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GoatHerder
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I didn't get much post stoma formation help after my surgery, just a kit of various products to try and hopefully find something that worked. After going through what the hospital sent me home with, I started getting samples from all the manufacturers and found that with my hernia, a convex 2 piece system was best for me. (many many leaks for the 4 months before I figured that out!)

My best leak story though, happened just a week ago:

I'm in a wheelchair, but can stand with some work and walk a few steps with a cane.

I had just exited my chair and had put it on my trailer hitch mounted wheelchair carrier, and turned around to hobble towards the drivers seat.

I took a single step, and my bag unsnapped from the skin barrier and slid straight down my pant leg and onto the driveway.

As I stood looking between my feet at my 1/4 full bag, I completely lost it, laughing my head off!

I got back in my chair, went back in the house still laughing, my wife now wanting to know what the joke was. I raised up my bag and she too, broke out in hysterics.

Needless to say, a shower and appliance change were a top priority before finally getting to head out to the feed store, my original destination.

Moral of the story, Don't take yourself seriously, life is better that way!

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


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VeganOstomy
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At home: It happened early on in my ostomy career and when I was using Coloplast 2pc bags, which needed to be locked in place after attaching them to the wafer. 

I had done an appliance change and went downstairs and felt something strange under my shirt. 

Well, I must not have locked it properly (or at all) and the bag fell off me! I'm lucky that it didn't make much of a mess (or any from what I recall) since I had just changed my appliance, but that was for sure a "what the hell?" moment!

In public, I would say that a leak I had while in South Africa was a heart-stopper:

I wrote about the experience (with a photo of the leak) in this blog post but let's just say that I did NOT have my emergency supplies with me and I was at the opening ceremony for an ostomy convention that I was a speaker at! 

I had gone to use the bathroom after feeling pressure around my stoma. When I went to assess I had discovered a blowout and had a bit of a panic before packing the appliance area with toilet paper, leaving the convention center, walking back to the hotel, and getting cleaned up. 

That was a huge learning experience for me, but I lived through it. 

 

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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GoatHerder
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@veganostomy Love it! In my case, because of M.S. my hands are very week, and I just didn't get the bag fully snapped on.

Being in a wheelchair at least gives me a nice rear-seat pocket to keep spare ostomy supplies in. I further keep a second kit in my car.

Edit: Enjoyed your SA trip blog post by the way.

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


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SqueakyandLiza
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@goatherder

Oh goodness, I have a lot of leak stories, but probably the best (most embarrassing) was pretty recently. I had surgery in October. We went for my 2 week follow up. I checked my bag in the elevator and everything looked fine. We had to wait about 20 minutes once we got back to the exam room. When the 2 surgeons and 4 other doctors (this is a teaching hospital) came in, I got up on the table and raised my shirt and pulled down my leggings so they could look at my abdominal wound and I had had a major blowout. It was so gross. All over my clothes!  So the doctors were cleaning me up so they could uncover my wound. Luckily we had brought my emergency kit so my husband helped me change the ostomy (I’ve never done it lying on an exam table without a mirror 😂). Unfortunately I did not have a change of clothes so I had to wait there mostly undressed for about half an hour while they found me some scrubs to wear home. It was sooooo embarrassing!! I learned my lesson though that I need to always have a change of clothes in addition to my emergency kit. 

Oh, by the way the doctor is 3 1/2 hours from where I live. Luckily we were staying the night with my mom and I had a change of clothes at her house. 

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


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GoatHerder
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@squeakyandliza Ah, emergency clothes. Yes I'll be throwing something in the van tomorrow. Thanks for that tip! (I'm a hermit, rarely leaving the farm but do find myself out at least once a week.)

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


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GoatHerder
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Actually, my wife just reminded me of another great leak story. I was out in the barn doing some welding. Being lazy as it was just a quick weld job, I didn't put on any protective gear except my helmet.

Well folks, I had a blob of molten metal splash into my jeans, and completely melt the front of my  bag!

Needless to say it was full, so I was a mess! 😁 😁 (my output is near liquid, kind of like the consistency of yellow mustard.)

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


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LK
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@veganostomyveganostomyEric...FYI, your spinach wrapped rice is called Dalmos, those were actually Grape leaves.  Some versions are Spanokapita. All very tasty. Such a well done informative video. I felt like I was on a mini holiday! Beautifull pictures!  Thank you for sharing once again! 

Linda


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LK
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@goatherder...ugh! What a topic!! lol!! I have had a few but the worst I think was when I had not seen my parents since my hubby had passed away, about 8 months & while visiting, I took them out to dinner one evening to White Rock B.C. you may have seen the story of the trashed Pier after a nasty wind storm about 2 or 3 years back. Such a lovely pier all reconstructed & lit up and is  Canadas largest known Pier, 470 mtre. long if I remember right.  We had a lovely time & dinner was awesome, but,  my Dad took a country road on the way home. It was very bumpy & dark as it had been raining. We got thru the door & the three little dogs amazingly ignored my parents & were all over me as I sat to remove my shoes!!  Such a lovely welcome home I thought!! lol! I removed my coat & well... the fumes hit the air!! I did not know about M9 at that time. Very deep sigh!! Looking down, I was drenched & a real challenging mess under my clothing. I don't normally have  to cut myself out of my underwear but I did that night. I had cleaned up my clothing & sprayed it all down with a product we unfortunately can't get anymore, due to owners retirement. It was a disinfectant multipurpose cleanser. Something I used while camping & very kind to our Earth.  It was called Spray Kleen. I actually carried a small bottle of it in my emergency bag too.  Bless my mothers heart, she collected my clothing before my shower & got my clothes in the laundry asap!! Not one stained remained on my clothing & we both were very fresh smelling afterwards! lol! The proof was with the dogs when I went back downstairs! 

Tip...I have had blowouts at home that were from very thick output & learned to carry a white plastic putty scraper in my emergency bag because sometimes you have to save your clothes too!! lol!

Come on folks... fess up! lol...whats you worst moment with a leak?? We all likely are one! 

 

Linda


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GoatHerder
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@dlkfiretruck So sorry for your loss. Great leak story though! Scraper is an interesting idea, though for me, if it's really bad, all over my clothes, I just take them into the shower with me and rinse them off. Thankfully, no bad leaks like that while not at home.

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


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LK
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@goatherder.. yes, I felt lucky it was not discovered in the restaurant as we were there till almost closing time. I'm not sure they would have been happy with me!! lol.

Thank you , my hubby died from pancreatic cancer about 5 months after my ileostomy. He was diagnosed very early boxing day morning, about 3 a.m. & while visiting 4 hours from home & at my parents for Christmas. He was admitted about 10 p.m. Christmas day with gall stones and they did an MRI that night. I was only out of the hospital after a lengthy year long stay from malnutrition & released in October that year. I did battle my thoughts that maybe my illness had given him cancer for all the worry & travel I felt I had caused for him. It was a very challenging time but by the grace of God we all got thru it sanity intact, or so  we like to think. lol .  We did feel somewhat blessed because my hubby lived a short year & 5 months after diagnoses of stage 4 cancer. We were told 3 to 6 months.  What a learning & leaning on God time in our life. Psalm 91 : 4 & 5. 

I tell you all this part of my life because His only symptoms were occasional upper back pain & Gall stones about once a year for 3 years.  Though that year it was twice. Everyone, If you have these symptoms it never hurts to have your doctor clarify this for you. Please. 

Linda


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Rick
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My grandchild loves to target my stomach with arms and legs flailing..waiting for just the right targeting..


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GoatHerder
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@rick Yup, my goats do it too, that's why I made myself a hard plastic stoma guard!

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


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LK
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@rick...my 14 month grand has taken to trying to discover what I'm hiding under my clothing that now rattles where it never did before! With what I call the covid plastic change, I do not notice it as readily, but almost every time I get to be with her she's lifting my shirt & trying to pull at my pants!!  The other day I was on the phone for a short call & she actually succeeded enough to see the top of the pouch. I was so worried it would possibly traumatize her if she saw the rest! lol...but the little doll just stared at the top part now sticking above my waistband.  As i quickly said goodbye to my Mom, she looked me in the eye & poked my tummy with one finger hiding it there!  Her face was so accusing I actually felt guilty!!! As it was my pharmacy had an hour previously  delivered 2 new boxes that wee on the table in front of us so I quickly opened one & gave her a new clean pouch.  She took it & settled on my lap & kept making it rattle & saying in her own way... pretty!! Which sounded more like "pitty".  Since then, she's ignored the rattle!! lol! 

When she's old enough I have no intention of putting her off should she ask questions as I think its a very good teaching time for a child. 

Linda


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SqueakyandLiza
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@dlkfiretruck

If anyone is going to be non-judgmental and not traumatized, it is probably someone that young. She probably wouldn’t realize it is any different from anyone else. Plus she wears a diaper, so it might seem logical to her. 😂

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


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LK
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@squeakyandliza...oh Liza!! I so needed that laugh tonight!! Thank you! Unfortunately her diaper plastic is a million times quieter then my new pouch is, so she has one on me! lol!! . She was never drawn to investigate before. Come spring without the layers of clothing...I'm so embarrassed & humiliated enough by it already.

Anyone just joining this is related to the forum...

Noisey, krinkly Hollister pouches. 

Linda


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zhtfreak
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I have two.

 

One day when I first started school our class was having a party for someone's birthday. As soon as I started eating my cake and ice cream my bag burst, making a huge mess all over me and causing all the other little kids to wonder what was going on. My teachers didn't have any extra supplies on hand since my mother didn't expect that to happen. All my teacher could do was take me to the one who emptied for me; she just looked at the bag and saw how much it was leaking. Not the craziest story in the world, but extremely embarrassing for a three or four-year-old.

 

Later on I started using clip closures on my bags which, as I'm sure most of you know, would come undone every once in awhile if it caught on my pants. That usually happened at home and sometimes I was able to grab the bottom of the bag to minimize the leak. Then I could just get my mother to empty it as usual and jump in a quick bath to get cleaned up.

 

Well, of course this had to happen once when I was not at home because that's just the way stuff happens. lol I was spending a long evening at my grandparents' house and the clip came off my bag while I was changing into my PJ's. No one there knew how to help me with my ostomy, so I had to try as best I could to talk my aunt through how to empty it and then get cleaned up - I was only around eight years old at that point iirc.

 

I don't think I could laugh at those kind of embarrassing stories, although it's good to know that we all have them.

 

Brian


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GoatHerder
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@zhtfreak My first bags were the clip style. I learned to hate them quite quickly!

I can't imagine the stresses of having an ostomy as a youngster, thanks for sharing that!

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


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zhtfreak
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@GoatHerder

 

I no longer have my ileostomy, but yes having it all through childhood was difficult at times and actually pretty traumatizing, though I didn't find that out until the beginning of 2018. That's actually what led me to this forum.

 

Like you, I have another disability in adition to needing the ostomy - in my case not being able to see. So as not to create a long post on this thread, you can look up the introduction topic I put up.

 

I didn't mind the clip style bags, but then again they were pretty much all I knew - this was back in the early 90s. Before that when I was as young as I can remember, the bags I used were held closed with an elastic, which i don't ever remember falling off. It seems like now there are many more options for pouches than there were when I had mine, but it's hard to get an idea how they would work just reading about them online. I posted a topic looking for info as I would like to try to put together some information that could help another blind person manage an ostomy. Hey, if nothing else it would give me something more productive to do while I wait the few more months for the vaccine to trickle down to where I can get it.


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john68
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Hi Folks, been watching this topic with curiosity. It’s always strange how one appliance suits or appeals or is a downright fail or nuisance. I have always used a bag with a clip for 26 years and I like it and it’s never came off. Now that brings me to my leak story. I changed my appliance got dressed left for work and was driving for about 10 miles when I thought I smelt something! Well I live in the country side so hey it’s likely a farmer spreading manure. Another few miles and I felt a tickle. First thought was crap I have a leak so pulled over. Had a look 👀. I did have a failure but it was because of the clip!! Which was still back home sitting on the washbasin! I hadn’t put it on and by luck no output just a little thick movement. I had a clip in the glove box and apart from a small stain and feeling like a right royal Pratt I was back on the road again. 

Lesson learned put the clip on the new bag first. Ladies and gentlemen I rest my case 😁

ileostomy 31st August 1994 for Crohns


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Tony
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Hi all,

 

here’s mine. I was still in the hospital and still needed help emptying, being totally blind and also thoroughly drugged and unable to get out of bed due to terrible muscle weakness.

 

So, my bag had been filling with output including gas. I hit the call button and asked for help emptying. No one came for a while, maybe 10 minutes, so, like a typical Dilaudid-saturated patient, I fell asleep. When I woke up, the bag was pretty inflated, so I hit the call button again and asked for help with a word of warning about the state of my bag. No one came. I fell asleep again. When I woke up the bag was extremely firm with gas. I called again with a much more emphatic request.

 

Someone came, but it was too late. The nursing assistant couldn’t immediately find a recepticle to catch the output. Just when she did ,the pressure became too much, and the bag pealed explosively on one side, sending poop everywhere: On my abdomen, my hospital gown, the sheets, the floor, the bedframe, and down my right leg almost to the knee.

 

The nursing assistant cussed in an expression of intense dismay so loud and heartfelt it was downright comical despite the language. It took two nursing assistance, nearly 10 minutes, and several ruined towels to get me cleaned up so they could put on a new bag and change the sheets. They must have put something in my chart because for the remainder of my hospital stay every time I called for help emptying my pouch someone came almost immediately. The most ironic part of all this is that by the time the bag blew I had stopped having output. When they left the room after the cleanup job and bag replacement was done, I let out the laugh I had been holding back and said to the empty room, “I tried to warn them. Live and learn.” LOL!

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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