Hey guys, I'm very new to the ostomy life. I had my ileostomy 5 weeks ago. I noticed the other day that my stoma has gotten bigger. Is that normal? It just seems larger on the right hand side. It has me very confused. I've had a slight bit of bleeding underneath too. Obviously with Covid the nurse can't call out so I'm freaking slightly.
Any and all advice would be amazing x
Hi Kayla. Please consider this reply as accurate but insufficient to fully satisfy your concern. Stomas can change size, especially when they're new. Stomas bleed easily but usually stop bleeding rather quickly. If the appliance is just a little on the tight side it could cause bleeding. I think there's nothing to worry about but suggest you talk with your surgeon then you'll feel way better.
Respectfully,
Mike
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Mine changes size sometimes; it is large at times and other times it shrinks. The dangerous issues are major changes in color; stomas are usually a range of red to pink. Pain and heavy bleeding occur. Stomas bleed easily when touched too hard, but it should not be heavy and should stop pretty quickly.
Hi Kayla,
I'm glad you are asking questions. The only thing I can add from my experience is I learned to cut the hole just a little bigger than my stoma. Sometimes it doesn't get centered around it right, therefore hopefully it doesn't rub the stoma and bleed. One time it bled for an hour and a half. By the time I was seen at the ER, it had stopped.
Mike and Maried gave good advice. First, don't panic and talk with your ostomy wound care nurse.
You will get great answers from the people on this site. Let us know what happens and take care. Mtnman
The stoma takes a while to settle in its size. If I remember correctly, they told me it can take up to six months before it settles. The stoma will bleed when touched by anything; this is normal as it is an internal organ that is normally inside and is never touched. If you watch it for a little while when changing your bag, you will see that it pulses and becomes very wet. This is its normal state. I suggest initially measuring it when you change the bag so you can cut the correct hole. It is your skin that will itch if your waste comes in contact with it. That is the acid in your waste burning the skin. You need to cut the hole in the bag as close to the size as you can. Don't worry about touching the stoma, just be delicate with it.... Hope this helps.
Mike
Welcome to the club,
Having a new stoma, it is still healing and swelling going down, depending on how your surgeon sewed things, the stoma will start to settle but sometimes will not stay round. The inside of your small intestine has to have the blood flow at the surface to absorb nutrients, so it can bleed easily but will stop quickly also.
You're going to be a pro at changing out your appliance in no time and find your stoma will change shape from being big and small with temperature and blood flow. Just be careful to make use of the different products like stoma paste and prep wipes.
That is good advice everyone is giving to be careful to make sure you do not make the opening too small around the stoma when cutting the opening in the appliance. That is where the stoma paste helps out. I made that mistake once, but I fixed it a day later.
Good luck.
I have an ileo (4 years) and my stoma will still change sizes based on my eating habits.
Do you use a barrier ring/seal under the bag? They mold right around the stoma, leaving no gaps whatever size the stoma decides to be on any given day.
I've always used the Hollister Adapt barrier rings (but all the companies make them) for 12 years and never had any issues (even in the first year when the stoma size changed often).
Hi Kayla,
You said 2 things that I'm not sure I understood. You said "It just seems larger on the right hand side" and "I've had a slight bit of bleeding underneath too." Let's start with the first one......you're saying the "pipe" that makes up your stoma is bigger on one side than on the other side? So what you're describing is the wall thickness of your stoma.......and you're saying it's not the same thickness on both sides......right? That means the little hole that your output comes out of is no longer in the direct center of your stoma......am I still correct? Assuming there's no redness or warmth on the side that's getting bigger......it just means your stoma is shifting and leaning to one side a little, which is normal. But if what you are seeing is swelling, with redness and warmth then you could possibly have an infection (which unfortunately happens a lot post-op) and that will need to be addressed ASAP by your Doc.
Your second comment about bleeding underneath has me confused. Does "underneath" refer to the bottom side of your stoma (ie, the side of the "pipe" that faces the floor)? If so, then you're saying you're bleeding on the side of your stoma that you cannot see. So the next time you change your barrier have a small mirror handy and look very closely at where you are bleeding. You should be bleeding from the very edge of your stoma, not from the "side" of your "pipe".
Obviously everyone is different, so you need to find what works for you. For me, the advice to cut the hole in the barrier a little bigger than the stoma doesn't work for me.......I do the opposite and cut my barrier hole a little smaller than my stoma, to keep any of my output from contacting the skin on the side of my stoma (which would cause severe irritation). So use the mirror at your next barrier change and get a good look at where it's bleeding. Make sure that area is fully cleaned and has stoma powder on it before you hit the powder with the barrier wipe. Then choose whether you want that area covered by your barrier or open to output and adjust your barrier accordingly. Feel free to post pics of what's going on with your stoma and we can get more specific.
Regards,
Bob
Hi Kayla,
My stoma sinks in on the bottom side too. I've been cutting a wax barrier in half and stretching it around the stoma, putting it just under the stoma. My stomach sinks in a bit in the same spot, thus building it up more level. That makes for a flatter surface for the bag to adhere to.
If the hole cut to fit around my stoma has an uneven (or slightly jagged) edge rubbing on the stoma, it hurts when bending and may cause it to bleed.
I hope this gives more clarity...mountain.
Hello Kaylakaykes.
welcome to the wonderful world of stomas, and thanks for sharing your concerns as it gives us an opportunity of reminiscing and reliving the experiences of past and present problems.
You have already recieved lots of good advice, so I won't repeat any of what has already been said. One of my problems was with a peristomal hernia which not only closed the hole, but seemed to make one side of the stoma swell, distorting the look of the stoma and looking as if it had some sort of abscess underneath. Or, to put it another way, it seemed as if the stoma was prolapsing. This also had the effect of expanding the size of the stoma, which made it 'just' touch the rim of the precut hole in the wafer. On one occasion this caused quite a bleed and the cut has never really healed up properly. Once I realised what was happening I cut the hole in hte wafer bigger and that eased the bleeding and it did not get any worse. I then started ordering devices with a larger precut hole. As for the stoma changing shape. I have been fascinated by what can cause this, and for me the gtemperature of the atmosphere (or bath water) will do it, with cold shrinking it and hot expanding. Also, touching it in various ways will make it change shape for a short while, compressing it will obviously flatten it and mine will stay in that shape for a bit. I have found that simply looking at it will make mine expand to its fullest extent. Thus, I am convinced that there must be 'something' psychological going on there as well as physical.
Well! that's my contribution. I hope that you find these replies useful and entertaining in your own deliberations about what is going on for you.
Best wishes
Bill
According to the UOAA Ileostomy Guide: The stoma will appear pink to red and will be moist and shiny. It will reduce in size over a short period of time after surgery.
Medical Emergencies -- You should call the doctor or ostomy nurse when you have:
• Cramps lasting more than 2-3 hours
• Continuous nausea and vomiting
• The ileostomy does not have any output for 4-6 hours and is accompanied by cramping and nausea
• Severe watery discharge lasting more than 5-6 hours
• Severe odor may indicate infection
• A deep cut in the stoma
• Severe skin irritation or deep ulcers
• Excessive bleeding from the stoma opening (or a moderate amount in the pouch at several times of emptying)
• Continuous bleeding at the junction between stoma and skin
• Unusual change in stoma size (prolapse or retraction) and appearance (color)
https://www.ostomy.org/wp-content/uploads/2018/03/IleostomyGuide.pdf
Yes, very normal, especially in the first few months. You should measure your stoma weekly.......even after over 30 years, my stoma changes size. You should always measure a stoma once a month...I should practice what I preach, lol, but often forget to measure my own.
Thank you all so much for your replies. They've been so helpful. It's made me realize there is so much more I need to learn. The bleeding stopped, which is great. The nurse said exactly the same as all of you regarding bleeding and size/shape change. I am worried I can my bags a little too tight though. I'll need to start making the hole slightly larger. If I keep the ring nice and tight though, that should be okay, shouldn't it?
I know this is an odd question, but some days I find that there is a constant smell from it/on me, while other days I can only smell it when emptying it (I prefer those days). Could this be because I'm putting it on slightly wrong?
Sorry, I just have so many questions. I really do appreciate you all taking the time to help me though. It's a very scary world as a newbie.
Hi Kayla,
Do your bags have a charcoal filter at the top? Sometimes the smell or gas can escape there and there may be an odor.
When you change your bag, keep an eye out to see if it looks like it's starting to seep, any signs where it is about to come through the adhesive edge. If so, this would be an area to figure out why it's vulnerable.
Usually on mine, the lower portion is where it would try seeping out. But it's all in the preparation. Just look for any possible problem area and go from there. Just an idea, a place to start? ..mountain.
This is a great place to ask questions. I wish this was around when I first had my colostomy... that was before the Internet!
If you do not have a filter, how often do you change your bag? I have a colostomy. After one day of wear, the smell seems to seep through my bag, so I change my bag almost every day. The M9 deodorant helps, but after a day, I can smell the poop perfume smell.
Definitely not an odd question. I have an ileostomy and usually, depending on what I've eaten (but not always), even after 12 years, there are often new and unusual odors emitting from the bag area. I always put tape over the filter too, but that doesn't prevent the stench. If it's like an old drain or open sewer (honestly about the only way to describe it), it usually means a leak is in progress or about to happen, but strangely enough, sometimes there is no problem with the bag/base at all.
Have asked family and friends (the truthful tactless ones!) if they can smell anything, and the answer is always no, pretty sure they aren't just being nice (particularly my brother, am sure he would be proud if had produced some of the odors I think I can detect!). I think as ostomates, we do develop an acute sense of smell, and as our bum is now in the front instead of back, perhaps we are oversensitive to any aroma, who knows.
I rarely eat fish or seafood now because the stench is almost instantaneous, unless it's the night before change-day (about every 4-5 days), but NEVER on the same day I've changed the bag because the scent will linger on forever.
Then again, sometimes when I empty, there is a distinct sulfuric rotten egg smell when I haven't had any eggs for ages, but I do often enjoy a bacon and egg McMuffin, so it could be the residual effects of my weekly treat!
Peppermint tea can work for odor (as well as gas).
Below is a chart I posted a while ago about some foods that can cause odor, definitely not hard and fast rules, just a guideline (I disagree about the coffee causing odor, as for me, the output just smells like a latte!)
Hi Kayla,
First, I'd say it's a very scary world as an ostomate... doesn't matter if you're a newbie or a veteran. There is certainly a lot of help out there for us nowadays, but it's very hard for non-ostomates to relate to the problems we have.
In regards to cutting your barrier a little bigger... sure you can. But I make mine as tight as possible, otherwise I find liquid output can seep under the ring... which for me causes skin irritation. When you change your barrier and ring... remove your barrier/ring and blot the bottom of the ring (the side that was in contact with your skin) with a paper towel. If there is any seepage, it will show up as wetness on the paper towel. It's sometimes hard to see any wetness both on your skin and on the ring... but the paper towel doesn't lie. Any moisture present under your ring is bad... and needs to be corrected. The ring is designed to be supported (sandwiched) between your skin and the seal material of your barrier. If you cut your barrier bigger, but put the ring tightly against your stoma... the part of the ring not covered by the barrier (because the hole is now cut bigger) will not be supported on top, and adhesion to your skin won't be as good as where the ring is covered by the barrier. So sure, you can cut your hole in the barrier a bit bigger... but don't go crazy.
Regards,
Bob
Had my stoma since 2007. Once in a while it gets a little bigger than a little smaller. As far as a little bleeding goes, it's been happening with me since day one with no issues. How's the weather in Ireland? My wife was there 2 years ago.
Hi, Kayla! Yes, welcome to the brave new world of stoma-dom. I think I can address the smell issue. Sometimes, a little waste can infiltrate underneath the faceplate, especially when it is nearing the end of its adhesion life. In the model I use, there is a somewhat stiff circular base that is the plastic that gets cut to fit around the stoma. It extends a little way beyond the flange the pouch connects to, but you can't really see it because the cloth-like cover that extends to the edge of the faceplate hides it. If waste gets underneath the faceplate (between the skin and the faceplate) it can work its way beyond the edge of the circular base, but not all the way to the edge of the faceplate. The cloth-like cover is slightly permeable, and you can start to get smells long before you see anything past the edge of the faceplate.
Also, if you have a filter in the pouch, and you get waste up over the filter (like when you sleep), it can overpower the filter (which is only designed to remove odors from the air space) and allow smells to escape.
For the most part, if you have smells that persist for several hours (and not just a fleeting whiff now and then), it's time to change the appliance or the pouch, depending on which it's coming from.
Good luck. Eventually, you will get the hang of it and know when you should worry and when not to. Until then, you are always welcome to post a question or a concern, and there are plenty of us who will try to address it, even if our answer is "Get to the doctor!" or "Nah, don't worry about it!"
All good advice here, Kaylakaykes. I have two things to add:
1. Something to be aware of is stoma prolapse. In my case, my stoma "got longer" (prolapsed), in fact, it grew to the length of my middle finger. It caused me problems by being in the way all the time, and I was concerned about damaging it. During my last parastomal hernia surgery (I have had three of them), I had it repaired, and so far, it has remained relatively short. I say this not to scare you, but just something to be aware of.
2. In regards to your odor issue, I use Hollister products, and last year they reformulated the material they use for their bags. Ever since, I have had odor issues and am convinced that odor can leach through the bag material. See post here.
Hello, you! Yeah, sounds slightly freaky... I have had my ileostomy just over 2 years ago. I have often freaked about the size. It can vary a lot. Sometimes when I take the bag off, it sticks out over an inch or more. When I then wash the area, it usually moves back in again. Definitely has a life of its own, also depending on whether further down it has some work to do... My stoma nurse said it's okay. Also, a small bleeding underneath. It happens. Maybe use those mouldable rings to protect the skin there. But if you really worry about it, you must see your stoma nurse, I would say... COVID or not. Hope you feel better by now. X Mimmy
In case anybody needs to reduce your stoma size while changing the appliance, my surgeon at the Mayo Clinic told me to sprinkle a little sugar on it. Hmmm....might as well sweeten it up a bit :-) Cold water also works.
EDIT: I forgot to mention to wipe the sugar off once the stoma has reduced. Thanks for catching this Mountain!
Hi GraphX,
But couldn't that promote yeast? I think I'd try the cold water. ..mountain.
Good catch, Mountain!!! In my haste, I forgot to mention to wipe it off once reduced in size. I will try to edit my original comment so no bad info will circulate.
I am no doctor, that's for sure. When I got my ostomy, my wound nurse said the stoma actually should get a little smaller. Might want to get a professional opinion on this one.
You have all been so amazing. I feel so much better reassured about my concerns now. She's shrunken back down now and seems to be staying that way, thank goodness. Thank you all for being so kind and getting back to me x
Hi Kayla,
Glad you got some great input. It's a journey that with help it makes it a lot easier. As I said, you are in the right place and welcome. ..mountain.
Hi Kayla. Stomas change size all the time. I have had mine for 5 years now, and you will see just before it erupts, it gets a lot larger in diameter. When I shower, it gets smaller from the warm shower hitting it. By the time I am ready to put the flange and pouch on, it has grown large again. All in the world of ostomies. LOL