Meet and talk to people with an Ostomy

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

jphendsby

Posts: 5

How do men continue on with dating (Urostomy)?

Jun 27, 2023 - Sep 15, 2023

Hi all I have had my bladder and prostate removed last June. I'm still trying to get to this life but need to talk to people with the same thing. I would prefer a male as the question is something only a man can answer. Sorry ladies. How do men continue on with dating knowing full well that without a prostate the male can not get stiff?

9 replies | 384 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 | 712 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 | 510 views

Beatles0826

Posts: 10

Nausea and leakage

Jul 10, 2023 - Jul 12, 2023

Hi All,

I have had my stoma since May of 2021. I have had many issues unfortunately with leakage and skin rawness. I honestly feel like I am losing my mind. It seems no matter how differently I cut my hole (larger, smaller) for some reason at the bottom of the appliance where it meets the stoma, there seems to always be a hole that opens up and lets leakage through. I tend to have to change my ...

6 replies | 218 views

R

Posts: 12

Colonoscopy in stoma

Mar 16, 2023 - Aug 20, 2023

Anyone have experience with colonoscopy in stoma and rear-end at same time?

11 replies | 274 views

Bees

Posts: 27

Managing an ileostomy in the great outdoors

Jan 24, 2022 - Jul 15, 2023

Question from a new ostomate: How do you handle emptying an ileostomy when outdoors for hours or all day and no bathroom is nearby? For example, on a boat ride, hiking in a group, just sitting with friends at sunset, sunrise, or around a campfire? How about when camping, either backpacking or car camping? Are my tenting days over?

Thanks

Bruce

12 replies | 1211 views

xnine

Posts: 1098

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 | 582 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 | 2527 views

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Michaelthom13

Posts: 5

Best colostomy bags for a reliable seal?

Jun 04, 2022 - Jun 27, 2023

I've personally tried a few different ones. Overall, I think we can agree the most important part is a dependable, strong, lasting seal. The last couple brands (can't remember) I tried came off after a little bit of exercise or a solid day of running around. I now use Coloplast, and their seal seems to last the longest but still not reliable enough. I find myself constantly pushing in it and tr...

15 replies | 1064 views

Riva

Posts: 89

Stoma Anniversary

Jul 07, 2023 - Jul 08, 2023

Nine years today. Happy Stomaversary to me

7 replies | 180 views

thebertonlagden

Posts: 18

Hernia belts..... Please advise

Aug 02, 2023 - Aug 25, 2023

Hello all,

I had my surgery in April 2023 when Stanley my ileostomy was made. It has made an amazing improvement in my life.

In the last few weeks I seem to have a bigger bulge in the mummy tummy on Stanley's side compared to the other side and a frequent heavy dragging feeling..... Hence I wonder if I am developing a hernia?

Am due to see my stoma nurse next week but wondered if anyone could rec...

13 replies | 302 views

Bubbles2010

Posts: 12

Pantyhose and Ostomy Pain: Seeking Advice

Dec 23, 2018 - Jul 26, 2023

Hello there fellow pantyhose wearers! I need some advice. In the winter months, I have no option but to wear tights or hosiery under dresses and it's causing me a lot of pain. I haven't had anything burst because I empty it a lot more frequently, but I definitely wear dresses for special occasions only due to the discomfort. Thigh highs aren't really an option because my legs aren't toned and t...

11 replies | 6651 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

HenryM

Posts: 2317

Ostomy Memories of Ethics vs. Morals

Jan 12, 2023 - Jan 27, 2023

ON SOME SUBJECTS, A DICTIONARY barely touches the surface. Morals, my dictionary says, are a person’s standards of behavior, while ethics are said to be moral principles that govern behavior. Sounds kind of the same, but in common usage they have come to be distinguishable. Neither have any particular relationship with religion. Some of the most ethical and moral people I’ve met are...

19 replies | 1015 views

rachelle1412

Posts: 2

Best convex baseplate? Trying to avoid 3rd surgery.

May 18, 2023 - Jul 10, 2023

I am looking for opinions on the best convex baseplate for a flush stoma (it also really retracts way below skin level when active)? Or techniques to help the seal? My first surgery was in 2020 and second in 2021 and I've never been able to get a good seal. Output always ends up under the barrier ring on my skin, regardless of ring brand. It leads to leaks past the ring reasonably often. I am q...

17 replies | 637 views

Catlaw2

Posts: 9

Does anyone suffer from ileus

Jul 30, 2023 - Jul 31, 2023

Does anyone suffer from ileus

5 replies | 203 views

Virgo68

Posts: 26

Coloplast Sensura Mio Convex Flip

Jun 29, 2023 - Aug 21, 2023

I know this question has been posted in the past, but I am testing out this new bag, Coloplast Sensura Mio Convex Flip because I have a hernia. So far, I don't particularly like it. I think it leaks too quickly because of the petal form. I use barrier seals and I've tried using those barrier strip tapes but the tape adhesive is stronger so that it is harder to remove, even with adhesive remover...

14 replies | 404 views

tomlang2434

Posts: 2

Intestinal yeast infection

Jul 15, 2023 - Jul 31, 2023

Hi I'm new to the group every time I end up in the hospital they tell me I have a intestinal yeast infection my original surgeon the only one that acted like he cared tried all the yeast meds nystatin and all the other ones I'm at a blank on all the other ones I've had 5 stomach surgeries due to uc I have an illiostomy plus they put me on high doses of prednisone which gave me something called ...

13 replies | 366 views

swimfit

Posts: 10

Seeking Replacement for Hollister 7730 - Water-Resistant Adhesive

Jan 06, 2022 - Sep 04, 2023

So the title says it all really.

I've been advised by my local ostomy supplier that Hollister 7730 adhesive spray is being discontinued. I promptly phoned the local Hollister agents and they confirmed that it's a global withdrawal by the manufacturer. They didn't know why, but it's presumably either due to material regulation or because it's not profitable. I'd be happy to pay double the price -...

18 replies | 5082 views

Ostomate & woundrn

Posts: 166

Can you name the movies?

Apr 13, 2023 - Apr 17, 2023

Who can finish these sentences...or identify the picture?

"Could be worse..." "I was going to make espresso" "You take the blonde I'll take the one in the toiban". "The staircase can be treacherous"

Hello handsome, is that a ten-gallon hat or are you just enjoying the show". "Don't just stand there clasping your hands in pain... How about a round of applause for The Waco Kid?". "A man ...

21 replies | 527 views

MassMikMouse

Posts: 32

I just can’t put the dang bag on correctly!

Jul 17, 2023 - Jul 24, 2023

Wow. First of all everything I typed has disappeared so I'm going to make this short and sweet.

I had my urostomy surgery 7 1/2 years ago and I seem to be running into problems with bag leakage. Using the Coloplast SenSura Mio deep convex one piece transparent bags. I have lost about 30 pounds, and I am wondering if this is a cause for change in my stoma. I also have multiple sclerosis, so "siti...

9 replies | 321 views

Lydia

Posts: 12

Colostomy and Wine: Anyone Else Experience This?

Nov 21, 2010 - Aug 19, 2023

Hello all,

I had my colostomy on the 7th of Oct, and since then have made great recovery from the operation.

Friday night, I decided to treat myself to some wine, I just wanted to take that next step to feeling more normal again.

But oh my goodness, my colon didn't like it at all. An hour after a couple of glasses, all it had in there kept coming out of Winnie (stoma) as runny as water. I had to c...

15 replies | 14886 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

Kiwi Al

Posts: 5

Any hobby beekeepers here

Aug 26, 2023 - Sep 19, 2023

Recent permanent Ileostomy may 25th 2023, I am a hobby beekeeper and am worried about being about to lift honey boxes, which can weigh up to 50 lbs

anyone here have any ideas please?

9 replies | 261 views

Hisbiscus

Posts: 127

Ostomy deoderant

Jul 28, 2023 - Aug 29, 2023

Hi all, does anyone in the Cleveland Ohio area have a bottle of Ostomy deoderant I can purchase off of you?
my boss did not put our pay in on time and to order online it will take days to get to me. I'm almost totally out and need it for work at least.

12 replies | 314 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

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 | 641 views

MairiC

Posts: 8

Coloplast without barrier ring?

Jun 23, 2023 - Jul 03, 2023

Hey, anyone who uses Coloplast.....my pharmacy failed to reorder my supplies so now I have to wait until Monday for delivery. I am completely out of barrier rings but I have a couple of one piece pouches. I'm currently wearing a Convatec one piece that I had received as a sample a long time ago. I hate it, it's peeling off at the edges and my skin is getting itchy. Has anyone used Coloplast bas...

10 replies | 273 views

Feb9HH

Posts: 70

I’m thankful for my ostomy because now I can…

Feb 05, 2023 - Jul 28, 2023

Drink coffee and drive at the same time! I never thought I'd be able to do that again. Have a blessed Sunday friends!

18 replies | 648 views

Freestyle

Posts: 12

The colostomy operation

Sep 08, 2023 - Sep 11, 2023

Hi everyone . Has anyone on here had a colostomy while having cirrhosis. My husband has this and also rectal cancer.we have been told that the operation has a 1 in 4 survival rate, so obviously we are terrified. We have also been told that if he survives the operation the recovery from the anal closure is going to be a problem healing. We just wondered if anyone has any help for us . Thank you...

17 replies | 268 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 | 227 views

RessaMarie

Posts: 2

New Member introduction

Jul 18, 2023 - Aug 08, 2023

Hello fellow ostomates. I hope you all are well. I look forward to getting to know you all.

I am a recently new ostomate as of March of 2023. I hope I can build friendships with you all, gain and share ideas and advice, and meet new people, especially in my area, so I can build friendships with others who understand.

One thing I have found is the no one in my circle seems to really understand the...

16 replies | 662 views

kclay1230

Posts: 4

Effects of opiates on output

Jul 18, 2023

I've had an ileostomy since 1988. I'm facing rotator/ bicep surgery soon. Will I be able to empty and change my bag on my own?I use a 1 pc. bag. Wondering if I should use a 2 pc system temporarily so it might be easier for my husband to assist me.

ALSO,will opiate pain meds cause constipation even without my colon?

8 replies | 280 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

AlexT

Posts: 2823

Best ostomy advice I can give….

Oct 03, 2022 - Mar 21, 2023

Here it is, all my wisdom wrapped up in 1 simple statement....This ostomy thingy you got has either saved your life or made it better in some form. You're not buried in dirt and hopefully you're feeling better, enjoy each and every day. It's not that bad in the big scheme of things. So, put your cape on and have a good Monday.

19 replies | 1322 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

joeycooper65

Posts: 2

How to slow down digestion and bag changes

Nov 14, 2022 - Jul 13, 2023

Hi All,

New to the group and considering what's the best way to slow down our guts and intestines. Naturally with food and not naturally ie drugs like Imodium or codeine.

Any advice on what you all do to control your diet and try for more solid stools. Thanks Joe

14 replies | 1174 views

maddysexipolo101

Posts: 2

Abdomen cramping pain

Aug 20, 2023 - Aug 21, 2023

Hi I've been having severe cramping in my abdomen I find it's happening alot lately, most times right after urinating I will get these cramping also after I drain my pouch o get the cramping aswel this has been going on for 2months now maybe longer,the pain is horrible, I'm forced to take pain meds just to get through them. I'm not sure what's causing this has anyone else experienced this, so...

5 replies | 158 views

Okra

Posts: 9

How much water to drink each day after you get an ileostomy?

Feb 06, 2023 - Sep 09, 2023

A man had posted on this site that after his ostomy surgery, his urine output had decreased, and he wanted to know if that happened to everyone.. Any person who has an ileostomy should be seeing a KIDNEY SPECIALIST. My surgeon sent me to a kidney specialist when I left the hospital because if tons of the liquid you drink is going out in your ostomy bag, you are NOT GETTING ENOUGH LIQUID GOING T...

6 replies | 408 views

Violeteve2016

Posts: 1

Husband doesn't seem to want to be intimate now

Aug 23, 2023 - Sep 09, 2023

I had my permanent ileostomy surgery 7 weeks ago due to Crohn's disease and I've been talking about getting intimate again with my husband and he doesn't seem interested at all.... it almost seems like it makes him nervous and turned off...it just makes me feel worthless and I don't want him to be grossed out by me and not want me anymore. I just feel sad because I was worried this would happen...

15 replies | 657 views

debbinmiller

Posts: 37

Having a Bit of a Meltdown?

Jun 22, 2023 - Jun 29, 2023

It'll be 6 months from my surgery in 2 days, and up until now I thought I was dealing and adjusting with all of this pretty well. Then all of a sudden, out of the blue I wasn't! I don't know what triggered it, maybe planning on seeing some relatives this weekend I haven't seen in 40 years? The fact that I not only have 2 stomas, but also now developed a hernia the size of a small watermelon? Wh...

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31 replies | 991 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

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

eefyjig

Posts: 572

Perfect dress!

Jun 24, 2023 - Jul 02, 2023

I have a tip for those looking for the perfect dress to work with an existing stoma. I found it on Amazon - tank dress with ruched tie waist. It's a mini but longer on

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31 replies | 1278 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 | 1654 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

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

Danno

Posts: 95

Almost 8 months out.

Aug 19, 2023 - Aug 25, 2023

That’s me.. :) 8 months out from what I thought was the worst moment of my life. As we all know, going through the trauma before and even after surgery, can be hard to recover from.

I haven’t been on here in a while but figured I’d swing by for an update.

Since the big day I took a few months off to focus on recovery. I followed the rules, didn’t lift anything heavy, and kept ...

17 replies | 702 views

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