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Alida
(@alida)
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Hi all,

My name is Alida and I got my colostomy a week and a half ago.  I have so many questions and I'd love to have someone with experience to ask them.  

With Squiggy since 3/31/21


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SqueakyandLiza
(@squeakyandliza)
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Welcome Alida,

You are in the right place!!  There are so many people here who will answer your questions, so start asking them!!  😀👍

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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LLNorth
(@llholiday)
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Hello, Alida, and welcome! There is a lot of great information on this website - you can learn much and meet wonderful people, too. Life is better with VO! LL

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


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Alida
(@alida)
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OK!  First question: I was telling the ostomy nurse that I could smell my stoma bag and she told me that everyone smells their own, but she didn't smell anything.  Which makes no sense to me.  Has anyone else experienced this?

Second question:  I've heard of people tucking a bit of essential oil in the pocket of a stoma wrap/bag cover to combat smells.  Again, does anyone have any ideas?

I'm looking for all the tips/hints/advice I can get!  I'm kind of terrified to go outside because my bag might explode and swallow the earth.

With Squiggy since 3/31/21


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Robert
(@njewell1)
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Hey Alida you are in the right spot for sure . I have had my Ileostomy since 2016 . I have learned a lot here with Eric's site (VO) and the help of everybody on here . Good luck to you  . 

Subtotal colectomy , Ileostomy , Ulcerative Colitis


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GoatHerder
(@goatherder)
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Hi Alida, welcome!

I've always been certain that I can smell my own, but my wife and friends assure me that they don't. I have never once in the 6 years I've had my ostomy, had anyone ever comment about an odor coming from or around me.

As a goat farmer, I did once have a 90 something lady ask me what that familiar smell was when I passed her though. I told her goats and she choked up and told me of her time growing up on her parents farm. Smells are powerful memory triggers!

Retired engineer, now goatherd
Ostomate since 2015: Mid transverse after cancer
Our goats always live at GoatsLive.com


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Tony
 Tony
(@ileostony)
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Posts: 239
 

Hi Alida, and welcome. You’ve struck gold by finding this site!

 

I’ve asked my wife about the smell before as well, and she has never said she can detect it even when I can. She would discreetly tell me if it were a problem. Your experience may be different, but if your nurse isn’t able to detect it either, then it’s probably really not as much of an issue for others as it is for you. Of course, if you do find it bothersome for yourself, that’s certainly valid. 

 

Again, welcome. I like to say that this community is a haven. I’ve never found any online resource as useful or as friendly as VO, with its multimedia content and circle of super awesome people ready and willing to support each other.

 

If you’re interested,here’s my introduction.

 

Be well.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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LK
 LK
(@dlkfiretruck)
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@alida...hi Alida  so nice to meet you! I'm Linda & I'm 63, I live in B.C. Canada. I've had an ileostomy 12 years. Your new normal is well on its way to showing you all that you can still do and more. I learned quickly that I was the one who set my limits, not my stoma. 

Though an Ostomy may feel overwhelming at first,  everything will settle down soon enough. Be patient with yourself, get the rest your body tells you it needs & drink those fluids. I found after any surgery the best I could do for myself was to get moving & go for a walk no matter how tired I was.  After my ostomy, I tackled one driveway distance everyday sometimes 2ce. I'm convinced I healed better because I was able to get out & walk. Please don't worry, the earth won't swallow you up & your pouch will not  explode because you've gone for a walk. If it helps, there are C Shaped tapes that you can add for an extra edge around your pouch wafer tapes in order to give you a little more security.   As far as you pouch exploding has it bulged with gas for you?   If you find thats an issue later on you can add little vents to it to allow you to open & release the air without having to lay down & open the end of the pouch at the mouth to let it out.  Hollister Is amazing at sending samples of things to try to make your journey easier on you. Just ask for what you would like to try. 

I think every single one of us have thought or asked if we smell.  I think because the output is now in front of us verses behind us that we are more sensitive to a possible smell. No, you do not stink, but if you have a dog they will let you know if you develope a leak though. lol! When I 1st had my Ostomy, we had 3 lap size dogs. Not once did they sniff me for a smell until I had a leak & I was unaware of it. lol!

There is a liquid Deoderant called M9 that Hollister sells that you can put several drops of into you pouch to neutralize anything in it. I found it worked better then any essential oils or...?  Depending on where you live I can tell you a phone number where you can purchase this item at a lesser cost then a pharmacy will charge you for it.  Shipping is free after 30 dollars & they even sell the Osto EZ Vents as well for letting the gas out if it's a troublesome issue for it.  

Are you home from the hospital yet? I hope you have good support at home from those you love. Once home sleep with a towel or something beneath you until your confidence is built up about possible leaks at night. Feel free to ask anything else and know we are here for you! Be as well as you can be!! 

Linda

Linda


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LLNorth
(@llholiday)
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@alida Like many, I use the M9 deodorant drops and find them to be really effective. A bottle lasts me about a month; I use a little every time I empty, and when I change the pouch. Really, before I tried the M9 drops I was so worried about odors - I had been using the Adapt lubricant, which doesn’t do the trick for me, and also many little hacks - Tums, tic-tacs, baking soda - but they just weren’t very effective. Thought I would try the M9 - I was not able to get a free sample so took a chance on buying a bottle for myself (about $25) and it was well worth it. My insurance now pays for most of this, now, but I bought a couple more bottles on my own to keep ahead of things, so always have two bottles in the closet. The M9 has done so much for my self-confidence.

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


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Alida
(@alida)
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Oh my gosh, I feel so welcome here.  Thanks!

So, I'm 58 and I live in the Tacoma area.  I didn't go through all the horrible struggles that so many of you have experienced; a prior surgery left me with fecal incontinence.  I had laprascopic surgery on the 31st and was home on the 3rd.  Because I am who I am, I over-did activities for a couple of days until I hit a wall.  I'm now committed to staying home and resting and asking my husband for things.  

I've been seeing a WOC twice a week to help me with changing the bag, etc.  I freaked out a little today when the seal broke away from my skin and I realized I had to change it myself.  Yes, my heart was pounding and my hands shaking, and yes, I think my pants got a little bit wet, but I DID IT!

So I'm still on light pain meds and I'm using ice packs.  I'm still trying to figure out why my bag balloons up, and I'm still amazed at the noises that are coming out of me.  It feels like a baby moving inside me.

With Squiggy since 3/31/21


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SqueakyandLiza
(@squeakyandliza)
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@alida

I’m your neighbor across the state in the Tri-Cities!!

I’ve had problems recently with the ballooning. I would recommend keeping a journal of what you are eating as see what foods cause this. I also have noticed that it happens more at night for me. When I left the hospital someone gave me some information about what to avoid eating and some things that would thicken or thin out the output. The list also included a list of things that may cause bloating/gas. From what I remember, soda, chocolate and some produce items were on the list. 

As far as the noises, my stoma has earned his name, Squeaky. He makes some pretty cute noises. The other day he sounded just like R2D2 from Star Wars. 😂

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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john68
(@john68)
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@alida, Hi and Welcome, I echo what has been said already. Getting to know your stoma and how it works and watching your skin with each change how it’s doing. Little things make a big difference 😀

ileostomy 31st August 1994 for Crohns


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ChrisandBagpus
(@chrisandbagpus)
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Hi

Its quite common to have a lot of unanswered questions.

I because I was recovering and had a lot of time resting I binged watched all of Eric video's and learnt a lot. I was within days directing the stoma nurse to supplying me with a selection of different products, some bags leaked quickly, some cause skin rash and itchiness etc. eventually you will settle on the ones that work, but remember your stoma will change a lot in the first few months. Your body will have to do things a whole new way

 

Colostomy Jan 2020


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dogtalkerer
(@dogtalkerer)
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if you smell your bag, you smell your bag, plain and simple- no dog needed.  .   I often change the bag when it smells too much. I don't think I've ever had a new bag smell though. but 3-4 days of use and it will start to stink. I do get a weeks wear often as well.  the plastics aren't 100% consistent, they will vary.  what we eat effects stink as well. 

take your undershirt off, smell the shoulder area, then the area that covers the bag.

if you know a chemist, ask them if thin plastic films are porous.

all bags aren't the same, hospital bags tend to be economy quality.

I use the Coloplast Sensura 1 piece, I too have a colostomy & am 58yrs old.


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glenn.giroir
(@glenn-giroir)
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@alida

Hi Alida!  Welcome to a great site with a wealth of information from many, many wonderful people.  I remember my first bag change.  It was so nerve-wracking.  You'll be a pro at it before long.  

As for the smell of the bag, you may smell it and no one else does, but there are things that really work if you want to get rid of smell altogether.  I've found the blue deodorant drops to be best.  The first time I used them, I was amazed that they REALLY get rid of odor.  They are not perfumes, they just make the stuff smell pretty much like nothing.

M9 and Safe n Simple are best for me.  I get almost complete odor elimination with about 15-20 drops per bag empty.  That normally makes one bottle last about a month or longer.  I personally use Safe n Simple because it is less expensive and works just as well as M9 for me.  I have an ileostomy, and my bag empties can really smell pretty bad (very much like sulfur) without any deodorant.  This stuff has made me feel a lot better about things.  I'm not sure how they work with a colostomy - maybe someone else can let us know.  Best wishes, and again, welcome!

Glenn

Ulcerative Colitis (1995)
Permanent Ileostomy (2019)
Doing what it takes to enjoy life to its fullest.


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glenn.giroir
(@glenn-giroir)
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@llholiday

Posted by: @llholiday

The M9 has done so much for my self-confidence.

I feel the same way.  I tried so may things, but the first time I tried M9, I was amazed that it really just kills odor.  No perfume, just no smell.  I now use Safe n Simple (about half the cost of M9) and it works just as well for me.  Almost the same stuff, as far as I can tell.  It's a bit more green than blue, but works.  My insurance covers this stuff, but I have to work through my deductable first, so I go with the least expensive option.  Cheers!

Glenn 

Ulcerative Colitis (1995)
Permanent Ileostomy (2019)
Doing what it takes to enjoy life to its fullest.


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Lynne
(@lynne)
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Welcome Alida!


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Tigerlily
(@tigerlily)
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Hi Alida,

 

Glad you found this site. Like everyone before me has said, you will find a wealth of information here, and lots of good people willing to help if they can. I have had a colostomy for 5 1/2 years, and no one has ever commented on a smell. There are times when I can smell it, and that’s usually a sign that it needs to be changed. I don’t use a pouch deodorant, but there are certainly products you can use if you want to. This is a good time for you to try lots of different products. All the ostomy supply companies will send you free products if you ask them, so try lots of different things and then you can decide what works best for you. 

Your comment about your bag exploding and swallowing the earth made me laugh. I think most of us have had the same fear at some point.😆 And yet, it has never happened.

 

Laurie

Just a semicolon


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Varg55
(@varg55)
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Hi Alida,  First of all welcome to the site.  I well remember feeling like you do as a newbie, which was about 16 months ago.  I had an emergency colostomy and was feeling pretty overwhelmed and unsure of myself.  The members here will help you with all your questions and also provide much needed support to help boost your confidence.  There will be some trial and error, but you will master this!  One thing to remember is that there are no stupid questions.  I am far from being a pro and am still learning but I feel a lot more confident in my ability to handle situations as they arise.  I've had to adjust more than some as I've had two further surgeries and still have one more to go.  I went from a colostomy to a loop ileostomy and my next surgery will be for an "end" ileostomy.  Hopefully your colostomy will be your one and only surgery and you will be a pro in no time.

It's interesting that the subject of smell came up today as I just spent a mostly sleepless night due to being nervous that I was about to have a leak.  I could smell myself and kept getting up and checking myself.  Everything was fine but the fear of a leak kept me awake.  Smelling myself is not normal for me and like Laurie, in the past it has meant that I needed to change my appliance.  With the pouch that I have been using, a one piece Hollister, I have never smelled myself.  The pouch I had on last night was a two piece Hollister and I've found that the wear time is reduced and I often would smell it around the third day.  I was wearing it because I wanted to use a barrier ring to address a skin issue I've been having and the ring with the two piece Hollister worked well to clear up my skin before.  You should experiment with lots of different products to find out what works best for you.  Don't be shy about asking the suppliers for free samples. 

You may not have experienced a leak yet, but it will happen, and the worst ones happen at night.  Having a lot of gas build up can cause a leak as the air has to go somewhere and eventually the seal around your stoma can loosen.  You can get pouches with air vents but they have their own issues.  The best thing is to be prepared.  Until you find a system that you feel secure with, that you are sure (or as sure as you can be) won't leak, I suggest sleeping with something under you.  I use those blue and white pads/sheets that they have in the hospitals (here in Canada anyway).  I know ostomy supply stores usually carry them but I got mine through Amazon.  They will protect your bed and give you piece of mind!

Good luck!

 

Terry

 


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ChrisandBagpus
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I just re-read that your one and half weeks post op.

I remember the first few weeks the smell was lets say far from nice ;-( The other guys on the ward I think day 5 or 6 nearly all past out :-) and the stoma was still healing so had lots of bag leaks. So hopeful it will settle down more.

Chris and Bagpus

Colostomy Jan 2020


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