Tips for Managing Output During Ileostomy Pouch Changes

Replies
53
Views
3370
Newbie28607
Apr 09, 2022 8:10 pm

Hi - I got my ileostomy 3/7/2022, so I'm about a month out from surgery. I was re-hospitalized with quite an infection, and so now that I'm home again I'm finally beginning to wrap my head around the day to day with the pouch.

My output is not extremely liquid like it was at first, but it's also not very thick. I think this may be the case with ileostomies in general. What are your experiences?

My biggest question right now is how to manage the stoma output during a pouch change. It doesn't seem to matter when I eat - there is always output. Plus, I'm still struggling a bit with proper nutrition since I can't eat a regular diet yet - two more weeks to go to 6 weeks, when they tell me to be bolder in what I try. I want a salad! :) I need to eat small, frequent meals for now.

So far, for a pouch change, I put 4x4 gauze over the stoma and have to have a trash can close at hand as the stoma requires a LOT of gauze to mop up the output. And then of course I'm trying to clean the skin and stoma and prep the area for the new bag, all with only two hands, both of which seem most often to be used to switch out and dispose of poop-soaked gauze. Does this sound familiar to anyone? How do you manage? Are there better ways that work for you with a stoma that always produces poop? So far a home health nurse is providing the additional required hands. But I know people on this forum can do it on their own. I'd love to know how you do it.

Gayle

AlexT
Apr 09, 2022 8:48 pm

I have a colostomy and can go hours or even a day without any output, so I'm no help to answer your question. But there are some on here that'll give you some answers once they read this. Good luck.

Gray Logo for MeetAnOstoMate

Why Join MeetAnOstoMate?

First off, this is a pretty cool site with 34,000 members who truly understand you.

It's not all about ostomy. We talk about everything.

Many come here for advice or to give advice, others have found good friends, and some have even found love. Most importantly, people here are honest and genuinely care.

🛑 Privacy is very important - we have many features that are only visible to members, ensuring a safe and secure environment for you to share and connect.

Create an account and you will be amazed by the warmth of this community.

Cplumber
Apr 09, 2022 8:54 pm

So it could be considered gross, but I'm a plumber and I know all drains are connected and I clean up with bleach foaming spray cleaner. I get everything ready and laid out then I lean over my sink with the water running and stoma pointed into the sink, I remove my old bag clean and prep (any discharge goes in the sink) slap on a ring and a flange and bag already prepped, put on a belt and cinch it up, put everything away, do a quick clean up and I'm good for another 7-10 days. All takes about 15 min.

Hope that helps, I will be praying for you.

Cplumber

Meadow Snow
Apr 09, 2022 9:06 pm

Hi Gayle,

I got my ileostomy on the 3rd March, so only a few days before you! But I actually had a stoma back in 2013-2015, when I got it reversed with something called a J-Pouch. I ended up needing to have the stoma back because the pouch was inflamed all the time - called pouchitis. Anyway, this means I already have some knowledge, it's just a case of getting back into the swing of it. Is there a time of day when your stoma is slightly quieter? For most people, that is first thing in the morning, because inevitably it's been quite a while since you last ate (although you're more likely to see bile because it's been a while since you ate). Also, a good trick to try is the marshmallow trick: eat a few marshmallows about 1 hour before you plan to do a change, because in a lot of people marshmallows temporarily slow down your output. If you do it when you've just eaten a meal then there will be more output because eating a meal tells your intestine, "right, it's time to get to work now, let's go!" Seriously, marshmallows can actually help! Sounds a bit strange, but there you go!

Prepare as much as you can before the bag comes off. Cutting the hole for the new bag, plenty of wipes at the ready, adhesive remover is ready, any extra products you use are out and ready to put on, e.g., I am using barrier rings at the moment, so I make sure I have one ready to fiddle with. So all you have to do is take the old one off, give the skin a wipe down, and then put the new stuff on. And like you're already doing, putting some gauze over the stoma can help catch anything. Also, tuck a dry wipe into your underwear just in case anything decides to dribble down, the wipe will save your clothing. Tangent - to help the dry wipes last longer, I always tear them in half before I use them, and actually it's a torn-in-half dry wipe that goes over my stoma, so that's one less thing I need to keep in stock at home. Also, instead of a wipe, some people will tuck the disposal bag into their underwear.

One last thing, I downloaded from the Coloplast website a PDF called Dietary Advice for Ostomates. It just lists several foods that can thicken flow, several that can soften flow, several that cause odor, several that can reduce odor, several that can cause wind, and several that can potentially cause a blockage. So it's not saying "eat this! Don't eat that!" It's just informing you of what a few popular foods might do to you. And introduce the new things one by one, see if you notice any difference. For example, have some onion, do you notice extra wind in the next several hours? Then the next day try some lettuce. Notice any change? And so on.

Hope this all helps, and good luck. Keep us all posted

-Meadow

TerryLT
Apr 09, 2022 9:39 pm

Hi Gayle, I have an ileo too, and I feel your pain! There are things that help though, the marshmallow trick does work, or some peanut butter, which also will slow things down. I don't have a lot of time when my stoma is inactive, and there are pouch changes that become frustrating. My husband can vouch for that. He always knows if I'm doing a pouch change when he hears the swearing coming from the bathroom! I always do my change after showering. When I step out of the shower, all my stuff is ready to go, pouch flange cut, mirror set up on the side of the sink, pieces of tissue at the ready. The very first step on getting out of the shower is to put a small piece of tissue around my stoma, just to start the drying process, then continue to dry the rest of myself. I do my change right by the sink and if I start having a little output, the sink is right there. I can grab a tissue quickly to get it before it even gets to my skin. I always dry my flange with the hair dryer before applying and make sure to have a piece of tissue on my stoma while doing that. Most times I am fine and there is no output, but my output can be a little unpredictable. Once you are eating less often, you will be able to figure out the best time for a change that works for you. This is all part of getting to know your stoma, and you are still in the early days. Once the healing is complete and you are in more of a regular routine diet-wise, things should be easier. Again, patience my friend, you'll get there.

Terry

 
Words of Encouragement from Ostomy Advocates I Hollister
Abefroman1969
Apr 09, 2022 10:12 pm

Marshmallows work! My ileostomy date is 1/26/2022.
As for me, I try to find that sweet spot in the day when my output is low. For me, that's late morning/early afternoon. My friend rigged up a full-length mirror that attaches to my shower head. So, after the shower and I'm dried off and starting the skin prep, I hang that mirror and stand in the tub until my change is finished. If I have any output, I clean it up and/or it just drops in the tub. When finished, I rinse out the tub and take the mirror out. I still hate it, but it's made it a ton easier with a lot less mess.
Abe

AKA

Paul

Newbie28607
Apr 09, 2022 10:17 pm

Thanks so much, everyone! I think one of the things I am noticing is how many of you do the pouch change standing up, maybe over a sink. My bathroom sinks won't work for this - though I'll stare at them a bit more - but the kitchen sink would, but the kitchen sink isn't very private. So far, I've been reclining in a leather chair (well protected with a towel) and trying to do it that way as my stomach needs to be flat, either from lying down or standing up in order to get the pouch on. I'm using the ActiveLife One-Piece Convex Drainable Pouch, which was pouch number two tried with my ostomy nurse. It works better than the flat ones we started with. My stoma is just to the right side and an inch or two above my belly button, so a lot of bending goes on there.

Standing up, I don't know where all the output would go.... I'm still thinking this through! I have tried marshmallows, and while it makes the output thicker, it doesn't change the fact it's coming out whenever it wants to. I'm going to reread your replies and look forward to more. I know I'll get this at some point.

Newbie28607
Apr 09, 2022 10:19 pm
Reply to Cplumber

I can only aspire to your speed and expertise, Cplumber!

Axl
Apr 09, 2022 10:58 pm

Hi Gayle

All sound advice here, you will find a time of day that works best for you, my time is early evening before dinner and I keep lunch to a minimum on change day, it will take a while before it slows down somewhat, you may want to try a little Imodium for now to give you a break from the frenzy at change time.

Axl

Past Member
Apr 09, 2022 11:33 pm

I also have a very active and watery producing ileostomy. It's not always easy to change your bag, and you will get frustrated at times. When I go to change my appliance, I prepare everything first, then stand over the toilet for when it decides to act up in the middle of my change. It helps to get fast at doing it, and to keep a bit of gauze over the stoma at all times if possible. Sometimes your bag change will go smoothly and be over with quickly, and sometimes you might be standing over the toilet for nearly an hour waiting for the stoma to stop leaking. I find it best to change my bag first thing in the morning after I shower and before I've eaten anything for the day. Also, I use Hollister products because after trying many different brands, I have found that they work best for me. I hope this helps. Good luck in your new venture as an ostomate!

kdel
Apr 09, 2022 11:45 pm

Hi Gayle,

First off-- I hope you're not going to start right off with salads when you get the green light to start introducing more foods! Fiber is not your friend, especially early on. The most nutrient-dense, easily digestible type of food is meat and other animal foods like eggs.

As far as changing gear goes, I always change in the morning before I have anything to eat. Your system is still settling down, so it may be a little bit longer before your ileo's behavior is more predictable. But if you can change when it has been quite a few hours since you have eaten, that will help. But of course, we still have the issue with the stoma always putting something out. It's a pain in the front butt...I know.

Check out this gal's blog. She was a big inspiration to me. She hasn't posted in a few years, but I learned many tips and tricks from her. The most important one is making paper towel hats for your stoma while changing. I use toilet paper instead of paper towels, but this method works very well. Also, remember to have everything laid out and ready (barrier hole cut, etc.) before you remove your current gear.

Here's a link to the specific blog post:

https://ostomyoutdoors.com/2015/02/02/marshmallows-and-paper-towel-hats-tips-for-anytime-appliance-changes/

Here's a page where she shares links to other blogs/websites. I don't know if any of these are active or not.

https://ostomyoutdoors.com/helpful-links/

Past Member
Apr 10, 2022 12:18 am

I change mine in the morning when it's inactive. If doing it any other time, I do it in the shower. A really hot shower softens anything stuck to your skin. Letting the hot spray run on the naked stoma is great for the damaged and delicate skin. The wafer sticks even better to damp skin. If the output takes a while to slow down, it just means more time in a nice hot shower!! Nothing too bad about that.

I get everything prepped beforehand, so I wait for a lull and just slap it on. You only need a few seconds of inactivity to get it on, circle the wafer with your palms to push it in place. Put the 3M tape (two inches is best) on the wafer edges and you're good to go. Spray a bit of bleach in the shower, wash it off, and you're good.

Eamon

Justbreathe
Apr 10, 2022 12:23 am

Wow - interesting how many stand to change pouch. I have an ileostomy and like the others have mentioned, I have everything I need at hand. I lay out my supplies on my bed right next to me. A doggie training piddle pad (Walgreens had them for 10 for 50) works great as a safety feature underneath me. I change mine in the a.m., missing my ever-so-needed cup of coffee until this task is done! I shower first - clean skin around stoma to keep any rashes away. Then I dry, cover my stoma with toilet paper, and head to the bed and position myself in a reclining/sitting position so I can easily see the entire area around the stoma. I keep a tissue very close at hand, then I apply the products. As long as I don't eat or drink in the a.m., my stoma is pretty calm. If it is active, I wait about half an hour for it to do its thing, then get on with the procedure. Sometimes I think it knows that all I want is one cup of coffee, so it punishes me! LOL. I usually check out this site while I wait. Trial and error will get you there, so be patient. Best wishes. Just Breathe

Meadow Snow
Apr 10, 2022 8:25 am
Reply to Newbie28607

I think one of the key things for me with the marshmallow trick is to wait for about an hour after eating the marshmallows before doing the change. There (hopefully!) should then be a short window where you can do your change. And yeah, naked showers without your bag can be so amazing! The only reason I haven't done one yet is because I'm too scared to brave it with the mucocutaneous separation I'm currently dealing with (mucocutaneous separation is where the skin separates from the stoma, quite a common problem to happen straight after your surgery, when the skin and stoma haven't yet bonded together. Although I'm thinking I might go for a naked shower tonight, I'm thinking my skin is now healed enough that I can do it!)

Good luck!

Meadow

HenryM
Apr 10, 2022 9:16 am

Like most everyone else, I change first thing in the morning.  I don't eat anything after 6 PM the evening before.  90% of the time this strategy works and I have no output while I'm changing.  I've cut it down to only about a five minute window b/t the old bag coming off and the new one coming on.  Altho' I'm sitting in front of the bathroom sink in anticipation of my change, I stand up to apply it.  I use a 'just in case' paper towel mat at my feet to catch any spillage.  It's interesting that everyone has a uniqueness to their method.  Yours will evolve in short order.

HenryM
Apr 10, 2022 9:18 am
Reply to TerryLT

Hah, I laughed out loud at your image of the swearing coming from the bathroom.

Newbie28607
Apr 10, 2022 1:45 pm
Reply to kdel

Thanks so much for this. I'm going to spend some time reading and learning!

Newbie28607
Apr 10, 2022 1:49 pm
Reply to HenryM

All of these ideas and experiences are so helpful. Because of my pain med schedule, I am eating a snack at 11 pm. I am slowly weaning off them, however, and that should help if I can stop eating completely, as you do. That said, I find I have to empty my bag at night even after a small snack at 11. Oh well. I think, at least for now, I have a very active little stoma!

ron in mich
Apr 10, 2022 1:52 pm

Hi Gayle, you've got some great advice from others on here. Like others, I do my change in the morning after a shower. But the night before, I eat some Chex Mix as a snack around 6:30-7. And the next morning, I have very little output. I do my changes standing over the toilet, and like others said, I lay everything out before my shower. Once I've dried off, the change takes about 15 minutes. Then, I wear a safety belt for about an hour to make sure the wafer is stuck on.

TerryLT
Apr 10, 2022 8:19 pm
Reply to HenryM

And I'll bet you can guess which word is most frequently used!

Past Member
Apr 10, 2022 8:55 pm
Reply to TerryLT

LOL Terry

Past Member
Apr 10, 2022 9:55 pm

Unfuckwithable is my word when I look in the mirror as I peel off the old baggie!!

One lady wrote in at some point that she changed her bag over the sink also. She said that when she just got her stoma she would eat corn, before she learned better.

She said as she stood there the corn, undigested, began shooting out like bullets out of her stoma, bouncing off the mirror. She said her little daughter thought it was hilarious as she ducked for cover from the corn bullets!! She probably told it better but it created a funny image in my head.

Must have had something carbonated also for the explosive effect!!

Eamon

Past Member
Apr 10, 2022 9:59 pm

That's a riot!

looking forward
Apr 11, 2022 12:09 pm
Reply to TerryLT

I also have an ileostomy. Just another hint. I put a towel down near the toilet and one near the sink, and I change after showering. A paper towel or gauze over the stoma. If anything happens to come out, it falls onto the towel.

clermontjackie
Apr 11, 2022 12:13 pm

I just make sure I pick a time when I know she's not going to be active. But you could also use a dog pee pad cut in half and place it where you're going to change your bag, so if it acts up, it will go on the pad, not you or the floor.

Little Lulu
Apr 11, 2022 12:20 pm

Gayle, lots of good advice from people! I, too, do the marshmallow trick 45 minutes before I do my bag change. One other thing I can add is that I eat a banana the morning of bag day. Bananas definitely thicken the output, so that even if your stoma is active, it is much easier to capture the very thick output, rather than the watery kind. I have the banana in the morning after coffee, then I don't eat anything else until 11:30 when I eat six regular marshmallows, wait 45 minutes. During that time, I lay out all of my supplies so that everything is ready. Everybody is different. Try different routines. You will find what works for you! It does get easier!

Lucy

Bettyboophume
Apr 11, 2022 3:57 pm

Boy, do I know this pain.. I received my ileostomy in 2018. 2nd ostomy: had a colostomy in 2012 from a rupture. It was reversed 8 months later. I had so much trouble with the colostomy, that when I had the ileostomy, I expected more of the same: odor, leakage, drips, skin issues...etc. While I did have initial issues, things have gotten a lot better. I always set things up with extras before I change the bag. 1. I remove the bag while standing over the toilet (things can drip and I just flush them away!) Pouch goes into the trash bag. If you cannot stand long enough, sit on a toilet. Keep a trash bag next to the toilet for the old bag and other trash. 2. I usually change the bag after a shower standing up (much easier than lying down). To catch drips (inevitable) I have the tub! Tub will need rinsing afterward, but can wait until done. 3. I usually use toilet paper, paper towel, or a dedicated washcloth over the stoma. 4. Trashcan with bag already set up (now has old bag, wipes, etc) 5. Dry off around stoma, apply barrier wipe around entire area where new bag goes (this is set up and open beforehand). 6. New bag (I use Convatec 1" precut bag (convex) with Eakin's barrier stretched to my stoma size (7/8") applied to bag (NOT the skin). 7. When the barrier wipe is dry (usually less than a minute), I stick on the bag). DONE! 8. If needed I do go around the attachment area with a hair dryer, (with my hand over the stoma) to add heat to seal it.

Nutrition and thickening: My ileostomy was done in the midst of a heat wave. Initially, I had a huge amount of liquid, watery output. Within 6 weeks, I became very dehydrated and needed to be in the hospital for IV fluid, as I could not drink adequate liquids. Drinking more created a "cleanse" or "flush" effect, making things worse. Talk to your doctors about medication to slow down output as well as foods to thicken your output. I found that fruit purees (those with a lot of fiber (peaches/apples), peanut butter, marshmallows, oatmeal, etc.) will work somewhat. Also, try Greek yogurt (will add protein and cultures to help you heal). Right now you are healing. Have patience...it does get better.

Abefroman1969
Apr 11, 2022 7:21 pm
Reply to Little Lulu

Had not heard of the banana trick, thank you for that, I'll be getting some bananas this week!

Abefroman1969
Apr 11, 2022 7:24 pm
Reply to TerryLT

Does it start with F?

Past Member
Apr 11, 2022 7:29 pm
Reply to Abefroman1969

I'd put money on the fact that it does.