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SO FRUSTRATED!!!! OSTOMATES NEED YOUR ADVICE

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Posted 8/28/2009 10:25 PM (GMT 0)
So....

I am almost 4.5 mo post op ileo. I have not had a good week with my ileo since the surgery. I have visited the ostomy nurses 5 times, tried five different appliances and still I cannot get a bag to stay on for more than 24 hrs (maybe once in a while 36). Right now I have been using the convatec two-piece durahesive with a barrier ring. It lasted all day....changed it this am at seven and got home from work, took a shower, was in 2 min and the entire wafer lifted up. I have had so many leaks, etc. My skin is "ok" right now, but that is becuase my bag will not stay on. I have constant leakage from the downward flow hole???? out the bottom that continuously breaks down my skin and it has never healed fully. So I have stool coming out both holes daily. Also, my stoma pints straight down, does not even stick out enough for me to have it come through hole in wafer. It willl drain in bag and under the wafer as well until it lifts off. It measures just under 7/8'' when i push it out, but it wont stay there and when it retracts it measure 3/4''....I have to keep paying for more supplies becuase they do not last. In one week I have gone through 13 wafers and 13 bags and barrier rings. I am at my wits end.

I am going though iofeedback right now for possible reversal in Oct? I do not know if I should just waut it out, get it revised? or if you all have any ideas. I cannot do the things I want....no water, sweating, anything. Please let meknow if you have any ideas.

Lizzie

Posted 8/29/2009 3:08 AM (GMT 0)
Hi Lizzie,
Im so sorry you are having so many problems. I am certainly no expert as I too have only had my ileostomy since early march. But in the beginning I did have a couple of issues with leaks as well and found that paste helps keep mine on. Perhaps your not completely dry when u put your bag on and another tip I have learned from the wonderful people on this board is heat the wafer with a hair dryer once you have put it on it helps secure it that bit more. Do you have a stoma nurse you can go and talk to about it? You said its costing you as well which makes me think you must be in the USA because I live in Australia and we only pay a membership fee of only 36 dollars a year and cover the postage of our products and we can get 30 bags a month as well as all the pastes and wipes and any other accessories we need, it is brilliant. I hope I have helped in some way but as I said Im still learning myself. Keep us posted on how your going. take good care
Posted 8/29/2009 3:40 AM (GMT 0)
Have you tried a 1 piece yet. I use convatec 400598. It has a precut hole but it is small (like 3/4 inch) ...you cut the hole larger to the exact size that you want to fit your stoma. I have a pair of scissors that are curved at the end, ask your nurse for them if you decide to change to a 1 piece. Cutting the hole larger to size takes just a minute and you can cut the hole in an extra bag to have available just in case. If you dont like the size hole you cut, cut another bag. You get accurate after a few tries and dont even need to measure. They last 3 days or longer. The paste is also convatec. The adhesive backing of the bag and paste eventually mold together, (thats right the paste glues to the backing paste of the bag and become one), so it typically doesnt get loose until the paste expands after a couple days.
Posted 8/29/2009 3:56 AM (GMT 0)
Lizzie-tell us exactly what you do when you put on your bag, that way maybe we can see if there is something that might be changed to help you.
Posted 8/29/2009 9:45 AM (GMT 0)
I'm not familiar with ConvaTec's Durahesive. Are you using convexity?
Posted 8/29/2009 12:11 PM (GMT 0)

I am so sorry to hear of your struggles! 

My stoma is not nearly as small as yours, but I did have issues with leakage from the bottom of my wafer in the beginning.  I found that some wafers just didn't form to my body well.  I also learned that I needed to dry the skin around my stoma the best I could before applying the Eakin Seal and wafer.  I use a washrag to dry the skin and...to be honest...I sometimes stand in the tub/shower and use my q-tips, brush my hair, etc. while allowing my skin to air dry as much as possible.  blush    I stand in the tub b/c I'm worried of messes...as I do shower with my appliance completey off when I change it.

I use a Hollister one-piece 88300 with an Eakin Seal.  I find the wafer to be durable and moveable.  I had loved the Coloplast two-piece but the wafer seemed too restrictive and "popped" easily.  Hollister also has a one-piece that has a cloth wafer that moves easily too.  I have chosen the one-pieces b/c I feel more secure with them and am able to play hard with my son and go about my day with no issues.  yeah

I do hope you find something that works for you soon!  I did find that the more dry my skin the better the seal.  And I have found that since showering with each appliance change they are also staying on better. 

I wish you luck!!!!!!!

smurf  

Posted 8/29/2009 12:27 PM (GMT 0)
Lizzie--I have a similar stoma in the sense that mine is small and short...I was having problems with wafers staying on and I came up with this solution for me and maybe portions of it can help you!

I use Convatec's Durahesive with convexity-2 piece-5/8" (I measure 3/4")-with an Eakin Seal

I have to make the Eakin Seal SMALLER so it is just a 'hair' smaller than the opening of my wafer. I apply the ES to the wafer and apply that to my skin.

I only use Dial Soap. NO adhesive remover (I push my skin down and away from the wafer--don't pull) and I don't use skin prep. If I have redness, I might use powder but I cannot remember the last time I did.

I clean the skin and let it dry for a few seconds before applying the wafer. I also use Sure Seals over the top of the wafer and those give me an extra day or so.

I find the trick is to cover the lower hole a little...that way nothing can get into it and have to come back up...I have an end loop ileo now, but when I had a temp loop ileo my surgeon would put 3 or 4 stitches in the lower hole to stop that never ending passage of poop through it. I really had great success with that, too.

I was able to go from 1 day wear time to 5 or 6 days wear time with this...I am not saying it will cure all your problems, since you may have the best luck with a revision, but one or two of my suggestions could help to get a couple days of wear time. Good Luck and let us know if you have any questions.
Posted 8/29/2009 7:20 PM (GMT 0)
Thanks for all your replies.....

This is what I do when applying my bag. I shower dry off really well (usually wait at least 10 min before putting bad on). I use a convatec convexity two piece durahesive. The hole is very small and you roll it back to fit your stoma size. I do and before putting it on I use an eakin seal and I even try and put extra eakin seal towards the bottom where I am getting leaking out of the lower loop where my skin brakdown is bad. If the skin is I hold the wafer for 20 secondsopen and weeping I apply some powder. This issue is right away, even though though I dolf the wafer down (which pushes my stoma out) for at least 15-20 seconds as soon as I let go my stoma falls below the hold I have rolled back (which was the size of my wafer. I think this is because it is so short, points down, and retracts. I have tried a one piece (marlen) which was suggested by my stoma nurse and is suppposed to work really wekk and is very flexible, but this too did not work. I have tried the convexity by hollister and two other companies. I have visted the stoma nurses four times, they have taken pictures and said they do not usually see a stoma like mine. It was normal and 1 1/2'' at first, but as it shrunk it started retracting. When I lay down the stoma actually goes beneath my skin level and when I I standing up its just over flush with my skin.

So this is my process....i think I have been doing everything I can, but you guys are the experts. My reversal is mosy likely if it happens in mid- to late october, but I do not oknow if I can wait this long. My insurance covers my monthly appliances of 20 bags, ad 10 wafers.....my issue is i use about minimum of 8 wafers a week!!!! So I keep getting bills for the re-orders. Anyways....hope this helps better explain.

Lizzie

Posted 8/30/2009 2:40 AM (GMT 0)
hmmm, well im not sure what to do about it rolling back in.
Sometimes powder will keep you from getting as good of a seal,but you arent using that everytime.
have you tried one of those belts?
Posted 8/30/2009 11:23 AM (GMT 0)
Lizzie--for stomas like ours, I would try a precut or a cut to fit...I found the moldable one, while great when you have a longer stoma, doesn't have enough strength for shorter ones that retract. I used the moldable, too, for a while and my nurse suggested the cut to fit - that's why I use the 5/8" precut which is really smaller than my stoma size, but the durahesive material isn't a hard material and absorbs liquid and it become a bigger hole but still has the strength I need. Maybe call your supplier and see if they will send you one or two samples...good luck
Posted 8/30/2009 10:00 PM (GMT 0)
I have learned that its all about preparation, at least for me. After showering, I super clean the entire area around my stoma with sterile wipes (non alcohol). I do that twice. I then apply two coats of Skin Prep making sure that everything dries completely. My skin is now just a tad tacky to the touch. After applying a bead of Adapt paste around the hole in my appliance, I firmly press it into place. Attach pouch. Then.....heat all the adhesive with a blow dryer. I do this religiously every Sunday morning. Good luck.
Posted 8/31/2009 3:57 AM (GMT 0)
Thanks everyone for your suggestions....I have tried some of them and still have had no success. I cannot afford the amount of bags I am going through. I agree OHIO that with our type stomas the "turtleneck" effect on the short stoma is not effective. I have tried the one you use, I just cannot stop the seeping underneath. I had to change three times today, not becuase the wafer would not hold today, but instead I had such bad burning and itching that I cannot take it. I took bag off tonight after having on for 5 hours and my skin was open, weeping and bleeding on bottom of stoma were mine retracts and points down. I am going to call the stoma nurses agin tomorrow, but last time I saw them they had no other suggestions besides a possible revision. They took pictures and sent to my surgeon supposedly.

What does a revision entail? If its not a big deal I am tempted to do it.....I "think" my reversal could be in October, but nothing is for sur ein my situation. Unlike many of you I have been dealing with rectal inertia after colonic inertia and just started having a functionin rectum. I am scared things could change again and then I would be stuck with this retracted, small, stoma that makes my day a living he**. Its so much harder to deal with a problem stoma.......I love the life I have back, but this just holds me down.

Lizzie

Posted 8/31/2009 4:14 AM (GMT 0)
Lizzie,

I'm so sorry you're going through this. (((big hug))) My temporary jejunostomy pointed downward like yours, so I was having daily leaks, too, and it was so frustrating!! The only thing that worked for me was the Convex Coloplast Assura Extended Wear wafer with an Eakin Seal. Being able to get 3-4 days wear time saved my sanity. I hope you find a solution to this, because you should not have to live with daily leaks.

Cecilia
Posted 8/31/2009 4:30 AM (GMT 0)
I just thought of something else... ask your nurse or doctor for some Nystatin powder for the skin around your stoma. It is an anti-fungal that will help heal the irritated skin. Calmoseptine Ointment is a great skin protectant, too.
Posted 8/31/2009 10:19 AM (GMT 0)
Lizzie--I know you are hoping for an October reconnection, but I would honestly suggest seeing what would need to be done for a revision...sometimes they can be an easy out-patient surgery. Talk directly to your surgeon and find out what it would take for a revision of yours and make a decision. I agree that quality of life is so important and the problems you are experiencing aren't normal and should be corrected, even if it is only for two months...please don't suffer.
Posted 8/31/2009 3:08 PM (GMT 0)
HELLO I AM NEW TO THIS I AM GOING FOR A RECTUM COLON SURGERY NEXT TUSDAY THE 8TH OF SEPT KNOWING I WILL ALSMOST CERTAIN COME OUT WITH A OSTOMY BAG FOR GOOD I HAVE HAD RECTUM CANCER IS STAGE TWO RIGHT NOW I M NOT SUE HOW IAM GONNA HANDLE THE BAG I HAVE LOTS OF SURGERIES IN THE PAST I HAVE A NEW KIDNEY (WELL ITS TNE YERAS OLD NOW I HAVE HAD 4 PANCREAS WITH THE LAST ONE JUST FAILING DUE TO THE CHEMO AND RAD I WOULD LIKE SOME INFO ON WHO HAS THE OSTMIES HOW THEY ARE COPING AND IF THEY WILL BE OK TO GET USED TO OR WILL I GO CRAZY THNAKS

JOSI SCHIMINSKI

COON RAPID MINNESOTA 36 YEARS OLD AND I HAVE  GREAT WONDERFUL HUSBAND THATS SAYS HE WILL BE WITH ME THROUOUT THE WHOLE ORDEAL

Posted 8/31/2009 3:24 PM (GMT 0)

Argghh....

Going to lose my mind. I changed my bag sure to the itching/skin breakdown at 7'ish last night and work up at 3 am with a bed full of stool and a leaking bag again. I am so beyond frustrated. I just called the ostomy nurses and am waiting for a call back from them while I am at work. I agree that I just cannot do this anymore....and I feel I deserve to be having a better experience with this and not worrying when my nest leak or skin breakdown is going to occur. My skin looked decent this morning despite the leak, I put some nystantin and stoma powder on the weeping bleeding part last night and it seemed to calm it down. It will only be a matter of time before the would is open again though. Considering I only had the bag on for 8 hours the entire area behind wafer was covered in stool. If it would have been on any longer the skin would have brokedown.

Thanks for all your help. I really appreciate all of your kindness. I need to do something about this.

Lizzie

Posted 8/31/2009 3:47 PM (GMT 0)

So.....

I just got off the phone with the ostomy nurse and they feel they have done and tried everything they can for me with the appliances. They feel my surgery date needs to be moved ahead or a revision needs to be done. He also told me to get a letter of medical necessity to help cover the extra supplies I have been having to order.

What do you guys think???

Lizzie

Posted 8/31/2009 5:43 PM (GMT 0)
Well, Lizzie, I haven't been directly in your shoes, but I would at least have the revision ASAP. I know how miserable I was for a short period of time before I got the right appliance working for me, I couldn't imagine going through what you are right now...it's not any way to live. An ostomy isn't supposted to tie you down and this one seems to be difficult to manage.

Will they be able to get you in sooner at the Clinic? That would be best case scenario, but which ever one you can have done, like yesterday, would be the one I would do!

Keep us posted smurf
Posted 9/2/2009 10:23 PM (GMT 0)
So I saw the ostomy nurse today.....They said I had a yeast infection on the skin and excoriation. They soaked it in while vinegar, applied nystop, stoma powder and skin prep. They used both a ring and another barrier I cannot recall the name of. They took pictures and said they do not believe I have enough adipose tissue to push the stoma out. It, when I am lying and sitting, is  retracted below skin level. They tried anether appliance today, but its already burning and I can feel the leaking on my skin.

The ostomy nurse caught my surgeon on the floor this am before i got there. His nurse called me last night. I am going in Friday at 315 to schedule an earlier reversal or takedown. I am scared, nervous, and hope this goes better than my last surgeries. I know you all say its easier and I hope it is for me as well.

Thanks for all your help.

Lizzie

Posted 9/3/2009 12:52 PM (GMT 0)
Lizzie--glad to hear they are getting a handle on things! Don't be scared, no matter what the outcome, you can handle things just fine:) somehow, we all know these are necessary steps for a WONDERFUL life, and find the courage!
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