Ileostomy leaks and skin care

Posted by liegeman @liegeman, Nov 29, 2020

I have had an ileostomy since August 20. I continue to have leaks, sometimes as often as twice a day. I have used Hollister (many different types of wafers, a barrier ring, film barrier swabs, stoma powder, and stoma paste). I have also tried Coloplast. The more leaks, the more inflamed the skin becomes, and it turns into a vicious circle. I would appreciate any advice from those who have experienced leaks and ultimately found a solution.

Hi @liegeman and welcome. I moved your message to the Ostomy Group here: https://connect.mayoclinic.org/group/ostomy/

In this group, you'll meet others who have experience with an ileostomy, like @engelee @candywocrn @iamthekat @msgtrebholtz and others.

While we wait for others to join in and answer your questions about leaks and skin care, you may also be interested in reviewing these related discussions:
– Urostomy: How do you care for skin under the wafer? https://connect.mayoclinic.org/discussion/skin-health-around-urostomy/
– Ostomy: Adapting to life after colostomy, ileostomy or urostomy https://connect.mayoclinic.org/discussion/ostomy-adapting-to-life-after-colostomy-ileostomy-or-urostomy/

May I ask, what led to your needing an ileostomy in August?

REPLY

@leigeman, don’t lose heart. For several months your abdomen is still adjusting to the surgery. When all the swelling is gone and your weight stabilizes it will be easier to stop the leaks. My husband has a urostomy and we had the same lament for six months. Some weeks it would last three or four days. Other weeks we would have constant leaks. What finally worked for him was a bag that was a deep convex wafer (Coloplast) because the tissue around the stoma was almost even with the opening which meant the wafer needed to reach downward to make a good seal. It also seemed that the more seals and paste, etc . that we used, the worse his skin became. Remember, if the seal around the stoma is not good, then the outer edge seals are just trapping the effluent under the wafer and against the skin. Good luck and keep us posted on your progress.

REPLY

Thank you. I found your advice from experience very helpful. The information is for my husband, but the task of figuring out what brand and supplies work is mostly mine. I had been wondering if we need a deep and not light convex. We now use a light. Do you use a ring around the stoma before applying the wafer? Why did you choose Coloplast?

REPLY
@liegeman

Thank you. I found your advice from experience very helpful. The information is for my husband, but the task of figuring out what brand and supplies work is mostly mine. I had been wondering if we need a deep and not light convex. We now use a light. Do you use a ring around the stoma before applying the wafer? Why did you choose Coloplast?

Jump to this post

I’m glad if my reply helped you. I remember how confused we were and how desperate to find some solutions. We tried everything including the ring. Bear in mind that having a urostomy vs an ileostomy will maybe need different solutions. With a urostomy the effluent is pure liquid and leaks very easily. On the upside, it is easier to clean up. Our ostomy nurse, Kathy, at Mayo Jax changed his to the deep convex without the ring, etc. The ring seemed to only exacerbate things since that made the wafer go even deeper to achieve a seal against the skin.

Just keep trying things and getting free samples when you can. There are so many products out there and sometimes they are not clearly marked as to which kind of ostomy they are meant for. We chose coloplast because they seemed the most helpful if I called them and we liked their products, particularly the night time bag. Does your husband use a night bag?

I forgot to mention that our ostomy nurse told us to use over the counter Flonase on the cleaned and dry skin as an anti-inflamatory. It cleared up the red, irritated skin immediately. Dry with a hair dryer before and after applying it and it helps the wafer to stick also.

Let me hear from you. We got good news today. My husband had his 12-month exams and there was no evidence of cancer anywhere. Yipppeeee!

REPLY

I had so many leaks for the first couple of months, frustrating isn't a strong enough word. My stoma changed gradually from being round and sticking out about an inch from my belly to becoming more oval and flat, like it was sitting in a divot. I tried many products but finally settled on a moldable convex wafer and stoma paste from Convatec. I use the paste instead of rings because it's easier for me to get the paste to fill the gaps around my stoma caused by the way my belly folds.

It took a visit with an ostomy nurse recommended by my surgeon and samples from Hollister, Coloplast and Convatec. I learned very quickly that all the supply companies are more than willing to send samples, have you speak to their ostomy nurses and they usually follow up to see how things are going. It was a bit of trial and error but I found what worked. For instance the Hollister wafer was ok but the Convatec convex seemed to adhere and work with the stoma paste better. I also found I really liked the Coloplast pouch design but their wafer was an issue for me (my stoma is very close to my belly button and their design doesn't work well with my folds. Again it was a lot of trial and error but once I settled on the convex wafer and paste I have had zero leaks. The use of powder then the application of the paste has really kept skin irritation to a minimum.

Good luck!

REPLY

We are certainly in the trial and error period. The description of your stoma, and where it is now, is a duplicate of my husband's. We will certainly look into Convatec and the use of their products including the paste. We really appreciate the time you took to help us out. You know the frustration.

REPLY
@liegeman

We are certainly in the trial and error period. The description of your stoma, and where it is now, is a duplicate of my husband's. We will certainly look into Convatec and the use of their products including the paste. We really appreciate the time you took to help us out. You know the frustration.

Jump to this post

@liegeman, how are you and your husband doing now?

REPLY
@jfsbndr

I had so many leaks for the first couple of months, frustrating isn't a strong enough word. My stoma changed gradually from being round and sticking out about an inch from my belly to becoming more oval and flat, like it was sitting in a divot. I tried many products but finally settled on a moldable convex wafer and stoma paste from Convatec. I use the paste instead of rings because it's easier for me to get the paste to fill the gaps around my stoma caused by the way my belly folds.

It took a visit with an ostomy nurse recommended by my surgeon and samples from Hollister, Coloplast and Convatec. I learned very quickly that all the supply companies are more than willing to send samples, have you speak to their ostomy nurses and they usually follow up to see how things are going. It was a bit of trial and error but I found what worked. For instance the Hollister wafer was ok but the Convatec convex seemed to adhere and work with the stoma paste better. I also found I really liked the Coloplast pouch design but their wafer was an issue for me (my stoma is very close to my belly button and their design doesn't work well with my folds. Again it was a lot of trial and error but once I settled on the convex wafer and paste I have had zero leaks. The use of powder then the application of the paste has really kept skin irritation to a minimum.

Good luck!

Jump to this post

Hi, I was reading this and you said the Coloplast wafer didn't work because your stoma is too close to your belly button.

I use Coloplast Xpro because it sticks better for me. I too have the problem with being too close to the belly button. The Xpro is oval so I started wearing it with the wide part vertically for more room. Its helped quite a bit.

I also switch off between Xpro and Assura wafers which really has helped with how long products last on me due to different types of adhesive. Also, these two wafers use the same bag so it helps on cost.

One other thing. I read that many people say that they use a ring or paste to varying degrees of success. I have found that using both has been the perfect set up for me.

I put the ring on (Brava is my choice) then a thin layer of paste (Convatec in the silver tube). I apply to skin then use my hands on it for pressure and heat. I'll hold for several minutes.

Using all this has taken me from 1 or 2 days on a wafer to 10 to 12 days. It doesn't seem like such a chore when you only have to change 3 times a month! And I'm not easy on stuff either. I weight lift and run about 40 miles a week.

If you have any questions about products or my procedures please ask. I would love to help everyone get to where I am or better.

REPLY

I was just that I could have a one and they are not sure it will help . I have stage 4 colon cancer snd metsstzrd into the liver by the time they found it :Inwasndoing chemo but my type is BRAF and there is only one type that works on that . Pills for chemo snd iv along with it every week the iv treatment .!well I keep getting diverticulitis and this time it is rally bad ! They just told me that I have 3 options
2- do the Y 90 bead treatment but not a lot of success
2- get a illosyomy. To try and take the pain away in the stomach and then they can treat me with this full fire Fox something and avast in chemo that will help on the liver .!Right noe my chemo really does not work on the liver :
3- go into hospice
Please tell me if anyone else has had this

REPLY

I know I have provably made no sense with what I posed because spelling is all wrong
Sorry

REPLY

Hi my wife changed mine for me . I use to have leaks until the stoma swelling went down . If it leaks now it is because she is making the wafer hole too big ! Then we have to fill in with the putty , I know what you mean about skin irritation , a little powder and spread it out , not a lot because that does not let the wafer stick real good. Are you waiting or giving it enough time for everything to dry before you put the wafer on ?

REPLY

Not sure the ileostomy will take the pain away. I have sporadic pain from the surgery for almost 6 years now. However, I have been told this is not a common occurrence.

REPLY
Please sign in or register to post a reply.