How do people get 6-7 days' wear time?

I had a temporary ileostomy and would get 5-6 days wear out of it. I only had it for about 7 weeks, but I noticed that the more I changed it, the worse off my skin was. The less I changed it, the better my skin was. I actually found it difficult to stay on my stomach so I taped it with athletic tape (which gave my surgeon a good laugh when she pulled up my shirt and saw it).

I hope you feel better soon and can get past this.

Hi NCOT! I want to get this out of the way first: I've been reading these boards for a while, and have so much empathy for you. You are experiencing feelings and emotions that can be very normal after such a huge life event. It's funny because I am at a stage in life where my friends are all getting married and having kids, so their "most memorable moments/life changing moments" are all happy times. For me, having gone through the loss of my colon and then jpouch, my "life changing moments" were really bittersweet. At times much more bitter than sweet and it's hard when everyone around you is doing so well and it feels at times that we're just hanging in there. I'm sending you huge hugs and support because I know how difficult things have been for you. If there is anything you ever need, please just let me know, and I'll do what I can to help :)

OK, now on to your question of wear time. I really believe there is a system out there for everyone, it just takes a LOT to find it. To start, we all hope that our surgeons create a stoma that is conducive to a healthy recovery and improved quality of life. It would be horrible to have a crappy stoma because then no matter what we would do on our end, nothing would work. When I had my loop ileo I tried hollister and that didn't work for me. The adhesive would not stick to my skin properly and it made me miserable. I figured out that companies like to give away free stuff, so I called ConvaTec and Coloplast and got my hands on everything I could. I ended up with Coloplast working, so went back to their products with this end ileo. I did get some free ConvaTec stuff however, and their moldable wafer looks pretty good!

Generally, I use the Coloplast 2 piece click system, with a convex wafer and Eakin seal. I am test driving the flex right now, both have the same wafer type. I do use adhesive remover when changing my wafer because my skin is VERY sensitive and any amount of pulling gives me pain. I'm hoping this decreases as time goes by.

When I start the process, I tuck an Eakin seal into my bra to warm it up, then I start with the adhesive remover. After I use the adhesive remover I use warm water and gauze (I could use paper towels but I have a TON of gauze at home) to thoroughly clean the entire right lower side of my abdomen. Then I thoroughly dry the area with a hairdryer or dry gauze. Once everything is dry I measure my stoma and cut my flange. Even at four months out I find my stoma plays tricks and changes sizes.

If I have a bit of irritation I apply a small amount of powder to the area, wiping off any excess. I apply the Eakin to the back of my wafer (you could apply it to your skin, this is just my preference) and smooth out the outer edges, blending it into the wafer. I pull some of the Eakin through the hole that I've cut to make a mini turtleneck. Then I put on my wafer, really pushing down on the Eakin and convex part and I take a toilet paper roll (the cardboard middle part) and use it to push the area around my stoma to get even pressure around the seal.

Then I attach my bag, put on a belt and lie down for about 20 minutes with my warm hands over the wafer. This helps everything stick together. I do wear the belt for a few hours after wards, especially if I'm moving around a lot because, for me, it really helps get that adhesive to stick well.

I could probably go 7 days like this, but change after 6. I shower daily, nice hot water and don't do anything to protect my wafer. I make sure that I really dry the whole thing before I get dressed.

When I first got this ileo I had a ring of sore red skin around my stoma. My stoma isn't retracted or flush, but I still changed to a convex wafer with Eakin and after a few changes it totally worked magic and everything has healed up.

Is there anyway you would consider posting a picture of your stoma and peristomal skin, and one with your setup on, and maybe if we saw the issue we could better help troubleshoot?

Post Edited (PoucherInTO) : 2/15/2014 8:54:30 AM (GMT-7)

I was changing religiously every four days but for some reason the last two weeks I have actually forgotten to do my change on day 4 and have ended up with 7 days wear, no itching, no redness. I have no idea what is different because I have changed and done nothing.....except with the house renos I have been very busy.....I thought when I removed the wafer after seven days I would have a complete mess. Nope. Nothing. I won't let that become a habit because I feel better when I track my change days.

NCOT are you still using one piece? Because one piece are indicated for less wear time... I know some people will go up to 2 or 3 days with a one piece but the manufacturers all say they're for 24 hours. I've never heard of someone wearing a one piece for 6-7 days. Two piece, maybe (I think the longest I ever went was 5, but typically 3-4).

I can't speak about the manufacturers saying that one pieces are good for 24 hours, I haven't seen this advertised on any websites, but I could see that that would be true for those who wear a one piece, close ended pouch, more for the colostomies than the ileostomies.

I do have a few friends with ileos who wear a one piece, but with an open pouch for draining and they seem to get about four days wear time. I think they like the lower profile of a one piece.

NCOT, if you are using a one piece if might be a good idea to try a 2 piece. That way you could be sure to really centre your wafer over your stoma, and maybe even pop the bag off every day or so to check out the wafer adhesive around your stoma - see if you notice any areas that have moved away from your skin or are wearing away. I change my wafer every six days, but my bag every three days and I do like checking out the wafer around my stoma to see if anything is going on.

Urgh, thinking feels like wading through a frozen river of treacle in January... >.> As an aside, I resumed taking Levothyroxine ; I've only taken one dose and I'm feeling like I've got to get off this stuff already!

Re 1-piece vs 2-piece: I normally wear 1-pieces, but I did try a few Coloplast 2-pieces recently (thanks Larasmom :p) I liked them a lot, apart from the tabs (hard to clean properly), but the wafer didn't seem any longer-lasting, tbh. I had the same problem with them as the 1-pieces: the edges of the hole were like melted candlewax, even after 2-3 days. Do I just have weird output which burns plastic? :-/

@PoucherinTO - Thank you muchly for your kind words :p ... How do you measure your stoma? Mine is slightly oval-shaped and I have problems with getting a truly accurate measurement.

Also, I can take photo of my stoma and skin if you would like... It's possible you might look at it and think I'm making a mountain out of a molehill! The problem is immediately around the stoma; it's not the entire skin underneath the wafer. As for these bags, they are crap; they just don't stick properly, I have to keep on sticking tape over the peeling-up parts. Only reason I'm still using them is that they seem the best ones for my skin so far.

@CrohnieCJ - That's interesting what you posted about zinc. I already use a dandruff shampoo occasionally; I'll look out for one with zinc in it.

I might have to change my bag right now, since this wafer is half undone already... Better go and deal with it before I have a leak on my hands (and over my stomach, clothes, and bedsheets :-/)

Do you think your leaks come from the inside out or go outside to in? You mention having the inner part looking like melted wax (I know exactly what you are talking about). But then you say the flange starts to peel off? For the peeling, I recommend the coloplast Brava strips. They attach to the outside of the flange and onto the skin. Those things MELD to the skin and prevent the outsides from lifting up.

If you are having trouble on the inside I guess try using paste instead of adapt rings (or vice versa). But some stomas are just acidic I think.

@polishdan - Yes, I tried the BCT, but it didn't really help in healing/protecting the skin, unfortunately. The barrier rings are not perfect, but seem to help the most. It's too early to tell about the steroid cream yet: I think it is helping, but I probably need to change the bag every day while I'm using it.

I think I have another duff batch. I ended up changing the bag last night and then this morning as well, because there was a breach in that bag. Luckily it was not a bad one, and so no mess had been made, but I still couldn't just leave it as it was. This morning I tried flattening out an Eakin seal, so I'll see how that goes.

@ActiveUCer - They're two separate things. With every bag I have tried, the inner part invariably turns to melted wax, but the peeling of the wafer just refers to the Salts 1-piece. It's annoying, as they don't do it every time, and in every other way I like them. Just wish they stuck a tad better.

I think I've heard of the strips you've mentioned and will order some. Microtape works quite well, but can irritate my skin a bit.

I dunno what to do about the output. The skin is uneven around the stoma, so that probably doesn't help. Might try paste: haven't tried that before.

Edit: Oops, PoucherinTO, your post wasn't there before I replied. Hang on while I read and catch up... >.>

Edit II: Cheers for a helpful post. Your stoma is a very similar size to mine, except mine is wider than it is long (29mm across, 26mm down, roughly, but that might not be exactly right). The half circle sounds like it might actually work, so I'll give that a go. Pro-tip: don't try wrapping kitchen foil around yoru stoma. Disaster that was.

Might as well ask here... Is it okay to use barrier seals on convex bags? My stoma nurse told me not to use them on convex bags, but skipping the seals just made the skin around my stoma much worse. She has sent me a few more convex bags, which I would like to try.

I will look up the Coloplast XPro bag. Sounds good! I sometimes have thin output. Not always, but I seem to be getting more of it than I used to. That said, I know it's not good for the lifetime of the bag, but it does make it a lot easier to empty - yeah, I'm that lazy; the less effort, the better! ¬_¬

I should have no problems getting hold of Coloplast in the UK, though I do appreciate your kind offer. My only worry is that I will put it off (because I hate talking on the telephone to the point of it being almost a phobia), but I need to get over this fear/dislike of mine and just call on Monday.

Post Edited (NiceCupOfTea) : 2/16/2014 9:30:25 AM (GMT-7)

@NCOT I feel like we are chatting in "real time"! I use a convex wafer and an Eakin and it is magic for me. Solved my skin issues and it feels very secure. I do use a belt for a few hours after I do a change, I feel like it helps the adhesive stick a bit better. Kitchen foil? Were you trying to suntan your stoma?! Hahaha. That's so funny. I feel like we are all bowel buddies or stoma sisters or something. I love the support here.

I went to the Coloplast UK website for you, it seems like there isn't much advertising for a 2 piece system or the XPro wafer (you can get them with convexity or flat - try the convex ones though) but be firm and tell them you want them to send you some - along with the Brava elastic strips (the half moons) and barrier wipes, adhesive remover wipes, everything. These companies want your business so they should send you as much as possible.

Let me know if I can help and we'll all noodle this out for you together!

Last time I used an Eakin seal, I had a dreadful leak... :-/ But I decided to give it another go today, and flattened out the edges as much as I could.

Lolzers, no, I was trying to measure it >_>. I thought maybe I could mould the foil to the shape of the stoma, take it off, and measure the base. This did not work.

I went to the UK Coloplast site and it was rubbish. Bit surprised by that; I don't remember it being that lame. You get better results by going to Coloplast's delivery company's website. There are a few XPro baseplates here: www.charterhealthcare.co.uk/productlist/4/41/Coloplast.html

There's 4 to choose from... :-/ Only one of them has convexity, I think, but how do you choose from the other 3? Okay, two are adhesive coupling and two are mechanical, but I'm only interested in the mechanical ones really. Anyway, it seems like I can order them all at Fittleworth, which is my delivery company for ostomy supplies. Might as well bung in the OstoSHIELD while I'm there :p

Okay, this is dumb... Why do they only give you 5 baseplates and 30 bags?? Anyway, ordered! Felt like it took ages. I bunged in an Ostoshield stoma guard (so Rabbit should get his review fairly soon), 5 of each of convex and non-convex baseplates, brava strips and coloplast paste for good measure. Just hope the size of the baseplates are okay, and that they and the bags match up.

Phew, I'm exhausted now >_>.

NCOT, the wafers I sent you were the Xpro but no convexity.

Hope what you ordered works out for you!

K

Larasmom said...
NCOT, the wafers I sent you were the Xpro but no convexity.

Hope what you ordered works out for you!

K

Oh. >_>

I liked the baseplates a lot actually. The only thing I didn't really like (as compared to the Salts' bags) were the tabs: it seemed much harder to keep them clean.

-quote="PoucherInTO"]I know some people who don't have ostomy supplies covered by insurance and they have to wash out their bags and reuse them so it's good to have a stockpile.

One of my biggest fears is that society will break down and I will no longer have a regular supply of bags. We are stuffed without our bags. It does quite scare me at times how dependent I am on them.

My heart breaks for anybody who is short on ostomy supplies. At least I am lucky in that respect.

summerstorm said...
I get 7 days of wear time. Here is what I do.
1. Clean skin with water only.
2. I use the wafers that roll, not cut, so I don't measure. But when I did use the kind that you cut in cut the hole a tiny bit too small. I put paste around the wafer opening.
3. Lie flat on the ground and put the wafer on running my hands around the outside a few times.
4. Stand up and use the hair dryer on the seal for a minute or so.
5. Finish putting the sure seals on. I think they make a big difference!
6. Tape the top of my bag to my stomach. Keeps it from flopping, I can't stand that!

What are wafers which "roll"? I don't get that.

Other than that, I don't do anything different to you. Well, apart from not using Sure Seals, which I don't seem able to get here.

I don't think I'm damaging the skin by changing the bag; I'm fairly sure if I left any bag on for 7 days the skin around my stoma would be ruined. This is what I meant by my opening post, I suppose: I don't get how anyone gets a full week's wear, or even 5 days' wear, without the skin adjacent to their stoma being affected. How does a semi-melted plastic wafer keep the output at bay for that long? This is a mystery which is starting to bug me.

But for now, bedtime is calling... :-/