ileostomy bag nightmares

musiclover · February 2006

My friend just had rectal surgery (went well but for the cancerous spot on liver). He has a temporary ileostomy that is causing him such grief. This bag will not stay secured to his skin. He is now resorting to taping it to his body with various tapes. Is there a brand that someone can recommend that stays on for more than two days? I hate to see him so bewildered. He is careful not to let it fill up more than half way before he empties it. It does seem to fill up quickly, though. Thanks for any insight.

Moesimo · February 2006

Your friend needs to see an ostomy nurse. Is there one at the hospital where he had is surgery. Did he go home with visiting nurses. They should have one also. He shouldn't have these kinds of problems. Also many of the websites for ostomy supplies have a nurse that you can call. There is help out there. You can email me thru this site if there is anything I can help you with.

Maureen

4law · February 2006

I had a temporary colostomy bag for a few months. The nurse who originally fit me in hospital was worthless, as was the first nurse who visited me at home. I finally ended up with a visiting nurse who had a permanent bag herself -- and she was great for helping me find eqipment that fit my body best. There are so many brands and products availavle -- an experienced nurse with a bag herself is a great resource. I remember that the tapes were really more of a back-up than a main source of support. Crevices and wrinkles of your skin close to the stoma play a part in the equation. I recall a light application of prep material to thoroughly dry the area is important. I used an elastic belt for extra support and confidence. I emptied the bag frequently. I can tell you that I found the bag very difficult to deal with and became depressed. Accidents? You bet -- my bedroom carpet is a constant reminder! Your friend is going through a lot -- things do get better. He's gotta believe this -- I've been there, done it, and am lucky that it was only temporary. There are many others on this list who have been throught it also. There are many brave people on this list with permanent bags -- and they are living full lives. Your friend will get throught this. Never give up!

JohnWest · February 2006

I have used "Coloplast Assura 2496 1-piece Maxi transparent" for 12 years. They stick like a limpet for up to 4 to 6 days. See my website http://homepage.ntlworld.com/jmwest/ileo.htm for further details.

John West

nanuk · February 2006

Need a great place to post your Ostomy related questions and receive replies from people around the world.
Then take time to visit the International Ostomy Association Discussion Forum http://www.ostomyinternational.org/cgi-bin/dcforum/dcboard.cgi
Also, I have used cymed products for 5 years..I find them more durable than most..the product was
invented by an 80 yr old ostomate who was frustrated with the same problems. They will be happy to send you a sample.
cymed@cymed-ostomy.com

nanuk · February 2006

sorry,I gave you a bad url..this one should work..
www.cymed-ostomy.com/

well · February 2006

Hello musiclover,

Your friend is careful to empty before half full and that is good. Trying to empty at 1/3 or 1/4 might even be advisible for a little while.

There have been some good suggestions posted here (4law's come to mind) and there are also a few other tricks available that might increase wear time for your friend. I'll tell you one (best?) way to find them in a moment.

Sometimes, the problem is on the patient's side, sometimes the problem is on the appliance's side, and sometimes it could even be "operator error" (such as not making sure the skin is completely dry before letting the flange touch it.) One example of a "patient" issue is when the surface of the body is not flat, for example if there are scars from previous surgery, or other areas of unevenness under the flange (and almost always he'll find those are the places where leaks first manifest themselves.) The solution to that is "paste" which is a misleading term, in my opinion. It's not used as a "glue" at all, but rather a "filler" of those odd shaped areas, so the flange can have a more level playing field for adherence.

As for an example of it being the appliance, different models exist, and different manufacturers, which can be manufactured with diffferent varieties of adhesives. (Would a Coloplast brand appliance work where a Hollister or Convatec does not? It's certainly possible.)

I would strongly suggest that your friend get a referral (from his surgeon, for example) to see a WOCN. Wound and Ostomy Care Nurses are much more fluent in these matters than just the average RN, and that extra knowledge includes some of those tricks I mentioned above, and certainly the ability to determine "operator error" as well. S/he will also be able to determine if your friend has an allergy to the adhesives used with one variety of tape (as I do myself.)

Tape is something I consider essential to have in your "ileostomy emergency kit" that you should always carry everywhere. It's great for making a temporary repair, long enouigh to get you from the site of a public leakage incident, until you can get home to a nice controlled shower setting, later. Tape should *not* be needed for routine ileostomy maintenence, in my opinion. If it is, that's a sign that the advice of a good WOCN would be in order.

As far as filling quickly goes, that's probably a good sign, as it means your friend is hydrating himself well, which is important. A long-empty ileostomy pouch (not colostomy) is typically attached to a dehydrated patient, I'd say.

One last thought: The anguish of dealing with these things is often worst around this time. It definitely does get easier with time, but again, that's if your friend has the right equipment and techniques that are appropriate for his individual situation. Tell him to hang in there but do make that phone call; a good WOCN can get him on the right path.

well · February 2006

well said:
Hello musiclover,

Your friend is careful to empty before half full and that is good. Trying to empty at 1/3 or 1/4 might even be advisible for a little while.

There have been some good suggestions posted here (4law's come to mind) and there are also a few other tricks available that might increase wear time for your friend. I'll tell you one (best?) way to find them in a moment.

Sometimes, the problem is on the patient's side, sometimes the problem is on the appliance's side, and sometimes it could even be "operator error" (such as not making sure the skin is completely dry before letting the flange touch it.) One example of a "patient" issue is when the surface of the body is not flat, for example if there are scars from previous surgery, or other areas of unevenness under the flange (and almost always he'll find those are the places where leaks first manifest themselves.) The solution to that is "paste" which is a misleading term, in my opinion. It's not used as a "glue" at all, but rather a "filler" of those odd shaped areas, so the flange can have a more level playing field for adherence.

As for an example of it being the appliance, different models exist, and different manufacturers, which can be manufactured with diffferent varieties of adhesives. (Would a Coloplast brand appliance work where a Hollister or Convatec does not? It's certainly possible.)

I would strongly suggest that your friend get a referral (from his surgeon, for example) to see a WOCN. Wound and Ostomy Care Nurses are much more fluent in these matters than just the average RN, and that extra knowledge includes some of those tricks I mentioned above, and certainly the ability to determine "operator error" as well. S/he will also be able to determine if your friend has an allergy to the adhesives used with one variety of tape (as I do myself.)

Tape is something I consider essential to have in your "ileostomy emergency kit" that you should always carry everywhere. It's great for making a temporary repair, long enouigh to get you from the site of a public leakage incident, until you can get home to a nice controlled shower setting, later. Tape should *not* be needed for routine ileostomy maintenence, in my opinion. If it is, that's a sign that the advice of a good WOCN would be in order.

As far as filling quickly goes, that's probably a good sign, as it means your friend is hydrating himself well, which is important. A long-empty ileostomy pouch (not colostomy) is typically attached to a dehydrated patient, I'd say.

One last thought: The anguish of dealing with these things is often worst around this time. It definitely does get easier with time, but again, that's if your friend has the right equipment and techniques that are appropriate for his individual situation. Tell him to hang in there but do make that phone call; a good WOCN can get him on the right path.

One more thought, and reason to call that WOCN.

A short wear time is not only obnoxious, but it also can lead to problems with the skin under the appliance. Once those develop they are much more difficult to deal with than they would be in an area that's normally exposed to the air. (What do you do when skin is complaining about the appliance? Rip the appliance off, ouch, and then put another one right on the problem spot again, double ouch, since an ileostomy basically has constant output and can't be left uncovered.)

Don't make your friend panic about this, but get him to make that call for a WOCN referral now, don't wait until there is skin degradation from the frequent appliance changes or leaks.

Again, hang in there, it does get better.

ileostomy bag nightmares

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