Meet and talk to people with an Ostomy

JamesArnod

Posts: 47

Male, no blaster, no erection…..no sex

Jul 10, 2023 - Aug 22, 2023

So 13 years ago I had my bladder ;removed along with my prostate and 16 lymph nodes. A Urostoma was installed. I was very lucky and for some reason I healed very quickly and was back to work in 3 weeks. Twice I had a nurse show me how to change my bag and I was discharged from the hospital in a week and never saw another nurse.

But I then noticed I never got an erection of any kind. As it turns ...

18 replies | 988 views

Hisbiscus

Posts: 127

Output smell different

Jun 20, 2023 - Jul 17, 2023

Lately I have been having diarrhea on and off and to me my output actually smells like a wild animal lol! Has anyone else ever experienced this? I was checked for Cdiff but another doc told me they might have to get a sample from a stoma scope.

10 replies | 292 views

dmo101

Posts: 56

NEVER EVER had a leak

Jul 21, 2023 - Sep 10, 2023

HELLO everyone out there!

I am constantly battling a leaky appliance or broken skin seal.

I was curious has anyone out there ever NOT had a leak with their appliance?

26 replies | 569 views

creinhart030805

Posts: 2

Post surgery by 6 weeks

Aug 07, 2023 - Sep 03, 2023

So i had my Ostomy right after my 18th birthday and after I graduated high school, I have a genetic dietary which caused a temporary pouch, my dad had he surgery before me and I thought okay I got this. I don't got this im scared. For a couple days I was sick cause of a bug and now im fine, but when I emptied my bag it looked like black stuff in my bag and so when I was cleaning it after I empt...

8 replies | 226 views

Briutz

Posts: 48

Problems with hair and the sticky wafer thingy

Jul 09, 2023 - Aug 07, 2023

When I arrived home from the hospital experience we've all had the pleasure of tasting, I was actually being launched into a new world order with a new born baby turd machine complete with it's own Artificial Intelligence. We've all got one or had one, you know,.. it's that adorable blossoming red thing trying to eat it's way out of your flipping trying to keep the language down a bit today ) a...

19 replies | 417 views

eefyjig

Posts: 572

It's all coming back to me......

Feb 19, 2023 - Feb 22, 2023

Hi all. I'm going through an interesting time and am wondering if anyone can relate. I know most of us still carry a lot of the trauma caused by our health-related experiences. I know I do, but I've been fortunate to be able to put it aside and be there for my friends and family through their medical challenges. I've visited them in the hospital and volunteered in my local one for six years, ab...

20 replies | 883 views

gfk374

Posts: 10

Reversal surgery

Mar 30, 2023 - Jul 10, 2023

Five weeks ago, Feb 20,2023, I had ostomy reversal surgery. Met with my surgeon two days ago for follow up. He said everything looked great. Everything seems to be working properly. My bowel movements have returned to pretty much normal in amount, size and color. The main problems I've had is I'm still very swollen. He said that's normal and could be swollen for a while since I've had my abdome...

14 replies | 509 views

dada12

Posts: 2

OstomyCure TIES System - Any success stories or feedback?

Jan 13, 2020 - Aug 02, 2023

With the TIES Solution, the patient can live a life without the need to constantly wear an ostomy bag.

The solution is a titanium port with a lid and is implanted in place of the conventional ostomy. The lid bears a hatch that allows the evacuation of the waste without removing the lid. A bag holder that does not touch the skin allows the fixation of the bag when the waste needs to be evacuated....

18 replies | 3351 views

Happytostillbehere

Posts: 48

Turning 80

Aug 15, 2023 - Aug 24, 2023

Never thought I'd reached 80, yet here I am. Numerically I can't deny that I'm 80 but my subjectively age ,that's a whole other thing altogether, don't know how old I feel and it's nowhere near that,not even close and that's a good thing! Some of the articles I've read about the subjective age say that good genes have a lot to do with it. Personally I prefer Wranglers and who would ever thunk t...

6 replies | 261 views

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HenryM

Posts: 2317

Ostomy Memories of Withdrawal Pains

Jan 27, 2023 - May 12, 2023

I POSTED RECENTLY ABOUT TAKING A BREAK from watching the news. I’d become a news junkie. The news pissed me off. It was disturbing, upsetting, inexplicable. So, I quit cold turkey. It didn’t go well. Before very long, I got jittery. My hands didn’t shake, but I think I began blinking more often. It was eye flutter as a symptom of feeling uninformed. I found that I couldn...

18 replies | 705 views

livinnandlearnin

Posts: 37

Need advice for jacuzzi with ileostomy

Feb 16, 2015 - Sep 10, 2023

OK. So here's the deal. I've had an ileostomy for about 5 years and considering that I've had 9 surgeries in 4 years, I think I have a pretty good body image. Now I have unexpectedly found myself in a caring and committed relationship with a very supportive man, but it's new. Usually when I have sex, I tape my pouch (which is already the smaller "midi" type) up out of the way, and I use Colopla...

10 replies | 10365 views

HenryM

Posts: 2317

Ostomy Memories Turns Eighty

Feb 04, 2023 - Feb 05, 2023

LAST FALL, I TURNED EIGHTY. I find that it has changed my life for the better. First of all, as many of you can attest, getting old takes getting used to, like an obnoxious relative. It’s not something that creeps up on you over the years; it shows up suddenly, a rather brutal realization that hits you upside the head in the dead of night and knocks you senseless. Up till then, you se...

16 replies | 816 views

Newhere

Posts: 22

Sleeping

Jul 23, 2023 - Aug 02, 2023

Has anyone with a ilostomy tried sleeping in a recliner chair to prevent leaks? I have a colstomy and only ever had leaks, a few times while i am in bed. looks like i have to have a temp ilostomy next.

Wondering if anyone has tried a recliner for sleeping and if it helped with leaks, Thanks Bill.

10 replies | 366 views

pamala

Posts: 1

Challenges with indent from abcess

Apr 15, 2023 - Jul 13, 2023

I am having challenges with finding a bag that will stay on and not leak due to scars that are indebted on the right side of my stoma due to an abdominal wall abscess almost 2 years ago. 2 scars are under my appliance and one is just slightly outside the perimeter. When l move around or sit, the indents get deeper and my skin oulls away.

I have tried soooo many adhesives, but nothing has worked....

8 replies | 328 views

SpaceCowgirl

Posts: 5

Rectal stump removal?

May 04, 2023 - Jul 24, 2023

Today is my 10 year Ostomy-anniversary. I have long avoided serious consideration of reversal surgery because it's difficult to imagine my quality of life being more comfortable than it is today with a bag. I am left with a rectal stump to deal with however, and it feels overdue for a decision. I don't presently have any issues but it has atrophied and narrowed last I had it examined 2 years ag...

13 replies | 471 views

xnine

Posts: 1097

Do you swear when you have a blow out

Aug 27, 2023 - Sep 09, 2023

I say lots of stuff I can not put on here. It bothers my wife but what does one say when there is shit all over the place?

30 replies | 581 views

Passionileo7

Posts: 2

Wanting a tatoo around stoma, anyone else had this done?

Sep 03, 2023 - Sep 05, 2023

After everything stoma people go through. I was wondering has anyone had a tattoo around their's? Is it an obvious no, no. How did you stop stoma from leaking whilst having the surrounding tatoo'd. Did you cap it? Or not eat for several hours so output was zero? I am 8 weeks post surgery, have an ileo, on Chemo for x3-6 rounds, so whilst I'm waiting I can design a tattoo, if this is viable, and...

27 replies | 710 views

SallyK

Posts: 1276

Under Desk Mini Bike Pedal Exerciser

Aug 01, 2023 - Aug 09, 2023

Has anyone used one of these (Under Desk Mini Bike Pedal Exerciser)?

I am so worried about getting a hernia that I have only been walking and I do need something more.

22 replies | 511 views

Danno

Posts: 95

The same, but different

Jun 23, 2023 - Jun 25, 2023

I booked my reversal a few weeks ago and will likely take place around Christmas.

I've heard that some people do this in 1, 2, or 3 steps. Mine will be a 3 step process, which brings me to the pouch creation/loop ileostomy portion of my journey. following that will be the stoma closure and a "functioning" butt.

I've heard this loop ileostomy is the worst, but it's a step back to (hopefully) take ...

7 replies | 249 views

Iamari

Posts: 7

Tell me I can eat a tootsie pop

Jul 28, 2023 - Aug 19, 2023

Hi everyone! Well I am 6 weeks post op of my ileostomy with a bunch of complications and two extra surgeries. I'm so nervous about another ileus and having an obstruction (the ng tube was terrifying) that I want to eat chewy things but I'm afraid of obstructing. Anyone think it's ok?

by the way, I have a urostomy too. I've had that for two years. I'm a double bagger :)

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43 replies | 1182 views

Tatdude

Posts: 3

Depression

Feb 23, 2023 - Sep 17, 2023

How many people here suffer from Depression, since receiving their ostomy. A lot of people told me he that you should be happy you're still alive, which in some ways I am in other ways I am not. People also say it's a give-and-take all gave me some of my life back, but it took away more than I thought it was going to. I always liked having someone in my life and so far this ostomy has cost me m...

29 replies | 1470 views

crappycolondiaries

Posts: 954

Dr Letter for Travel

Aug 23, 2023 - Aug 30, 2023

My most recent trip was my first time flying since all my surgeries last year and I’ll be traveling again soon with just my young daughter. During some turbulence I ended up stuck in the back of the plane with a flight attendant and we became besties- she gave me lots of extra water, told me what I needed to say where no one could legally question what my medical condition was etc… at the e...

9 replies | 349 views

krkb01

Posts: 20

Heat and skin barrier sheets

Jul 07, 2023 - Jul 12, 2023

So I've noticed, that when it's very hot out, skin barrier sheets are next to useless! Lol the wipes however work amazing. That is all....

7 replies | 336 views

JCSunshine

Posts: 4

Best pouching system to filter air?

Oct 10, 2014 - Jul 29, 2023

Hi, everyone. I use Convatec Durahesive wafers and pouches, two-piece. The wafers are great, lasting a good 7-10 days! All is well, except I'm trying to find the best filter system. When my output is just right (not too liquidy), I can sometimes witness the benefits of a good filter. It is amazing how well keeping the air out is for cutting down on bathroom trips, waking up, etc. However, from ...

13 replies | 9306 views

Yourfriend

Posts: 9

Buying on-line ileostomy bags with no insurance?

Feb 17, 2023 - Jun 29, 2023

Do you have web sites to recommend for buying ileostomy bags on-line with no insurance?

I am looking at Coloplast 16768 which is not available on Amazon. Thanks in

14 replies | 587 views

mattwendzina

Posts: 2

White Substance from Stoma - Benign or Concerning?

Jun 30, 2017 - Sep 01, 2023

Hi there,

I seem to get this white substance excreting out of the side of my stoma. I've attached a photo.

I wondered if anyone has had a similar experience and knows whether this is benign or something I should be getting checked out?

Many thanks

8 replies | 6609 views

clair.crowley83

Posts: 28

Two step reversal update

May 27, 2023 - Jul 06, 2023

Hey bag buddies,

I thought I'd give an update on my situation. I had my colostomy reversed 12 days ago, and had a protective ileostomy created, with the goal to reverse that in 2 months.

The surgery was more difficult than they anticipated, because they found a lot of large adhesions and damage from the peritonitis i had back in November. They also had to remove my rectum which I hadn't anticipat...

12 replies | 408 views

Warrior24

Posts: 1

Clothing and hiding your ostomy

Jul 22, 2023 - Sep 06, 2023

Hello, I am wondering if everyone "hides" their ostomy bag? I've had my ostomy for a few months now and I'm still not comfortable tucking it under a waist band. I've been letting it hang out the bottom of my shirts but recently I've had a few strangers ask why I don't tuck it away. I don't know if it'll change your response but I had a Jejunostomy that is now an ileostomy recently, and I have t...

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36 replies | 1414 views

SallyK

Posts: 1276

Hot Air Balloon Ride

Sep 10, 2023 - Sep 16, 2023

Our annual balloon fiesta is happening this weekend. I was wondering if anyone with an ostomy has ever gone up in one. And what was it like? Did the air pressure, etc affect your pouch?

21 replies | 289 views

Rlooker10

Posts: 2

High output and watery output after ileostomy surgery - seeking advice and experiences

Nov 07, 2020 - Aug 15, 2023

I am four weeks post-surgery for my ileostomy, and I am still having a high output compared to what is considered normal. I'm also still having spells of very watery output. As this is very new to me and wasn't anticipated, it concerns me as I was hoping to return to a normal life after the operation but am currently being hindered by this. I am now on a short-term spell of TPN to keep my nutri...

14 replies | 2526 views

Scotland44

Posts: 2

Best swimwear for ostomy bag?

Aug 19, 2020 - Sep 19, 2023

I know I can't wear a regular swimsuit over the ostomy bag, but what can I wear that is comfortable and doesn't look too bulky around my waist? I have tried swim shorts with t-shirts, but the t-shirts tend to blow up around the top of my torso with the movement of the water. Any ideas women who have been swimming with the bag would be much appreciated.

Hazel.

21 replies | 2698 views

russellnotl

Posts: 3

Stoma protrusion

Aug 02, 2023 - Aug 22, 2023

Hello , had my surgery in april. Over the last two weeks my stoma has increased in size considerably. When I ly down it goes back to normal. Is this common

14 replies | 345 views

bbazajou

Posts: 3

How to actually meet a nice woman on this site?

Mar 17, 2023 - Sep 07, 2023

I had an ileostomy placed in 2021 and since then, my 15 year relatonship has ended. I'm now comfortable enough with my physical condition to start dating again but having some trouble getting started. I'm thinking that looking to meet a woman with an ostomy also may be a good idea because we already have at least one thing in common, lol. I'm kind of shy at first, so any input on how to get out...

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31 replies | 1653 views

Daughter

Posts: 72

Advice on output

Aug 16, 2023 - Aug 29, 2023

Hi everyone, my mom’s colostomy surgery was a year ago yesterday (August 15,2022) and we both are looking for advice regarding her current output. Mom had to get colostomy bag because of a perforation from a polyp removal following her colonoscopy procedure.My mom doesn’t really have any big health issues except her colonoscopy revealed she has gastritis and mild diverticulosis of the sigmo...

8 replies | 182 views

Kayakpixie

Posts: 6

Hernia Belts (prevention of hernias)

Aug 10, 2023 - Aug 22, 2023

Hi there! I had my lar loop ileostomy surgery on June 2/23. It was open surgery so I have a 15-20cm vertical incision.

I'm looking for a hernia belt to help prevent hernias. I've been back the gym for a few weeks now lifting light weights with no issues but the cardio class last weekend with the jumping made my stomach area very uncomfortable to the point I stopped and did step outs.

The belt th...

15 replies | 423 views

Ostomate & woundrn

Posts: 166

I'm thinking of writing another article

Jul 02, 2023 - Aug 18, 2023

I want us ostomates to stop being invisible. I want to write about why ostomates hate nurses in general and sometimes our frustrations with ostomy nurses as well. But I'd like to hear your thoughts. I don't want to just complain I want to find out what we as a group find most frustrating and upsetting

CLARIFICATION:

Because of my experience I have the desire to write an article aimed at the nurs...

27 replies | 896 views

Emonty

Posts: 1

Vent leaks

Sep 09, 2023 - Sep 17, 2023

I ran into an issue with Hollister bags. I have been using the 2 piece system since my surgery almost 4 weeks ago. The last 2 bags leak at night when I’m lying down. The area that leaks is out the white vent. I wake up a mess in the morning. Is this a common problem or faulty bags? Company is closed Saturdays. So can’t call them.

13 replies | 221 views

jalrein

Posts: 64

Dark lines on stoma

Sep 02, 2023 - Sep 03, 2023

I was emptying my bag and I noticed on my stoma at the top part, but it's at the base where it comes out of my abdomen, 3 dark red lines. Almost like the whole that I cut out in my 2 piece was too tight and these kindof look like blood vessels. The exit whole is at the bottom of my stoma however this it at the top but down at the bottom near my skin. ANYONE KNOW WHAT THIS IS OR WHAT IM TALKING ...

11 replies | 153 views

crappycolondiaries

Posts: 954

Happy National Puppy Day!!!!!

Mar 23, 2023 - Mar 28, 2023

Post a picture of your pup(s). I know we've had a few dog posts but really can you ever look at too many puppy/dog pictures? I think not.

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32 replies | 1023 views

Redondo

Posts: 200

How much fiber is too much?

Jul 30, 2023 - Aug 08, 2023

Two months ago, I started on a diet meal plan that incorporates eating5 healthy snacks every 2-3 hours along with 1 lean and green meal. I lost 17 pounds doing this. I thought all was good until I ended up in the hospital with a partial small intestinal bowel blockage. The snacks that I ate have 4-5 grams of fiber in them. The daily meal consisted of lean chicken, fish, or beef along with 3 ser...

10 replies | 267 views

funnybonemarrow

Posts: 1

Belts

Feb 09, 2023 - Aug 06, 2023

I've had my ileostomy for nearly 20 years. I've only used a flange and drainable pouch.

can someone explain the usefulness of using a belt?

9 replies | 393 views

gingerlee54

Posts: 33

GREEN Bile OUTPUT..

Jan 04, 2023 - Sep 06, 2023

Hi,

Can anyone tell me about the green bile output?

I NOTICE a grass-green to emerald green color may be every other day. Is this normal?

Thanks

7 replies | 348 views

bubbaduffman

Posts: 9

Has anyone found their soulmate or best friend

May 11, 2023 - Aug 27, 2023

Hi everyone

I can't help wonder if anyone has actuallyfound someone specialthrough this site I ask as I find it so difficult to find even a friendin this crazy world

I am new here and don't really think it would work but I am an optimist so who knows.

I am a chrones disease person with an ileostomysince 1991was married for almost 30yrssingle for the last 5 years

16 replies | 991 views

iMacG5

Posts: 1419

A RHYME - 2019

Jul 17, 2023 - Jul 18, 2023

I'm not sure if I posted this before so please forgive me if I did.

Hey folks,

I think it’s terrific you took the time
To express your thoughts in this little rhyme.
You certainly got some affirmation
From Bill’s written appreciation.

Lots of folks who contribute here
Are experts in various arenas.
Some are just learning but
Are way more than laughing hyenas.

We tend to be respectful
And usu...

5 replies | 160 views

SaharaToo

Posts: 18

Sweetcorn - safe or not - with an ileostomy

Aug 03, 2023 - Aug 23, 2023

I used to love eating corn on the cob and it's in season now in the UK. I have thought about trying it in earlier years but am afraid of ending up with a blockage. I could puree it, but it's not the same as gnawing on freshly cooked cob with butter.

For perspective, I love black beans and have eaten those (home cooked with seaweed) with no problems - sometimes, if I ate a bit fast, a few beans h...

21 replies | 584 views

crappycolondiaries

Posts: 954

How has your spouse/partner/significant other (Past OR Present) handled your ostomy/surgeries?

Apr 15, 2023 - Sep 17, 2023

Curious how others in past/present relationships have navigated these surgeries and ostomies with a partner. I have a feeling experiences will be across the board and hopefully some whose experiences haven't been the best up to this point can find encouragement/support in other's stories.

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67 replies | 2818 views

Redondo

Posts: 200

Shy Stoma

Sep 10, 2023 - Sep 20, 2023

Just wondering if anyone has the same problem that I do. When I change my pouch, nothing flows out for hours. It's like the stoma is shy and everything stopped working. I always change first thing in the morning and within a half hour I have a light breakfast as always. But nothing seems to come out for hours. I don't know if the air gets to it or what happens?

28 replies | 343 views

Ostomy4life_22

Posts: 44

Air to the skin

Jul 07, 2023 - Jul 11, 2023

Hello all you awesome people!!!

So this inquiring mind needs to know what some of you do to get air to your skin around the stoma? I was telling myself wouldn't it be great if there was something that a person with an ostomy could use over their stoma so air can get to the skin for let's say overnight or something. And if there is something please let me know.

Thank you for being awesome and help...

16 replies | 688 views

markmd1112

Posts: 24

Long flights with a colostomy

Aug 12, 2023 - Aug 16, 2023

Hello! Does anyone with a colostomy have first hand experience with flights that are more than 14 hours nonstop? I know from my pre-colostomy days, those flights cause digestive issues such as bloating, dehydration, indigestion and constipation. Does having a colostomy worsen those and add other issues? If so, any suggestions for how to minimize and manage them? I'm hoping to travel to Australi...

16 replies | 640 views

rustykunk1949

Posts: 4

Need help with ostomy bag seal and barrier ring issues

Sep 03, 2022 - Sep 10, 2023

I have trouble getting my bag to seal around my stoma. It always puffs up and stool goes in around it. The barrier rings do not seem to help. What am I doing wrong?

13 replies | 509 views