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Negative feedback on a dating site

Past Member
Mon Mar 30, 2020 9:29 pm
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 Hi 1more,

I have an ostomy not an ileostomy but I assume the bag sticks on the same way. I talked to my ostomy nurse recently and learned to clean up with only water (wet paper towels) instead of baby wipes first to clean it initially. It made a huge difference for me so far. I still use the adhesive remover but go over it with water so there is no residue left. Don't know if that applies  or not?

   ..mtnman. 

These are the top 5 issues ostomates face:

1. Dating and relationships
2. Concealing the pouch
3. Foods to eat and avoid
4. Losing or gaining weight
5. Pouch ballooning

Check out this video from MeetAnOstoMate.
Mon Mar 30, 2020 9:31 pm

Hi 1 more day,

Does you hernia make your stoma stick up? You may want to try a convex pouch system. That could help. Maybe the force of the output against the pouch has no room so it goes to the least resistant place. I have never used any ring for the Coloplast or Convetec two piece pouches I wear. Did I understand you are using a barrier ring in addition to the flange of the two piece system?  Have you tried without the additional barrier ring? I know you must be frustrated. Maybe Try some other products too. All adhesive is not created equal. Lol and even if it works for a while, they change it on you sometimes. Hope you find your perfect pouch. 
Puppy

Mon Apr 06, 2020 4:14 pm
Mtnman wrote:

 Hi 1more,

I have an ostomy not an ileostomy but I assume the bag sticks on the same way. I talked to my ostomy nurse recently and learned to clean up with only water (wet paper towels) instead of baby wipes first to clean it initially. It made a huge difference for me so far. I still use the adhesive remover but go over it with water so there is no residue left. Don't know if that applies  or not?

   ..mtnman. 


Thank you for your reply. I was taught from day one only water. In fact I know never hot water! Just tepid if in the shower as well as during a bit of an accident. I heard stories of what things some people have done. I did a lot of reading about this thing. I do appreciate it, however, I think if I used anything like a baby wipe, you would hear my screams of pain whetever your located🤣 My ileostomy is mostly excoriated because I can't keep the appliance on more than 25 hours . I've had private insurance I pay nearly 20 grand for for the last 40 years getting bags and things wasn't an issue until Medicare became primary. I've seen stoma nurses, hospital , doctors. Nobody understands why it happens but believe the hernia causes the bag to leak and hurt badly. The dr.s send a letter to Medicare each month requesting 30 pr 40 bags for the month. Still I only receive 20 bags for the month and must wait a long time between deliveries. I use Edgepark.  The doctor sends a letter of medical necessity each month as requested to three places for approval and 20 bags arrive when they feel my month is up. So excoriating ileostomy is my way of life. I'm in pain around the stoma and because of a tumor they can't remove. Such is life. Take Care!!

Past Member
Mon Apr 06, 2020 5:21 pm
1moreday wrote:


Thank you for your reply. I was taught from day one only water. In fact I know never hot water! Just tepid if in the shower as well as during a bit of an accident. I heard stories of what things some people have done. I did a lot of reading about this thing. I do appreciate it, however, I think if I used anything like a baby wipe, you would hear my screams of pain whetever your located🤣 My ileostomy is mostly excoriated because I can't keep the appliance on more than 25 hours . I've had private insurance I pay nearly 20 grand for for the last 40 years getting bags and things wasn't an issue until Medicare became primary. I've seen stoma nurses, hospital , doctors. Nobody understands why it happens but believe the hernia causes the bag to leak and hurt badly. The dr.s send a letter to Medicare each month requesting 30 pr 40 bags for the month. Still I only receive 20 bags for the month and must wait a long time between deliveries. I use Edgepark.  The doctor sends a letter of medical necessity each month as requested to three places for approval and 20 bags arrive when they feel my month is up. So excoriating ileostomy is my way of life. I'm in pain around the stoma and because of a tumor they can't remove. Such is life. Take Care!!

   Hi 1moreday,
I have a little hernia between my naval and my stoma. It seems to stick okay. The lower half of my stoma sinks in along with my stomach. The upper part of the stoma protrudes about half an inch so it's higher on top of my stomach. 

On the under portion I cut a wax barrier ring in half, stretch it to contour around just the bottom of the stoma. That builds it up level. I use a convex bag and it works better than a normal flat one. (Where the hole is cut to size)

I don't know if that helps either. Everyone I imagine comes in different shapes. Please let me know...mountain. 

 

Thu Oct 14, 2021 6:43 pm


NJ Bain wrote:

Merijane,

 

  First off, fxck that guy, he is NO gentleman.  He's an immoral, uneducated, entitled piece of shxt that knows jack about shxt.  Obviously, he's on the POF site just to get laid.  The balls on this guy to say you should post your condition or withdraw from the site, blows my mind.  I mean, he isn't disclosing that he has a micro peen or needs a pill to help with his ED.  So wtf is his issue?

  You survived cancer.  Your body was put through the ringer.  This coxksmoker that said to disclose information or withdraw from the site doesn't have a fxcking clue what it is like to suffer, obviously.  And his "Holier than thou" attitude, really makes a person want to meet this a$shat in real life and give him the what for.  Don't worry.  Karma is gonna bite this guy in the a$s real soon.

  I've posted in the forums many times about this subject.  See one of my posts in the link below.

https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=9825

 

  An ostomate can date anyone and that someone will not even know you have an ostomy until you disclose it to him or her.  And I know the warped body image can really mess with your head because of your ostomy.  But because you have this, you are alive.  It's almost but not quite like asking, "Do you prefer cake?  Or death?"  You can hide your ostomy with a corset and no man would be the wiser.  And most of the time, in the heat of the moment, most people don't care.  Sex with an ostomy is no different than sex without an ostomy.

  As far as your leakage problem goes, your ostomy shouldn't be leaking at all.  And you shouldn't have to change it 5-6 times a day.  I've had an ileostomy for 24 years and I've had about 8 leaks that entire time.  I use a drainable pouch that I change every 3-4 days.  I think it depends on what brand of pouches you use, if you use a 1 or 2 piece system, and/or if your stoma is not formed correctly.  I mean, is the stoma getting under the wafer?  Are you using closed pouches or drainable?  Do you have a decent ET nurse?  If you could describe in a little more detail of the frequent leaks, everyone here on the site will probably have some useful suggetions.

  Don't let one bad experience sway you from finding the right person to be with, ostomate or not.  There are a lot of good people out there.  It may take time, but you will find the one that suits you best.

 

Bain

 

You can't just assume that someone with an ileostomy shouldn't have leaks. That's awesome you have avoided them for the most part, but I have an ileostomy that turned into a jejuostomy after my last surgery, which removed most of my remaining digestive tract. I have no colon no ileum at all and not even an entire jejunum. I have 6-8 liters of output (yes! That's NOT a typo!) a day and 2-3 liters at night. I have short bowe syndrome and I'm am barely living, I have chronic malnutrition and a multitude of other problems from this condition. 

I have no hopes of dating nor getting married ever. If this happens to normal osotmies then I can't believe anyone would want someone who has To wear 1080ml (1 liter sized huge high output bags and STILL need to empty the bag over 35 times a day! No Joke, I counted and it was over 45 times just during the day time one day! 

im only 33, I was 32 when it happened, I just turned 33 and have been alone ever since. I tried Facebook dating for a few months after my surgery and everyone that I mentioned the condition to since the bag is so huge and vsisible always...immediately stopped talking to me. 

Fri Oct 15, 2021 12:15 am


Anonymous wrote:

  Hi Merijane,

So sorry many people can't look past something just "different " than the norm. At least on this site we are the same. We've learned something's the hard way as you have. I am blessed with my wife she has her moments but don't we all. We are all here for support and learning. And I've heard of people finding relationships here too.

You have and are living through some "tough times " but you are at a good place here. 

 

The guy was just a jerk a judgmental jerk And totally immature . There is plenty of men and women that are excepting of our pouches . Unfortunately this fella sounds like he was just an immature idiot with no compassion

And there is lots of groups online for people such as ourselves when I received my ileostomy and I was going to help before hand it was these groups to help me get through it to know there's people like us out there. There is other Facebook groups that are dating sites for us in this situation and Instagram is full of people with our similar issues. 
Regarding your leaking issues I would look at the products that you were using because there's good products out there that can really make sure your bag does not leak as much as you are experiencing at this time. With myself there is the main flange the square piece that the bag sits on top of and then I have extenders that side just on the rim of the flange to prevent further leaking Also around you stoma what is really helpful is if you have what is called ekin ring , this prevents leakage of your stool under the flange. 

Do you have an ostomy nurse that can help you and give advice ?

If you wish you can reach out to me to discuss your issues and I can give feedback

My name is Frank and I'm new on here 

 

 

Fri Oct 15, 2021 2:12 am

I would rather shit in a bag than have shit for brains. I can understand someone being turned off by that but there's no excuse for that type of behaviour. I have started using some dating apps but unlike you I'm not going to announce that I have an ileostomy until I've met someone, we both like each other and the time seems right. Fingers crossed the reception isn't too negative.

Past Member
Tue Nov 02, 2021 12:16 am

On a dating app, you can swipe right over and over again, but ultimately you get nowhere. The average person is spending 12 hours each week on dating apps, but these apps don’t get smarter or better at matching you. They are designed to ensure you keep making the same mistakes over and over again. Why? Because they only reinforce the same bad dating habits, instead of helping you get closer to finding love. You end up choosing the same types of people to go out with, and once you’re finally on the date, you keep doing the same things that threw you under the bus the last time https://asianfriendly.com/blog/.

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