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Posted 5/27/2012 8:47 PM (GMT 0)
My husband has what we hope will be a temporary ileostomy.  He had rectal cancer tumors removed May 9th and was only discharged on May 22nd.  They sent us home with 5 skin barrier wafers and 7 bagsEa two piece system.  Right away we started having issues with leaking.  The surgeon forgot to call in the order for more supplies so now we will get nothing until Wednesday due to the Memorial day holiday.

Home health care came by on Friday and said things looked good despite skin irritation that was starting and continuing leaking.  She left me ONE moldable "ring" and some Stomahesive powder and Stomahesive paste.

We tried the paste last night but still had leakage.  Had to change skin wafer and bag again today at 10:00 a.m. and it started leaking immediately....just put on the EASKIN moldable ring, the LAST skin wafer we had, and another new bag.  If this leaks I don't know what to do.  It is 2:00 p.m.  and home health care won't send anyone until 10:00 a.m. tomorrow.

Any suggestions, prayers, support or advice will be greatly appreciated. mad

 

Posted 5/27/2012 10:34 PM (GMT 0)
Sorry, I can't offer any advice as I didn't have to get a bag.. But thoughts and prayers are with you. Best of luck. Just try to hang in there...
The only thing I can offer is, call your pharmacy, and they may give you enough supplies to get thru until you see your physician. Or go directly to the e.r. and they can help you.
Posted 5/27/2012 11:41 PM (GMT 0)
I would recommend going to the ER as well. I had issues with mine leaking and after the fact, they told me I could have gone to the er and they could have fixed me up.
Posted 5/27/2012 11:54 PM (GMT 0)
Thank you to both responses.....guess if this last skin wafer leaks the ER will be our only choice as you both suggested.  My grand-daughter suggested we just use 4 x 4 GAUZE PADS that I can buy without a prescription and just paper-tape which is less irritating to the skin until home health gets here tomorrow.   Or I can try taping the bags directly over the stoma with tape as well....nothing else I can do!

 

Posted 5/28/2012 12:03 AM (GMT 0)
What is your process when changing? Perhaps we can help stop the leakage.

Dan
Posted 5/28/2012 11:31 AM (GMT 0)
I think the gauze is a bad idea -- the output is very acidic, and gauze will not protect the skin. Definitely go to the ER if you need to.

But please follow up on what Dan said. Describe in detail the steps you are using to change the pouch, and maybe we can help. It takes a while to figure out what works for you, but there are some common mistakes that people make, where fixing them can make a world of difference (for example, if you're using too much powder or not washing off adhesive remover, those alone will make the pouch not stick).
Posted 5/28/2012 4:07 PM (GMT 0)
Are you meausring each time? This early the stoma can actually change hour by hour. If you are using paste it can cause the seal to weaken. Make sure the area is clean and free of hair and soap residue. I wash the water only with water. When you do get an rx, get some sure seals also.
But I agree that posting your system is a good idea.
Posted 5/28/2012 4:08 PM (GMT 0)
Not pastes, paste helps. I meant to say powder!
Posted 5/28/2012 4:55 PM (GMT 0)
We clean area with water or at most I use a little bit of Ivory soap and then rinse well.  I did use a tiny bit of oil to remove residue but made sure I washed again in the shower with soap and water, rinsing well until skin was completely non-oily.  Pat dry, put powder on the sore spots, wipe off excess powder (gently because skin is so raw now).  I used the skin barrier "lollipop" around the stoma to further protect skin.  Then applied wafer making sure it stuck completely around.  Next attached bag to wafer after cutting out the stoma shape.  Made sure it fit snug around the stoma with no gaps.  Then I tried the paste around the stoma before attaching the bag.

Both nurses that have seen Bill said I did it right but after a few hours, it starts to leak out the sides of the skin wafer.  We put our LAST skin wafer on at 11:50 a.m. yesterday (Sunday).  I set the clock for 2 a.m. to check on Bill and it was leaking again.  It is almost 10:00 a.m. and I removed the last bag and skin wafer an hour ago.  My husband is lying naked on the couch trying to let the sensitive skin get some air to it.  He has toilet paper wrapped in his hand to dab at the feces as they come out.  He refuses to eat or drink because it will produce more.

Home health is on their way with two days supplies but that is only if the supplies work which they have not so far.  Bill has decided to forego chemo post-surgery because it will prolong all of this for another 6-12 months.

 

Posted 5/28/2012 5:25 PM (GMT 0)
Is the stoma out or retracted? Oil and soap residue on the skin make the wafer unable to stick. I use only water and paper towel pieces. If the stoma is out you should not need pastes. If it is retracted you may need a convex wafer. I do. Makes a world of difference. Less is better. If you can stay away from powders, please do. If you must, use it sparingly and apply a skin barrier on top. I dry with a hair dryer before applying anything.

Dan
Posted 5/28/2012 5:58 PM (GMT 0)
Also, it will take a few days to get but you need to order a bottle of Friar's Balsam Compound Benzoin Tincture. I use it on every wafer change. It has healing agents and dries sticky and is an excellent skin barrier. Apply with a q-tip. Does not hurt the stoma. Stings on open skin. It is only sold on line. www.well.ca Search friars and two will come up. You want the one for $9.49, not $7.69. about $13 shipping. And only use water and paper towel pieces to clean. No soap. no oil, no powder.

Dan
Posted 5/28/2012 6:55 PM (GMT 0)
Stoma is "out" and protrudes about 1/4 inch from surfaceof skin. Home health nurse just left and watched me apply new skin barrier and bag. She said I should cut opening a little bit bigger and use paste all the way around the outside of the rubbery part of the skin barrier (before the cloth adheasive part) to create a wall of paste to keep fluids from leaking under the adhesive of the barrier. For some reason the fluids seep out of the bag and then under the edge of the skin barrier and that lifts the skin barrier off of the skin and leaks. She said skin is not "infectious" yet but to watch it closely for signs of weeping, open blisters, etc. We see surgeon tomorrow.

Bill is adament that he will not have chemo that would extend the wearing of the bag. We are using soft, old washcloths to clean around stoma and then pat dry with towel. I will try the trick with the hair dryer but Bill is afraid I will burn his tender skin....our dryer only has two settings, low and high which controls force not temperature. Home health recommended using the swab barrier over the tender skin and sparingly put on powder to dry the sores.
Posted 5/28/2012 9:34 PM (GMT 0)
When you see the stoma it may be 1/4 inch above the skin, but during peristalsis the stoma can retract and become flush with the skin. This happens to me and I started using a convex wafer about 2.5 months ago and haven't had an accident/leak since then. I understand about wanting to treat the sores/sensitive skin areas under the wafer - I have pyoderma gangrenosum under my wafer right now and I have to treat it before applying my pouch.

Be sure you are wiping away any excess powder that may have floated onto the skin. Additionally, be sure to wipe away any excess on the area you intended it to be on - only a very thin layer should remain. Once you apply that dab it lightly with the skin barrier/prep (sounds like you use cavilon) and then you have to let it set up before continuing on. I use the hair dryer on the lowest speed on the cool setting. You can also buy those handheld battery operated fans at the dollar stores and they work well too (my WOCN uses one). Apply a generous enough ring of paste around the opening on the pouch and be sure it is right up to the edge that you cut (or that was pre-cut if that is the case). If you feel you have gone over the edge too much you can stick your finger into a stream of cold water and then use that damp finger to push the paste back into place. Apply the pouch and use gentle pressure right around the ring to be sure to get a good seal with the paste. Then I hit all the other parts with the blow dryer on low heat/low strength. Then I keep my hand over the pouch for about 10minutes and I try not to do much of anything for that 10minutes except lie down (no bending, flexing, etc.)

The opening you cut should not be more than the TINIEST bit larger than your stoma - the larger the hole the more likely output will get under your wafer. At this point I would be measuring the stoma every time you change because it changes size SO much during this time.

It is frustrating, but it sounds like you have a good attitude and are hanging in there. Continue to ask questions here, LOTS of years of experience combined :)
Posted 5/28/2012 9:37 PM (GMT 0)
I would encourage you to get some samples of a variety of brands -- some people have trouble with one brand or another, and then something else works much better. The major brands are convatec, coloplast, and hollister, and they all will send free samples (if you order from a big supply house like edgepark, they can get samples too).

I don't use paste, I just use the eakin seal.

Another product you might try is sure seals, from active life products (or see if the nurse can give you some tegaderm -- it's the plastic that holds down IV's). These go around the wafer and hold it down better. If there is a leak, they keep it in so it doesn't get all over the place.

Does he have a soft belly? I was having leaking issues, and my belly was soft (even though at the time, it was fairly flat), and my nurse switched me to a convex wafer, and that fixed the problem -- they aren't only for short stomas (although 1/4 inch is pretty short -- mine is permanent and more like 1 1/4 inches long). It's worth it to talk to the nurse about a convex wafer...

I understand that your husband is suffering a lot now with the irritation and the leaking issues, but I wouldn't make long term, possibly life and death decisions based on that. Many of us had problems with the bag at first, and then they got fixed. I haven't had a leak in over a year, for example....

I am in a support group where there are a lot of people who've had colon or rectal cancer (on this list it's more people with Crohn's/UC/colonic inertia), and it's much harder emotionally than for many of us with bowel diseases.... I was sick for years and years and surgery made me feel better. The people I see with cancer were often fine, and then their lives got turned upside down. It's very, very hard..... but a lot of people are doing great with a bag, and I hope he can get there soon so his decisions about chemo are based on other factors.

Hang in.
Posted 5/28/2012 10:55 PM (GMT 0)
I totally understand your husbands feelings about chemo. I too, made my decision to not take chemo based on having to wait an additional 6 months to have my ostomy reversal. I still feel that I made the right decision. But that was for me and only you two can decide what is right for you. Good luck! Hope it gets better soon. I had lots of leaking problems at first too, and it did get better. These folks seem to have a lot of good ideas for you. I think I had the convex wafer as well, but honestly I don't even remember anymore. Seems like a lifetime ago now.
Posted 5/29/2012 12:19 AM (GMT 0)
Thanks to all who posted.  I will check on getting samples of other products to see what works for us.  I will also ask about the convex wafer so many have suggested even though his stoma sticks out somewhat.   Bill checked a short time ago and skin barrier is pulling away from skin again in same spot on the right side.....just cannot seem to get a good seal on that side for some reason.  So it looks like we will be changing again sometime tonight...lasted less than 12 hours again.

Thank you for understanding that all of this is a shock to us.  Rectal cancer was never something we thought about.  Routine colonoscopy showed tumor and then we had chemo/radiation and surgery.  All of this since January 26th so we are still emotionally reeling from all of it.  Bill is all about quality of life: medical directive specified to surgeon that he could not proceed if sphincter muscles had to be cut.  Surgeon said he avoided that and we just hope he told us the truth.  We will not know until they reverse this and restore bowel function.  I have read on here that even that can be a difficult process.

Neither of us is afraid of death: it is part of life.  What we both fear is living an incapcitated, disabled life.  Right now Bill just does not see himself ever leaving the house except for doctor's appointments because of the bag.  With the leaking, I totally understand this.   It would be so humiliating if he had an accident.

As for his decision about chemo, we will meet with surgeon tomorrow and oncologist next week.  I guess we are wondering what the possibility is of recurring cancer with only one of 13 lymph nodes testing positive.  We want this reversed as soon as possible so we can enjoy whatever time we have left together...whether that is months or years.   After 43 years together, we know we have been blessed to have what we have had already.  More time is just a bonus at this point.

 

Posted 5/29/2012 12:35 AM (GMT 0)
It  sounds like  your husband needs a wafer with some convexity.  When my husband does a full change when he gets out of the shower he puts a clear cap covering the stoma from the top of my mousse..he can fully dry the surrounding area and uses a blow dryer on the cool setting and not too close to the skin. If there is some discharge into the cap he either steps back in the shower that he keeps running or if it is only a little bit and has not gotten on his skin he wipes it away.  If you have skin irritation to tend to then very little powder followed with the skin prep and be sure it is dry and may need to be followed with another very light dusting of powder and skin prep and dry and then put on the wafer.  You may need the eakin seals to give extra protection around the stoma and leaking. 

There is a trial and error finding the right appliance but at the moment you need to have a goodly amount of supplies on hand...not a day to day thing giving you anxiety about not having enough on hand to make it.

If you are not set up with a distributer like Edgepark you need that so you can get supplies fast...you would need a Dr's order/prescription for them to have on file to fill the order.

Honestly if you can get this to the point of working and not leaking it will be a lot easier on the both of you but in the meantime this is upsetting.

Definitely use the emergency room if you are in a fix.  The stoma nurses in the hospital too and they have supplies on hand and they can just bill them to the hospital bill so you are not sent home with not enough due to the frequency of changing needed until the leaking is under control.

I am truly hoping this sorts itself out really fast for the two of you.  Once it is under control and you find a routine that works it is not that difficult but in the meantime this is all consuming.  {{{HUGS}}}

Posted 5/29/2012 1:21 AM (GMT 0)
Ha ha.. I also can totally relate to not wanting to leave the house for fear of leaking..... I was working in a grocery store at the time I had mine. Mothers day 2007. The most horrifying day of my life! I was in the checkstand, waiting on customers, when mine started leaking. And not just a little. I am quite sure my face turned white. I went to the restroom, and ended up having to go home and change and all that fun stuff.. new pouch etc. I can laugh now. It was not funny at the time!!! It gets better, I promise. Even tho I have had mine reversed and have been away from it all for almost 5 years now, I still remember how scared I got, how afraid I was of having a leak...but I got used to it, and it was ok.

Good luck to you both. It will work out, you will find what works, it just takes time. Be glad you have each other. I was alone at the time with only my teen age son in the house. :-)
Posted 5/29/2012 3:11 AM (GMT 0)
I too came home with leakages every few hours. I was alone and very weak due to my complications post op. I was in the bathroom for almost 2 hours with each leak because I then had to change my abdominal wound packing. I couldn't get out of that darn bathroom and it sent me in a tail spin. 6 days home, I ran out of supplies and it was Labor Day weekend, so I went to the local ER after calling my surgeon, devastated and hysterical. He tried to console me, but I just thought what kind of life is this? We all fought so hard to save my life and if this is the outcome...well! The ER gave me a moldable convex wafer and that solved everything. After I received a few days of wear, the skin started healing, and so did I. After a few months, the paste didn't work anymore because of my weight gain, so I started using Eakin Seals with an ostomy belt. I receive 7 days wear now.

I hope you can get through this time. It is all trial and error, and I completely understand that you are just living in this moment and can not see things down the road. After all this gets sorted out, you can then deal with the issues of chemo. This must be such a difficult time for you both, but clarity will come soon. Hang in there :-)
Posted 5/29/2012 3:51 AM (GMT 0)
As others said, stop the oil and soap, those are loosening the seal. A lot of times the home healthcare nurses don't know a lot about ostomies, so don't put a lot of stock into what they say.
When I used the lollipop barrier, or any barrier, as soon as my bag would get the tinest bit wet, it peeled right off. So I quit using it, and things got better! Now I get 7 days. This is what I do.
Take bag off, clean skin with an old towel. I have the wafer ready, paste goes on the inside, I make the hole smaller than the stoma, but just the tiniest bit. Put that on, snap the bag on. Use the hair dryer, it won't burn his skin, it doesn't burn your scalp!
I do it laying down, that way my stomach is flat and it keeps the rolls out of the way,lol. The once or twice I tried changing standing up it was a disaster! I know the barrier is to protect the skin, but the leaking and constant changing are doing more damage. Try it without the barrier or paste. And make sure that there are no gaps, you will see the paste come up through the hole when you press the wafer down.
Posted 5/29/2012 5:33 AM (GMT 0)
Well the bag the nurse helped me with lasted a whole eleven hours and then massive leaking as soon as his dinner began to digest.  Lots of liquid coming out constantly which made it hard to keep him dry.  Skin is a mess.  I did what she told me to do putting lots of stomahesive paste around the outside of the wafer ring (before the cloth part) but when I put it against his skin he started screaming because the paste burned him so badly.  I persisted and pushed it down all the way around anyway with him screaming at me to stop.  Then I put the bag on and pushed around again...more screaming and we were both in tears.  It took me half an hour to get him dry and do the change. 


I called the nurse and told her what happened.  She was very sympathetic and sorry for what we are going through.  She is trying to find another nurse to consult with.  I only have one wafer left and have to get through till sometime Wednesday...don't know when supplies will arrive or what supplies I am getting. 

I appreciate the support but I don't see how we can continue like this.  I am scared to death of hurting him further and I know the stomahesive paste is going to be a ***** to get off of him when we have to do another change.  His skin is so red and starting to look "weepy" in places around the stoma itself.  Rash everywhere the wafer touches and now down his side where leakage dripped. 

I want to just let it "air" out but since it keeps draining, how do I protect his skin while that happens if it keeps draining?  Other than having him starve for 24 hours so it stops and letting air heal his skin????   We are both taking Loritab and trying to fall asleep.....my arthritis in my back is killing me from bending over him to change the dressings and he is in pain from the changes.

Doing the best I can but starting to lose it!

Posted 5/29/2012 11:43 AM (GMT 0)
The paste burning is not unusual. But it sounds like he is allergic to the wafer you are using. You should be able to go to the hospital where your et nurse is and get more supplies, they usually have samples.
I guess you could cover his stoma with some gauze or a washcloth and let him sit in the shower or empty tub for a while, then clean up afterwards?
Hope things get better.
Posted 5/29/2012 12:07 PM (GMT 0)
Are you talking to an ostomy nurse (also called WOC or ET)? I realize I made an assumption that you were, but that needs to be an absolute priority. The regular nurses often have no idea what they're doing, but the ostomy nurses often have the key that fixes everything.

It's wonderful that you've had 43 years together and that you know what a blessing that is. And of course your husband doesn't want this miserable quality of life indefinitely. But these are fixable problems, and when they get fixed, the bag does not have to have a very big impact on quality of life (chemo might be another issue entirely.... or not). Hope he can hear that others have come out the other end of this....a bag is not a death or a misery sentence. People survive colorectal cancer and go on to have years of high quality life.

But absolutely insist on a WOC nurse, asap. Complain to supervisors if you need to. You need expert help now.

So sorry you have to go through all this. Thinking of you.
Posted 5/29/2012 1:05 PM (GMT 0)
Sorry but the home health nurses just seem to come up short on ostomy stuff I found. The first one we had when we stayed near the hospital was an older lady and on the money with her care and instructions. Once we got home I honestly felt I knew more than they did. I could have had additional visits that ins. would have covered and we decided to forego it.

I wonder if you could try and get the Coloplast Sensura type..there is no adhesive and in conjunction with a 1" belt for extra support if that will be more skin friendly for your husband. We are now using the medipore tape by 3M along the top and one side as my husband golfs and this just gives him some extra support since there is no outer adhesive.

He had problems with 3 different systems prior to this one and skin irritations from the adhesive. His leaking only occurred a few times though and one bad blowout which might have been a bit of a blockage due to too much chinese food that night with all the vegetables that I had them cook softly.

Of course you need to get this skin issue cleared up. Some swear by using a duoderm product when the skin is that bad. Clean and pat dry everything and then apply that product cutting out a hole for the stoma. Then the wafer goes on top of that. I guess the duoderm has healing properties for the skin. Of course check this all out. I am not sure if it easily peels away from the skin and how many applications it takes to heal the skin but it sounds like you are needing some different intervention here.

Is it possible to have him readmitted to the hospital to be under the care of a WOCN if you can't get it outpatient????

As stated above once this can get under control and you can maintain things it will be a heck of alot easier. In the meantime you two are going thru h$ll trying to get a handle on this. At this point you need help.

I am sorry that this has become such a focal point that your husband is foregoing a process with the chemo that sounds like it will be a benefit and help for his condition and extending his life. I pray you can get this cleared up quickly and find the right system and then it will allow you both to reexamine and reevaluate other considerations that are important for his total recuperation.
Posted 5/29/2012 3:04 PM (GMT 0)
My 1st week home, I had a home health nurse that came for my ab wound changes. Her ostomy knowledge was minimal and all she could do was give me more supplies until my appointment with the WOCN, which was 6 days after discharge. When the WOCN came, she evaluated and told me to....1.stop using the adhesive remover 2.I have a dip and should put a dime size paste in addition to the paste around the wafer 3.A moldable convex wafer (moldable because it takes out the guessing of cutting because it will take the right shape and convexity because it could retract.) She applied a flat, cuttable wafer that day, broke 4 hours later. She ordered my supplies during her visit, but it was the Friday of Labor Day weekend and I only had couple of the others left, so that night I had to go to the ER. My skin was so raw, the paste burned and the leaks were sheer fire.

Call the hospital and make an appointment for the WOCN...it's emergent. Ask for a supervisor if needed. Get the home health agency to send out a WOCN. The WOCN should evaluate you more thoroughly and the WOCN should be ordering your initial supplies. My home health nurse ordered my abdominal wound supplies and made an error, telling me the one was the same as the other. The WOCN said no, but because it was ordered and shipped, my insurance wouldn't cover for another order and I couldn't be without anything if I denied the shipment.

I'm sure that this is an easy fix, solved by a trained eye. Praying for a good day today!!
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