I have had my redone ileostomy since Feb 2018. I have had pretty steady use and not a great deal of issues with it until 2 weeks ago. I have started to have blowouts between the hours of 0400 and 0800 and in the last two weeks I have had 3. I was lucky to be wearing two layers of clothing and the waste was kept inside and did not spoil the bed but I have never had this issue before. I tried to go over the last two weeks and think about things I may have done differently than before but I cannot pinpoint anything. I use a two-piece Hollister system that I change out every 4 days. It has a Velcro-type opening to drain it. The blowouts have been along the skin barrier and it appears that the wax seal has been failing. I clean very well, use nothing but water and skin barrier wipe on the surrounding areas. However, my skin is very broken out, red and sore and it has been getting odd fluid-filled blisters that break in the shower and leave a hole in the skin. I am enclosing a photo of the area. I have been using stoma powder on it to keep it dry. I love this site as everyone is so nice and we care about each other. I recently moved into my own home on the 15th of May. I noticed my water has a slightly salty taste in the shower and I am wondering if perhaps there is something in the water that is causing this odd reaction. I hope some of you can chime in and give advice. I have called my stoma nurse and left him a detailed message and forwarded him a photo as well. I am just waiting for his call back. Thank you, everyone! I look forward to hearing from you. Freedancer ;
Have you tried changing your barrier within 2 or 3 days.. instead of 4 days.. before the seal totally breaks down?
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Hi Pamela
So sorry you're having this issue.
My water here in CA is pretty nasty. Purchased a Zero Water filtering device for drinking water.
Just bought a filter for my shower. Cost around $32. Installing it this weekend. Will test the water for purity before and after the filter is set.
As for the Zero Water test for drinking water, contaminants were reduced to 0.012.
Hope this info helps y'all.
Learn what you need to know to help you recover fast, and avoid some common food issues.
Hi Pamela, if you look at my photos, you will see what I use to extend a couple of days. The big sticky pad is an "Eakin Seal". This is about 4 inches across and goes directly on your skin under the wafer. The waxy type material is the same as the sticky stuff on the wafer. It can go right on raw or weepy skin and heals any damage in days. This pad is similar to healing pads used for diabetic ulcerations. Using the Eakin Seal will extend the life of each baggie.
The Eakin Seal, the Absorbagel (Pearls), and the 3M tape will change your life, guaranteed!
One factor is the hot weather. You will notice that the hot weather makes the sticky stuff much softer, especially in bed overnight. Another suggestion is to use Micropore Surgical Tape, only use the one made by 3M, you can get it cheap on Amazon. I use the 2-inch roll and put a strip of tape on all four sides of the wafer. This tape is a real lifesaver if the sticky pad comes off your skin. You will have time to act before it separates from your skin. I always put four strips on when I change. I got the flesh-colored tape and I really depend on it to allow me some time to change before it leaks. One more thing that will help you prevent leaks in "Absorbagel" or "Pearls" in the USA. These are little packets of material that absorb huge amounts of liquid and turn the liquid in your bag into a thick gel which will not flow out of your bag. I haven't had a leak since I began using the gel packs and the tape. Just in case, I put a small strip of tape on the Velcro opening, this has failed me in the past.
I hope this has helped Pamela. ZEamon / akaMagoo.
Hi Pamela,
It's sad to have this situation. Bob's having skin issues too. Poor guy. I really feel for anyone that is having these skin issues.
I don't have an ileostomy, just a colostomy. I think the above answers are good things to do and check. The only thought that I have is 1) Is the skin dry and the same procedure as before? 2) If there is a wax ring involved, when the weather gets hot, so does the wax and it could become compromised. And try changing it sooner, as Married said, is worth trying.
I know someone will be able to help. Best of luck to you...mountain.
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
Hello Pamela.
Thanks for sharing your problems and although I don't have any experience of this sort of thing, I felt and urge to say that I am thinking of you and hoping things will get better soon.
Best wishes
Bill
It has been very hot this year in Montana. I have air conditioning but I get pretty hot outside when I mow and trim the lawn.
Hi Free Dancer,
Have you opened a new box of barriers in the past week? It could be as simple as a defective batch. They may have changed the raw ingredients used to make the seal and your skin is reacting to it. If you have not changed your diet or routine, check out the products. Never know! Open a new box with a different lot # if you have one.
Puppyluv
Freedancer:
Love your moniker. I used Hollister for about the first year of my post-ileostomy life. I liked the little bags, since I hated the sloshing when I would be super active, and the ring construction was better than others. However, after quite a lot of research (I am in the field) and attending the WOCN conference looking at dozens of manufacturers, I realized that other folks sometimes had, for no reason, started to react to whichever adhesive they were using, despite the Research and Dev in Durable Medical Equipment. In short, Hollister was the biggest problem, partly because it has the biggest market share of hospitals that give Hollister upon discharge from the hospital, so the sample size was bigger to start with. Although I still use that cute bag for wear under sleeker clothes to prevent bulge, I switched to another brand, and eventually to a convex barrier. I did not know that stomas can change over time and although I started out happy enough with the Hollister two-piece, smallest bag option, flat/flush to the skin, I wouldn't count on that for 3 days of wear ever again.
The picture is worth a thousand words. I would wear a towel for a few days, stay close to the house/compost/roll of TP, and try to air the entire zone out. I hope the misery ends soon; for me, a blowout usually means I ate something or too much, but also somehow that I got dehydrated. Even though it will increase the output somewhat, with my stoma, if I get dry due to insensible fluid losses (heat/hot tub/hot springs/low electrolytes/intense exercise or bending), my output thickens and under pressure on extrusion, it comes out with such force that it ends up hitting the muco-cutaneous junction (where the stoma meets the skin). For me, this is critical to prevent slow blows, especially at night.
Hope some of that helps. Take good care. Best, Ninja in California
For more tips and resources, check out our Ostomy Learning Center.
Thank you for your great comments. I still have many of the samples given to me when I left the hospital. Perhaps I will give them a try.
That was the first thing I wondered about. I was at the last of the seals and have just opened a new box. Changing every 4 days has worked really well for me as well.
Hi Freedancer
Peristomal skin problems are pretty common... those who have them know that. Others should take note too, as we're all pretty much guilty of not paying attention to things that aren't affecting us at this very moment... but the majority of ostomates will have to deal with these issues at some time. So being proactive can pay off. Now, having said that... I realize most will just ignore it and move on to the next post. Then when they pull their barrier one day and see a problem, they'll wish they had taken the time to at least better understand the common conditions. Ok, lecture over. Well... almost.
Every ostomate should own a copy of the book entitled "Abdominal Stomas and Their Skin Problems" by Lyon and Smith. It's a hardbound color picture book that shows just about every type of peristomal skin condition. You can find the first version used for a couple bucks if you search online... I think AbeBooks has a handful for cheap. The second edition is over a hundred bucks and doesn't really add much to the conversation... so if you find it cheap... get it... otherwise, the first edition is fine. You can use the book at the very least to eliminate what you don't have. Once you narrow it down, it gets easier. Some of the pics are tough to look at on a full stomach... so look through it BEFORE you eat.
From your single pic and your description of what's going on... if I had to bet Mtnman's paycheck... I'd say you're suffering from irritant dermatitis or having an allergic reaction. Since you're having blowouts, I'd fix that first, which means you will need to change your barrier before it leaks. As said above, a skin protectant would be of great benefit to you... whether you use a spray or wipe-on film or a thin membrane. Your skin won't heal if it keeps coming into contact with leakage. Of course, changing your barrier more frequently means risking trauma to the skin, like I suffer from... but if you catch it quickly and get things sorted in a couple barrier changes... you'll be fine. If you eliminate the leaks and still have the problem, then an allergy seems to present as the obvious solution.
I don't know about your water, but the easiest way to eliminate that variable is to go buy a gallon of distilled water and use it for your final rinse around your stoma. It's cheap and readily available... even in CA! You aren't sleeping on your back, are you? The other thing to note is when you pull your barrier next time... look very closely at the side that touches your skin and note which areas are wet or show indications of having leakage. If you have a phone with a camera or a cheap regular digital camera... take some pics of that side of the barrier (before anything on it dries) and also get some clear pics of your peristomal skin. A pic is worth a whole bunch of words... and I'm sure your ostomy nurse or Derm Doc would agree.
So I'd try to get the leakage under control. That will at least take that part of the puzzle out of the equation... I'd suggest you change your barrier every 2nd or 3rd day, rather than try to go for 4 days. And don't sleep on your back... even for a short time.
Whoa... I took a break to eat lunch and came back to find you can download the whole 2nd edition of the "Abdominal Stomas and Their Skin Disorders" for free from the following, as I just did. Make sure you have virus protection on your machine... as I'm not familiar with the site, so can't vouch for it... but I just downloaded it and have no issues... meaning it looks like a clean download
http://docshare02.docshare.tips/files/15235/152359761.pdf
So now there's no excuse for anyone not to have it... unless you're squeamish!!
;0)
Bob
I am confused...why can I not sleep on my back?? I've been sleeping on my back since my first and second surgery, plus I have a CPAP that makes side sleeping uncomfortable. I have only had this issue for the last two and a half weeks. I have a torn right rotator cuff after falling on the ice last December. I'm getting it repaired in late September/early October. That also makes side sleeping difficult. I added a photo to my post and will order the book. Thanks for the great information! Take care.
Hi FreeDancer
Think Bob is suggesting you don't sleep on your back because when your feces drains into your pouch, it'll collect around your stoma and sit there, causing leaks. While on your side, your feces can move away from your stoma area so your stoma isn't affected much. Can you "see" how this works?
Also, I'd determine how long most of your food reaches your stoma. Then, determine how long before bedtime to not eat anything. I used to do this before dating as a teenager/young adult or go swimming/play tennis. You might determine which type of foods move through your bowel slower and which ones move faster. nbsp
All this info can make a huge difference in your life. Both my rotator cuffs are torn. Surgery isn't an option for me. BUT, it is for you! Rejoice in that nbsp
"Stuff" in our lives doesn't always work the way we want. Case in point....your colon. Really hope this helps. Take good care of yourself.
Sharon
Hi Sharon,
Sorry, I didn't explain that better, but Sharon nailed it. If your output is anything but solid, you don't want it sitting around your stoma for long. I've found that my output tends to break down my ring.......I put some in a glass and put a piece of the ring in it to see what happens over time. It doesn't dissolve it so much, but makes it kind of peanut buttery........and then adhesion gets lost. As Sharon also said.......if you stop eating well before you go to bed, it shouldn't be an issue sleeping on your back. Many, such as myself, have an almost constant liquidy output......so it's rare I sleep on my back for fear of leakage.
If you've got a decent phone, you can download that book to your phone rather than order it. I was really surprised it was online.......but I downloaded it and will print it out in color at work. It really is an amazing book. I'm surprised ostomy nurses don't tell people about it. Maybe it'll put them out of business!!
Let us know how you're making out.
Regards,
Bob
My sincere thanks to Bob for finding this link to the book on this subject and sharing it with us all. I have downloaded it and have started to read it with enthusiasm this morning.
I always have an extra respect and admiration for those people who work on these sorts of publications and offer their work free of charge to the general public. This is the sort of kindness and altruism that deserves a rhyme for my next book. So, I must thank Bob for that inspiration as well.
Best wishes
Bill
Bob wrote :
Whoa..........I took a break to eat lunch and came back to find you can download the whole 2nd edition of the "Abdominal Stomas and Their Skin Disorders" for free from the following, as I just did. Make sure you have virus protection on your machine........as I'm not familiar with the site, so can't vouch for it......but I just downloaded it and have no issues.......meaning it looks like a clean download;
http://docshare02.docshare.tips/files/15235/152359761.pdf
So now there's no excuse for anyone not to have it.......unless your squimish!!
Thanks Bob: Your post and my subsequent reading of their book, provided me with the inspiration to write a rhyme acknowledging the altruism involved in producing such a useful and authoritative document:
Best wishes
Bill
EXAMPLES OF ALTRUISM 1. (GIFTING)
It isn’t very hard to tell
when altruism is done well,
for altruists will have a need
that never will be based on greed.
It matters not, if rich or poor,
the altruist, you can be sure
will find a way to help someone
before their working day is done.
As I began to look around,
the first example that I found
was where the authors of a book
invited me to take a look.
Yet there was no expectation
of monet’ry remuneration,
for the book was given free
to the likes of you and me.
What made it even more stand out
was what that book was all about,
with contributors from everywhere
showing they would care and share.
This book was a second edition,
containing pictures and rendition
by doctors and their co-recorders
of stomas and their skin disorders.
Not asking for a single dime,
many medics gave their time,
and freely contributed to
this book to help the likes of you.
And this I can appreciate,
as something to substantiate
that altruism still exists
among medical specialists.
Be Withers 2021
Hi Bill... thanks! To be honest, I have no idea why it's available as a free download. The first edition isn't available, and the second edition is currently selling for $150 to $200 online. So who knows why it's available for free... but it is. And I encourage everyone to download it now, before they change their mind and stop offering it. Even if you don't have a color printer... download it now... and print it out when you get the opportunity. It's a pretty fascinating book, in a morbid sort of way. But invaluable when you're having issues.
Thanks again, Bill!!
Regards,
Bob
Damn Bob!! I downloaded the book... scared the shite out of me!!! Lol. Once again, I see how lucky I am to have a relatively normal stoma. It looks very interesting, gonna have a read later when my brain can take it!! All the best, Eamon.
Hi Eamon,
Yeah, you ain't shittin'! When I saw how bad things can be....I'm not complaining about my irritated skin. But it is a bit frightening to know things can go really, really bad with an ostomy. At the very least, it might make people ask for help a bit earlier rather than later, knowing it can get downright nasty if you let things progress too far. Glad you're liking the book. I plan to print it out tomorrow at work on a big laser printer.
Regards,
Bob