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Negative feedback on a dating site


Mon Mar 30, 2020 9:29 pm
"MeetAnOstoMate is the best website for people with an Ostomy. So much understanding. Everyone should join."

 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. 

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

MeetAnOstoMate - 27,748 members
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!!


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....

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 bles...

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.


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/.

Sun Dec 05, 2021 9:48 pm

That guy that said that to you needs to get punched in the face! There is no prerequisite on a dating site that you need to disclose any personal medical details about yourself. As you get to know someone it is your decision when to tell them. I've had my ostomy for 10 years now and I can completely understand what you are going through. My self confidence took a swan dive once my bag arrived. I've had two relationships since then and they've both been great about it; I'm always the one who has more of a problem with it than my partners have! I think a person who is looking for a real relationship and connection will be willing to learn about it and get used to it and it won't be an issue, but a person just looking to score sex with a bunch of randos might be more likely to, which is what that douchbag probably was. I'm truly sorry that happened to you. You deserve love, respect and partnership just as much as someone with a fully intact alimentary canal does. Good luck out there!

Mon Dec 06, 2021 9:26 pm

Thank you for the kind and encouraging words.

Merijane 

Mon Dec 06, 2021 9:40 pm


Bill wrote:

Hello Merijane.

Thank you so much for your post as it gives me yet another opportunnity to express my point of view on people whom I call 'bullies'.

Now! it might not seem that this guy is an ou...

Thank you

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