Dealing with Negative Feedback on Dating Site Due to Medical Condition

I found a man who appeared to really like me, and before meeting him, I told him about my ileostomy. He proceeded to chew me out and say that no one is going to want to make love to someone with a shitbag next to them. He said I should take my profile off the dating site because I was lying to people by not posting my condition. Before meeting anyone, I have always written to them ahead of time to let them know about my condition and explain what happened to me.
I had a surprising diagnosis in September of colon cancer. I had surgery on October 7th, and it was all removed, and I am cancer-free. But during the surgery, the bowel leaked into the rest of my body. The bowel contents are full of bacteria, not all of them the kind that should be floating around in the rest of your body. This was a surgery that was supposed to take three to four days, and then you're home. In my case, I had two more surgeries and nearly died two or three times and had code blues called. I was in ICU more than I would like to even remember, and fortunately, I remember very little. My stay in the hospital ended up being 50 days, and then 10 more days in a rehab hospital learning to walk again as I was so weak. It felt so long on my back that my muscle loss was so significant that I could not even stand on my own. In all, I had three surgeries and acute respiratory failure, total sepsis, heart failure, and on and on. Your poop does not belong in your body. That's why it goes in and then out. I have heard of this leaking happening to other people, and I don't know how common it is, but in the end, I survived but ended up with hopefully a temporary ileostomy. Why am I telling you this? Because one man on POF said I should pull my name off the site and/or disclose my condition. So I'm just closing it, and I don't want to be alone my whole life. I'm also hopeful that they can reconnect it successfully and that during the reconnection, it doesn't leak. I don't think my body could survive that again. So I have a little bag on the side of my body that I have to change five to six times a day and empty it. How does sex work? I know that there is a website that I've been reading for ostomates. It's for people with ostomies, and there are many different kinds. There is a colostomy and an ileostomy and a few others. I would suggest you Google it and see if you're still interested in me, and if not, you don't have to write me back and tell me I shouldn't be on this site. I'm hoping there's someone out there who can put up with a little inconvenience. I know now that people do have sex and relationships, and they don't go and bury their head in the sand for the rest of their lives. Thanks for taking the time to read this. All my best, Merijane

Have others had this leaking problem after the surgery and ended up with an ileostomy? Is this frequent, or is it malpractice when it happens? I frequently have leaking from the bag during the day, which I can deal with, but at night, it makes my bed a mess, and I have to stop and change the bag and change all the sheets. What do you do about that? I was wearing diapers, but not even that kept the mess away. Do I buy plastic panties to put over the bags so when it leaks, I don't have such a mess? Is this too many questions? I'm feeling quite down tonight after that gentleman told me it was unfortunate for you, and it was not your fault, but you need to disclose this up front before seeing someone, which I do. That's how he found out about it. But he felt I should have told him sooner and that I should put it on the blog. Well, I don't think my profile would look very good with that sticking in there. I have a lot to offer a man with or without a bag. What do you all think I should do?

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 some things 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.

Merijane,

First off, fuck that guy, he is no gentleman. He's an immoral, uneducated, entitled piece of shit that knows jack about shit. 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 what the fuck is his issue?

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

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

We'll be careful. This site has a ton of great info, but the dating side is not very friendly. You send messages and get no responses. The chat section is hardly active.

Glad you're doing better and I will be praying for you.

Chris

What you do tell or don't tell about that condition is your prerogative, nobody else's, especially since you will undergo a reversal in the future. Dismiss those objectionable words as the dark muttering of an ignoramus.

Words of Encouragement from Ostomy Advocates I Hollister

Ah, yes. Our jerk-detectors. It appears that yours has identified a massive jerk...off the charts...thus potentially saving you a lifetime of misery. The appropriate response is gratitude.

Good riddance to bad rubbish! He wasn't good enough for you with or without a bag...and I suspect as you find a lot of them on dating sites are just there for one-night stands or just to play games with people's hearts and minds as they're sick and get "off" on hurting people, and you will even find people like that on this site. Don't think just because they have an ostomy they won't play games!

Having an ostomy won't stop anyone from falling in love with you. You're still the same person as you were before having an ostomy. The same people that would have fallen in love will now too.

Just get out there, have fun, and build your confidence back up.

One life, live it...Never let an ostomy rule your life.

Hi Merijane,

I lived with a man for 20 years. We have a daughter together. After spending 6 weeks in the hospital recovering, I went to visit my sons. I didn't notice, but he took my house key off my ring. When I called to say I arrived safe (they are 4 hrs away), he told me not to come back. He had my car towed back and gave it to our daughter. All I had was $40 in my pocket for gas and a gym full of what turned out to be all I owned. I should have lawyered up, but it's not me. I will rebuild. It's good you found quickly what a jerk this guy is. I now live with my sons. My oldest gave me his bed, and the government is taking care of me for now.

Anytime you need someone to talk to, I don't have a phone anymore, but I do have email: tealmatrix@gmail.com.

Hey, so glad you have reached out here! That sorry piece of shit should withdraw himself from that site; who would ever want someone so hateful!
Bain said it all perfectly! Lol

Yep, you should not be having to deal with all that you are.
I had a lot of leaks when I first got my colostomy, but it was because I was given some cheap pouches at the hospital and being ignorant of what was available, I ordered the same ones. Eventually, I found the right thing for me: a two-piece pouch system that I only change every 10 days. Sometimes, I change the pouch, but not the flange, sooner.

Please call Convetec, Coloplast, and Hollister to have them send you samples. They will send you usually three of each one you are interested in and follow up in a few weeks to see how it worked for you. Also, ask for adhesive wipe remover, barrier wipes, barrier strips for added security, and barrier rings. The whole kit and caboodle! They want your business and will send it for you to try. The people that gave me my crappy pouches never used one themselves, so they don't really know.

This life is not that tough. I have never had a leak at night and have only had one leak in the past year and a half since I found the right pouch system, and that was my fault. Lol

Good luck,

Puppyluv

Chiquis, eight years ago, during emergency surgery, I experienced a leakage of bowel contents into my abdominal cavity. I only spent five days in ICU, but ten more days in the hospital with heavy-duty antibiotics... Sounds like you need to try a convex wafer to help stop the frequent leaks. I have extra supplies to give. I'll PM you for your mailing information if you are interested.

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 outright bully on the surface, as he is doing it within a self-centred, egotistic framework, whereby he is trying to 'lay the blame' on you for his own inadequacies. This is typical 'bullying' behaviour, in that he says something objectionable and then lays the blame on his potential victim.  

I have written several books on bullying, so I have composed literally hundreds of poems on the subject from all sorts of angles, and it is difficult for me to find a wholly appropriate rhyme to suit this particular set of circumstances. However, there is one that springs to mind which I penned as a generic message to all 'bullies', who might deem it as their perogative to 'tell' me what I should do.

Best wishes

Bill`

SAVE ME FROM THOSE
WHO WOULD GET UP MY NOSE.

Save me from those who would TEACH me.
Save me from those who would PREACH t’ me.

Save me from those who would TELL me.
Save me from those who would SELL me.

Save me from those who would JUDGE me.
Save me from those who would BEGRUDGE me.

Save me from those who would ORGANISE me.
Save me from those who would SUPERVISE me.

Save me from those who would CONTROL me.
Save me from those who would PIDGEON HOLE me.

Save me from those who would MANAGE me.
Save me from those who would SALVAGE me.

Save me from those who would FLEECE me.
Save me from those who would POLICE me.

Save me from those who would HUSTLE me.
Save me from those who would HASSLE me.

Save me from those who would ENSLAVE me.
Save me from those who would SAVE me.

Take these things from my nose and set me free!

                                                     B. WITHERS 1995

Well said, Bain... That disgusting piece of shit guy who said that horrible stuff to her needs a lesson in real life.  

Ange

Ditto!!!

We can only hope there is a special place in hell for that guy. Somebody has already said it better than I - the proper response is gratitude - that you didn't get stuck with him. Hold your head up - you have done nothing wrong. This has been a difficult lesson in how shallow some people can be. Not everyone is like that. Hope you find someone who is genuine.

Merijane,

You already know that there are good people we come into contact with throughout our life. And there are bad ones we come into contact with and immediately avoid. The individual that deliberately disrespected you already is living in his own hell by having to be consumed with his own ugly existence from which he cannot escape. He is suffering a much bigger cancer than the one you have been rescued from. It's him. Take heart my friend.

So sorry that happened. There's simply no excuse for his behavior. He sounds like a narcissistic personality and I'll bet you're better off away from him! I find myself single as well and choose not to disclose my colostomy until it appears a relationship is going to move forward as you did. You're under no obligation to disclose very private information about yourself to people you barely know. All the best. Richard

I've been an ostomate for 42 years now. I have both a colostomy and an ileal conduit. I've had the two bags for more than half my life and been in four relationships, and not one of them had a problem with my 'baggage'. This individual you speak of is definitely a jerk and not worthy of you! He doesn't deserve you! So don't give up!

As far as leakage, you may want to look into changing appliances. If you have access to an ostomy nurse, contact her. She can help, or the company you buy your supplies from should be able to provide recommendations.

Best of luck, Chiquis! Hang in there! Remember, there are always resources out there to help. This website is one; another that I communicate with and has provided me with valuable information is INSPIRE.COM.

Obviously not worth it. For all he knows, he could have one this time next year. 100 different ways to end up with a bag. Surely you know you are not alone....

We are all so sorry you were treated like that and had to hear those cruel and horrible words.

His loss, by the way. I'd be honored to go out on a date with you.

I will try to answer one of your questions. Everyone else seems to be handling the jerk. I spent too much time with a leaking bag. Nighttime accidents were the worst! Here is a temporary measure that sounds too simple but actually works. When going to bed, place a large, unfolded washcloth next to your bag. Ruined the washcloth but the sheets and new mattress stayed clean. Helps if you are wearing ostomy underwear.

BAW

(Girl, ileostomy)

I, too, had cancer, with a colon resection, radiation, and chemo. The radiation damaged my colon and left a pocket which wouldn't heal. Slowly, over the course of the next few years, the area which wouldn't heal kept working through the wall of the colon until it finally perforated. All the poop which was supposed to stay on the inside of my colon ended up in my abdominal cavity, causing peritonitis (sepsis) like you had. Antibiotics could not keep up with the massive infection, so I ended up with a colostomy. Although it was supposed to be temporary to give my body a chance to heal, the remaining part of the colon where it would be re-attached is so damaged and friable that reconnection or any other kind of surgery in that area is not going to work.

Mine is a colostomy rather than an ileostomy, so that is slightly different from yours. But mine is permanent now. It is not the end of the world! My husband stood with me through all of it. (Yes, we still have an active sex life.) I did not have to go through dating with an ostomy, but there are lots of people out there who are empathetic enough not to let that stand in the way of getting to know you better. Sometimes it seems you will never meet them, but just make a lot of friends and that someone special will show up when you aren't looking.

Acceptance by others can be difficult if you can't accept yourself as you are right now. Once you get your self-confidence back, it will be easier to interact with other people. Not only is your ostomy not the end of the world, it's also not the most important part of who you are. It saved your life, but it doesn't have the right to rule your life; don't give it that much power over how you live.

And let me give you a hint: there's a lot of jerks out there in the dating pool even without you having an ostomy! I kissed a lot of frogs and dated a lot of jerks before I found my one and only.

I'm so sorry you were treated poorly by some self-absorbed human being. The best thing would be to say something polite, like he was open to a friendship but nothing romantic. Before my ileostomy, I thought that before anything else, I would need to tell the person I had an upper denture due to an accident I was in at the age of eight. I wouldn't be so brave to date now. If anything, I believe you're courageous. I can understand not wanting to broadcast your personal info. As far as I'm aware, on these sites, people are not always what their picture shows for the intended viewer, and also plenty of people leave things out until it's a bit serious. What we deal with isn't something I would broadcast to just anyone. Think of it like this, if you had a child, you wouldn't introduce that child to someone right off the bat. You protect that child first. So in this case, you must protect yourself first. At least you know his true colors. Not worth your time. That's for sure. Good luck in your quest. Try to center yourself around supportive people. This clown sounds like he needs too much from anyone... guaranteed he has flaws!

I can relate to your ordeal. I had the reversal done in 2004. This guy I met knew what I was dealing with. Then when we got together I was 11.5 years into life without anyone and a horrible working reversal that the small intestine collapsed. I ended up in the Midwest, near death. My daughter was told a simple procedure went south. I can't remember much, my daughter recalls everything painfully. The guy I was with for 4 years expressed his devotion and love. Well... he cheated on me while I had my surgery from a perforated small intestine. I'm incurable and inoperable. I've been battling many illnesses due to a rare cancer-causing disease. I'm an orphan; only one parent could pass this on. Nobody knew when I married that I had this disease and passed it onto my now adult children. When I arrived home to this guy of 4 years, who was a drunk and druggie for 45 years and was recovering with a new liver, he was a grumpy guy. I saw the good in him until I arrived home and my belongings were locked in the house we bought, redid the whole house. I paid for paint, window dressings, and furnishings to make it beautiful. He lied to my daughter about me, fortunately, my daughter was with me and knows me well enough. She packed up my things and I never looked back. He wanted sex all the time. I had to admit that because he wouldn't let me heal. I had to commit to sex whenever, regardless of near death, 80 pounds, a new ileostomy, short bowel syndrome, leaking all the time, pain I never complained about. Not that I had a chance! But you get it. He wanted the thin body and "no shitbag." I'm alone, sad, broken, and lonely now. I'm 61, I look 50, but I'm unlovable with the exception of my daughter, who is married, successful, and I kind of need my own life. It's been hard. I will admit the guy hurt me to the extent I know I will never be loved by another. It's been rough years and he wasn't strong enough to stand by me. My husband of 39 years has dementia, lives in a nursing home now because physically I couldn't do him and chemo. My kids at the time had their surgeries, it was too much. So I went 26 years with no sex life and caring for my husband by myself, worked 5 jobs, took care of a house and kids. Now I have nobody in my life but my daughter who checks in on me. But the road is well-traveled and a lonely one. I'm well-read, intelligent, but my once beautiful body has now topped off at 130 pounds. It no longer is a flat stomach, I have a permanent pic line in my chest, a permanent ileostomy, a host of meds I must take to keep myself above ground. I'm funny though you wouldn't get that from this diatribe of awful stuff. I am grateful for each day, I love art, photography, outdoors, and people. I try to keep a comedic outlook on these things; it's work. I lost friends because of this bag thing. People just don't get it. Some things I can no longer do: bowling, horseback riding, jumping out of planes, or swimming in the pool or ocean. Otherwise, I'm still me. People can be mean and I pray they grow into someone nicer. I'm exhausted from having hurt feelings and being disregarded like trash. I pay my own way, I care for myself, I don't rely on anyone. I worked and relied on myself and what I saved my life for. It's modest, but I knew life for the first 7 years of my marriage before becoming a full-time caregiver. I still visit my husband; he became ill. Nobody saw that coming either. But friends went their separate ways because I guess that's what happens in life. I hope better for everyone out there. That's all one can do. Just be grateful and move one day at a time. Absorb all the little things. Maintain yourself, keep up what makes you feel good on the outside, and stay in therapy to accept the bodily changes from health and age. When you can't work on your core that you once took pride in. Life has its challenges; however, I'm alive and so are all of you. Thank goodness!!

I am on a dating site as well. I wish I knew when the proper time was to tell the gentleman that I have an ileostomy. I wish there was a dating site just for that. We have all gone through so much. The last thing I want to hear is no one will want me because I have a shit bag on my side.

Marijane

Bain said it all...I too had the exact same experience on POF a few months ago. Might even be the same guy! ;LOL He too called me an "old bag lady" and that no one would ever love me. His text message was about 10" long calling me every name in the book and cussing at me through it all! :( We had been dating for about a month and I decided to tell him about my appliance after he said he wanted to be exclusive. At the time, he was fine. The next day is when I got his lengthy text message. I was hurt, angry, and frustrated. But in the end, I dodged a bullet!

Well, I've had my ileostomy for 44 years. Had surgery for Ulcerative Colitis at age 18 ON my 18th birthday in 1976. Met a guy a few months after surgery, also 18, who totally accepted me for who I was and my appliance. Got married in 1979. We had 3 kids, all C-sections, and 1 tubal pregnancy that also ended in a C-section. We divorced after 34 years of marriage, not because of my ileostomy but for other reasons. That was 10 years ago and I've been dating about 8 years now.

I too struggle with when to tell someone about my situation but this podcast really helped me. I listen to relationship podcasts and I sent in a question to the host about when to tell someone about my ileostomy. You can search for her answer to my question at the podcast DATES and MATES- Damona Hoffman episode January 27, 2020, Healthy Communication and Roasting for Romance. She and her guest host answer my question at the end of the program. Really GREAT answer. Summary...said it depends on your personality. You can tell them upfront OR wait until they EARN the information-that intimate part of us is none of their business until there is a commitment to a relationship. I just don't jump into bed with a guy after the 1st date. There has to be time to get to know the person to see if he's worthy of knowing the intimate parts of me.

If a guy can't wait for sex and respect my boundaries, then he's not the guy for me. When I met my ex, he was ONLY 18...you'd think that especially at that age he'd have issues with it. He didn't. And MANY guys I've gone out with have accepted me as I am...those relationships for other reasons just didn't work out. I recently talked to my ex about this and he said "The right guy will not have a problem with it. It's just like wearing a big bandage and is a part of you". So I wait to say anything until there is a chance the relationship can go farther. If at that time, he bails, then that's a good thing. My heart might hurt but I was saved from a lifetime of being with a jerk!

For anyone out there reading this, don't give up on dating. You have many more qualities that surpass the fact you have an appliance attached to your body. Good luck, and seriously, listen to that podcast I mentioned above. She really helped me figure it out.

Jenny

I just responded to Marijane's post about the same thing. Go listen to the podcast called "Dates and Mates with Damona Hoffman", the show dated January 27, 2020 titled "Healthy Communication & Roasting for Romance." Damona and her guest host answer my question I sent in about when to tell a guy about my appliance. Their response has really helped me with this situation. It's towards the end of the program. I hope it helps you and others too.

Jenny

You're awesome, my sentiments exactly!

Have you looked at ostodate.com?

I have a pouch as well, yours would never bother me and I feel certain mine would not bother me

Sincerely, nbsp

Tom

Ileostomy leaks

Hi! I have many issues with feeling like a leftover. My system is a two-piece, Sensa Mio. I started with this system a year ago now, but my system started leaking under the Adapt wax ring. I have no creases, but it leaks consistently at 3 and 9. When it gives up from OMG, can't believe I need to say this, gas and the leaking. I'm part mylar balloon overinflated and leftovers. I spend a lot of time in the ladies' room emptying high output. The ostomy nurses have given up on me from Sloan Kettering, stating they have tried EVERYTHING!! I feel defeated. I change the bag on the 25th hour; anymore than that, I leak or it pops off! Any suggestions? I should mention, I have a hernia behind my protruding stoma. Also, I'm not friends with this thing. It would be unbelievable if I could ever hide this thing from anyone. My daughter, who understands it, has sat in the room with me and turned around quickly asking, "Is it alright?" I thought it was going to leap off, you sure mon. Yes, it just needs to be changed, and I'm approaching the 25th hour. Lots of air. I don't know how or why it gets under the ring, and neither do the nurses.

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.