Boosting Intimacy with an Ileostomy: Share Your Secrets!

Dude, you know there still may be hope for you!

Peace all...

This has been very interesting to read what developed from one simple request for help. Figured I might as well throw in my 2 cents. I was also worried about sex after my surgery and how it would affect my marriage...sorry, can't comment on being single with an ostomy. I could certainly relate to what the woman said who found sex before surgery a big problem because of needing the bathroom at the wrong time. Much more control now. I read everything on this site about intimacy issues that people posted and also another website. I ordered an ostomy belt and tried making one but it was a failure. I looked at the pouch covers but don't really understand the point of that. When I was healed enough to have sex, I put the belt on and went ahead. It was fine. I have now ordered another different kind of support belt. I know my husband and know he is somewhat squeamish. So, I tuck the bag up and cover it tightly and all is good. I don't really think the middle of your stomach is such a huge erogenous zone for most people. Most action is below and above. No one really wants to fondle your waist.

So, guess that is my plain and simple. I don't feel disgusting or ugly or punished or any of that stuff. Most sex is right between your ears. If you feel sexy then chances are you are going to have good sex.

....Well said, Cee.

Thank you, Chris... I think.

Ok, I was checking my email and got the UOAA newsletter that had a link to this topic. Maybe I can be of some help even to John.

On October 5th, I had an ileostomy. I got really depressed and thought my life was over.
Now let me explain that my sexual issues are twofold: one, I am a gay male, and two, I have an ileostomy.

I hated it, the way it looked, and feared how others would view me. But I'm a unique person where I tend to get sick of emotions and things that don't go my way. So I decided to address the issue. Instead of wearing my baggy clothes that I had acquired for this, I put them away and wore my good sexy clothes that I always wore before my operation. I found ways to hide the bag and to get rid of any smell. I ended up settling on a bag that had a nice little charcoal filter in it that got rid of smells. And to help with the emptying, I was always thorough with wiping the emptying end.

A few weeks after I started to address the issue, my confidence in myself and how I looked began to pick up until finally I met a man at a group meeting I went to, and we ended up hitting it off. Before we did anything sexual, I told him that I had an ileostomy. His biggest worry was if I would hurt myself with sexual activity. Not one time did he comment on the bag or the sounds or anything. And I suspect that it was my confidence in having an ostomy that made all the difference. I suspect that if you sit there and whine and bitch and want a self-pity party, sure no one's gonna want to be with you. But if you show confidence in what you have and accept it as a natural part of yourself, then others will accept it as natural as well.

Yes, having an ostomy can be difficult at times, but who you meet and how others deal with you has a lot to do with what image of yourself you put out.

On January 11th, my ostomy was reversed, and you know something... I miss it. It became after 3 months comfortable, familiar, and a part of whom I was.

Maybe I was lucky that I did not run up against anyone that chastised me for having it, or maybe it was the attitude I showed towards others, the "hey, I have an ostomy, it's cool, deal with it" type attitude.

So if you're gonna be depressed, understand that it's simply you that's depressing you. No one, from what I can figure from my own personal experience, really gives a shit about a stoma or an ostomy, and they tend to deal with it just fine. Shallow people will be shallow, toss them aside.

I recommend cologne or perfume placed strategically, like where your legs meet the hips. That crease there is perfect for applying a bit of amber or another lovely scent.

Not one single time with anyone I played around with since my ostomy has anyone complained about smells or anything.

So if you want to have sex, I say go for it! Find a nice girl or guy and just have at it. If you don't act like the ostomy is unnatural, no one else will either.

I don't know if this helps anyone or not, but it's just my personal experiences and views.

Crapp, not the UOAA newsletter XD, the MeetAnOstomate newsletter XD.
Chemo brain.

Hi Chris, I am 56 and have had my ileostomy since I was 40. At first, it was hard, but believe me, once you accept it as being part of your life, everything gets better. The partners I have been with since I have been divorced have totally accepted it, and it has never been an issue. I have had the experience of the bag coming right off during sex, but the person I was with was totally understanding and made me feel so much better. My quality of life has improved 100% since the surgery, and it is so much better to be free of pain than to go through what I went through before. Just make sure you get to know someone that you feel comfortable enough to talk about it with, and then everything will fall into place. It is the person you are, and not your limitations. Have a positive attitude, and trust me, it does get better. I am living proof. I wish you all the best and chin up!!!

Everybody,

Thank you for your honesty. This is what I am looking for...both sides of the coin.

Vic

Elphias~ ...I couldn't agree more. It is all about attitude.
It is hard some days feeling sexy or attractive but then I have days where I feel like the hottest thing ever. lol It just depends on the day for me, just like before.
My fiancee' has been amazing and supportive. He and I have always had a wonderful sex life and that hasn't changed a bit.
Hannah

Thank you for the positive feedback on your post, and yes, even I will admit that I had "days" as well v.v.

But...this is how I handled it;

My train of thought was "Well, I have this ileostomy now, I cannot do anything about it, get over it."

And I did, it always made me feel better to know that I simply had to deal with the ostomy, that I did not have a choice at that time, it made me worry less, and made me feel more in control of a terrible situation.

At one point, I had to strip off all my clothes, and stand nude in front of the full-length mirror,
and I forced myself to look, and to accept my body again, it was not easy, but worth the effort, as in the end it raised my self-esteem. When I looked in the mirror, at first I saw an ostomy with a person, after a few months, that vision changed, I was a person with an ostomy, and so what? Don't like it? Screw off.

That attitude saved me from being overly depressed and got rid of my feeling of helplessness. In the end, I turned it into part of whom I was, even showing it to my friends, who thought it was gross but really neat. One of them, who I have been friends with for years, made fun of it by trying to "poke the stoma" (think South Park's "kick the baby").
People even called it "stomer pile" XD

Sure, having an ostomy can be devastating, but laughter and self-acceptance can make all the difference.

Now I don't have an ostomy anymore, it was removed on the 11th of January,
and you know something? I miss it. I miss the ritual of changing the wafer and bag every few days, and I miss the familiarity of it. I'm not saying I'm in a rush to have one again, but after a while, if you figure out how to cope with it, it simply becomes a part of you.

~S

That is exactly what I did!! I also walked into my bedroom where my boyfriend was sitting on the bed and I said, "I need you to see this, this is what I'm dealing with and you need to see what I have to deal with."

lol He has been great through the whole thing and that does help tremendously.

I love South Park....lmao....

Love, me

Canaussie,

I was reading your post...have you tried letting your husband help you change your wafer? Sometimes if one sees the worst...everything else is gravy. Besides, yours is temporary from a surgical goof. A few months and you will be back to your old self. I wish I could say the same. Hang in there.

Vic

Well, I agree with you, Chris. I have not found the answer yet, but when it comes to being intimate, I kind of go the other way. I have not been rejected as I haven't given anyone a chance as yet. Probably, I have not accepted the fact that I have this ileostomy, and until I do, things will not change. You are still young and can have a great life with someone if you take that chance. My surgery is due to the doctor screwing up, and I am still angry at him for that. I hope to become more positive and change my way of thinking. Don't give up as life is too short. Take care........

Hi Chris, I just would like to give you some support. I've had my ileostomy for 2 years now, and at first it was very difficult to deal with and accept. I finally had to learn to accept things as they were. We are the same people, our personalities do not change. My outlook has been
loving life by staying "young" at heart. What doesn't kill us in this life only makes us "stronger"!
Normally, I was always a positive person. When I had my surgery, that all changed for a short time, until I kicked myself in the ass and told myself that I am still me. The only thing that had changed was I no longer had an asshole (got to laugh). I had a poop bag.
By changing my outlook and laughing at things, my attitude changed. And I got out of the sweats that were comfy and started dressing like my old self and got involved in some volunteer work, which I was at first scared to death to do because of the bag. But I did it.
And lo and behold, things worked out.
Now, on the sex, my husband was still alive, and he hated it. He would not even touch me. I even went out and bought special underwear for us ostomy guys to cover up things. Nope, no matter how I tried, he just refused. Well, within 5 months, the dear old boy died, and two other men have come in and out of my life, both knew about the ostomy and it really did not matter to them as they were widowers and took care of their wives. One whose wife had an ostomy. The thing is, the first guy was too old and the second, well, I found out he was married and I dumped him. Shame too, because we had some great intimacy. I have to agree with all the others, a lot has to do with how we accept our new bodies. If they are repulsive to us, then it will also be to our partner. Each and every one of us needs to know that we are worth something, that we are wanted, that we are loved. But it is also important to know that we need to hold our head up. We are all worthwhile, just because our plumbing has changed doesn't mean we are outcasts. Matter of fact, I think it makes some of us better... more compassionate, loving, caring toward our neighbor. So chin up.. know that you are worth your weight in gold. And if someone cannot accept you for the way you are, then they were not worth any effort to begin with. God bless, and hugs.

Take it from this "dirty old woman"...you are plenty alluring as is!        

Well here's another "dirty Old Lady" I agree Mary he is plenty alluring isn't he. hehee  
Well like I tell the kids, I can still look, I am not dead yet.

Alright, here's proof that there is hope for all of you that you can and will in time be able to find someone special.

About a week ago, I was going to take down my profile/ad from this website. I had had it here for 3 months, and not one single person answered it. The day I was going to take it down, I got an email saying I had a message here. So, I logged on, and sure as shit, there was one.
A guy expressing interest in me! I was so flattered it took me over a day to respond, mostly because I was afraid too.... Well, we plan on meeting in real life in February ^_^ and he's even offered to take me to Florida. I'm still incredibly flattered that someone thinks enough of me to reach out.

I figure, if it can happen to me, every single one of you has a chance ^_^.'

I'm excited to meet him, and am actually looking forward to being with someone that isn't going to judge me. ^_^

Good for you!

So happy for you!

But now I turn into a 'Mom' -- be safe, get to know him before you think about going anywhere with him, etc. You know, all the stuff you were going to do anyways. After not hearing/meeting anyone for a while, this may seem like a last chance (?) -- it won't be.

All the best and keep that profile up.

I think part of the problem I'm seeing in reading the above posts is that there are two completely different situations at hand. If you had a partner before the surgery, they may stick with you. Hopefully, they will. Most of those who posted to this thread are in this case.

For those of us who did not have a partner before the surgery, it's a different story. Even that can be broken down: males vs females. Guys (at least where I live) are more accepting than women. For a male with no partner who gets an emergency ostomy (like me), you might as well pick up a hobby. Even my friends (some of whom I've had as close friends for 20+ years) tend to keep their distance. Hell, even the dog avoids me towards the end of the week.... In my case, the bag smells after 1-2 days and I simply cannot afford to replace it more than once a week (I'm uninsurable and business is very slow right now in my field). And add to that the unpredictability of the bag, the fact that where mine was installed, it tends to hang down below my shirt, the fact that I have developed a 7" incisional hernia that sticks out almost 6", the fact that my stoma sticks out almost 5", and the fact that even with dieting, I've gained 30lbs since the procedure as I cannot be very active (the little activity I do get opened up the hernia and I was trying to be careful!!!)

I was in the store the other day and someone even made a rude comment that I look pregnant! (I'm used to it and have heard comments like that before, but I'm just making note for the purposes of this thread as to how others treat the situation). I suppose part of the problem is that in my part of the country, about 80% of the people are so superficial that it rules their lives. The other 20% seem to be married....

If one can find someone brand new who is willing to deal with all of the above issues, you have found a saint.

I'm just waiting, hoping that eventually, the hospital's financial people will approve the reversal procedure/hernia repair. I've been medically cleared for 8 months to have the reversal, but the bean counters don't agree....

RobertG -- I feel bad for you. It would be very hard for me to keep a positive attitude if I were in your shoes.

Re your friends, ... the pat response would be "If they treat you like that ... they were never your friends in the first place". But nothing is pat with ostomies ... every case is so different. You say guys are more accepting (of a partner or potential partner with an ostomy) and I think you are right. But are 'normal' guys not as accepting of a man friend with an ostomy?

Have you tried some of the deodorizers in the pouch -- peppermint oil is also recommended (Gus can tell you more). Not being able to change your pouch as often as you'd like because of money sucks. And why are the products so darned expensive!

After reading your post, I'm feeling very lucky to have friends and family that are supportive and not shunning me.

Take care.

The friends involved keep their distance mostly due to the smell. I can talk to them all the time on the phone or via the internet with no problem. In person is a different story (if my bag has started to smell which starts a day or two after a bag change). I don't blame them--I hate the smell, too. Towards the end of the week, it is probably more of a relief to me than to those around me to change the bag--it actually is so bad that it alters my mood (I'm pretty grumpy towards the end of the week!)

I've tried peppermint oil and it really doesn't seem to solve things. It masks the smell a small amount, but it's still there. Reminds me of those air freshener commercials for Febreze a few years ago, where the "smell testers" would say--"it smells like strawberry..... And dog odor." It's like the smell permeates that bag to the point where nothing will get rid of it. I have found that covering the vent helps a little bit, but not that much. I use Convatec.

One of the things I've noticed about my bag that seems to be different than many of those I've read about on here is the location. Mine is located on the left hand side, just below my rib cage. No easy way to hide it in my pants or anywhere else. And because the stoma sticks out so far, it's impossible to hide. The stoma didn't use to hang out that far (used to be about an inch), but it changed rather suddenly one week. I asked the surgeon and he said while it could be "fixed" it was not an emergency and being I have no insurance, there would be no fix until the reversal. I've been battling with the hospital to get the reversal approved for a long time. I'm at the point of researching some sort of legal action against them....

The worst part is that the hospital that is giving me the problems used to be my employer. I worked there for 5 years as an IT Systems' Analyst. I helped design the computer systems that they are now using to bill me the $120,000 I owe them for the procedure!!!!! Talk about a slap in the face....

Robert,

I used to use Convatec but have switched to New Image and have some extra supplies...wafers, pouches, wipes, etc. I have about 10 wafers and almost 50 pouches. If you like, I can send them to you.

Just send me your info in a private message and it will be no problem. I may be speaking out of place for Robert, but if there are any of you that would like to help, I'm sure Robert would be incredibly grateful.

I too am in IT and also live in Florida. I feel bad for you and would like to help.

Robert, your post was so upsetting. I also use Convatec, nurse's orders, and have the same odor problem after a day or two. I change every 3 days and can't imagine having to go a week. With that said and your economic issues, it made me wonder. I had an ileostomy 6 years ago that was reversed, and the products had completely changed in that period of time. My O.T. nurse and my mother, who is a retired nurse, talked about the old days when bags were closed with rubber bands and people used plastic bags. My thought is: could you use plastic bags and the like? Cheaper and you could change them daily if need be...50 go for a couple of bucks. As we know, there isn't any magic about Convatec and their terrible, ridiculous "vent" system which leaks and smells. Perhaps this is stupid to suggest, I don't know, but it makes me furious that people suffer like this with our insane healthcare system. I also have bags and wafers from my early days that are sitting in the closet that I would gladly send. They are the type you need to cut, so they should fit. Email me, and I will send.

Robert,
Cee might be on to something with the bag inserts. There are ostomy pouch liners specifically made for what she is referring to. I tried them, but to me they are a pain, so I just stick to the standard method of changing bags.

I also have a whole bag of them that I never used if you would like to try them. I got them off the internet from the man who developed them. If my memory serves correctly, I called and he sent them free of charge to try. He lives in Canada and is very eager to get his product out there.

Here are a couple of websites and a YouTube video.

http://www.colostomymajic.com/
http://www.cmostomysupply.com/cm_html/p_flinerdo.html
https://www.youtube.com/watch?v=jL5TY_dbeeA

Good luck
Vic

Robert,
I had the same problems with odor for years until I was advised to drink cranberry juice every day. As long as I drink about 4 ounces every day, I have almost no odor at all. It can be any brand of cranberry juice. If I decide to eat very spicy food, I drink extra. Hope that helps. Good luck!

I too drink cranberry juice every day but did not know about it eliminating odor. I also do not have a problem with odor. I just assumed the deodorizing were doing the job. Maybe it is the juice.

Vic

Hi Robert G
I just read your post and I feel absolutely sick, I cannot even function. Thank God my kids are napping because all I can do is sit here. I cannot imagine how you can be living this way. What you are going through sounds like pure hell. Sometimes I get down on our situation but what you are going through makes our situation look like nothing.
-Is your colostomy reversible?
-How much are these bags costing you? I live in Canada so I am not sure what American prices are.
-What bags are you wearing? Admittedly, I don't know a lot about the models and stuff but my husband wears the disposable ones and there really is no odor unless you stick your nose right in it. He swims and showers and everything and it's all fine. He wears the part that goes against the skin for a full week but throws out the actual bag every time he poops.
Is it possible what you are eating is causing the odor? I know my husband cannot touch fruit or vegetables. He even had to give up apples.
What has to happen to make this situation better for you? Like in practical terms, if you have to live with a colostomy, how can this be improved.
Vicktoria

Hey RobertG

You sure touched many of us... do respond and let us know how we can help.

Have you looked up odor-causing foods? Here's a list from info I got when leaving the hospital:
Foods that increase odor - fish, garlic, onions, asparagus, eggs, coffee (I can vouch for fish, garlic, and eggs increasing my odor)
Foods that may help manage odor - yogurt, buttermilk, and finely chopped parsley

Also, whether you have a colostomy or ileostomy also factors into the amount of odor -- apparently more smell with a colostomy.

I really can't fathom some people and the comments they make. I've had "I'd rather be dead than wear that contraption". I just looked them in the eye and said 'Really? You'd really rather be dead?"

You know the old saying... the more people I meet, the more I love my dog.

Sigh

I live in Canada but I would really love to help whatever way I can. Please let us know if anything can be done.

Robert G
Where do you get your supplies from?

I am very saddened for you, not in the way that you think....trust me, I've definitely had some pity parties and if anyone has reason to be bitter, depressed, angry, and just plain pissed off, that would be me... As you are aware, I've had an ileostomy, then the reversal (which in the two years that I had it, I apparently had a tear in the pouch and had feces going through my body all of that time, which gave me an abscess on my ovary and had to have that removed and once again given a temporary ileostomy...prior to leaving the hospital, I developed an infection in my wound area and have now had infection leaking for 3.5 years and am awaiting my 4th surgery to take down the J-pouch and give me a permanent colostomy... I was told that the surgery would be next month but now am told that may not be the case..

So now back to your feelings... if you try being more positive and maybe be a little more forgiving with yourself, maybe you might meet some wonderful ostomates through this website. Is that not the reason we come here? To meet friends with the common goal, and who have and are experiencing the same issues and heartbreaks we are going through??? I always tell my children to surround themselves with positive people and then they too will be positive. I'm sure there are a lot of women in your same predicament and if you would be a little bit more personable and, hard as it may seem, be happy... it sucks big time but as the old saying goes, there are a lot of people who would trade places with you in a heartbeat... my best friend in the whole world has bone/liver cancer and has two small children.. I can tell you that she would prefer a colostomy bag than not knowing if today is her last day with her kids/husband... by the way, she had both breasts removed 5 years ago due to breast cancer... and because she is so optimistic, positive, and so damn loving, her husband could care less!! So I don't want to make you feel bad for how you feel, but who knows... if you put a smile on your face, that lady might just be around the corner or somewhere on the site (O:

Sincerely, Dee