Insights/Ideas, please, after 1st month w ileostomy bag

[RobBalys]

Good morning- I've just registered for this group on behalf of my mother. We are frustrated and nearly at wit's end. Her surgery was one month ago tomorrow. Since then, we have needed home nurse visits just about every other day. I was with her for the first two weeks post-surgery. But I am now 3 hours away.

After 4 weeks and 3 or 4 different bag types, we are still unable to get a good seal for 3-5 days. The bag is typically breaching (at the outer boundary, on the bottom or side) within 36 hours, regardless of bag type and regardless of whether my mom or her nurse or I am the one removing/replacing it. My two questions for the experienced patients here are:
1-Is it normal that, after one month, we haven't mastered a bag that holds for 3-5 days?
2-Is there some "extra strength" seal or process that has been found to be successful for this?

We are trying to turn the corner here--so that the bag removal/replacement process is predictable, consistent and successful--and we feel like we should be there by now. Any suggestions or resources would be truly appreciated. -Rob

[ot dave]

Hi Rob,
Sorry to hear that your mother is struggling with finding an appliance that works for her. In order to get some tips/suggestions, it will be helpful if you could give us more detailed information about the application process that you are using, and what you have tried in the past so you don't get tips that you've already tried.
What type of appliances have you used?
Have you tried any of the seals?
Are you using paste/powder?
Are you applying the flange while standing/sitting/supine(laying down)?
Have you tried any extra adhesives?
How are you cleaning the skin around the stoma between changes?
Are there scars or dips or divots in the skin that make adhesion more difficult?
etc., etc...
Is the nurse that is coming an ostomy/WOC nurse? Many nurses are good, but most don't get a lot of extra instruction/education in ostomy care past the acute care phase until they get on the job experience. I work in rehab occasionally as an occupational therapist, and any time we get a patient with an ostomy, new or experienced, the nurses come and get me to "pick" my brain to see if I am able to help out with issues that arise...again, in an acute hospitalization situation, so nurses that aren't WOC nurses lack opportunities and experiences with caring for ostomies.

There is a lot of experience and good folks here, so you will get a lot of information. Help us fill in the blanks and the tips should start rolling in...

David

[RobBalys]

Thank you so much for the reply, David. The surgeon asked for mom to be readmitted today, so she is on her way back to the hospital now. That is the best place for her to be to have availability to the care she needs, but also to eliminate and/or find the so-called "silver bullet."

I'll answer your Qs here after the asterisks the best I can to keep this thread up-to-date:
-What type of appliances have you used? *First Hollister then Convatc flat then Convatec concave
-Have you tried any of the seals? *The seals around the stoma, you mean (?)--yes. Slims version of a brand I can't recall. Not at first, but now always.
-Are you using paste/powder? *Yes and yes. Powder every time. Paste sometimes (mostly as attempted repair work).
-Are you applying the flange while standing/sitting/supine(laying down)? *Supine when done for mom; sitting when mom does it.
-Have you tried any extra adhesives? *A paste we were given at the hospital. And two kinds of OTC medical tape.
-How are you cleaning the skin around the stoma between changes? *We sure are. A rash has been a steady problem to varying degrees.
-Are there scars or dips or divots in the skin that make adhesion more difficult? *I don't think so--surely not when the bag is being replaced. But perhaps in certain postures.

My sense (I am not a doctor, of course!) is that the stoma itself needs readdressing/modifying, or that mom's skin is more oily than the average bear (but that's not generally been an issue or observation before). Now that she is a month stronger physically and emotionally, perhaps some specific procedural step(s) we've been overlooking will become more apparent (perhaps no silver bullet to add, but less "telephone game" along the way). The at-home nurses we've seen since surgery have, to your point, not been WOC specialists.

I thank you sincerely, David, and appreciate you paying it forward more than you know... -Rob

[Mysticobra]

I have one suggestion.
Less is best.
I know you have to adreess the skin rash. But use the least amount of powder. Shake or tap the excess off.
As for rings and paste. Minimize what is used. I find stool likes to creep under it and that it comprimizes my seal.
I use a two peice convetec moldable.
When you take the wafer off examine it as look to see where it's coming from. It does help.
And it does get frustrating trying to figure it out. Even after five years myself.
I do one thing slightly different and it leaks.
Nature of the beast.
I hope she gets it figured out and I'm sure she will.
Richard.

[ot dave]

Ok Rob,
You've given us some good places to start. First, I agree with Richard, less is usually best.

If the stoma is above the surface of the skin, then a regular flange should be just fine. If the stoma is flush with, or below the skin, then a convex flange is probably your best bet.

The most popular seals for around the stoma are the Eakin seals or the Adapt Barrier rings. You can use the whole ring, or just parts of it if you can identify a singular spot that is giving you issues. The seals act like an o-ring in a garden hose and help to keep output from getting under the flange. I've had good success with those over the years. I currently have a deep divot on my 9:00 that I use 1/3 of a seal to fill in with when changing.

If I were guessing, I would say that the powder and paste is most likely giving you the most trouble. In fact, I would avoid using it unless absolutely necessary. There are indications for its use, but mostly, they cause trouble/leaks. If you don't get the powder completely covered with a skin prep, then it is the equivalent to using duct tape to hold your towel down on the beach...it's just not going to work. I only use powder when I have an infected pore that gets deep and needs something to fill it in to make it flush with the skin. Even then, I make sure I spray multiple layers of skin prep over the powder. Skin prep wipes have their uses as well, but create more issues when covering powdered areas. Skin prep sprays like Cavilon, in my opinion are superior to any skin prep wipes.
Paste is a misnomer...it has no adhesive properties at all. It should only be used to fill in dips and divots that can be completely covered on all sides by the flange, otherwise they create leaks. There are a few folks who find the "paste" beneficial, but I think you will find most folks avoid it like the plague. I haven't used paste on my stoma since 2009...which is when I got my ostomy!

I always apply my pouch standing in front of the mirror to allow my natural anatomy to be in place for placement of the flange. Supine placement can work too, but for me, standing is most effective. I wouldn't apply the flange sitting down, I think that would create to many creases/wrinkles in the skin to make an effective application.

Hollister makes a spray that another poster here says is very effective for him. Here's a link: https://www.shopostomysupplies.com/p-ho ... spray.html
Again, avoid the paste as much as possible.

Clean dry skin is the best platform when applying new flanges. Don't clean with any soaps that have oils or lotions. The oils and lotions interfere with good adhesion. I change my flange once a week on Wednesday evenings. When I do change, I will shower and wash around my stoma with ivory soap, then I wash around it again with Hibiclens (surgical scrub soap that you can get at a pharmacy) to kind of sterilize it and kill any possible bacterial culprits. I then go lay on my bed and watch some tv while the skin "breathes" a little before I apply the new flange. Now, I have a colostomy, and I have some control over it since I irrigate. With an ileostomy, she may not have that kind of time to allow an uncovered stoma, but she will eventually figure out when her stoma is more and less active.

I would start with eliminating everything under the flange, especially the powder and the paste. and only use those as a last resort. If the "naked" flange doesn't do the trick, I would then move to using a seal/barrier ring around the stoma. Also, I make sure that the hole in the flange is about 1/8" bigger than the stoma to allow a little skin to be seen. If the flange is sitting on, or touching the stoma, the continuous output of mucous onto the flange will also reduce adhesion and create leaks.

I know this is a lot of information. Hopefully something here will get you started down a more successful path.

David

[RobBalys]

David and Richard. Thank you so so much. I am forwarding your excellent feedback to mom for her review and consideration w the ostomy team. We are in hopes that when she goes back home (tmrw, we think), she'll be armed and ready with more clarifications and new information. To your health, now and always... -Rob

[Diane C]

Great info by David and Richard! I had a colostomy and have had an ileostomy since November 2018. I'm still struggling with leakage and have been an ostomate since 2002. Much trial and error. Want to emphasize what David wrote -- NO barrier or flange will stick if you use powder without using a skin preparation spray (or wipe) -- I also prefer the spray but don't use either much anymore.

I'm unsure if your mother can take OTC medication but with an ileostomy, there is no control and sometimes it just flows and flows. I take 2 Immodium gel caps or caplets (the liquid goes right through me) in the morning before breakfast and then again in the evening to slow down the output. The generic works almost as well. I find that at 4-5 AM, my output is very active but it depends on when your mother last had a meal. It's not super to eat before bed or there may be leakage.

I agree about the seals but I happen to prefer "Stomahesive Strips" -- it's just preference. They are made by Convatec. They are strips which I divide up and place under my flange or barrier BUT I've had much surgery and now my abdomen dips near my stoma where the leakage tends to run. If my abdomen were flat, I might use one of the rounded seals around the opening of the flange and leave it at that.

My abdominal skin is very sensitive and I do NOT use skin wafers or flanges with TAPE -- only tapeless barriers. And I find that those stay on better in MY case. Some folks heat these with a hairdryer before applying. I do use various tapes on top of the wafer or barrier or flange -- whatever you call it. Coloplast has "Brava" strips. Convatec has "Ease strips." Safe N Simple also has similar curved tape. These all have a material that's waterproof and are unlike the tapes you'd get at a pharmacy. It helps to warm them up with a hair dryer or between your hands before applying them to the flange to help to make it adhere to the skin.

With an ileostomy, I'm not a big fan of the 1-piece system but some prefer it. I use a 2-piece system. You may want to try the Coloplast SenSura Mio Convex Flip system. The flange or wafer is quite different and starshaped and curves as it is applied to the abdomen. Ask for a sample of this: https://www.coloplast.us/landing-pages/ ... -page-ppc/ It comes in a 1- or 2-piece system.

I'm unsure many ileostomates get more than 3-4 days of wear. I no longer do -- because of leakage and am experimenting. With a colostomy and irrigation, I could change my flange every week. So, don't be disappointed if the wear time is less. When leakage occurs, the output's acid can sting the skin which can become irritated -- and yes, then the powder WITH skin prep on top of it (it won't rub off all the powder) is helpful. If the skin is not raw or excoriated, try not using it.

NOT to complicate matters, but folks up here who scuba dive advised me about Active Life Sure Seal Rings which I just ordered. See the discussion about scuba diving below. Maybe we'll both have some luck with those. Hope the answer is yes!

Good luck and keep us posted! Wishing you and your mother well.

[RobBalys]

Great idea about using a hairdryer, Diane! Thank you so much. Mom's confidence and frame of mind are vastly improved after 36 hours under care of the hospital ostomy team. We've now moved our expectation from finding the silver bullet to continuous trial & error. I expect more success will result from this new frame of mind (I know I need not convince anyone here about the importance of the emotional angle in addition to the physical front).

To your health, Diane, now & always... -Rob

[Diane C]

Wishing you well, Rob -- and optimism, hope, persistence, and strength for you and your mother.