cant handle ileostomy

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jmdebb
Posts: 3
Joined: 2015-06-25 09:02:22

cant handle ileostomy

Post by jmdebb »

hi,
my name is jean, and i have a temporary ileostomy, which i am very grateful for, but i just cant handle it. i am so depressed, and i just dont know what to do. its always leaking, i'm afraid to go out of the house, i just want to sleep until the whole process is over, unfortunately, i will it about 5 mos or more. i have another round of chemo that will be 4 mos and i'm not sure when it will start because i am still recovering from surgery.

any help/advice etc would be greatly appreciated.
thank you
jean
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Sandywr
Posts: 317
Joined: 2014-06-20 14:42:29

Re: cant handle ileostomy

Post by Sandywr »

I have a colostomy, so I cannot address your problems. I do not know how long you have had your ileostomy, but maybe your appliances are incorrect. It takes a lot of trial and error to get the right appliance. Do you have a wound care nurse? They can probably give you an idea if you should change your appliance to something else. There are things you can use to help stop leaks like eakin seals around the wafer. If you have a lot of creases around your stoma, paste can fill those in. I wish you a lot of luck with getting this fixed for you. But there is light at the end of the tunnel. Please tell your home care nurse about your leaking, if you do not have a home care nurse, contact your surgeon or your primary doctor and see if they can get one to come out to you. They are so helpful.
Sandy and THE DUDE
Permanent Colostomy since 4/24/2014
jmdebb
Posts: 3
Joined: 2015-06-25 09:02:22

Re: cant handle ileostomy

Post by jmdebb »

my surgery was june 4.. and yes i do have visiting nurses, and even when they change it , it leaks on me. my stomach hurts so much from constantly peeling these things off [from the glue/tape that holds them on] supposedly i do have the right items, but something has to be done, i had to change it last night, and i just had to change it again. my stomach must be creasing maybe, it keeps leaking in the same spot, right on the side of my belly button.
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Sandywr
Posts: 317
Joined: 2014-06-20 14:42:29

Re: cant handle ileostomy

Post by Sandywr »

A lot of people have success with moldable wafers. If your soma sticks out a little, it might work for you. These you do not cut, you just stretch them and put it around your soma and it mold to it. You don't need pirate our rings with it. Ask your supplier to send you out a few to try. It is always hit and miss, until you find the right appliance. Sometimes the nurse says what you have is right because it fits properly, but if you are still having problems something is not working for you. Nurses are great and they really can help you, so I am not saying they are wrong but it is always trial and error with appliances.
Sandy and THE DUDE
Permanent Colostomy since 4/24/2014
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Sandywr
Posts: 317
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Re: cant handle ileostomy

Post by Sandywr »

https://m.youtube.com/watch?v=ZPySiOT6xb4

Here is a video that explains this type is wafer. Watch the beginning and around 5 minutes and 30 seconds into the video, he puts on the wafer. Ignore the bag and iirrigation comments, only colostomy people can irrigate from what I understand. But I think your ostomy has to stick out for this to work. Try it out...you have nothing to lose and everything to gain. It will get better for you.
Sandy and THE DUDE
Permanent Colostomy since 4/24/2014
jmdebb
Posts: 3
Joined: 2015-06-25 09:02:22

Re: cant handle ileostomy

Post by jmdebb »

i have that wafer.. i'm wondering if i need to change brands or something.. i had to change the bag three times the other day, and then this morning i woke up to a leak again.
Button
Posts: 3616
Joined: 2017-10-10 22:14:15

Re: cant handle ileostomy

Post by Button »

jmdebb:
I am sorry that you are running into such a rough patch with your ileostomy.

It may be a small comfort for you to know that loop ileostomies are oft the most difficult ostomies to manage. Their placement higher in the digestive tract makes output from a loop ileostomy more liquid in consistency and of higher concentration of corrosive digestive enzymes - both factors contributing to the occurrence of dreaded leaks.

Are you using "baby wipes" to clean the skin around your stoma? Word to the wise . . . do NOT use baby wipes. "Baby wipes" contain aloe and moisturizers that negatively impact wafer/flange adhesion. Also, avoid using any bath/shower soap that contains aloe and/or added moisturizers. A basic glycerin bar soap is good to use. Ivory® or Neurtrogena® or Zest® are brand soaps that will not lower adhesion.

The moldable wafers that Sandy suggested may be difficult to contour to a loop ileostomy, as you have two stomas in close approximation (the working/functional stoma and the non-working/mucus stoma). But it is worth a try.

Use of an adaptive barrier ring (Ekin Seal by ConvaTec, Adapt Ring by Hollister, or Brava Barrier Ring by Coloplast) are a first-line defense against rings. They are likened to a gasket to a leaky faucet.

Is there a dip, fold, or crevice in the skin where you are noticing the leak to be consistent? Does a dip or fold in the skin occur when you bend or sit? If yes, you can cut a portion of a barrier ring and fashion it to fill the dip or crevice. The goal to create a level skin surface.

There are skin adhesives that act to increase the adhesion of a wafer/flange. Torbot Skin Adhesive is one such product.

Are you using ostomy paste? Work to the wise . . . ostomy paste is NOT an adhesive. Ostomy paste does not work like Elmer's glue. Routine use of ostomy paste applied to a wafer/flange will actually undermine adhesion. Ostomy paste's sole purpose is to fill in a dip or crevice in the skin to make a level surface - like grout on a kitchen counter that creates a level surface between two ceramic tiles.

Use of an 1" ostomy support belt can help by holding the ostomy wafer/pouch snug and close to the body. An ostomy support belt attaches to a small clasp on one side of the wafer/flange, passes around the back, attaching to the other side of the wafer/flange.

CyMed is a lesser known manufacturer of ostomy supplies. The CyMed wafer can often succeed when all others have failed. The composition of CyMed's wafer is termed "micro-skin." It is super-thin, flexible and exactly conforms/contours to the skin's varied topography with superior adhesive qualities. It looks and feels like Saran® kitchen wrap. www.cymedostomy.com

The fear of leaks can be emotionally derailing. Hold faith in the knowledge that THERE IS an ostomy system and/or accessory that will make leaks a rare occurrence. It may require calling for product samples and trail and error. Try not to be discouraged. There is a lot of collective wisdom on this forum and lessons learned that can be shared with you.

Feel free to post this question (and any others) on the General Section. The General Section of this forum receives a wider viewer/reading audience than Temporary/Reversal Section. You will get more replies.

Hoping for you better days,
- Karen -
Intestine perforation, sepsis, ileostomy, 2012
Addison’s disease + endocrine failure
Palliative Care
Zeno
Posts: 6
Joined: 2015-07-03 22:17:46

Re: cant handle ileostomy

Post by Zeno »

I cannot remember the name perhaps someone can help, but there was a spray on barrier I used a few times that would for sure cut down on leaks. The biggest problem was removing the wafer later on..
Two things. One, make sure you spend at least the full minute warming the wafer wax after application with your hands. I had big problems with leaks in the beginning as well and it took some trial and error, but the heat moulding step (at least with holister stuff) is Very important to prevent leaks.
Second, I was like you except I was told mine may be permanent and had no light to look forward too. Depression and not wanting to leave the house are both things I struggled with. Don't even get me started with intimacy issues with my wife. I am sure it is little consolation now, but I promise that it does get better with time. It will get down to a routine, you'll learn what not to eat through trial and error, and long expeditions from the house will be hard at first, but over time it will be just another day.
Last advice I can give is, make yourself an emergency kit for the road (pouch,wafer,spare underwear,scissors,etc,and don't forget the waste bag) and carry it religiously any time you go out. I actually had several, one in each car, and I was saved at least once while out n about with my kit.
Good luck, and know it will get easier
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susan f
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Re: cant handle ileostomy

Post by susan f »

Hi Jean

It sounds like it would help you to visit the WOCN. This is different from the visiting nurses that are helping your change, WOCN specialize in Wounds, Ostomies and continence care. You may be leaking for many different reasons and they are the ones who have training and experience to help. You probably had one visit you and mark the site for your ostomy in the hospital, and hopefully train you on how to change your appliance before you left. I would suggest you call your surgeon and find out who you can see, or you can look here: http://www.wocn.org/?page=nurse_referral
UC Diagnosis 1981
J-Pouch 1988-2002
Permanent ileostomy 2002-now
Crohn's Disease Diagnosis - 2015
To Good Health
Posts: 1972
Joined: 2009-12-22 07:36:28

Re: cant handle ileostomy

Post by To Good Health »

Hello Jean
You have rec'd some good suggestions from some of our wisest people. I can't add to it but I want to welcome you to the group. It's quite natural that you are feeling depressed - being diagnosed with cancer, having surgery, awaiting chemo and, on top of all that, having leaks. It will get better. It is quite a learning process. Try to get out of the house/apartment a bit. All the best,
To Good Health
Chemo/rad Mar 07
APR/ileo May 07
Perm colostomy 2009
Perforated colon Nov 2013
No Way
Posts: 14
Joined: 2015-07-23 18:23:09

Re: cant handle ileostomy

Post by No Way »

Hi Jean,
I wanted to chime in to say that I also had a difficult time in the beginning. I had to try different products until I found the solution. Part of the problem was that the size of the stoma changed over time and then I also had to learn what foods to eat/avoid in order to control the output. Don't need to change as often now and my confidence has gradually improved. Even went away on a long weekend, which was sorely needed. Surgery was 3 months ago for stage 3 rectal cancer. It's not an easy process, but you can get through it. I'm cheering you on.

Petra
Lorraine1956
Posts: 2
Joined: 2016-03-30 19:15:30

Re: cant handle ileostomy

Post by Lorraine1956 »

Try leaving some air in the bag. If your bag has a charcoal filter, cover it with the paper button that come with your pouches. My husband has an ileostomy, always leaking. Now it is good. Also try adhesive sheets. He cuts them to cover his bellybutton, creating a smooth surface. Lorraine1956
lisa1999
Posts: 10
Joined: 2016-07-01 11:02:07

Re: cant handle ileostomy

Post by lisa1999 »

Jean
Hi I also had alot of trouble at the beginning try calling the major company's that products are making appliances I believe there are 3 and Lib. Med.. the place that has all company types of products they will set you up with a teck. that works through your complaints and tell them about the trouble your having. by the end of my phone calls I had two companies that were sending me different appliances to try. Im a inny so its much harder for me and after I went to see the ostomy nurse, have your doc. or surgeon to order it will be up to the visiting nurses to find one for you, but keep reminding them. by the end of that visit found out that the appliance I was using was the temporary that they send e very one home on and it dident help me at all had major leaks but they got me more samples to try that the thought would be helpful and stock of other products they get from their reps. to give and use. I hope this helps. it was all a eye opener to me of all the different people giving me support and they still call to check on me to make sure the appliance sent is working for me. I am doing great with the one I have now , it was suggested by the ostomy nurse from were I had my surgery. I hope this will help you as much as it did me.
angel0467
Posts: 1
Joined: 2017-03-02 23:20:55

Re: cant handle ileostomy

Post by angel0467 »

I had my ileostomy done on February 9, 2017. I fully understand your frustration. I have a one piece bag, and use barrier rings with them. It is a trial and error. I know they sent me home with quite a few bags that worked fine in the hospital , but once i got home and started moving around, they were a mess. I went through 4 bags in a day before i went to the ER in tears. I saw my ostomy nurse the next day and she gave me a concave bag that has a belt and bam my bags are lasting 4 days. My problem is that my stoma has gone from 40 cm to 25 cm in just 21 days. My skin is a mess. I am doing the powder and the no sting barrier spray (shackling) things are slowly getting better. I can't sweep the powder into a fine layer like my ostomy nurse, but I came up with an idea. I now use blush brushes ( yes , makeup brushes). I apply the powder and use the brush to move it into the areas that i need it and to remove it where I do not. I wash the brush and it is clean and dry by my next changing. Also I have bad issues with any adhesive on my skin. My home nursing company got me some sting free adhesive remover, it works wonders.
iluvhgtv
Posts: 1
Joined: 2017-03-13 23:57:16

Re: cant handle ileostomy

Post by iluvhgtv »

My bag used to leak a lot too. I had to start using a convex bag and belt. My stoma was almost flush with my abdomen so it constantly leaked because it was not long enough to direct the liquid poop into the bag. The bag and belt are made by Hollister. I also used a moldable Coloplast skin barrier ring and that helped so much. I stopped using paste after discovering the ring. We also used the adhesive remover pads to more gently release the adhesive when changing bags. God bless you, friend! It is so frustrating! Hang in there and you will be done with all that soon! Mandy
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