Meet & talk to fellow OstoMates Support | Friendship | Relationships

Intimacy with Ileostomy

Mon Jan 25, 2010 6:15 pm
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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

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Mon Jan 25, 2010 8:41 pm
I am very saddened for you not in the way that you me I've defiantly have had some pitty 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 a iliostomy than the reversal ( which in the two years that I had it I apparently had a tear in the pouch and had feci's going through my body all of that time which gave me an abcess on my ovary and had to have that removed and once again given a temporary iliostomy...prior to leaving the hospital I developed a 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 ostomate 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 than they too will be positive.  Im sure there are alot of women in your same predictament 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 alot of people who would trade places with you in a heart beat... 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/ the way she had both breaths removed 5 years ago due to breast cancer... and because she is so optomistic; 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
Mon Jan 25, 2010 11:15 pm
Tue Jan 26, 2010 2:15 am
Thanks everyone for the comments.  And, Dee, while you are correct that there are those in a worse condition than myself, my condition pretty much eliminates my ability to live a "normal" life.  For instance, good luck finding work in my field while having an ostomy--a)  It's not good to be sitting in a meeting with high-level executives while your ostomy is making all sorts of interesting noises.  Let alone the above-mentioned smell.  b)  Any company that would CONSIDER hiring someone in my field wouldn't want to hire someone whom they know will need a 1-2 month leave of absence sometime (hopefully) in the near future.  I've been told by my surgeon that 1-2 months is the MINIMUM amount of time I can expect that I will be totally bedridden after the surgery, mainly due to the severity of my hernia.  

Yesterday, I offered to go with my father to pick out an upgrade he needed for his computer.  He turned me down, as he didn't feel it was appropriate for me to be going out in public with the odor that was emanating from my ostomy....  (and he was probably right).  Today was my "bag change day" so I changed the bag but it screwed up my schedule so I didn't get to go--things like this are very difficult to work around when you are in an industry that requires 24x7 emergency oncall coverage of clients with just a few minutes' notice of having to go somewhere to fix something.  

At my last job (ironically, AT THE SAME HOSPITAL THAT NEEDS TO DO MY SURGERY), my boss actually got to the point that she even counted bathroom breaks!!!  At the time, that restriction didn't concern me (NOW it would), but you can understand what that would be like for an ostomate....  And, this was not a menial job--this was an $85k/year salary IT job.  But, in the interest of "more with less" that our society is doing, this is becoming quite common....  I lost that job several years ago and since then have been on my own, which is very difficult when clients fail to pay their bills.  (I wrote off $30k in invoices last year alone as uncollectable!)

ANYWAYS, back to the supplies....  I use 2 3/4" Convatec bags/wafers.  I barely fit into those now (the stoma has grown quite a bit since the surgery--it now literally hangs out by 5" or so!)  I am already in discussions with one of you about seeing if your bags fit.  I am HOPING not to need too many more, as I am HOPING that I can get surgery sometime soon.  The hernia is getting painful and making it even harder to work, so I really can't wait too long before they fix it.

If I still wind up needing any additional bags after the person I'm already speaking to (I hope not!) I will post.  And (wishful thinking) any left-over supplies that I do have when this is done will be donated.  (does anyone know of anywhere that they can be donated, or do we just post on here?)

For the other questions:  YES, the ostomy is reversable.  In fact, I was MEDICALLY cleared to have it reversed back in July.  But, the bean counters at the hospital won't approve it.  I'm fighting with them now and I get no returned calls, delays, nobody knowing where the request is, etc.  As I said before, I'm considering legal action at this point--I don't know what else to do...

The real issue is insurance--I am uninsurable due to pre-existings (sleep apnea).  I used to have GREAT insurance while I was at the hospital, but that is gone and due to another mess with another employer I had after the hospital (he stopped paying the premiums without telling me--I found out with the cancellation notice from the insurance company!), I lost my insurance.  When I tried to get replacement insurance, I was told by the insurance agents that NOBODY would take me no matter how much I offered to pay because of the pre-existings....  THIS is the wonderful healthcare system in America--IT SUCKS.  For those that do not live in the USA, be HAPPY with your system--it's surely better than ours, even though we keep telling ourselves that we are the greatest country/have the greatest healthcare system in the world....

As for the cost of the bags, they cost about $150 / 10 bags & wafers.  That's not a lot, but when you are already in debt because you cannot work as much as you used to, and clients that you DO work for don't pay their bills on time (or at all), and Uncle Sam decides they STILL want tons of tax money, $150 is quite a bit of money that I am having trouble spareing....  And don't get me started on taxes--Florida is going back 5 years and finding little technicalities to hit small businesses with.  (I had a $15 mistake on a tax return 5 years ago and as a result they slapped me with $1100 in late fees a few months ago!!!!)   I can afford that once every 2-3 months or so, but the luxury of changing the bags every 3 days like many do is not an option for me.  That would equate to $150/month minimum and I cannot afford that.
Tue Jan 26, 2010 4:24 am
Robert, I know we moan about our NHS system, but your horrific story has brought me to think how lucky we in the UK and Australia are. How awful it is to have to go through all that, no surprise to me that finding positivity is so difficult .... I hope that we can help you in some way to make thinks a bit better. Chin up, Rachel x
Tue Jan 26, 2010 7:40 am
OK Dee, lighten up on the guy.  He has enough going on .  Sure there are people worse off than him but nevertheless, he is at a rough point so how about a little more positive support.  Like you said, isnt that why we are here?  

Now Robert, I know you have been screwed over buy our system but there is no greater country than America.  I have been all around the world (I am retired Air Force) and believe me, there are FAR worse off places and people than in America.  Things will turn around...they always do.  Hell at one point in my life, I was living out of the trunk of my car while I was going through a divorce.  Just try to stay positive.  

With that said, not dismissing you Robert, but can we get back on topic?  I am still looking for opinions, suggestions, experiences on intimacy.

Tue Jan 26, 2010 7:59 am
Tis the wee scots terrier again lol

Ok firstly RobertG, It pains me to hear that you have to live yor life being noticably regected by all who you care about because of your ostomy issues, dude that's not on at all, actually not in a million years do i find this acceptable.
I run a foundation which amonst other things provides free ostomy pouches to ostomates who for what ever reasons, find themselves unable to access the necessary amount of supplies needed to achive a quality of life.  Please don't take this the wrong way dude, but to me, i think your situation is totally unacceptable.

I'd like to help you if i may, by way of mailing you enough pouches so's you can change your appliance daily, thats right dude, daily. I'm willing to send you 100 or so pouches every 3 months dude. until you a) have the reversal, or b) find another source. I'll airmail a parcel over to you pronto!!!!
If you could do me a wee favour and find the pouching system you use online, post a link on here that has details on the pouching system,(you'll find this on your manufcturors website), and we'll take it from there. I'll send you a message containing my email and other contact details after this post.  If you have already found a batch for now then that's cool, but if not the offer is there whenever you need to take it up.

Secondly the whole ostomy and intimacy thing.

After a few attempts some time ago at seaching out a suibtable partner, i had resigned myself to the single life and decided that it would be easier trying to find a suitable partner that also had an ostomy. I've been registered with meetanostomate for maybe 3 years now and have never actually met an ostomate. It kinda gets you down a bit and can understand chris's point of view completely and others for that matter. Living the whole "one man and his dog" life does kinda suck.
Well that all changed a few weeks ago, i was on Facebook one day and got a friend request form an old school friend, gosh i hadn't seen her for some 20 yrs, so we got chatting....

One thing led to another, we met up, she looked stunning and we had a great time, agreeing to meet up again real soon. This got me into the panic stage, "i like this chic, but she doesn't know about my ostomies, how and when should i tell her".  so after the next meeting which went even better lol, i decided to send her a mail, it was make or break time......
Here's what i wrote...we were actually having a convo about other things also, sex mainly lol, so just filter out the the rest..(you have to excuse the language, i was trying to be blunt)
"Yeh i guess you've got a lot on your mind, can't even begin to imagine how difficult it has been for you this past however long, can't be nice that's for sure. You got lots to be cautious about, what wi your "all men are letdowns" motto, kids, ex- fella,ect.. and to be honest, i'm no catch lass. i'm half the man any man is.
so i'm just gonna spit it out like it is and let you know where i stand, (shit this could be make or break time lol)..
Right truth time lol, i can't have sex all night long, actually,for me to f**k anything involves sticking a needle in my knob so's that"maybe" a chemical will give me a hard on, bit pathetic i know, fuckin sucks actually but unfortunately that's how it is.
You've mentioned that you had a good look through my website, so i imagine you understand a little about what the foundation is all about... you might have already worked it out by now, but i feel i have to tell you before we get any closer, it wouldn't be fair otherwise.
Babe, i have no bladder or back-side, which basicly means i don't do the toilet the way other men do, i have 2 holes in my abdomen, one i stick a catheter intoto pee from and the other has a pouch stuck to it at all times that i poo into.
So there you go lass, only half a man, it's was either that or die.x

Not that much of a catch huh, but at least i don't think with my dick, i'm a cool guy, pretty clued up, and more than cool with whatever you decide next."
So that was it, i had told her and had a sleeples night awaiting her reply in the morning, i actually timed it so she would have been asleep when i sent the message lol. I was actually quite amazed by her reply. it goes as follows.....
"ok....thanx for being honest babe, I appreciate that but just to let u know that it hasnt come as a shock or anything. I have read ur website soI knew about ur situation.
I have dealt with a Colostomy before so I know all about how they work, wot fasinated me was the indiana pouch,so I researched it last wk & got to know a bit about I knew wot I would have been getting myself in 2 babe its kool.
I admire u cause wot u have been thru would have been soul destroying for sum but u r a fantastic guy & more of a man than any I know tbh, so no need to worry about that.
Sex? nuh doesnt bother me, the mind is a far greater thing.
Sooo if yer leaving it up to me, then, yeh I still want to get to know ya....defo.
My judgement in men has not been good in the past (to say the least) lol but I know ur different & im more than willing t give it a go, c where it leads.
xxx   "
We've met twice since then and it has been amazingly easy and am looking forward to what the future brings.
What's the moral of this story?.......Never lose hope, because you never quite know what nice things await round the corner.x

Last edited by sweede on Tue Jan 26, 2010 8:19 am; edited 2 times in total
Tue Jan 26, 2010 8:08 am

  YOU ARE THE MAN!!!!!  I hope Robert takes you up on your offer.  As I said earlier Robert...things will get better.  Just look at Sweede.  After three years of waiting for a mate, he may have just met his.  Your supply issue may be in the past thanks to Sweede.  

There's always just have to believe.

Tue Jan 26, 2010 8:12 am
Awwww... so pleased for you Steve!  xx
Tue Jan 26, 2010 8:22 am
Thanks folks, i'm a wee bit pleased my self, can't wipe this stupid smile of my face actually.x
Tue Jan 26, 2010 11:16 am
Have browsed all your folks posts.  Sweede, that is just awesome and inspirational.

It is interesting  and glad to see the guys post on their intimacy issues.  From my own practice, my experience has been the young women (20's) usually have the biggest issues re: body image and when to tell someone they are dating that they have an ostomy .  Maybe women are just more openly verbal about it than men.

My most surprising patient was a 93 y/o new ileostomate when I was in home care.  I recall asking her what questions she had about her ostomy and she said, "what the hell am I supposed to do with this bag when my boyfriend flies into town??" have to love it!  So, we had a dscussion!

Everyone comes from a different set of circumstances in life prior to ostomy surgery.  Some folks end up with stomas who never felt ill to begin with.  For these, I think having a stoma is more difficult.  For those who face life and death or their intestines have completely disrupted their lifestyle, an ostomy can be a God send and new lease on life.  Family or partner support, or lack of it plays into how one deals with things.  Then, we also have our own individual make up and life experiences that play into how we deal with things.

For Chris:  maybe you could share what it is that makes things extremely difficult with your ostomy.  Containment?  Odor?  Inconvenience? A lot of folks are experienced here and may be of help.

For Robert:   I am assuming you are in the USA..  Don't know if you have spoken with a medical social worker , the chances of you getting on Medicaid  or is county insurance available ( it is in some areas where one doesn't qualify for Medicaid) so you can get your reversal?  Does your physician know of the insurance difficulties?  
As to the odor:  You may want to try oral deodorants such as chlorphyll tablets (Can usually pick them up at the healthfood store) or Nullo (commercial)...those often help more than drops, etc, placed in the pouch itself.  may also be able to help you with pouches.  There are some one piece that have a larger cutting surface than what you are currently wearing.  

This is a great discussion.

* Certified Wound and Ostomy Care Nurse
* Registered Nurse
* Bachelor of Science in Nursing
Tue Jan 26, 2010 11:31 am
That's wonderful Sweede!! Good for you, keep us updated!
Tue Jan 26, 2010 12:37 pm
Hi Ya Sweede, that has got to be one of the most uplifting posts I've read in a long, long time and I sincerely hope it continues cause you sure as hell deserve it, it seems you spend a lot of time helping others, SO What Goes Around . . . .
PS I"ll post to you tonight re comfizz, hads a bit of hillarity, will explain later.
Keep the faith my good man. Ed
Tue Jan 26, 2010 1:08 pm
Sweetie -- you smile all you want! You are the man -- and a smart, generous and funny one at that.

You've made me wonder if there is a foundation here (Canada) that does what you are willing to do for RobertG. I'm going to find out ... a worthy cause for donations.
Tue Jan 26, 2010 2:51 pm
Hi Sweede
I am so incredibly happy for you. The whole girl thing sounds incredible and not at all surprising. You are a super cute guy and obviously a very cool person with a lot going on, I cannot even imagine someone disqualifying you based on the ostomies. Like I have said before, if my husband had sprung the ostomy on me while we were dating I would never have changed a thing, I can honestly say I would not have been turned off in any way because I knew he was the only person on this earth that I wanted to be with.
Good luck with the whole thing and please keep us posted as to how it evolves. Its so nice and with Valentines day coming up and everything.
Tue Jan 26, 2010 2:56 pm
ok, so it sounds like you have the supplies thing under control. Is that right? Someone is going to send you bags and the odour situation can be resolved so you can somehow begin living a little bit better and then you will have the reversal. Is all that right?
-Also, i think its still possible to work with an ostomy. My husband goes to work every day. I am not saying it has not been hard and dealing with all those issues has been easy but hes managed it so far. Of course I wonder if he wont be able to manage any more. I feel like we are living on borrowed time. None of my friends seem to know or understand the gravity and the difficulty of the situation and everything we have to juggle to keep life normal. But oh well, we are managing so far.
Tue Jan 26, 2010 3:39 pm
Wow.... thanks for all the comments folks, much appreciated, i'll be sure to let you know how it
Wed Jan 27, 2010 1:10 am

Yes, I am speaking to someone via email about extra bags.  As for working, I do work.  The Ostomy does cause problems because it often gets in the way when working on computer hardware in tight spaces (seems all computer server rooms are just too small).  I can USUALLY get around that.  The real problems come from it being very unpredictable which can cause me to miss scheduled things like meetings.  And, because it can take quite a bit of time to deal with (ie, if something goes wrong with the bag), it's not the best for being 100% reliable in an oncall situation.

But, the real problem with work is not the Ostomy--it's the hernia.  The hernia is getting painful (more and more by the day).  I've read that is to be expected, but it doesn't make it easy.  I find that sitting in a chair for more than an hour or so becomes painful, and most of my time (as an IT person) is sitting in front of a computer.  (standing is also painful--the only thing that is NOT painful is lying down).  

Another thing (really for another topic--maybe I should start a new one?) is that some people consider an ostomate as a liability.  I've actually lost long-time clients because they feel that because of my condition they cannot rely on me 100%.  They see the bag bulging out and it's like they feel that any minute I'm going to keel over and have to go to the ER.....  I wonder how many others have that same problem...
Wed Jan 27, 2010 9:00 pm
I just want to say to everyone how thrilled I am how you are all  pulling together to help out our brothers and sisters.  I wasnt expecting the response that this topic is receiving.  Thanks to all...karma is a wonderful thing.

Thu Jan 28, 2010 5:20 pm
Hey Steve ( Sweede) You are a good guy , the World & this site needs people like you!!

My best wishes to you & May your foundation continue to thrive......Pete.
Past Member
Sat Jan 30, 2010 5:09 pm

What an excellent discussion everyone. I am unsure if you are being polite and call sex intimacy.  I certainly have had no problems agreeing to consentual sex. I kept my pouch discreet and all was well.

Chris - Sounds to me like you had depression and social issues before your surgeries and now really feel doomed. Due to my illness I was isolated and stuck at home for 7 years. Once I recovered from my ileostomy, I was out climbing mountains, kayaking, running marathons, attending all day music festivals, and breaking hearts as well as having mine broken.  

Back to Vic -
I used to let my stoma take the fall for my flaws surrounding intimacy, but I don't anymore.  I am coming to terms that I kick ass and most of the guys I fall for are jerks!
I am a nice girl who keeps falling in love with the "bad boy." I have GOT to stop falling for jerks.  So now it's time for the nice guy to get their chance at winning my heart .

After 20 years of marriage, I have done the work to recover from a divorce. So many people want to jump into a new relationship without healing and growing into healthier person.

As I have grown older, I have difficulty finding well rounded people period. I choose my friends carefully. I do my best to surround myself with people that elevate and encourage me.   I stay clear from takers, users, needy, depressing, and negative people to ensure that I keep my own dark thoughts in check.

Be careful. Just because someone is on this site and has a stoma, doesn't mean they are a better relationship candidate.  Whether they are fellow ostomates or not, surround yourself with good people. Tell the jerks, whiners, victims, and takers to move on.

Good luck!

Last edited by Past Member on Sat Jan 30, 2010 7:43 pm; edited 2 times in total
Past Member
Sat Jan 30, 2010 5:12 pm
vicbear13 wrote:
I am still looking for opinions, suggestions, experiences on intimacy.


I agree with Vic!
Forum protocol: Wanna change the subject of someone's thread? Then start your own.
Sat Jan 30, 2010 7:24 pm
Thanks Imperfect!!
Past Member
Sat Jan 30, 2010 9:43 pm
sweede wrote:
   but at least i don't think with my dick Sweede.x

Aw! That's so nice. You told a fib though.  What fella doesn't THINK with his weiner?
Past Member
Sun Jan 31, 2010 10:28 am
imperfect wrote:

Aw! That's so nice. You told a fib though.  What fella doesn't THINK with his weiner?

You can't keep a good man down!
Mon Feb 01, 2010 8:48 am
Sorry to dissapoint you imperfect, but i'm afraid i have to be a little bit more creative than just simply flinging my weiner around the room, don't get me wrong mind, nothing beats lying naked next to a loving partner, but sadly wot with prostate removal n all, it kinda severs the urge to forfill one of mans basic inticts, hence the tounge piercing lol.x
Mon Feb 01, 2010 9:21 am
Past Member
Mon Feb 01, 2010 1:48 pm
sweede wrote:
Sorry to dissapoint you imperfect, but i'm afraid i have to be a little bit more creative than just simply flinging my weiner around the room, don't get me wrong mind, nothing beats lying naked next to a loving partner, but sadly wot with prostate removal n all, it kinda severs the urge to forfill one of mans basic inticts, hence the tounge piercing lol.x

Uhhhh I said you still THINK with your weiner!!! haha

Your visual though...lordy schmordy that's funny.
Sun Mar 28, 2010 7:45 pm
Tampa, Fla, I was just there last Sat.  Got back from a cruise with my boyfriend.  We had a great time.  I never thought I would be doing that 11/2 yrs ago.  That is when I had my Urostomy due to bladder cancer.  I met a nice guy last year. When I got to know him better during our budding relationship I told him evrything about my health issues.  He had some of his own and we both saw past them and we continue to enjoy each others company.  It comes down to if the other person does not accept for the way you are then you are better off without them.  Unfortunetly you need to weed them out.  You should have no problem meeting girls, your a cutie honey.  Best of luck.
Mon Jun 28, 2010 1:28 pm
I love Bella Bands - good for guys or gals. As far as getting intimate, confidence (and a bit of a wild personality) is all it takes. I mean, I used to sell SEX toys for crying out loud!

Bella Bands help 100% though!!
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