Life With Ostomy

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One day at the age of ten, I went to the bathroom and it felt like razor blades were coming out of my anus. At the time, I thought it was because I had pushed my heel into my ass to put off going to the can while I sat in front of the TV getting really high scores on Tetris. But after a week or so of these really painful shits, I realized the situation was getting really serious. But I still thought it was my fault, and it was so embarrassing...

I told my sister in private. She threatened to tell mom if I didn't. So I told her I would, but I never did.

A good year and a half went by, during which there was way more wrong than just feeling like there were razor blades coming out of my ass. Thick, dark blood was coming out with the poo. The poo became really stinky. I totally lost my appetite -- in fact, I started to gag every time I swallowed unless I took incredibly tiny bites and carefully chewed about twenty-five times before slipping the food down my throat. My abdomen was almost always distended, and it usually hurt. Every night it took me about an hour to eat dinner, even though I'd never finish what was on my plate, and after eating I would invariably be hunched over in pain. I also became so emaciated that my bones were poking out all over my body and I could grab my ribs and slip my fingers at least a couple of inches underneath the rib cage. It was a pretty cool attention-grabbing trick I could show my friends, who took me less seriously as time went by since I was not as mentally, physically, or socially alert as they had known me to be before.

By the time I was twelve, I weighed fifty-five pounds. I would have to fold up toilet paper and slip it between my ass cheeks in between desperate trips to the washroom to unload because there was always leakage between shits. Shitting -- and finding places to do it without people noticing -- completely consumed my consciousness. I had a stash of soiled underwear that I kept hidden in a drawer because I didn't want my mom to notice when she did the wash that I had shat myself.

I saw two different doctors during these secretive times. Neither one realized I was lying when I said my bowel movements were just fine -- they just figured I was anorexic.

It was only after I was diagnosed with Crohn's Disease at the age of twelve that I started to understand the anatomy of my digestive tract; and over the course of many years it became clear to me that none of this was really my fault and that I wasn't the biggest freak in the world just because I was shitting blood and because when I stuck my finger up my bum, all I felt was raw, bloody flesh.

In 2002, at the age of twenty-two, after all kinds of health complications, invasive procedures, drug therapies, and an adolescence that was both joyous and fucked up on many fronts, I had ileostomy surgery. Today my digestive tract ends with my ileum, the last part of my small intestine. The last inch or two of my ileum was pulled through a little hole in the lower right quadrant of my abdomen, turned upon itself like a turtleneck, and sewed into the skin of my abdomen. The part of the intestine that sticks out is called a stoma, and out of it comes a more or less constant flow of excrement, since there is no sphincter or any other way of controlling output. Every week or so, I put on a new flange, which is a round disc, sticky on one side, with a hole just large enough for my stoma to come through. Then I clip a bag that collects my poo on the flange. The bag can be emptied while I sit on the toilet through a very intelligently designed drainage mechanism at its bottom. (Editor's note: Here are a bunch of pictures another ostomy patient has posted online.)

When my surgeon formed my ileostomy, he also removed my anus, my rectum, and my large intestine. I asked, but I was not allowed to take any of these home with me, even if they were steeped in formaldehyde and permanently sealed in a big jar. But in exchange for these expendable body parts, what I did get was a bunch of interesting stories, and a perspective on life that I probably wouldn't otherwise have. I also finally got the chance to live without pain.

In March of 2006, I started a personal blog to share some of my stories and thoughts on life with an ostomy. I also write about some big questions related to life with an ostomy that I don't have the answers to. The blog is part of an ongoing self-reflective process for me, but I'm increasingly finding that it's a useful resource for others, and a good place to get some dialogue started on issues like stigma and shame. The site has been popular particularly with people who have ostomies, and for those facing the surgery, but sometimes it gets visitors who have never heard of an ostomy before. This makes me happy, because ostomies get very little attention in the public sphere (and when they do, it's often pejorative). The blog is a space where I can tell the truth and retain my dignity. It's filled with contradictions and sometimes with rants, but I speak from my gut… what's left of it, anyway. Please have a look.


Below is a story reprinted from the author's blog. You can find the original version here.

Sub-zero Trauma

by My Pink Button

Since the surgery, I haven't been able to sleep for more than six hours straight without getting up to empty the Good Year Blimp. It's gotten to the point where I can practically sleep-walk to the can, and go through all the motions of emptying my bag without much thinking. I've gotten used to it and it's only when I think about it heavily that I feel sorry for myself and decry the ill-effects this nightly disturbance to my REM cycle must be having on my complexion.

Pooping in the middle of the night whilst camping, is not quite so easy.

When I'm camping, it's a whole different routine. The bathroom -- or outhouse in most cases -- is often a fair walk away, I have to put on my shoes, there's no simple light switch, it's cold, unfamiliar, and basically it's just not a smooth ride.

I went camping with my sister and her fiancé in February. It was camping in the snow, which would not at all have been enticing to me were it not for the hot springs that were nearby.

Anyway, I came up with a brilliant plan before going to sleep that would avert all the bother and discomfort of having to put my coat and shoes on and trudge up the hill to the outhouse to empty my poo-filled bag when I would inevitably wake up at about 4 AM, sleep-filled and disoriented.

I had a couple of sturdy grocery bags, and the plan was to simply get up, unzip the tent, poke part of my body outside of it, and empty the contents of my bag into said plastic reservoir, double-lined of course. Then I'd wipe, re-attach the Velcro, roll that puppy back up, zip up the tent and climb back into my down-filled cocoon of warmth and sweet dreams. Easy frickin' peezy.

Ha!

When my bag got to be quite full, I did what I often do in the middle of the night to buy myself some time, or to let myself finish off some amazing dream. I released some gas. And boy, there was no shortage of that given the navy bean soup my sister had boiled up for an appetizer that night.

About an hour or so later, it was time. I began rustling around in my sleeping bag to get myself out and grab the plastic bags so I could execute the genius plan. But as I was rustling out of my bag, I noticed the rankin' smell coming out of it. I thought, "My god! That gas was potent" -- assuming that I had simply been marinating in a Dutch oven of navy bean farts until I allowed even a peep of air to escape sixty some-odd minutes later.

So the plan changed. Believing that my gas was that bad, I figured it would be a great disservice to my sister and her beau if I let the poop out in the vicinity of them sleeping. So on went my shoes, and plastic bags in hand, I headed outside of the tent, in the snow, the falling snow, to empty my bag several steps away from the tent. So I go to grab my bag and what do I feel? Wet fleece pants. And then I reach up to my stoma, half panicked, to confirm -- oh my god -- that it was naked.

Seconds later, my sister woke up to the tune of me saying, "Oh fuck! Oh fuck! Oh fuck!" She asked what was going on, and so I told her I lost my bag somewhere between my sleeping bag and where I was standing now. Seconds after that, the worst-case scenario is confirmed. My loving sister discovered that my bag of poo and its contents were, for the most part anyway, inside my sleeping bag.

Scheiße!

Not only was the poop spread wildly about my sleeping bag, I also found it was all down me, on my shirt, and even on my wool scarf. I was poo-soaked and standing in the snow, frozen. Frozen, yes, because I was cold, but more so, frozen not knowing quite how to proceed.

About fifteen or twenty minutes later, I had managed to clothe myself in clean garments and was more or less hating myself and wishing I had not come on the trip as I climbed into the tent. My sister has rolled up my sleeping bag and pushed it to the end of the tent. She then told me that I had no choice but to climb into her sleeping bag with her.

Now that is love.

Until the sun came up, we spooned. Very uncomfortably, mind you. I barely slept, and when one of us wanted to shuffle, the other one had to cooperate with every motion or risk suffocation. The fabric of her sleeping bag was stretched tight and there was not enough extra room to even insert something like a sheet of paper into the bag.

She got up with the sun and headed for the hot springs while I, still feeling miserable, tried to sleep as long as I could. It was embarrassing and horrid, but my fellow-campers treated me with nothing but respect and love. After the self-loathing and sense that my entire weekend had been ruined, I managed to have a good time for the rest of the trip; and now, with this incredible story, I am that much richer.

Read more stories and learn much more about life with an ostomy at My Pink Button.

77 Comments on "Life With Ostomy"

doniker's picture
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"I was shitting blood and because when I stuck my finger up my bum, all I felt was raw, bloody flesh."

this is where I stopped reading. Yuck!!

Logjam's picture
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Ms Pink Button. First let me congratulate you on grossing out doniker; you have succeeded where so many of us have failed. Second, I found this and your blog both informative and touching. Please come back with more stories. Best of luck figuring out how to make the best of this. All of us, and especially doniker, have issues to overcome.

Logjam

The Big Wiper's picture
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Reading your article certainly makes me realize that many of us take an everyday thing like pooping for granted. Thanks for the enlightening information, and welcome to PoopReport!

Pulling My Pants Down For Peace, Plop and Posterity!

Nine Inch Log's picture
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Shitty story. No literally, shitty. I am amazed that after such surgery you are still motivated to live out an active lifestyle. After traumatic events or major surgeries most people never do anything fun, but you still go camping, etc. I'm glad you're able to do that and glad you have supportive friends and family who can help you when needed.

_______
Number One . . . I order you to take a number two.

Number One . . . I order you to take a number two.

C Everett Poop's picture
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I hate to say it but I agree with Doniker on this one. This is grosser than gross. Then I made the mistake of clicking on the link and read the disgusting blog bit about the pervo who wanted to have sex with the "opening". Why not just stick your hawg in a jar of shit? SICKO!!!!

BTW Dumpster, I'm waiting for your rebuttal to my tirade against lawyers on the flame forum. Or do you agree with me?

My Pink Button's picture
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When I was facing having the surgery, one of the most challenging things was knowing I would have to face opinions like donikers and c everett poop. I thought the majority of people would feel that way, but fortunately what I've found is that for most people, the 'gross' factor doesn't get in the way of seeing and discussing the other intricate complications and exeriences that having an ileostomy brings.

To the Big Wiper - yes! be grateful with each loaf you lay!! I very much miss the satisfaction of a good bowel movement or fart! Farting through my stoma is not nearly as exciting.

C Everett Poop's picture
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Pink Button, just to set the record straight, I have nothing but sympathy for people with medical problems and I'm grateful that I don't have any. I just get queasy about people talking about sticking their fingers up their bloody assholes and fucking a stoma. Call me old fashioned I guess.

Double Flush's picture
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Welcome to PoopReport My Pink Button! I read your blog when it was linked a while ago, and I got absorbed into it. You have such an interesting story, and at the same time I feel bad for you. It makes me feel so grateful that my guts still work fine. It's too bad I don't remember when I was a baby and had to have a section of my intestine removed due to some sort of blockage. All I have to remind me of it is a large scar across my tummy.

I don't see a gross factor, because nothing is gross to me when it's merely a discussion. I'm happy that you can still live life the same way as before, aside from a B.M.

Happy PoopReporting! I'm sure you'll be a great addition to our community here.

_______
"Double the flush, double the fun" --The Amazing Anus

[Insert witty banter here]

Logjam's picture
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CEP backpedals with: "I just get queasy about people talking about sticking their fingers up their bloody assholes and fucking a stoma." ???? You're the tough, seasoned military guy, right?

Logjam

sharty mcfly's picture
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It was a bit gross, but life is gross. I found it very informative and interesting, not to mention that it brought the whole thing to a realer place for me. really the only time i've heard about such things is through jest which generally involves people talking about throwing said bag. anyway, you are most certainly a person of amazing character and very strong constitution. it may be embarassing at times, but it sounds like you have great friends and a great family, and of course now you have us. We may not know your struggles in a personal matter exactly as you do but poopreporters are always willing to listen, share, and generally try to help you make the best of it. There are some fantastic stories about us abusing our digestive tracts that you can live vicariously through as well. Anyway, welcome and thanks for having the courage to share. As far as doniker he is really hard to gross out, and CEP from what i've seen means well and wasn't grossed out by you, but by the people with the fetishes. On that count i do agree with him. That's on the level of people with stump fetishes, i don't really see how it's fair to the person with the stump or in this case stoma to sexualize a part of their body that is cause for constant strain and was the end result of a traumatic event. Anyway, welcome to the PR. (sorry for the long ass comment)

yours in time,

Sharty Mcfly

The Big Wiper's picture
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Let's not forget, fellow poopers, that some people would find our general interest in bodily functions gross. We've had flamers come on here and tell us all just how sick and gross we are because we don't recoil at the mention of poop and pee and farts, etc.

But this site is dedicated to intelligent and humorous dialogue on just about every aspect of bodily functions. My Pink Button's article is part of our arena of cutting-edge discussion. An informative bit of writing and one hell of a courageous attidue in dealing with what life has dealt her.

Pulling My Pants Down For Peace, Plop and Posterity!

C Everett Poop's picture
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Logjam, tough, seasoned military guys get grossed out. I also don't like child molesters and scat freaks. I just don't get the attraction of some things.

daphne's picture
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Had you been my kid, I would have taken you to the doctor much earlier, like when you started losing weight and were hunched over. You poor thing. Didn't anyone notice?

Thanks for sharing such an interesting story. By the way, I don't know if the hospital could tell you that your own body parts were their property. Is it possible that the pieces were kept for certain tissue replacements in other patients? Alot of people don't know this, but the tissue taken from little boys when they are given circumcisions is used in transpant operations. This is one of the reasons that you have ask for the tissue and the hospital advices circumcision.


_______
.....hugging bunnies since 1969
www.daphneszoo.com

.....hugging bunnies since 1969
www.daphneszoo.com

Rectal Badger's picture
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My Pink Button, you are by far one of the most courageous people to ever have existed. I am convinced of this after reading this story. I actually wept while reading it. I have IBS, and your story makes me realize that I am LUCKY! People who don't have anything like Crohn's or IBS rarely realize how fortunate they are to go through life being able to eat without suffering.

And I'm disappointed to see so many people bitch about how "gross" this is - imagine having to live with it, you assholes! It's people like you who make people with bowel disorders ashamed and embarrassed when it is not our fault.

Thank you, MPB, for bringing this condition to light. It it because of you, and people like you, who make it better for people with bowel conditions.

Thunderbox's picture
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MPB - I like your grit in asking for your pickled ringpiece back.

The voice of sanity

GottaGoGirl's picture
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Dear Pink-- This is the place for you! If we're interested in discussing the human condition of pooping, you provide an important, under-understood part of the population. Welcome!

I actually liked the blog exerpt more than the main story. Thanks for both!

My Pink Button's picture
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thanks for all the feedback everyone!

Being able to discuss digestion is so important to me, not because I want to push people's limits or gross anyone out, just because I am trying to destigmatize open discussion of bowel disorders. It ends up completely pushing people's limits sometimes, but if I keep it all inside, I become a part of the problem. To me, it's civilized and mature for a group of adults to be able to talk about the entire process of digestion. It's not like we're rolling around in it!

If we look at the prevalence of trans fats, saturated fats, sodium, preservatives, wheat, dairy, meat, etc, in the average 1st world diet... is it any wonder we are experiencing diseases like Crohn's, Colitis, obesity, cancer, cardio-vascular disease, diabetes, etc. If we can't talk about digestion, we're leaving out a huge part of the public debate!!

Also, if I was taught more about the digestive tract when I was younger, and talking about poo wasn't so stigmatized, I never would have got as sick as I did. Daphne, this was a major part of the problem: I purposely hid my condition from my mother.

Anyway, you guys are all here, so I guess you understand a lot of this already. When I had my 4th anniversary party one of my hopes was that people would walk away from the party and be able to talk to others about what Crohn's was, or an ostomy, or some other bowel issue. And some did!! Knowing you're all already seasoned poo-talkers, I challenge everyone reading this to talk to someone in your life about what an ostomy is!

the log of hazzard's picture
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I can hardly imagine what you went through. It must be wierd having no anus or large intestine. I've always thanked whoever is up there for not giving me some sort of bowel disease, but as we see, some of us aren't so lucky.

Well, good job for taking yourself to go through the surgery, and great story.

Some are born crappy, some achieve crappiness, and some have crapiness thrusted upon them. (Do NOT be the last one)

ScytheSpawn's picture
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MPB - you're awesome. You have more balls than I do.

Crappen Geocacher's picture
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This is one heck of a shocker, and REAL LIFE can be a shocker for some that don't know about Crone's Disease or IBS, and other ailments of the colon. Seems like this website is about "What can Brown do for you?"

My Mayor of DETROIT, is suffering from diverticulitis, and it came into the news here in the past couple of days, and it is an inflammation of the intestines, and because Detroit Mayor Kwame Kilpatrick became ill with this disease, he will have to really watch his diet for now on.

Story link:
Mayor Kwame Kilpatrick with diverticulitis

MY PINK BUTTON: Thanks for this story.

Geoff
-Detroit

Gaseous G's picture
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No matter what our fate in life, we have no choice but to do the best that we can and to hope that the world will allow us a bit of dignity in our struggle.

The Dumpster's picture
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This is why I get so upset with the throngs of people who come on this site (usually to a PooNurse thread) saying "there's blood in my poop! What should I do?"

The answer as ALWAYS the same: Go To A Doctor! NOW!! This story is Exhibit A in the list of reasons why.

MPB, my sympathies are with you, and you've obviously got a lot of intelligence and spirit. Thus, I find it incomprehensible that you (and your parents) deliberately let this acute medical situation fester for almost two years before getting a proper diagnosis. Even more bizarre is that not one, but two doctors were so negligent in their treatment of you that they failed to perform a basic differential diagnosis within the standard of medical care, which absolutely would have mandated GI studies, that in turn would have revealed your Crohn's Disease at a much earlier stage.

I know several folks with this affliction, and had yours been detected earlier, it more likely than not could have been controlled with medication.

I repeat, my dear, that you are a brave person and I'm glad you have shared your story with us, but you are not only a victim of Crohn's Disease, but of parental neglect, gross medical malpractice, and of your own youthful psychological disorders.

Please let this be a warning to those who wish to keep their heads up their asses about serious medical problems: Ignoring them will not make them go away.

_______
Send all your money to Bilgepump, or to Dave!

The Dumpster's picture
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Everett, as you know, I replied to your aptly-termed tirade against lawyers on the forums. I suppose you think the first two doctors who "treated" MPB ought to be given a medal. It is, of course, far too late for her to do anything about that now, but this is a perfect example of why we need a strong tort system. Instead of the doctors whose negligence cost this poor girl her bowels having to pay for her future medical care, the cost of this is instead foisted on the health care system generally, which means that you and I (and everyone else who uses the system) are subsidizing it.

Well, me more so than you, because unlike you, I don't live off of taxpayer dollars.

_______
Send all your money to Bilgepump, or to Dave!

C Everett Poop's picture
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Dumpster, weak comment. I get paid by the taxpayers so they don't have to live on warships for 14 of the last 18 years like I have. I don't do what I do for money, unlike parasitic ambulance chasing shysters.

Nine Inch Log's picture
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Now children be nice.

_______
Number One . . . I order you to take a number two.

Number One . . . I order you to take a number two.

Thunderbox's picture
PoopReport of the Year AwardComment Quality Moderatorj 1000+ points
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Dumpster and CEP both have valid points.

However, America has become a bizarre state in the way that everyone has a "right" to sue anyone over anything, for ridiculous amounts of money.

The only people who win every time of course, are the lawyers.

We are trying our hardest here in Britain o stop this madness coming over. It`s hard, but I hope we can prevail.

The voice of sanity

The Dumpster's picture
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"The only people who win every time of course, are the lawyers."

TB, how does a lawyer who takes a case on a contingency basis (meaning he doesn't get paid unless he recovers) "win every time"? Anyone with an ounce of belief in capitalism understands that the contingency fee is a powerful disincentive to baseless litigation.

It is the lawyers who get paid by the hour--i.e. the defense lawyers hired by the insurance companies--that are ruining the system.

And, dear friend Everett, I want YOU on my side "when the band begins to play," as Kipling says. I'm just glad that, unlike the writer of this story, you've evidently been fortunate enough not to need MY services up to now.

ANonymous8's picture
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hi everyone. so i have been reading and scanning through this website for about a month now. and i have to say that every single one of you are ROCKSTARS. i love taking my daily dump or two and unfortunately,....i have a story that is a little weird but the only way that i can go to the bathroom is to stick my finger up my butt. i know that this sounds really gross...but i am constipated otherwise and reading through this website i realized that i am not the only one who does that. pink button....i hope that you heal and that everything goes well for you. i cannot even imagine being in your situation and having to deal with that everyday. so to everyone...i wish you all the biggest freaking dumps ever. the kind that you sit there and you can't wait to look into the toilet to see what came out. or the kind of dump that you sit there thinking...oh my freaking god..where is this all coming from???!?!? to all..good night and good dumps!

daphne's picture
PoopReport of the Year AwardSite AdminComment Content ModeratorComment Quality Moderatore 6000+ points
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Hey bud, have you tried Fleet suppositories? They work well.


_______
.....hugging bunnies since 1969
www.daphneszoo.com

.....hugging bunnies since 1969
www.daphneszoo.com

Anonymous Coward's picture
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Pink button,
My grandfather had a colostomy, secondary to colon cancer. He lived with us for the last 18 months of his life. While it was gross beyond description, (he developed gangrene at his ostomy site) he conducted himself with as much dignity as possible. I learned then to value health because it is so fragile. I salute your courage. My granddad was in his 60s when he had his colostomy. I marvel at your resilience, being so young and having such a radical change in body image. I trust you are well now, and hope and pray you remain so.

SamDamnit's picture
Comment Quality Moderatorj 1000+ points
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Fleet Suppository

Is that a naval term for a grease gun?
_______
Sir SamDamnit!
The Emir of Crapistan

SamDamnit!
The Emir of Crapistan

Anomalous Coward's picture
k 500+ points
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It is. Fire in the hole! Actually its a gift that keeps on giving.

Halt! Who goes there - friend or enema?

Anonymous8's picture
0
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thanks but i have tried suppositories and for some reason i have the urge too soon and end up losing it in the toilet.
anyways....good poops to everyone.

Double Flush's picture
k 500+ points
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SamDamnit!, you can use your grease gun on CEP and yourself if you so desire. Fleet is a brand name for suppositories and enemas that you can find at most stores--even Dollar General carries Fleet. Anonymous8, try squirting in an enema and holding it for about 5 minutes or so (it's hard to sometimes).

_______
Damnit, someone stole my signature!

[Insert witty banter here]

eduk8edpooper's picture
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Pink Button... It's wonderful that you have been able to feminize it and characterize your stoma in a manner that seems so appropriate. While taking a masters level class regarding disabilities a "gentleman" with his "Doctorate" called a stoma a little penis. At class end I told him I had a stoma and found his discription offensive and I could only guess that a female counterpart would find it highly derogatory. I have searched in my mind for a proper discriptor for the past 6 years. Thank You!!! Your sleeping bag story was great and I can't believe the responses.
1. God is not punishing ostomy folks for past sins.
2. We people with rectal disfunctions are extremely good at covering our tracks.
3. Lawyers only take what they know they can collect on. I was killed by the cornfield butcher and lived again to tell my story. No lawyer would take the case.

This whole thing begins to give me enough courage to tell the story of how a bus had to be pulled over in the middle of a blizzard on a Belarussian highway stopping a military convoy of humanitarian goods in 1992 for me.

I have lived and died with this thing twice now and will be back in the classroom to teach shop on Tuesday. Life's the shits and then your one of us. Revel with every sunrise Pink Button!!!

Neil's picture
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Wow.
"My pink button" that was a difficult read. I wanted to look away but was compelled to continue reading. I cried. I find it sad that as children we blame ourselves for our ills, find it hard to seek help due to embarassment.
Your story is amazing, the pain and anguish it could cause you would make a lesser man crawl under a rock and hide from the world.
I am glad you have found an outlet in the world wide web that will allow you to feel more freedom through getting shit off your chest. For want of a better expression.
I find what you have written inspiring, your decision to live life, the unconditional love of your sister, your ability to communicate your issues. These are all things i think are most valuable in life. You have all of these things plus more.
Obviously nothing can hold you back from enjoying life.
Well done.

shelly's picture
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i just left a friend at the hospital who just got her poopbag. she was embarressed that she has no control of sounds ,smells and time. she feels her dignity is gone. i learned alot. i was thankful that i can poop when i want. i will never take that lightly again. i will never look at going to the bathroom as a chore. it is a privledge. thank you for this site.

sweet soul's picture
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Hiya people

I stumbled onto this site as my first step in facing facts. I have bowel lesions, that I have been warned will probably lead to a colostomy next operation. I have questions is there any links I can go to or people I can talk to about dealing with body image and how the heck I am suppose to feel sexy after this.

I have to go back and talk to the surgeon in December, I talked to him in June and convinced him to give me a 6 month reprieve and try and control the pain with meds. Anyone got any ideas?

poop friend's picture
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thank you for this page, I have had one friend with this and he died with cancer after years with the bag.... now I have a boyfriend that found out he has it and will have to get the bag within the next month? Do all men loose their capability to have sex when they have the surgery??> I know it is going to be hard on him as it is already, but i have heard that men loose their ability to preform too??? does anyonehave an answer???

Cookie's picture
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Have done lots of camping myself in the 36 years since I got MY pink button - my middle-of-the-night secret is an old peanut can - fill'er up and snap on the lid till morning.

SweetSoul, please look up the UOAA - there are face-to-face support groups all over the US and an online discussion.

Poop Friend - the extent of surgery depends on the illness. Cancer will require taking more out, maybe also the nerves that assist erection. An ileostomy for IBD or a colostomy for diverticulitis probably won't have any ill effect.

K's picture
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Hi, I just wanted to say thanks for being so blunt about your situation. My dad just had surgery that didn't go well, and now he will have to wear a bag. I am finding your blog to be pretty informative. At first I was pretty freaked out, but now I realize that it's not that bad and its nothing like what I had imagined. Thanks for helping me to better understand what my dad is going through.

catstail4's picture
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I have read alot of comments here and I too have just recently had the surgery.Some of ya'll are either incredibly stupid and won't care untill that BIG DOG comes to bite you in that BIG ASS and some of you try too empathize and turn from the real topic. And as for you PINK BUTTON mabe know it should be poop button, I try to take lite of my situation, but you take the cake, I have never laughed so hard about this topic and never thought it could, it's just too bad I'm reading this alone! Thank you for the new stories to tell tommorrow. At TWELVE were your first symptoms? WOW! I'm 49 and this is the first time I've ever been a patient in a hospital. So handle it anyway you want to get thru this. Outside of loosing all my hair which was down to my waist (my hair has never been shorter than the middle of my back. Now I have to strt all over again (well I was gonna go get a hair cut anyway) I'm just glad it happened before I forked out $150.00 bucks to get it cut! Now that would have been real hell! Doctors and nurses will give all kind of pamphlets that talk about the intimacy relation part of your life, If you have a boyfriend thats just been recently diagnosed, well, your already one step of him! And all you other boneheads out there, just you wait, your turn will come, just when your having the best sex ever! You better think of a real good story to tell the emergency doctors when you get there! Just when they think they have heard them all! It will probably be on the front page of their "Hospital Gazette". (I'm not shitting you, that's the way it happened) HA!

Hamster's picture
k 500+ points
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Pink - thank you for sharing your story. As others have commented, it is moving and thought-provoking. I think the strongest single message is to remind the rest of us how lucky we are, that we can enjoy the simple pleasure of having a dump.

kaisar's picture
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Hi! There,
Hope you are fine now and doing well in your life without any hurdles.
Would just like to know does it bleeds very often after the surgery takes place.
I've my neice with the same problem she is just 10months old and was operated on the 3rd day of her birth. However she is not putting on any weight since then and whenever she poo's the ostomy starts bleeding.
We showed it to the doctor who operated her and he says it is normal however it doesn't seems to be normal to me coz there are 2 more operations needs to be done just to make it normal for which she should put on weight but I can see any such thing happening. She bleeds every 2nd day from there.
Please advice on the same.

Regards
Kaisar
India

Scott Gates's picture
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My pink button... I just have to say a few things,

I'm a 28 year old father of three and I've been living with Ulcertive Colitis and Crohns since I was diagnosed at the age of 10. Now before people start saying you can't have both, I don't know, I just go by what my Doctors tell me.
After years of pain, illness, and yearly hospital visits, the doctors told me I have no other choice but to have a Ileostomy. As worried as I am, I started to research the surgery. I came across your Blog and I found it very enlightening.
I enjoy reading your stories and learning from them. I feel much relief finding someone that has gone through the same things and feelings as me. Keep up the good work informing the masses.
I'll be sure to check back in after my surgery and trade stories with you.

Snapper_'s picture
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MPB - Thank you for posting this! I felt bad for you, but I still laughed at your camping story. Your humour and insight really make a really awkward situation seem human and normal as you are only human and the body can do some strange things to itself. I bet you've helped a lot more people with your blog than you realise.
Cheers,
Snapper

B's picture
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Hmm, seems like this whole colostomy deal could use some applied technology. Perhaps a miniature arc-driven incinerator, that way you would only have to empty a cartridge of dry ashes. Though powering it would be an issue, as well as the odd breeze being emitted from your side.

Ben S's picture
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I wholeheartedly thank you for your honesty and entertaining story. I hadn't heard of an ostomy before let alone taken a few moments to consider what people who have them must deal with. It made me realise how much I take having a shit and not having a hole in my abdomen for granted. Thank you once again. Take care. Ben x

Aussieostomate's picture
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Mate, this is so funny with the whole sleeping bag camping incident! I laughed heaps and heaps..... I read it to my wife and she laughed too. I had Ulcerative Colitis for 11 years and then had ileostomy surgery last Christmas (2006). I get depressed, but man, I must say I feel great tonight after finding this site. I am not alone, and either are you.... Cheers dude, from Australia.

Anonymous Coward's picture
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i just started as a cna and i had a call the other day about a woman with an ileostomy and i was interested in knowing more. so i looked it up. wow. god bless you for living life without so much as a hiccup. that is the way it should be. people (general public) forget that we're just human beings, why does everyone think that we should be above human nature? it must be gods doing, something that humans can't help. we all shit and piss and have an emesis and bleed and all that. it's bullshit when a human can't be treated like a fucken human.

Scottish Steve's picture
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Funny and honest story about your stoma :) glad i clicked the link from wikipedia. I'm a student nurse and i was learning about stoma's and the emotional effects it has on the patient so not only being a good peice of writing but gave me good honest insight into the emotional aspect of having a stoma.

p.s thought wiriting style was very chuck palanuik-esque ...nice one ;)

Gav from ireland's picture
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Hey i read the main story and its like my life since i was 8 blleding pain ant not knowing what the hell was giong on i hid it for ages but after awhile i went to the doc i was digignosed wit ibs in my small intestine and chrones in my large intestine.. i spent 2 years just living to go to the toilet because the docs over hre woundn op on a 16 year old.. once i turned 18i went privete .. ive had the bag since missed all of my good years at school.. im 24 now had the bag a long time gettint to know howit works ack working but looking frways to get back training any help or tipsjust e mail ..
thanks gav

Helen the Coward's picture
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I just read your story and it scared the living daylites out of me!
I was just told yesterday that I might need a colostomy in my near future. I am terrified and somewhat disgusted, not really knowing anything about it. The advantage is that I'd get away from the pain and medications and all the procedures that I've gone through. One other advantage is that I'd have two feet less of colon to develop cancer!
If anyone has any soothing comments, please direct them my way.

ss's picture
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Dear My Pink Button,

My brother is suffering from Chrons from 7 years, jus this morning doctors have suggested colonostomy. He is not sure about it and I wanted to know about the surgery from common man's point view and thankfully stunbled upon your site. Hats off to your guys and energy for putting this blog together. We need more people like you to share the things...wonder why when the soo called poo is inside our body we don't mind and once it's out it becomes such an issue...it is part of us..itsn't it.

Good luck with you life and I hope you lead a health and happy life. It's not what happes to us that says who we are, but how we react to life.

ss

ss's picture
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this sure is an honest and humorous opinion about a very important topic

chrissy's picture
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my dear friend has ulcerative colitis and is about to have an ostomy performed, so i came here to try to have a better understanding of what she'll be going through.
i appreciate your frank and honest discussion and anyone who is grossed out by stories like this should realize that this is a site about "poop", and should make use of the small x at the top of their screen.

OstomiesSaveLives's picture
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Hey. Don't quite know how I got here, but figured I'd leave my mark. I didn't read all the comments as I got bogged down somewhere in mid-July, 2006.
Anyway, my mom just got out of surgery (yesterday in fact - she's still in ICU as I type this) for an emergency colostomy and my dad has had an ileostomy for the past 11 years (its name is "Chumley"). Dad suffered from Crohn's Colitis - a nasty mixture of colitis and Crohn's disease. Crohn's can affect the entire gastric system - his was limited to the large intestines by the colitis, which also naturally had its fun effing things up in his lower bowels even more.
Yes, your story is gross. So was/is my parents'. Bowel problems are gross - both to read about and to live through. It's okay to be gross though. Life isn't always pretty and doesn't always smell good.
Anyway, just thought I'd add my 2 cents in and thank you for posting your story. Ostomies save lives.

What's the big fuss?'s picture
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My 78 year old paraplegic husband had three-fourths of his large intestine removed nearly a year ago. Since he must do bowel care four times a day instead of the previous once, the surgeon now says a colostomy might be a better way to go. We are trying to get as much information as possible to make an informed decision. Looking up "Colostomy" on the internet led to this forum.

As far as being "Grossed out", when you love someone, you do what you need to do, and that includes cleaning up poop. What's the big deal?

Hurrah for My Pink Button and her loving sister!

Eric K.'s picture
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You only change you flange once a week! Holy shit, I'm lucky if I make it a day. Reading your similar story (had the symptoms of crohn's since 7, diagnosed at 12) brings me back a bit. I've had an ileostomy for 10 years now, and it took that long for me to adjust. I still remember the stomach pain that made me think I was possessed. When I got that "urge" to go, I had exactly a minute to get to the nearest bathroom or to drop my pants where ever I was because there was no stopping it. At first I did feel like a "freak", but then I realized I always was a freak, and embraced my "freakdom". Nobody knows unless I tell them, and most of my friends end up forgetting until I remind them. And when people say "that's a horrible disease" I tell them there's much worst out there, but it is one of the "shittiest" diseases!

Mara B's picture
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I use to have leakage problems with my ostomy bag. One of my friend who is the owner of local Ostomy Supplies Store Ostomy Supplies Store given me few suggestions to solve the problem.

1. When you apply the barrier film or barrier wipes wait 1 or 2 min until the skin is dry.

2. When the bag is put in place around stoma. Apply little pressure around the stoma , so that the skin will stick to the adhesive on the wafer.

3. Put the hand on top of the bag and hold it for some time. This will generate heat or absorb heat from the body so that the bag will stick to the skin correctly.

These few tips helped me to avoid stoma leakage.

Henry P.'s picture
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I too have dealt with skin issues and my ileostomy. I get my Ostomy Supplies from a company that pretty much sells only ostomy and they have a few items to help with leakage such as: (1)Using tape to picture frame the skin barrier to the skin with a water proof tape, (2)Use a moldable strip or paste to create a smooth surface around the stoma for the ostomy appliance to bind, (3) They sell stuff that will absorb the acidic liquid output in the pouch that works great, (4)You may want to consider trying a new appliance and start by having an evaluation with your stoma nurse.

Ostomy's picture
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Wow! This is one candid site. But it's very useful. I work for a company the sells a variety of products, and was looking for other options (that is, vendors who sell to resellers like us) for ostomy deodorants and cleaners, and ran across this site. It's very useful to read the informative (if graphic, and sometimes a little scatalogical) descriptions of ostomy procedures, and how real people are dealing with their real life situations. Thanks!

sittingpretty's picture
Comment Quality Moderatori 2000+ points
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Oh, Jesus, Please keep me from having the surgery and an ostomy. My skin will never accomodate adhesive of any kind. Amen.
_______
...And their flesh like dung. Zeph. 1:17

...And their flesh like dung. Zeph. 1:17

Jonnie's picture
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Haha Pinkie you crack me up! I have a temporary Ileostomy and totally understand the embarrassment and social implications that come along with it! I just love your humor about it all though! i've not yet (touch wood) had any major embarrassing moments as such, but ive had accidents which ive managed to keep private, i was so cringing about your camping story because i reckon if it was me id have dealt with it alot worse than you! good on you!

IBS NO MORE's picture
k 500+ points
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SP, did you go to My Pink Button's blog and check out the "leak" picture story? All I can say after seeing that is... pray harder. I'll help:

Dear Lord, please let everyone who reads this have healthy bowels and live free of digestive pain for the rest of their lives. Amen.

_______
How I beat IBS

When you say the word “poop,” your mouth makes the same motion your butthole does when pooping…
The same can be said for the phrase “explosive diarrhea.”

sittingpretty's picture
Comment Quality Moderatori 2000+ points
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No but I will go read it now. Thanks for the prayer. I need lots of prayer.
_______
...And their flesh like dung. Zeph. 1:17

...And their flesh like dung. Zeph. 1:17

sittingpretty's picture
Comment Quality Moderatori 2000+ points
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I don't know where to go to see My Pink Button's blog. I went to Pink's profile and there is nothing much there.
_______
...And their flesh like dung. Zeph. 1:17

...And their flesh like dung. Zeph. 1:17

ChiliKahKah's picture
j 1000+ points
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Honestly, time to count my blessings that I do not have this kind of medical issue.

IBS NO MORE's picture
k 500+ points
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SP, click this link (My Pink Button's blog)
and then scroll down a ways... you'll see it.

_______
How I beat IBS

When you say the word “poop,” your mouth makes the same motion your butthole does when pooping…
The same can be said for the phrase “explosive diarrhea.”

IBS NO MORE's picture
k 500+ points
0
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We should all be counting our blessings on this one, Chili. My heart goes out to anyone having to endure this.

_______
How I beat IBS

When you say the word “poop,” your mouth makes the same motion your butthole does when pooping…
The same can be said for the phrase “explosive diarrhea.”