Immediate Help Needed for Painful Ostomy Site

Hi everyone.

I'm hoping someone is online now who can give me some immediate advice.
I have been discharged from the hospital following ileostomy surgery last week. My wafer was changed on Friday; the change before that was on Wednesday. On Wednesday, the nurse told me to cut the circle to 1 1/8 inches and everything felt perfect and I had no pain. On Friday, a different nurse made me cut it to 1 1/4 inches—slightly bigger; since then, the entire 'bag' has been hurting me. I have an appointment Monday morning to see the ostomy nurse again. Do I try to change the bag on my own now—never having done this before—or do I wait out the pain until Monday and see what's causing it then?
Thank you so much.

Can you physically replace the appliance? It means you have no hand restrictions.

Do you feel confident enough to change it back to 1 inch 1/8?

I'm concerned you said the bag is hurting you at 1" 1/4 diameter. I'm guessing you got some irritated skin from the larger diameter cutout.

What's even more concerning is that those nurses and the hospital have not shown you how to do a change.

Thank you so much for replying, Warrior.

Yes, I can physically change it.
I'm confused about the sizing because both the 1 1/8 and 1 1/4 fit on Friday, but the nurse said there had to be some space—I just don't know how much space is enough space.

Ok... I see that confusion about the gap or space between the stoma and wafer, or ring barrier.

(Some folks don't use a ring).

Three thoughts:🤔

1- Some say make it flush around the stoma.

2- Others say leave a gap of about 1/8th.

3- Others say any gap is bad... as poop will get in there and irritate the skin.

Your stoma, like many stomas, breathes. They increase and decrease in size. This makes a proper fit daunting. You are going to learn what fits you best.

I'd stay at the 1 1/8 if that measurement includes a space.

Same if your stoma expands go 1 1/4. I'm assuming these nurses are including the gap space you need. Is that a safe assumption?

My experience... leave a gap.

Also, the pain could be the internals just adjusting inside you. You are a brand new osty.

If you can tolerate the pain, I'd wait, but if you think you need a change, do it.

Yes, do it! I know it's going to take time to get used to, but you seem to already realize things just don't feel right. Ask for help. In my experience, the nurses didn't know how to help, so I hope it's a different circumstance for you! I hope things went well for you!

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Did they send you home with a template to measure with?

Are you using a one or two piece system?

When you say the entire bag is bothering can you explain that a bit more?

Thank you, Warrior, Gemini, and Crappy Colon.

I did it! I made a grand old mess, but I feel so much better now. I think the ring was the issue; it was so tight around the stoma—it seems to have moved and was coming out from behind the wafer toward the stoma.
For now, I did it without the barrier; I used a protective sheet instead.
Now is the big test to see if my first bag change works and if it stays pain-free.

Thank you so much for replying and caring. It's a lonely place to be…

Good news then. Happy to advise.

You definitely don't want to choke the stoma.

Make a note of the time so you know you tried no barrier ring this time. See how long it lasts. It might surprise you either way. Write it on the bag with a marker: time, date, "no ring".

I do this all the time.

Warrior is anal about records 😂🤣

ConvaTec has precut wafers—give them a shout out—they're very helpful. You've got this.

Coloplast too. Pre cut. 

I cannot thank you enough for being here at a time of need.
I like the idea of writing the date and method on the bag; it's smart. I'm going to try that as I get used to having a stoma and finding the right products.

By the way, the bag change took me close to an hour. Is this normal?

Good for you Clara! No worries on how long it takes you. The important thing is you did it and it will make the next time a bit easier and so on ☺️

Way back when, I think we all took that long. It will be under 10 minutes. Slow and steady. It's a learning journey. You're not alone. 🌈

Hello.  Glad you got relief. 

I had a similar experience as you.  I was instructed to cut the wafer hole about 1/8 (3.175mm) larger than my stoma.   So I used the measuring guide and carefully cut the hole.  For 3 days I was so uncomfortable.  My stoma stung.  I finally removed the wafer and discovered my stoma had increased/decreased in size.  There was a red ring around my stoma at the base, where the stoma rubbed the wafer.  Stoma's are constantly moving.  Expanding/contracting.  Getting longer/shorter.  Makes it hard at first to fit the wafer comfortably, and keep output off your skin to prevent irritation. 

Lesson learned for me:  Moldable barrier ring.

Reading many ostemates tips, advice, and experiences on this website, I learned how to use a moldable barrier ring.   Game changer for me.  I cut the wafer hole about 1/4 (6.35mm) bigger than my stoma.  Then used a stretched barrier ring fitted to the base of my stoma.  RIng put on first, wafer on top. Comfortable.   No pain or sting.  And no pressure damage from my use of a support belt.  I use Coloplast Brava rings.  

If you use a 2 piece system: wafer with detachable bag... You can have a ring under the wafer, and after the wafer is put on, fit a ring on top around your stoma.  So kind of a double seal.  So there are lots of options. 

You might have to experiment with different ostomy brands and styles to discover what works best for you.  All ostomy manufacturers offer free samples.  Call them for information.  And they have ostomy nurses on staff to assist you over the phone.

My first bag change on my own took about an hour too. I'm down to 10-15 min and getting faster every time (I'm about 3 months out).

Precut wafers are wonderful and I wouldn't be without them. However, I was advised to wait on preciuts for about 6 weeks until my stoma stopped changing sizes.  

This early, you will need to measure every time because it can change rapidly.

Make sure they give you a measuring template on Monday when you see the nurse. Also make sure they show you how to use it. You'll get more temolates when you start getting your supplies but this early on, I assume you don't have that. 

Welcome to the club no one wanted to join but most are happy to be in. 

Since I am still learning as well, what do you mean about adding a second ring after the wafer is on. Is this going inside the place where the bag attaches to the wafer? 

If so, your stoma must stick out a lot more than either of mine. My colostomy stoma is barely above the wafer even with a convex wafer. The urostomy sits below skin level. I'm guessing a second ring wouldn't help me for those reasons. But I have struggled with leaks from the colostomy so please correct me if my assumption is wrong. (Ironically, the urostomy is well behaved even though it's below skin level.)

I just had my ileostomy on August 15 and I experienced the exact same thing with the ring. They changed everything out for me the day I got discharged and the next day at home I was experiencing so much pain. I  was able to get my ostomy nurse set up and she was coming over to see what was going on. Before she could get here I had to take off the pouch and barrier because the pain was too much and I felt like something was actually choking off my stoma. Turns out the ring was so tight around my stoma which is why it hurt so much. I ended up having to put a new bag on for the first time on my own before my nurse was able to get here, and it took me about an hour as well. And every time I changed it after that it got easier and easier. Which will definitely be the same for you.

Also, I see you’ve already received tons of great advice regarding the gap, but I thought maybe I would share one additional point of view. In my experience I’m not able to leave even a tiny bit of a gap. I make sure that the barrier and the ring are the exact diameter of my stoma. My stoma measures 25mm so I make sure the ring and the barrier are cut to 25mm. Anything bigger than my stoma size without a doubt ends up leaking and creating a bright red, burning, itching and painful wound about half an inch wide all the way around my stoma. But now that I cut everything to fit right up against it I don’t have that problem anymore. My stoma started out at about 30mm after surgery and pretty quickly began to shrink until it settled in at about 25mm. I was told to expect it to shrink down a bit.

Sorry, that turned out to be a long reply!

Hi Clara

You will learn when your stoma is least active and better suited to changing. After a change, keep the plastic backing from your appliance and write the change date on it. When you find a good fit, you can refer back to the plastic backing and use it as a template, trace around the cutout with a marker on the new appliance to reproduce a cut/fit you are happy with.

Thanks for all the great tips. 

I’m actually going from bad to worse. I was sent home with 3 bags till I get my prescription on Monday, and I’ve already used them all up in less than 12 hours. 

The first 2 bags I had to remove because they were sticking to me- I don’t really have a good way to describe it but the stool wasn’t moving away from the stoma area and there was no air in the bag. I blew some air into the third bag before I put it on, and now we wait and see. I did think maybe it was a filter issue and pulled on the small paper on top of the filter which I thought I may have to remove to allow air to be in the bag. I have a coloplast sensure mio bag, I think I may have ruined the filter but I’m out of bags so I stuck a sticker on top of the filter. I hope it can’t leak from there. 

I have no idea how you do it, I can’t imagine ever getting used to this. 

Also, the last two times, I just removed the bag instead of draining it and I do feel cleaner, I am curious if anyone knows why they didn’t offer me closed bags so I can just remove the bag each time and not have to deal with emptying?

When output builds up around the stoma it's called "pancaking" and usually due to eating certain foods that dry up your output instead of making it more liquid.

You can resolve this issue by altering your diet as permanent measure but sometimes you get caught off guard and have to resort to a more manual method.

However you don't want to push the material because that may cause it to force under the wafer and cause a leak. So the better method is to sit on the toilet and dump what you can, then pour water into the bag and flush, then some more and seal up. Go lay on your back and get the water up around your stoma and gently massage the material loose.

If you wash using two small drops of antibacterial dish soap and rinse twice, that will do a great job of killing the smell. 

Pancaking is something you learn to check for when feeling your bag if it needs a dumping, you'll notice a swell beginning to form around the stoma.

No the filter does not leak, it just releases air to prevent "ballooning" where something you ate producing too much gas. However some cover the filter I guess for smell purposes? Since I use the antibacterial soap I don't get smell issues.

You will get used to this, it takes time. 😊 

With a two piece system where you can remove the bag, you can opt to dispose of it each time, however that can become rather expensive and a waste. With those with high output otosmy its insane as I'll go visit the bathroom about 14 times a day. 

Like I said above, if you use the two drop antibacterial dish soap followed by flushes of water you can just wash your bag on the toilet and hardly ever deal with smell. The residue soap left over usually takes care of most of the smell of the next bag load.

It's better to use a drainable type bag and change it every few days rather than changing your bag multiple times a day, it's just not practical. Spend as much time as you can with the stoma nurse getting the process down, they are there for your benefit.

Agreed!

After some time using drainable and closed, you will know what works best for you. Tossing out full closed bags will be expensive. Drain and clean them while still attached to your flange is cost-effective and you get clean by rinsing them.

I use the same type but drainable.

It's a 2-piece I can rotate 360 degrees. When I invert it, adding some water goes right to the stoma. You give it a good "shake" and return the bag back to the original position to drain. I drain into a large cup. It's called a painter's cup. About a quart or 2 of volume fits. No hassle.

You do get used to it like anything else you need done. You don't see it yet. I forgot if you wear a belt or wrap which over time helps prevent leaks and keep whatever bulge you have at bay.

You are in the right place to find out the best options that work for you. Just keep asking and experimenting. Not sure you can get free samples by contacting the big 3; do so if you can. Always have a reserve, spares, a nice stock to fall back on if a rainy day comes, as you are in now without any bags.

Problems will be solved.

I (and my stoma nurse) do not recommend rinsing the bag with water. I started doing it on my own because it seemed like a good idea and it was cleaner. However, when it came time to swap the wafer, I had the worst peristomal skin breakdown ever! The nurse said it was because water allowed output to get between the barrier ring and skin. I stopped rinsing out the bag and have not had a problem with skin breakdown. I also avoid bags with filters because everything I read about them said they stop working after a day or two. It's better to use a few drops of ostomy lubricating/deodorizing liquid to keep the bag cleaner and less stinky.

Welcome. Good reply. Valid.

I too read that water rinsing in the bag will basically "eat away" at your ring, causing it to break down.

So? Get rid of the ring.

People do this. I tried it. It's a non-issue. I get 3 days wear time and I rinse at each dump.

I believe it depends on the person. If it makes you feel cleaner, then there is a price to pay—that being more changes.

The O-ring doesn't like water. I understand that there's a chemical reaction.

It's totally up to you. Your call to rinse or not.

Everyone here is learning as they go... everyday... every topic.

Thanks for sharing.

Yes, your stoma needs to stick out more, especially an ileostomy. A stoma protruding too close to skin level causes continual problems. A convex wafer helps, but long term can cause its own trouble.

A stoma should stick out above skin level at least 2 centimeters (0.787 inch), at its smallest shape. Stomas change shape all the time due to peristalsis.

Revision surgery can pull the stoma further out. Then a convex wafer is no longer necessary.

With a proper length stoma, adding a second moldable barrier ring on top of the wafer, then snapping on the bag, can help keep output away from irritated skin. It's not something you would need to do all the time.

My colostomy stoma, on average, sticks out 1 1/2 inches most of the time. It does occasionally shrink to an inch, other times it expands to 2 inches. It's always long enough so output goes in the bag and not on my skin. My colostomy output doesn't irritate my skin, so I'm lucky.

Thank you! That is very helpful to know. I have a colostomy but I get a lot of watery output, so I have some similar problems. My stoma only sits about a cm or 0.5 inches above skin level, so that needs revision in addition to the urostomy... sounds like fun! Lol

Hi Clara,  I can't even imagine someone with an ileostomy using closed bags for any length of time.  I have an ileo and I empty between 10 and 12 times in a 24 hour period.  That would mean going through up to a dozen bags a day!  Not to mention the hassle of changing your entire appliance that many times, instead of just emptying.  Also, these flanges are meant to stick to your skin for long periods, and constantly using the adhesive remover on that strong adhesive would be hard on your peristomal skin.  You will get a handle on it, don't worry, just give yourself time.

Terry

I was told the same thing… What I have come to learn (4 years with ileostomy) is the closest I can get the hole to a snug fit around my stoma, the better… and I also use a barrier ring which I place on the bag first and tightly pinch it to the bag… Good luck. It'll all get easier, and you will find what's right for you… It just takes time… When things are right/correct, there should be no discomfort. jb