New ileostomy, a few questions

I had a resection on the 26th of November, last Tuesday, they were meant to remove a stricture but they found a big abscess they weren't aware of so it turned out to be a bit more complicated and I have a temporary ileostomy. It is a loop ileostomy and I have a few questions.

1: Excess gas; Lily (my stoma) is producing so much gas, like right now my bag is like an airbag, it inflates so much! My bag even has a filter on it that's meant to slowly filter out gas but woah she is queen fart a lot! Any advise? (p.s: I am avoiding all fizzy drinks, as much as I hate too as I <3 coke)

2: Bath/Showering: I'm not allowed to bath till Friday due to stitches, but I am very confused about what to do.. for bathing, they say you can bath with or without a bag on, I wouldn't want to bath without it, as if she was active I would get shit in my hair and stuff, but I'm nervous and slightly confused about bathing with it on.. I don't even know why but bathing with it on seems crazy to me? I could shower without a bag as it all runs down the drain so that's fine, it just confuses me.

3: Skipping: as its a loop, I have passed poop twice. I'm told its normal but I just wondered if there is anything to look out for? It was solid and I kinda broke a sweat trying to get it out, it wasn't easy.

4: Smell: nobody else really smells it, but I think my bag is kinda smelly. It has a charcoal filter so your not meant to smell anything but I do, and its not very nice. I have this fragrance spray but the stoma nurse didn't explain what to do with it. I was told light a match and apparently that helps? I dunno.

Plus any advise questions or tips are welcome, thank you xx

I'm glad you were mentally prepared for the possibility beforehand. Welcome to the loop ileo club. First let me start by saying EVERYTHING IS WHACK in the beginning. Your body is adjusting, stoma changing and so there may be no rhyme or reason for things at first but you will adjust and adapt over time.

1. Gas is a problem. Are you in a bag with a filter? They usually don't help much but some may a bit. Try to avoid soda, onions, garlic and any gas producing foods. Especially in the beginning you want to avoid fiber anyway as you are healing. Try to chew thoroughly and don't talk or sip a straw while eating so excess air doesn't get in

2. You can shower with or without it. The barrier should be strong and just wipe it good or blow dry after.

3. A little poop and mucus is normal. Your solid poop may be residual junk in there since surgery was so short ago. You won't be having poops like that going fwd.

4. For smell I just spray some fragrance around the bag or deodorant. If it's smelling while emptying just put some mouthwash in there without alcohol.

For the gas, try the Osto ez-vent. They allow you to help vent gas out of your pouch. You should be able to get samples from your ostomy supplier.

If your filter on the bag is clogged, it could be allowing odors come out. If your pouch comes with stickers to block the filter, put it on. Normally, your pouch shouldn't have any odor on the outside.

VeganOstomy said:

For the gas, try the Osto ez-vent. They allow you to help vent gas out of your pouch. You should be able to get samples from your ostomy supplier.

If your filter on the bag is clogged, it could be allowing odors come out. If your pouch comes with stickers to block the filter, put it on. Normally, your pouch shouldn't have any odor on the outside.

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Your confusing me a little now? I have the filter for the gas, as the filters purpose is to remove gas, which I think is similar to the vent you mentioned, yet you said cover it up for the smell? Sorry I'm a little lost.

Ki3 said:

Your confusing me a little now? I have the filter for the gas, as the filters purpose is to remove gas, which I think is similar to the vent you mentioned, yet you said cover it up for the smell? Sorry I'm a little lost.

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The filter built into your pouch is suppose to release gas and remove the smell of that gas (it's a charcoal filter), but as soon as it gets wet (from the liquid in your pouch), it not only stops working, but it can cause your output to seep through. I block my filter immediately after putting on a new pouch as it becomes useless in a matter of hours.

They work great with colostomies, when the stool is dry and infrequent.

I hope that makes sense.

I bath with my bag on, obviously as I do not want it to be active whilst I'm lying in the water. The only strange thing is that due to air/gas inside it, it floats. Apart from that it its completely normal. I shower with it off, as it feels AMAZING to have nothing stuck to me.

I suffered with gas a lot, and have found it is a lot worse at night. Talking to others, this seems to be really common.

Normally I pass mucous/stool like stuff about once a week/once every two weeks. I have been told that is also normal as your bowel still produces mucous etc and it needs to go out somewhere!

The smell gets a lot better. At first I thought mine was horrific, now it doesn't bother me at all. I use deodorisers if I am emptying in public. which I spray around the bag, and I also have some odour drops which come in so many smells (tangerine, apple, mint) which you drop in to the bag which means, when you empty it, what comes out smells of the drops!

i have had crohns for 26yrs and a stoma for 16 i find the filter bags to be more embarrassing then help. the others r correct once that filter gets wet it clogs and when its not wet it lets out the odor. it is normal in the beginning to have lots of air, after all they blew ur stomach up with air for surgery so it has to come out...it will get better with time..

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As you know, I'm in much the same situation, just a bit further down the recovery line (and my stoma is permanent).

1: Excess gas; Lily (my stoma) is producing so much gas, like right now my bag is like an airbag, it inflates so much! My bag even has a filter on it that's meant to slowly filter out gas but woah she is queen fart a lot! Any advise? (p.s: I am avoiding all fizzy drinks, as much as I hate too as I <3 coke)

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I've been drinking fizzy coke just fine. I do get gas, but what I eat/drink doesn't seem to be a factor. So it may be worth testing coke at some point - you don't want to be avoiding it for no reason! No idea how to reduce gas though.

2: Bath/Showering: I'm not allowed to bath till Friday due to stitches, but I am very confused about what to do.. for bathing, they say you can bath with or without a bag on, I wouldn't want to bath without it, as if she was active I would get shit in my hair and stuff, but I'm nervous and slightly confused about bathing with it on.. I don't even know why but bathing with it on seems crazy to me? I could shower without a bag as it all runs down the drain so that's fine, it just confuses me.

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This might depend on how predictable your stoma is. Mine is usually only active in the evening, so I can leave the bag off at any other time without worrying about any output coming out. But you'll be fine to bath or shower with it on.

3: Skipping: as its a loop, I have passed poop twice. I'm told its normal but I just wondered if there is anything to look out for? It was solid and I kinda broke a sweat trying to get it out, it wasn't easy.

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Strangely I don't even know what kind of ileostomy I have. I did pass stool twice in the days immediately following the surgery. Then clear mucus for a few more days. I have passed nothing through the anus for weeks now - not even gas. Which is something I greatly appreciate after years of bowel problems! I was told it's normal to have to pass any remaining stool in the days following surgery. Though the type of stoma may make a difference here. The anaesthetic can really slow your bowel down, as can morphine, so that might be why it was hard to pass.

4: Smell: nobody else really smells it, but I think my bag is kinda smelly. It has a charcoal filter so your not meant to smell anything but I do, and its not very nice. I have this fragrance spray but the stoma nurse didn't explain what to do with it. I was told light a match and apparently that helps? I dunno.

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The bag shouldn't smell if it's closed and not leaking. It should only smell when you're emptying or changing the bag. They gave me sprays too but I much prefer the air deodoriser/freshener I bought myself. I have one in each bathroom and give the air a squirt when I empty. I think I kind of got used to the smell a bit too. Like changing a baby's nappy - you'll get used to it!

Thank you all for the help, and I understand the filter thing now. I found a spray that I could put in my bag and that has helped the smell. Thank you for the gas advise, I was hoping people would say it slowed down, I'm hoping mine will.

I will have to try a little coke sometime, I am just so worried about ruining my remission chances and if I got gas pains it would scare me. Maybe ill wait a little while.

I drink coke all the time...and have gas all the time...lol Personally, it doesn't bother me, I just go and burp the bag and it's all good.

Oh my goodness, you are still in the very early stages of recovery! Everything gets better I promise you! I'm about to hit my one year with my loop ileostomy on Dec. 18th. I remember how freaked out I was a few days after surgery when I pooped "the old fashioned way". No one warns you about that! I guess there can be a bit left in the bowel from before surgery. I believe it happened about 3 times for me. You will continue to pass mucus that way though.
The gas will get better too. I drink fizzy drinks all the time now. You will be able to enjoy your coke again once you've recovered more.
Once you're gas sorts itself out you won't need to worry about using filters as much either. They probably aren't helping the smell. I always tape them over as soon as I put my new bag on. A bag can always be burped if it gets a bit too puffy.
Oh I almost forgot about bathing. I personally always shower and bath with my bag on. I've never had an issue. I shower everyday. I use a water proof tape around the edge of my flange just for the added security anyway.
You will heal, you will adjust. It takes time that's all. Be patient with your body and go easy on yourself. This is a huge change!

Thank you,
Especially about the coke, can't wait to try that again...mmm... can almost taste it...

I have a permanent ileostomy called Percy, he is 1.5 years old. I drink coke and lucozade all the time and don't really get much gas at all unless I drink it before bed and then I waken up with a ballon on my tummy

I always bathe or shower with my bag on as I just can't bring myself to do it without incase he 'goes', he is a temperamental little article!

Thank you,
I am allowed to bath tomorrow although I have to try and keep my dressing dry (kinda hard) and I think I will definitely have to keep the bag on, not even risking it without.

I'm so happy you all drink coke with no problem, I'm getting bored of orange juice and water :/

maimmie said:

Oh my goodness, you are still in the very early stages of recovery! Everything gets better I promise you! I'm about to hit my one year with my loop ileostomy on Dec. 18th. I remember how freaked out I was a few days after surgery when I pooped "the old fashioned way". No one warns you about that! I guess there can be a bit left in the bowel from before surgery. I believe it happened about 3 times for me. You will continue to pass mucus that way though.
The gas will get better too. I drink fizzy drinks all the time now. You will be able to enjoy your coke again once you've recovered more.
Once you're gas sorts itself out you won't need to worry about using filters as much either. They probably aren't helping the smell. I always tape them over as soon as I put my new bag on. A bag can always be burped if it gets a bit too puffy.

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This is a good point actually - I've been telling you my experiences but I'm still only six weeks since my surgery. So when I say I'm still getting gas, or whatever, my experiences may well still change as I have the stoma longer.

Inspired by this thread and curiosity, I tried bathing and showering without the bag. I showered yesterday morning, and had a bath this afternoon, so I avoided the evenings when my stoma is most active. It was great! No output, so it was all good.

I don't think anyone with a stoma should avoid showering without the bag, if you want to. Unless of course you don't want muck running down your legs, which is understandable. But everything does wash straight down the drain, so you'd be being cleaned continuously. The bath, I can see how this wouldn't work if you have an unpredictable stoma.

Thank you for trying, but Lily is very unpredictable and I think just because its my first time I will bath with the bag on. I am bathing this evening as I prefer to just before bed, so I will let you know how it goes. Had a leak at 6am but the stoma nurse came today and helped out and talked and stuff.

I love showering without a bag and airing out my stoma and rubbing some soap on him. He likes to feel so fresh and so clean. He likes to barf during the shower but the water rinses it off. I wouldn't dare sit in a hot tub or bath without a bag.

do the drops u put in the bag really work for odor..just curious have seen them but wasnt sure if they worked:grr1d:

Lisa everyone will respond differently. Some will help some and others do nothing. I personally find none of them work as well for me like water or mouthwash.

thx...i do the mouthwash too...didnt really think the drops would work any better...

Yeah maybe in future ill try showering without it.

For me the drops kinda work, kinda. Sometimes when I empty it I can't smell any output, sometimes I smell the drops, then the output comes as an aftersmell.

I like Hollister M9 drops, but I think I am in the minority. They are fragrance-free. I use twice as much as the directions say, but it really works for me.

Also, the odor will decrease significantly over the next 6 months.

Hey can I crash this thread as ask a question? I have a new temp loop Ileostomy and I realise a few poops can still happen but I have a real tight stricture at the rectum an I feel like I need to dump but nothing! The doc gave me an oil enema but still nothing. Making me sad coz when i try to push just feels like I'm busting stitches. Also I'm in a lot of pain. I love my anemone but it is bloaty even though it works. Does it get better? It is only 3 days old so pain I guess is normal but I'm so so tired of being in pain.

You're only 3 days in...things are going to be painful and swollen. Your stoma will eventually shrink down, it usually takes about a month...and you won't be in pain for very long. If I recall, I was only on pain meds for about 4 days and then I was fine (and I had open surgery). You'll feel the urge the go out the back way for a bit if they didn't clean you out during your surgery. You'll also likely have mucous come out back there on occasion as well. I wasn't told that after my surgery and it surprised the hell out of me! lol Once everything settles down, you won't even notice you have a stoma. It gets better, trust me.

It's normal to have the urge there but don't push and strain otherwise you may further aggravate your stitches. Try to take your mind off of it and adjust to the new way of pooping. Residual mucus and poop will make its way out but you shouldn't have to force

On the complete other end of the scale, is it normal to feel like your getting urgency? It sounds weird but sometimes I'm just sitting down then I'm like "I'm gonna shiy my pants" but then I'm like wait that's not possible... I never do obviously but I genuinely feel I'm going to shit myself!

Ki3 said:

On the complete other end of the scale, is it normal to feel like your getting urgency? It sounds weird but sometimes I'm just sitting down then I'm like "I'm gonna shiy my pants" but then I'm like wait that's not possible... I never do obviously but I genuinely feel I'm going to shit myself!

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It's called phantom rectum and many get the urge to go but it's psychological. The body doesn't realize what has happened and for some they have this and learn to ignore it and overtime it may go away. It's harmless.

It's kind of weird, but I never had the urgency feeling until recently (probably the last 6 months)...and it seems to coincide with having to have a bowel movement in my stoma. I just ignore it and wait for the poop to appear...lol I've had my stoma for over 4 years and I'm not sure why I'm getting the feelings out back all of a sudden. Weird.

Ki3 said:

On the complete other end of the scale, is it normal to feel like your getting urgency? It sounds weird but sometimes I'm just sitting down then I'm like "I'm gonna shiy my pants" but then I'm like wait that's not possible... I never do obviously but I genuinely feel I'm going to shit myself!

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I get this, even 2 years later. I also get rectal spasms a lot that are different from a feeling of urgency, though.

I also get rectal spasms a lot that are different from a feeling of urgency, though

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I get spasms too. I never feel the urge to have a bowel movement at all, but every now and then I get the feeling that I'm going to pass wind, followed by a spasm. I never actually do pass wind of course, and the spasm isn't painful or uncomfortable, just a bit unnerving.

Before the ileostomy I had had a lot of wind since becoming ill, and it was always so horrible having to try not to pass it and avoid embarrassing myself. Now I get that feeling, and, if I'm in company, start to have a minor panic trying to hold it in, then I realise and think - oh yeah, I don't pass wind anymore. It's not the attempt to hold it in that causes the spasm though; even if I'm not in company and so not trying to hold it in particularly, the spasm still occurs. I get this maybe once every few days or so. It has no relation to when wind passes through the stoma either. Just another stoma mystery. :confused2:

oh haha its so weird! It scares the hell outta me im like "WHAT IS THIS. IM NOT MEANT TO BE POOPING WHY DO I FEEL THIS WAY"

haha it gets me every time.

Mine's an end ileostomy and not a loop, but every so often I get an urge to go. It passes after a few minutes, but every couple of months I need to pass mucus and every time I do it feels like the biggest poop of my life, and I've never passed more than half a teaspoon in volume.

Haha same! Mines a loop so I got skippage the other day, scared the hell out of me! Though it was a usual poocus (mucus poop lol) but nope it was poop! Havnt done that since December!

New question, maybe tmi? We passed that a while ago haha!
Felt the usual "phantom rectum" but a lot stronger, I was considering going to the toilet, but then I farted. Like the butt way. I didn't even know that was possible with an ostomy.

Tbh I guess it's nice, didn't get a bag full of air. Haha.

Ki3 said:

New question, maybe tmi? We passed that a while ago haha!
Felt the usual "phantom rectum" but a lot stronger, I was considering going to the toilet, but then I farted. Like the butt way. I didn't even know that was possible with an ostomy.

Tbh I guess it's nice, didn't get a bag full of air. Haha.

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I've never had that happen. I really like how I never fart now, ever; I'll take a blown-up bag instead any day. I thought it must be impossible since I've now been five months ( time's going quickly! I still think of ostomy as very new!) without ever once farting. But apparently that's not always the case?

I haven't farted since ileo, though I feel like I will from time to time. I love saying "I haven't farted in 2 years."

Haha! It was hilarious at the time, it was like 4am I was lying in bed and I farted and I was just laughing away like "havnt done that for 4 months!

I do that as well. My rectum is in tact and is still a living part of my body, the membrane produces mucus,and there is still "movement" so to speak due to the smooth muscle in the GI tract. Most of the time when I have urgency now it's due to to some gas.

My rectum is intact and I have a loop ileo. Pass lots of mucus multiple times a day, but never passed gas.

Oh weird haha! I remember at first I was unaware about the mucus and thought i was pooping white. Like poop ghosts. Haha

Poop ghosts haha. I had so much mucus first few months but now it's not too much. I do miss farting and not having my bag fill up. I don't miss the smell though and now I can prepare for the awful smell when I open the pouch.

I never pass gas or mucus. I passed mucus about once a day for the first few days immediately following the surgery - which was completely clear, not at all white - and then that quickly stopped and nothing at all since.

wow lucky! I get a poop ghosts visits every 3 days or so.

Ki3 said:

wow lucky! I get a poop ghosts visits every 3 days or so.

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Still having to pass mucus or poop was one of the reasons I put off having an ileostomy - I figured there wasn't much point if I was still suffering from all the problems of pooping the regular way as well as having a stoma! So I am so pleased that has been a complete non-issue for me. I have no idea why that should be the case though!

UnXmas said:

Still having to pass mucus or poop was one of the reasons I put off having an ileostomy - I figured there wasn't much point if I was still suffering from all the problems of pooping the regular way as well as having a stoma! So I am so pleased that has been a complete non-issue for me. I have no idea why that should be the case though!

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For me, mucous poops are NOTHING like what I went through prior to my ostomy. The pain I used to have just trying to go was excruciating. The mucous just comes out and is totally painless. I'd take a mucous poop over regular ones any day! lol

Slightly off topic, but thinking about phantom poops and passing mucus it made me realise that since I got my stoma, I've not been reading nearly as much.