Learning Ostomy

Question:

Hi all….looking desperately now for any help or suggestions…. I just had a second surgery to make my Ileostomy permanent (and had my anus removed) and am having a hell of a time with the appliances. My wound is quite large around the stoma, and I know this will eventuall close in (i did while I had the temporary tube) but right now it is so big that my appliance just will NOT stick to the skin no matter what I try. I just went through THREE appliance changes in about an hour trying to get it to stay put! I am mentally drained and really starting to regret my decision. My ET nurse gave me about 10 2.5" flange/bag appliances and I had about 7 4" flange/bag appliances at home (going through them fast). The smaller ones are completely useless as the area to "cut" around the stoma is far too small to fit over my entire wound. And to make it even worse, my wound is on the curve of the belly where if you’re sitting or standing it’s pulling or gaping (allowing stool to tunnel out underneath). WHAT CAN I DO??????? HELP!!?!?!?!?!

Response:

Hi Rob, I’m sorry to hear you’re having such a h_ll of a time!  First of all, I suggest you call your ET and see if s/he can help.  You shouldn’t be left to figure this out on your own – call now and see if s/he can help.  If you fail to get any satisfaction from your ET, there are some things out there that you can try.  If the wound is just a little oozy, Eakin seals might work.  There are also dressings that are like "second skins" that you could cut out and put on the wound part.  I don’t know the name of them but they are used on people with bedsores. Your medical supply store should know. Please let us know what you do and what works! ~~~~Pat <RobMcCart…@webtv.net wrote  > Hi all….looking desperately now for any help or suggestions…. – Hide quoted text — Show quoted text -> I just had a second surgery to make my Ileostomy permanent (and had my > anus removed) and am having a hell of a time with the appliances. My > wound is quite large around the stoma, and I know this will eventuall > close in (i did while I had the temporary tube) but right now it is so > big that my appliance just will NOT stick to the skin no matter what I > try. I just went through THREE appliance changes in about an hour trying > to get it to stay put! > I am mentally drained and really starting to regret my decision. > My ET nurse gave me about 10 2.5" flange/bag appliances and I had about > 7 4" flange/bag appliances at home (going through them fast). > The smaller ones are completely useless as the area to "cut" around the > stoma is far too small to fit over my entire wound. > And to make it even worse, my wound is on the curve of the belly where > if you’re sitting or standing it’s pulling or gaping (allowing stool to > tunnel out underneath). > WHAT CAN I DO??????? > HELP!!?!?!?!?!

Response:

Right first thing is to contact your supplier and get a supply of "surgery bags" for some reason the ones they use in theatre are larger than the standard bags, but you should be able to get a supply of them. Secondly use Orahesive Powder or Karaya Powder to speed up the healing of the wound Thirdly consider Eakin seals or stoma paste to help seal the flange And lastly apply the flange whilst either stood or sat up so the pulling you describe is taking place at the time of fitting so the flange will mould to this shape and cope easier during the day Mark <RobMcCart…@webtv.net> wrote in message

news:12995-3AB8E9DB-16@storefull-248.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> Hi all….looking desperately now for any help or suggestions…. > I just had a second surgery to make my Ileostomy permanent (and had my > anus removed) and am having a hell of a time with the appliances. My > wound is quite large around the stoma, and I know this will eventuall > close in (i did while I had the temporary tube) but right now it is so > big that my appliance just will NOT stick to the skin no matter what I > try. I just went through THREE appliance changes in about an hour trying > to get it to stay put! > I am mentally drained and really starting to regret my decision. > My ET nurse gave me about 10 2.5" flange/bag appliances and I had about > 7 4" flange/bag appliances at home (going through them fast). > The smaller ones are completely useless as the area to "cut" around the > stoma is far too small to fit over my entire wound. > And to make it even worse, my wound is on the curve of the belly where > if you’re sitting or standing it’s pulling or gaping (allowing stool to > tunnel out underneath). > WHAT CAN I DO??????? > HELP!!?!?!?!?!

Response:

Howdi Rob, I’ve had an ileo since 1971, at the age of 21. During this time, I’ve incurred numerous problems with my wafer, pouch. I notice that when I gain weight, my stoma becomes larger in size and it was recommended to me by my ET to try and cut a "turtleneck" in the opening of the wafer. Cut your normal sized opening and the all the way around the cut opening make little snips. I have noticed that this not only accommodates a larger stoma but keeps drainage from contacting the skin alot less. So much of soping is physical and mental. Sometimes I think that fellow ostomates can offer more beneficial info than the ET, no disrespect.

Response:

Have you tried Duoderm extra thin dressing? You cut patch a little bigger than the wound area from the dressing sheet and put it over the wound. Then put the wafter on (preferably with an Eakin seal underneath). I had pydoderma, which caused bad wounds in my peristomal area. Duoderm helped greatly, and I wish I had known about Eakin seals. I also urge using a wafer with convexity, and Nu-Hope makes very wide hernia belts with a hole in them big enough for the collar on the pouch to fit through them that might also help keep the wafer plastered to your abdomen. And, if you haven’t seen a dermatologist, it might be a wise investment. They often know some good techniques.

Response:

Hi all, I want to thank you for the great sugestions and websites. Here’s what’s happened…… I went and saw my ET nurse yesterday and after a thorough cleaning and new appliance, she gave me a belt (compatible with Hollister pouches) and so far it seems to do the trick. She put on a new "convex" appliance and with the belt it is holding tight. So far so good, except that last night my "clip" opened creating such a mess…:-( Thank goodness it’s supposed to go up to 58* today, I HAVE to air my place out now, it reeks in here! Once again, thanks for the posts and individual emails, I appreciate all the input. It’s helping to calm me, though I’m still quite a mess emotionally from the last few days of messing……

Response:

Well…this isn’t very encouraging. Hope you’re getting a handle on things. Susan

Response:

A good,properly applied clip should not open until you wish it to. what is a discription of your clip,what color.

Response:

when you put your clip on you have to hear it click when it closes, I have had a mishap or two with these too, and that is the secret. carol

Response:

LOL Susan!!!  That’s because nobody posts when everything is fine.  If we all posted each day when nothing goes wrong, it would get pretty boring around here.  Here you go: I changed both of my appliances yesterday and nothing happened.  No pee or poop spouted forth to hinder me.  I went to bed last night and slept all night – no pouch failures or pop-offs or messes of any kind.  I went to the dentist this morning and although my colostomy has been noisy, it was good at the dentist and never made a peep. Yes – we all have bad experiences with our ostomies but they usually don’t happen very often.  But you’re gonna hear the bad experiences here and hopefully they will help you cope when you experience one.  It sounds to me (and I could be totally wrong) that even though your doctor says you need an ostomy, you aren’t ready for it yet.  Good luck, Susan. ~~~~Pat – Hide quoted text — Show quoted text ->"bch m8" wrote > Well…this isn’t very encouraging. > Hope you’re getting a handle on things. > Susan

Response:

>Well…this isn’t very encouraging. >Hope you’re getting a handle on things. >Susan

If you mean mentally..? Not really….still VERY paranoid that the appliance will leak again. My ET nurse suggested eating "thicker" foods like peanut butter, apple sauce and rice……I did, but now the pressure is building! I "pop" quite often…. There seems no happy medium just yet……sigh I know it iwll get better as my wound heals in, but for now I’m going crazy……… Rob

Response:

If you get encounter a defective appliance or experience an adverse event you can contact your supplier and ET if you want sympathy. Or, you can complain to the manufacturer about poor quality and be ignored. Send your complaint to the FDA. Make sure you include the manufacturer’s name and address, brand name and type of device, all numbers on the package and a description of your problem. Also send a copy to the manufacturer. Inundate the FDA with legitimate complaints and they may investigate. FDA address: MedWatch FDA Medical Products Reporting Program Food and Drug Administration 5800 Fishers Lane Rockville, MD 20852-9787 You might ask them to acknowledge receipt of the complaint.

Response:

Rob: Very early on, I had a clip failure (or I should say a failure on my part to fully close the clip) early on in my experience as an ostomate at a very inopportune moment. Ever since then I’ve double-clipped my pouch.  I use Convatec pouches, which have a long tail and room for two clips. I use Convatec’s small, Active Life clips. I’ve never had that problem in the three years since that one accident. Nor, do I worry about it happening.

Response:

Hi Rob, have you tried burning scented candles in the bathroom?  I do this, not each and every time I empty but enough to keep the odor down and the candles are pleasant.  I always burn the candle when I am changing my appliance. Harry <RobMcCart…@webtv.net> wrote in message

news:8188-3ABB68BD-184@storefull-241.iap.bryant.webtv.net… – Hide quoted text — Show quoted text -> Hi all, I want to thank you for the great sugestions and websites. > Here’s what’s happened…… > I went and saw my ET nurse yesterday and after a thorough cleaning and > new appliance, she gave me a belt (compatible with Hollister pouches) > and so far it seems to do the trick. > She put on a new "convex" appliance and with the belt it is holding > tight. > So far so good, except that last night my "clip" opened creating such a > mess…:-( > Thank goodness it’s supposed to go up to 58* today, I HAVE to air my > place out now, it reeks in here! > Once again, thanks for the posts and individual emails, I appreciate all > the input. It’s helping to calm me, though I’m still quite a mess > emotionally from the last few days of messing……

Response:

>Hi Rob, have you tried burning scented candles in the bathroom?  I do this,

it also makes for a lovey ambience.  kinda romantic. >not each and every time I empty but enough to keep the odor down and the >candles are pleasant.  I always burn the candle when I am changing my >appliance. >Harry

Lauren! (take out the "nojunk" to reply) beer drinking, sax playing, baseball junkie on a rampage … beware!

Response:

But doesn’t it increase the possibility of a devastating xplosion???