convatec 400598. It is clear and available opaque 400599. It does not have a vent. I install a vent called E-Z VENT. It sticks on the top of the pouch. When needed you just open it and let the gas out. It will plug up overnight because you are laying down. In the morning taking a shower I open the vent and let some water into the vent opening and I am ready for the day. As for changing the wafer/pouch, I usually change every four days. I tear three pieces of paper towel into four pieces for cleaning. When I remove the pouch/wafer I USE NO ADHESIVE REMOVER! You only have to wash it off with soap. I USE NO SOAP! After the pouch is off just fold each piece of paper towel twice more into a clean absorbent pad one at a time as you use them. Just dampen with water and clean the area of any "pre-poop". (It's not poop until it comes out your anus, and that ain't gonna happen!) When it's clean just dry with a hair dryer and put on a new wafer. Adhesive removers and soap just hamper the adhesion.

Dan

walkinghorsefan
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/7/2010 9:05 PM (GMT -7)   
I am using a ConvaTech and it isn't working that well. But it isn't vented. I had gas that was so obvicous, my daughter thought I had just emptied it. A Hollister nurse told me to use Ivory, just nothing with perfume in it.

The hair dryer is a great idea. I have tried to use a 2 piece before, wasn't much better then the one piece but now I know what I was doing wrong. My kids think my life is over, but I am going to prove them wrong.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/8/2010 5:01 AM (GMT -7)   
Soap is okay, just nothing with moisturizers or perfumes and make sure you rinse well...I've used Dial for 10 years without problems!

I prefer two pieces (you can change the pouch when the filter fails) and it is easier to see to apply:)

OMG...you life is SO NOT OVER...you sound like you have the fighting spirit back!!!!!!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


walkinghorsefan
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/8/2010 7:50 PM (GMT -7)   
I had rectal cancer twice, so I had to fight for the sake of my 13 year old grandaughter. I thought it was over for a long time too. But I think I will look into the support group in St. Louis.

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 3/10/2010 4:01 PM (GMT -7)   
WALKINGHORSEFAN
Try the stick on vent I mentioned .....EZ VENT.......really works.

Let us know when you do/

Dan

walkinghorsefan
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/10/2010 7:32 PM (GMT -7)   
Well, I have a hollister vent on now, a sample, I swear, I can smell a little gas. I wonder if anyone else can?

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/10/2010 8:00 PM (GMT -7)   
honestly, its probably in your head!
at first, ithought that all the time.
Although sometimes, if i eat fish or something stinky, and have a lot of gas i will catch a whiff.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007! 
-I have gone to find myself, if i get back before i return, keep me here-


polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 3/10/2010 8:05 PM (GMT -7)   
Sherry
Just remembered that they changed the instructions. The new instructions only work with a two piece. I wear a one piece convatec and the EZ VENT works just fine. After you stick the vent on at the top of the pouch you have to punch an opening in the pouch through the center of the vent. You need to make as many holes as you can. You will understand when you get the vents.

Dan
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