Seeking advice on intimacy with ileostomy - overcoming limitations

Hello all... this is the first time (I think) I have ever posted here, so I'm just gonna put this out there and see what happens.

I have ileostomy, which I've had for now 7 years. I wear a pouch, and I am still so disgusted with it, that I haven't been intimate (pants off) in that time. I don't have any prospective partner, so this is more about overcoming my limitations, than the technicalities.

I live on a fixed-income, and have only heard horrible things about re-connection, so that things worked semi-normal... And I couldn't afford the surgery anyway. (No insurance)

If I am disgusted with it, the care and attention, and yes, the odor, how can I possibly approach a potential partner, ideate intimacy and not be a total failure in the effort... I thought 7 years, I'd have beaten the 'woe-is-me' attitude, but I'm 45 years old, and a part of life is missing.

I can't imagine divulging the details to someone whom I'm attracted to, only to be rejected once known... the 'eeww' factor.

I don't want to remain alone for what's left of my life, but have no confidence in overcoming this rather significant hurdle. It looks disgusting, always has a light odor, seems unclean (my evaluation).

I use a 12" clip pouch that lasts about 6-8 days before a "change-out" as it is the most economical choice for me. I usually have to get see-through pouches because they are less expensive...

I would appreciate as many little tips, ideas, stories, etc. that I can consider.

Thank you for any who respond.

Chris.

Hi Chris, sorry you're in this situation.  I think there are a couple things we need to address and there's a bit of the "chicken or the egg" question to me.  If there's no prospective partner, then rejection won't happen.  I don't know how you gain confidence except by eliminating the things preventing it. I don't understand the "odor" thing.  Maybe I'm naive but, IMHO, odor should not be a normal part of an ostomate's existence.  To me, if there's odor, something is wrong and has to be corrected.  

There are many folks here with way more experience than I have and hopefully they'll jump in.  I think eliminating the odor concern might be a big step in gaining confidence.

Good luck,

Mike

Hey Chris,

I don't have an ileo, I have a colo - I don't have odor unless I am opening it up to "burp" it or clean it out. If there is odor other times, it's because I have a leak somewhere. But I know there are other topics on the site that address the odor issue. I think it differs with the type of ostomy you have and the type of products you are using. As iMacG5 said, lots of people on here - just give them time to read and respond.

I hate mine too, been a year this July. Will never like it. Personally, I don't think I'm so worried about finding someone as I am about having to deal with this for the rest of my life. But I have to, so not much I can do about it. But on the days I have really had enough, I know I can come on here and bitch without it phasing anyone.

By the way, I use see-through pouches too because I have to snap mine together before I put it on - so I need to make sure I am going around the stoma and not smashing it or something. But I know there are a lot of places that will send you free samples and a lot of organizations that send extra supplies to people. Again, this is addressed elsewhere here. Check out "all forum topics" at the very bottom of the Home or Main Menu page.

Z

P.S. I just read your profile and I'm confused... it says you are married. I just deleted a lot of things from my reply because it pertained to being single. You said you don't have a perspective partner and are worried about approaching someone you are attracted to... maybe my brain just isn't grasping the obvious. Well, I guess a good thing is it kept you from having to read a short story. :)

I'm sorry for the confusion... I was married... but my condition was among some things that could not be handled, and I am not looking for 'dating' on the basis of this thing I deal with. The odor I was referring to comes from the lengthy time I am able to maintain a pouch before I begin sensing a failure. With one pouch that can last 6-8 days, there is almost no way to prevent an odor from remaining. I use air freshener, cologne, and other things to disguise it.

I simply have come to a point where I am, quite simply, lonely, and in trying to figure out how to gather the courage to meet someone, while I know that this thing may be a major obstacle, once revealed. It scares me to be that vulnerable, and get shut down.

I'll update my profile so it's accurate. My apologies.

Hi Chris,

I should apologize for asking questions that were none of my business. But we talk about so many things here, not much seems to be sacred. I was genuinely confused what it was you were worried about after I saw that. I checked you out to see what country you were in because of the supply/insurance issue you spoke about and I saw that and my brain went bam! Wait, what?! But thank you for clearing that up. Besides, this led you to changing your profile and might also lead to you getting whispers from ladies on here.

Dating actually would be the easy part, I think. Telling, when you realize you want things to go further, is the hard part. There are many things that people don't tell in the early stages of a courtship because things aren't that serious yet. Dating an ostomate isn't really a safety zone either. It only means you don't have to tell them this one thing. Doesn't mean, somewhere down the road, there aren't going to be other things that person isn't going to like about you and end things. Starting any relationship with anyone is always a gamble. I, of course, am not a guy so I never had to worry about gathering up enough courage to simply walk up to a girl, start a conversation and then hope she'll give me her number so I can call to see her again. I have been on the receiving end though; seeing a guy I like, trying to make eye contact, hoping he comes over then wondering if he'll ask to see me again. Or going out on a date and everything was great! - but you never hear from him again or she won't answer your call (or gave you a wrong number). It all takes courage. Maybe not Hercules type courage but still courage. There's probably a lot of things that you had to or wanted to do in your life that you had to hold your breath and plunge in and they probably didn't turn out so bad; possibly even improved things.

It scares everyone to get shut down - or, at the very least, gives us really bad anxiety attacks. I can't remember everything I said before I deleted and some of it made even me think more towards the optimistic side of things. I am not an optimist. Unless someone is truly happy living alone, all our lives we have to do things to get up the gumption to participate in the world. Admittedly, there are some that seem to have been born with the aptitude to glide through life - but the majority of the people I have known had to work at it at different times.

People talk candidly on here. I'm sure if you check out the forum topics under dating or the blog about oral sex (it's quite interesting) you might get some helpful/encouraging information along with a few laughs.

I have had a very hard time with this. Every time I look in the mirror I groan. Every time I have to change it I make icky faces and sometimes cuss. Every time I try on a pair of my favorite pants I get upset because I can't zip them up because it hurts the stoma and I have to put something baggy on. The list goes on and on.

As I have always known, it's only up to me how contented I am going to be with my life. So, over the past few weeks I have made some decisions. When I get some extra money I will buy some cute sundresses (won't have to worry about anything pushing my stoma AND will help hide it when it blows up like a balloon and I can't get to a bathroom right away) and new shoes (always makes a girl feel better). I'm moving into my own place that needs a ton of fixing up - so that will keep me very busy for a long time. A few days ago I put myself on a dating site. I am already talking to a guy that sounds promising. Will I get rejected, probably. Will it make me sad, yep. But worse things have happened and I've survived. Plus, there's plenty more out there. If I really want to keep looking, eventually one will be the guy that fits me. In the meantime, it's really boosting my self-esteem, making me smile, and giving me something to look forward to every day going on the site and returning messages or looking over possibilities.

It's all better than hiding in my room wasting time, getting more depressed and lonely, wondering how long I have to endure all this before I am put out of my misery.

I'm sure others will weigh in on this topic so you will have more to consider than my little short story. Also, don't be afraid to check out the gadgets and clothing they make just for us special people. You might be surprised what you find. (I know you are on a fixed income, but you could still save up for something if you think it might help.)

Synopsis: Kick yourself in the behind (which you have done by starting this topic), find a project(s) that make you happy/content for a long time, and buy yourself something new that always makes you feel good (not a sundress, you'd probably look funny and wouldn't really have to worry about having to tell a woman about your stoma). Then take baby steps in venturing back out into the world - whether it be joining a dating site (I know this one kinda is - but the operative word there is kinda) or doing things you stopped when all this started.

As for the smelly problem - I'm sure you'll get some suggestions here over the next few weeks. There are also a few older posts about the subject if you have time to sit and peruse the forum topics. (They really do need to create a more customized search option by subject. Unless I'm missing something I have not found where you can do that on here. I have sent in a couple requests to "us" - whoever us is.)

Z

Oh, I was getting ready to log off and something popped up. Read the topic: Ostomy - related questions Meeting someone new? Guess who posted a reply to that topic... :)

Living with Your Ostomy | Hollister

Thank you, again. In the realm of candid discussion, since it's all 'down there', I have never enjoyed receiving oral (long before my operation and subsequent condition, so that is much less of a concern). Giving it is something I did enjoy very much.

I get severe anxiety about a failure in the gear (what I call a blowout) that would lead a partner to be even more disgusted and angry, and me embarrassed. I know how to keep my stoma clean, how to empty when needed, and I can still fit a fairly trim 32" pair of 501s...

What I have to get past is the mental block... to walk up to a fine person, introduce myself, and see where it leads (no problem). And then, once kissing and hugging moves to more intimate topics, being rejected after the emotional capital has already been put on the table.

For a big "date", I'd do a change-out and prep before I walked out the door (or greeted that person at my door)... but a more casual introduction is where I see a limitation in myself. If mentally and emotionally, all the green lights are there, and I have to figure out how to say "Oh... one thing..." before anything gets going, and I have NO idea how to do that.

Chris

"Eyes opening wide, with a big grin" (because I don't know what emoticon that would be) a pair of jeans on a nice butt (trying to keep it clean) - nice. (Hey, I'm not dead yet. I can imagine if I want.)

I mentioned the oral sex topic because it had some tips on how to keep the bag secure and out of the way of things. I am surprised that I have learned, over the past 8 months (not by experience), that a lot of men don't care if they get oral sex and that some prefer not to. I was always under the impression that was the ultimate thrill for a guy.

Ah, well, I am always learning something new, even at my age.

I can't think of what words to say, wish I could. I can say this, as a woman, if I was so attracted to a guy all I could think about was his hands all over me....whatever he told me wouldn't have mattered. I'd have figured out a way to solve that problem real quick. If I had been seeing him for a while and was falling in love with him - it definitely would not matter what he told me. Well, except for if he was a criminal for unthinkable crimes or was a polygamist (wouldn't work with me).

I think you guys are at a bit of a disadvantage than we women because we can just slip our tops down to keep it covered or wear a sexy cami or corset-like undergarment and you'd not be the wiser under certain situations. I have read where women on here have said the guy didn't even know she had one (I can't figure out how they kept his hands or mouth away from that area that he didn't feel it at some point). I can't think of what you guys could do/wear that would be similar.

But the following topic popped up at me as I logged on here today. Intimacy Dating - Is there any secret in here? It might be helpful.

Z

Popped back on because I went to the Forum topic Intimacy and Dating and started reading through them (which I'm going back to after this) - there are quite a few topics in there that may be helpful when you have the time to sit and read.

Hi Chris. My cancer surgery was 20+ years ago, so I can speak with experience about ostomy care. Louise and I just celebrated our 41st wedding anniversary so I can't speak to the dating topic.

I'm not sure that a clear pouch is a "best choice" for men but I take your cost comment to heart. In Ontario (Canada), there are government programs which diminish/zero the cost of ostomy supplies. The key one is found within the Ministry of Health (Assistive Devices Program): Are there similar programs where you're located?

Have you tried connecting with your supplier to see if there are more cost-effective products from them? Have you considered other manufacturer's products?

Do you have an ET (Enterostomal Therapist) assigned to assist you with managing your appliance? Mine has made my life as close to normal as ostomates can expect. On the topic of ET's, I recently had some issues with my Hollister appliance so I connected with their site. I was promptly connected with their ET who communicated with me on the phone and over emails. She sent me samples of Hollister products which she believed would improve my experience: she was right on almost all of the following topics.

Size: I had been using a flange which was far too large (3.75") so she sent me samples of 2.25" which means that a smaller area of peristomal skin was covered by the new flange (less coverage means less skin damage)
Odor (sorry, Cdn spelling) #1: she provided samples of their "vented" pouches but the experience was not positive
Odor #2: she provided samples of a clip-less drainable pouch but I found them somewhat difficult to use AND they are much more expensive than the pouch with clips (which I've used for over 20 years)

The experience with odor which I'd described to the Hollister ET was basically a function of length of wear: at almost a week, I was pushing beyond the capability of the pouch. In addition, I was probably a little lazy after emptying (I keep a squeeze bottle of water handy for that final little clean-up at the very end of the pouch). A few suggestions about my experience installing the appliance:

About 6 or 8 years into my adventure changing my appliance, I noticed that the elastic on my boxers was shortening the "cycle time" on my flanges (because the flange would catch on the elastic and that would get under the edge of the flange). I started installing the flange like a "diamond" instead of a "square" (where the top of the flange was parallel with my waistband). In this fashion, the point at the top of the flange would rest at my waistline under any elastic; then,
I began to "picture frame" my flange with skin-sensitive tape (3.5 cm Hypa-Fix) and use a wider piece (5 cm) across the top point of the flange. This is visible above my boxers but I no longer have to change the flange because it's been ruined by the elastic band.
This picture framing also tends to minimize leaks because the tape secures the edges of the flange especially where there are natural creases

My post-operative "clothing experience" was a very minor awakening: boxer shorts simply became simpler; and pleated pants because they put less pressure on the stoma!!!

Wow! This is a bit of a core dump (computer term) but I hope there's a tidbit or two for you.

Hey Chris. Did you ever hear of the product M9? It's a deodorizer. There are other products too. Have you ever thought of dating a fellow ostomate? I would prefer to date an ostomate because the mutual understanding is there that I feel "normal" people just don't understand. As far as a clear pouch, either wear a waistband like a cummerbund or leave your shirt on. As far as oral, make it a romantic ritual. Wash right before the act. Move it out of the way and you could also buy a pouch cover. I'm tired of having to impress and go through the anxiety and rejection of explaining my urostomy to 'normal' shallow guys who reject or cheat on me. I want to date an ostomate so there are no barriers or insecurities during lovemaking for either person. I hope my suggestions of getting odor solution, cleaning out the pouch every time you empty it, using pouch covers, leaving on your shirt during sex, wearing a cummerbund or pouch cover may help. Good luck, my fellow ostomate friend. Let me know what the results are. Thanks!

Hi all. Hasn't anyone on here heard of M9? It comes in the form similar to that of Visine. You put the drops in your pouch. It is very effective for odor reducing or even eliminating it altogether. Works wonders!

Gees, strange. I love my stoma, rather my first ever one was perfect for pouch. Never a leak. I lieostomy (still spelled wrong, p.s. don't care), I had a lot of papers for me to understand. No internet, knew bugger all about this disease Crohn's. Time: 1990 at 23. ........ Don't get me wrong, 3 reversals. Ulcer stoma put back together, just too much. Maybe I was young and had hope. Like, what the fuck is a disease? The real meaning, as I couldn't understand illness. So, this Crohn's plus ulceration. People nowadays are sooo lucky, real lucky. I'm at the ripe old age of 48, just turned. Sex, lol, ain't telling. Was no different, still sex isn't an issue. Rejection, yes, big time. But will there ever be a good time? I don't want to give up, especially since I have had a few breakdowns, meltdowns. I live on pain relief, which leads to more issues of drinking without thinking. What the fuck, my meds are morphine. Now finally trying to sort my head out, rather my stoma and the one operation. The first operation, no stoma, but not knowing what the hell surgery was, a nightmare till this day. My first op was 1995, woke up on my 28th birthday. The twits left tiny microscopic disease in me that after the hell 6 months into the new year, I was so, so ill with a busted open belly button - fistula. A small hole in my stomach duodenum (can't spell that), but exploding belly button with everything pissing out of me. I freaked out, I was a mess. Never cared what they were doing, but wanted to be better. Never thought, "Oh, life over." As again, it was long ago and gotta have hope.

Now, hell no hope here. Not me. No more pain meds to live on, to screw up many issues since 2008. Last operation, the big no going back, the promise that no pain, no butt, no problem. Well, let's say working, I was done. But to volunteer in OZ, I have everything at my feet. And will say, we are privileged to all things. Meeting new ostomates if they choose to pick up or post paid. Annual fee of $50 a year or $40 disability. That's it. My god, my heart goes out to you suffering guys. I wish I could help, but don't say never. I have heard of the horror stories and still I say, may I have a look? I feel lucky to that point. I'll get back on this tomorrow. Lmao, I'm in Australia, 1:30 AM. I'll type worse. Ok, sleepers kicking in. Good luck. Might chat soon :) xx