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Posted 3/29/2005 10:28 PM (GMT 0)

need advice!

I have had an ostomy for 5 years! Of course, not by choice-but it is a part of my life and that is how it is. This is the problem-my husband of 11 years thinks that I am the disgusting and always thought this way of my ostomy. The smell, and my goodness, if he sees my pouch-he could hit the floor! Any advice of where to go with this? Whoopy is made with panties on and a t-shirt on (sorry if this is too personal)! I have just recently switched from coloplast to hollister pouches with the charcoal, which I must say are pretty darn great! Cuts down greatly on gas build-up! Does anyone else have this problem with their spouses? Is there any secret that they can pass on to me?

Posted 3/30/2005 3:09 PM (GMT 0)
I actually logged onto the ostomy site to pose a question regarding married life with an ostomy and issues with intamacy. I do not currently have an ostomy but have little colon left due to crohn's and there is much discussion of a possibility of an ostomy. I saw your post and was shocked. I know an ostomy is not easy for your husband but he needs to cope with it better.  I can only imagine you must struggle with an altered body image, his comments must make it very diffucult for you.  I'm surprised you have "woopie" at all knowing he thinks you are "gross".  I can't even articulate what is going thru my mind.  I hope other women who are in relationships can shead some light on the subject. I am curious how couples deal with sexuality when a partner has an ostomy. It is a fear of mine of what I may have to deal with in the future.  I hope you can speak to your husband and help him cope.  He certainly needs to change his attitude if he is going to be a support system for you.  Take care

Posted 4/1/2005 10:17 PM (GMT 0)
I don't have an ostemy but trying to learn about in the case my Crohn's turns worse ... and I think your husband should get counseling or NO sex ... you deserve better than this!!!! Hang in there! Liz
Posted 4/4/2005 1:52 AM (GMT 0)

I am sorry your husband is , well, i dont really know the word I'm looking for, but my husband is about the same way. We have been having other married problems  too but I know it all has to do with he way he feels about me having an ostomy.  He doesnt come out and say anything to hurt me but I can tell how he feels, I think if he would see my bag he would fall on the floor too. I cant ever talk to him about my ostomy, he always changes the subject, it has just been a temp. until now and I saw the Surgen a couple of weeks ago and I'm having the surgery to make it permanent. He hasnt even talked to me about the surgery. If it is something he doesnt have to hear about , then everythings ok. 

I wear a tube top pulled down over my ostomy, so it will go around my belly, instead of my boobs.  It makes a great cover up and it doesnt get in the way.  This is when we have sex, which as only been 4 times this past year. I know I had surgery this past year but , there has been plenty of time .  Oh well , that is another story, i wont get into.

I hope your husband will get over his dumbness, and start sharing this with you and being supportive. I know mine never will, so this is a marriage that wont last too much longer. I have enough to bring me down, i dont need him to bring me down even more.  Have you ask him about going to councling with you? maybe that will help. or maybe you could chase him around the house with it untill it isnt a shock to him anymore? haha,

good luck, i really hope things get better.

email me if you ever want

Posted 4/4/2005 11:00 PM (GMT 0)
Tanya, you are a hoot! I am very sorry to hear that you ostomy will be permanent. Is your surgery scheduled soon? Why do you think men are this way? It is not like I ask my husband to help me change my pouch or look at my site-to be honest, I try to go the to the fartherst restroom in the house from where he is, and he still complains about something. Do you mind I ask why you have your ostomy? I would love to chat!

Aimee

[email protected]

Posted 4/4/2005 11:32 PM (GMT 0)
I have only had mine since Jan. My husband has absolutley no probs with the whole thing. I'm the one with the problem. I have gotten better since I got bags that you can't see thru. They sent me home from the hospital with see thru bags and I hated it. I guess I still feel a little awkward about it. I hope in time I'll feel better about the whole thing.
Posted 4/5/2005 7:52 PM (GMT 0)
 

Cindy, is there any way I can help you feel better about this? I too get disgusted with having to deal with cleaning out my pouches everyday. I so do miss the days when I could just "flush"! Those were the days! Anyway, if there is anything I can do to make you feel better about dealing with this, I would love to help!

Aimee

Posted 4/6/2005 1:01 PM (GMT 0)
Thanks Aimee, I'm doing better than I was. Found out yesterday I don't have much of a choice. I better learn to deal! The surgeon informed me that before I can even think about getting reconnected I need some repair work done on my rear. Joy to the world! He claims I still have a big fistula and if he would reconnect me now I would be right back in the same boat. (I totally missed this information after my surgery) Too much morphine I think! he made statements like"sometimes you should leave well enough alone.......why mess with a good thing?" I get the feeling he's none too thrilled with the idea of putting things back together.

In the beginning (with the clear bags) I had this obsessive compulsive thing going on about cleaning it all the time. I've gotten better about that now that I don't have to look at the contents all the time. My stoma is just a baby. They thought it was gonna die and I would have to have surgery again. It's about the size of a dime. He also put it about 2 inches above my belly button. Makes wearing clothes a challenge. Can't put it in my jeans, It cuts off the bag and the top fills up with air. That's pretty...NOT!

When it's all said and done, I do feel better than I have in awhile. I can sit without pain and I'm eating what I want and am still managing to lose weight. (off the pred now ) I just need to whine occasionally. Have a pity party every now and then. eyes
Posted 4/6/2005 11:41 PM (GMT 0)
 

Cindy,

My ostomy too gets cut off by my pants, so I have to unbutton my pants and let everything "fall". I did just recently change from Coloplast to Hollister brand so I don't have any trouble with gas anymore. The Hollister has a charcoal type filter that expels all of the gas. I used to get really stressed when my pouch filled up with gas and I had to run out of work or try to find some place to expel the gas. These new appliances are terrific. I am kinda obsesed too with keeping my pouch clean too, but do like the tan pouches so I too don't see the contents. Why does your doctor talk in such babble? Tell him to just get to the point! I want you to take care and know that if you need to chat there is someone else who is going crazy as well. I have no clue how you can email me directly-can I give my email to you-I am new to the boards but do love it. I look forward knowing that others relate to my whining-chat when you can!

Aimee

Posted 4/11/2005 8:15 PM (GMT 0)
I too had a problem with pants, At first I went to wearing sweats all the time but then I came up trying maternity pants. It is fantastic!!! I can wear jeans again and no one can tell because I always make sure my shirts are long enough to cover the elastic part. Only draw back is none of them have front pockets.
Oh and I guess I should mention I am a male so don't think you can't because of that. Besides I get alot of laughs from the people that I have shared this with, right after showing them I turn around and ask if it makes my butt look big, Hee Hee
For those of you that have a gas problem like me, I use osto-ez-vents.
To cover the pouch (when I wanted to make sure it was hidden at those times you needed it) with a pouch cover I made out of an old pair of sweats. But I now see someone has started making them to sell that look alot better then what I did.
Just a couple of suggestions that I thought I should share.
If you would like more info on these you can email me at:
[email protected]
I am not saying more as I am a moderator on diabetes board and I know I have to follow no advertising or links rules.
AL
Posted 4/12/2005 12:23 AM (GMT 0)
Al, I saw an add on the home page of HW. I looked thru the pics of the bag covers. I got a Kick out of the cover for the little "intimate moment" bags(as the ostomy nurse put it!) They were white with lace and a heart in the middle! They made me laugh!

They are a good idea tho. I think I'll make myself a couple. May not be quite as fancy as those but I think I can come close. I need a denim one.

My biggest prob is that most of my shirts are too short. Darn....guess I'll have to go shopping! for the past couple days I have been turning up the bottom of the bag and clippin it up with a hair clip. The kind that snap. Gotta be careful not to punture the bag tho! I thought I had but it was just the outside cover!

There are times I think I'd make a good comedy act. don't remember what I use to do for fun before all this! tongue
Posted 4/12/2005 1:03 AM (GMT 0)

Hey Cindy,   

  Have you tried the small bags?  Coloplast makes the two piece systems and you can change the pouch without changing the flange,  I used these for a while, you could use a small bag and maybe it wont get to much in the way of your pants.  Do the pouches you use have a clip or velcro ?  I had a hard time with the clips , i could never keep track of it and i would end up dropping it , so i switched to the easy close ones with velcro. 

Aimee,

  My surgery is scheduled for May 9th, I could've had it sooner but I'm going to school and I wanted to wait untill this smester is over so I wouldnt have to miss classes. I have severe fistulas that wont heal, It is really bad, my butt is almost one big open wound, the fistulas all conect and they go every which way,  There seems to be no hope of them healing unless the intestines are taken out and the CD is all the way through my large intestines , so unless I have it all taken out , it will most likely come back , so I figure they should go ahead and take it all now and get it over with,  I hate to have this but I just keeping think about much better things should be, I go through about 12 pads a day from drainage and bleeding, The pain is terriable and I feel like crap, so Hopefully this will make all the CD gone and I pray it dont come back in the small int,

The osto-ez-vents, like Pincushion said, are good too.

Posted 4/25/2005 3:15 AM (GMT 0)
hi al i am new to all this i just had a colostomy back in feb.when i was sent home my first week of dealing with my ostomy bag was ok but then i started having problems with my skin it became hamberger. all sticky stuff and paste are bad for my skin. so now i am useing an non-adhesive w/o-ring and a belt an even with this system i am having problems with keeping soom air space an stop the leaking. i am really at my wits end and my ent nurse is runing out of things to do for me. someone please help me out.thank you m.
Posted 5/17/2005 4:22 PM (GMT 0)
Hello eveyone,

 I just have to say that I am so sorry that you have to put up with a husband who doesn't seem to understand what you are going through. It truly amazes me on how spouses can react that way about someone there supposed to care about and love. My husband just had an ileostomy done this past January and I couldn't even imagine not being supportive in every way possible. well at least I try to be the supportive wife I should be. I am just so happy to have him in my life that I will accept him however God gives him to me. I had a hard time at first because I knew he was so unhappy with how things turned out but you just have to keep on loving and rebuild your relationship to make it stronger. I guess for some people it may seem hard to deal with, but you have to try and stay strong and don't let him bring you down. You need to stay possitive for your own health. You have enough to deal with mentally and physicaly, I personally would let him know how much it hurts you to know that the person you vowed to spend the rest of your life with, through sickness and health isn't honoring those vows. How would he feel if the shoe were on the other foot? I am sorry if I'm being to bold but it I just can't get over his reaction to you. So sorry for your situation. It's really hard to hear things like this because I am a spouse of someone who is going through the same thing and I just couldn't imagine reacting that way to him. Stay strong and think possitive and know that you are loved in a special way by all on this site.

Sincerly,

Jen

Posted 5/18/2005 5:01 PM (GMT 0)

Jen,

your words of encouragement were refreshing, I too have an ileostomy, my second one actually and it's about 5 weeks old now. I worry continuously about my husband and how he "views" me now, but he always reminds me it's ME he loves, not the illness, or the "bag" or anything else on my body, but just me. I feel horrible that this individual has lived for 11 years with someone who cannot count his blessings for still having his wife. Most of us that go through this kind of surgery do it because it is life or death.  If it were me going through this rejection, I too would point out how much it hurts to feel this pain, and remind him of his vows....sickness and in health, better or worse...death till us part.  I hope since the first post was so long ago that things are improving, I'm going to pray for this husband, and for mi4. For me, keeping up my self esteem seems to be the key for living with this bag.  Be encouraged mi4, your pain is shared by many of us, and you are loved and appreciated too!

Posted 5/24/2005 7:09 PM (GMT 0)
Hi Tammy,
Well I am very happy to hear that your spouse is supportive of you. It seems that lately all I hear is how someone was left by their spouse or girlfriend or who ever when they became ill. My husband just talked to someone on the phone last night that the doc referred him to who has had the reversal surgery. (My husband is looking for others to talk to befor he goes through with it himself.) Anyways he said that his girlfriend left him when he became ill, but now he has found someone who is perfect for him. My heart goes out to all who are dealing with this in whatever way. I know it may be too much for some to handle, but they should stop and think about what that person is actually going through themselves before they act so shallow. Sorry it really amazes me how people can react to others who are ill. Not that I hope any harm to anyone, but if anything where to happen to them and they needed to count on someone, how would they feel to be left behind. Maybe others should take a long good look at themselves and try to put themselves in someone elses shoes before they react so harsh. I bet it would be a whole new story then! Now that I got that off my chest....you said that you too have an ileostomy, a second one, if I may ask did you try to have the j-pouch? Was just wondering because you said second one. My husband had colitus for about four and a half years when he had to undergo emergency surgery in January and woke up to find out he had to live with the bag. He was not happy at all and it was rough because he didn't have the opportunity to prepare himself for what lied ahead, it was all thrown at him. I guess thats where I come in and make sure to do whatever possible to make him if at all possible a little more comfortable with the situation. Don't get me wrong or anything, it hasn't been an easy job and there has been plenty of arguments, but at the end of the day all it boils down to is that we love eachother and have two young boys whom we both love dearly and they put us in check to put in the effort to make everything work. We've been truly blessed for all we still have.
Sincerely,
Jen
Posted 8/2/2005 1:28 AM (GMT 0)
scool  I was searching for information on non-adhesive pouches and some how landed here. ha ha ha However, when I read your post I felt compelled to answer it. YOUR HUSBAND turns MY stomach. I can not believe any loving husband would ever react like that to such an insignificant matter of a stoma!

I met my wife, 6 years ago. We started out as good friends and not romantically, over the internet. Then one day, she said she would be in the area of my business and asked if it would be okay for her to stop by. I was more than happy to finally see her (she wouldn't send a picture of herself, over the internet).

We met on my 58th birthday and it was truly love at first sight. In the course of our relationship, the time came when intimacy was so very needed. That is when she froze up and told me she had an innormality She made it sound like she had some horrible defect or something. ha ha ha I asked just ONE question, "Were you BORN a woman?". When she answered ,YES", we both kinda laughed and broke the ice.

Needless to say, we made beautiful, tender love and I got to see her pouch for the first time. I honestly couldn't understand what the big deal was, but was very understanding to HER feelings.

This is what I told her, "It looks to me that you've decided to carry your purse EVERYWHERE." The pouch never again was discussed unless she wanted to talk about it. When I finally saw her stoma for the first time, she was so nervous that I was worried about her. It was nothing more than an "Outty Belly-Button" to me. A little redder , but pretty much the same thing, with the exception that it seemed to slide over towards her right side. ha ha ha

I tell you this in 100% complete honesty, "She is truly the most beautful, sexy and wonderful woman I have EVER known". We have been married a fairly short time and I can't keep my hands off her.

YOU are a woman, first! Whether you have tattoos, piercings, or a stoma.......MAKES NO DIFFERENCE! I don't know you or your husband but I can tell you that LOVE must either be blind, or sees much deeper than our eyes do. I wish your husband would look at the woman he fell in love with, rather inspect you for imperfections. I am willing to bet, that if YOU looked for his imperfections rather than the man you loved.....you would have a great deal to adjust to, yourself.

I conclude by simply saying that a stoma, pouch or whatever else happens to be on the person you love has NO BEARING on that love. Please believe a man who has shared some very personal information with a stranger, ONLY to let that starnger know....SHE IS FINE!

I wish you the best and pray your husband opens his eyes to the beautiful woman he married.....and soon, before someone else does!

Snake Pit

Posted 8/19/2005 7:00 PM (GMT 0)

I am a wife of a CD patient who just this month had the Colostomy that is permanent, I pushed him to make the decision so I could see him and US with our life back, he has been in the hospital since Jun with 5 surgeries proir to the Colosomy...SO it was something we knew we had to do but he wanted till he absoluetly had to and guess what it happened. I am 24 and he is 32 and this is RIGHT now harder for me than it is him. I will always be there to support him as I always have and WILL NEVER leave him or treat him poorly about it but I too am having troubles with it. I have changed dressings and scene more of him than can ever imagine, I have done some pretty groos stuf for him but clearly changin his bag for him 2 in the hospital was clearly the worst and I may self wasnt ready to accept it. So it made it a little harder. He WANTED/MADE me change it with the ET nurse so If I have ever had to I knew how. I understand his thinking but then was not the great time for me. Any suggestions on this to help me better wife, let me know please!

God Bless

Posted 9/13/2005 7:46 AM (GMT 0)

Hi,
Just wanted to offer some advice. I also think your husband must be very shallow to react in such a way. You said you have been together for 11yrs and had the ostomy for 5yrs, so I suppose you had been ill during the 6yrs before your surgery? Where was he when u were sick and when you were having your surgery? It sounds like he really doesn't understand the bodily functions of EVERY LIVING CREATURE. So what if there is a difference in the "location" when you have an ostomy, what does he suggest YOU do about it?Assuming that you have found some relief from illess since your surgery, THAT SHOULD BE REASON ENOUGH FOR HIM TOO LEARN TO ACCEPT IT! My husband suffered incredibly for 10yrs prior to his, and even though his ostomy wasn't a miracle cure for his U.C. he hasn't been nearly as sick as he was before. I am thankful for that.
Pesonally,I think you would benfit from a shopping spree at a local lingere shop. It doesn't matter what shape, size, age etc. you are, im sure you can find something that will make you feel sexy and cover the pouch at the same time. Waist cinchers are great!! There is no need for it to be overly tight, just enough to fit to your size waist. (It stays in place better when it has attached garters)

I wish you the best

JuJu-Bee

Posted 9/22/2005 6:24 AM (GMT 0)
My husband has had a colostomy for 11 years. I am grateful for his life and have never thought about it in a gross way. It is a part of him. I do not even think about it and sex is not impacted at all by this. He is my sweetheart and I thank God he is alive. I used to change his colostomy when he was too sick and weak to do it. It was hard enough for him to accept it - can't swim, shirts can be tucked in, social noises, etc. I would never put that buren on him to think I was in any way grossed out by this - that would be cruel and damaging to his spirit.
Posted 10/24/2005 4:02 AM (GMT 0)
I too have a husband that is not extremely supportative.  I am 34 and feel I have my whole life ahead of me and a husband who acts like he does not want to touch me sexually.  He does, but he acts like it is out of obligation more than desire.  We used to have a great sex life until I got this colostomy and now, we have sex about once a month unless it is satisfying him with my clothes on and his off if you know what I mean.  I feel so disgusting and now I really feel like I have an alien protruding from my abdomen.

Posted 10/24/2005 4:07 AM (GMT 0)
I would also like to tell those out there who are new to this, that the disposable bags are the way to go. I hate cleaning the bags out, so I keep a few drainable ones on hand for emergencies, but I use the disposable, one piece covatec because I feel dirty when I have to leave the flange on for more than one day. This might help some of you out there who are getting frustrated and depressed at cleaning the drainable ones out.
Posted 10/25/2005 3:10 AM (GMT 0)
I am sorry to hear your husband is acting in such a way.Maybe you can find an Ostomy support group both of you could attend.Maybe he could see other men dealing with the situation in a much more loving way.

I have only had mine for a little over a year and a half and can be reconnected as soon as I can afford it.My insurance company refused to pay for the first surgery even after sending me a pre-approval letter so I am stuck right now trying to figure out some way to pay for that and the next surgery mad Money aside I know I have had a really easy time with mine due entirely to the support of my wife and God.Everytime something came up I said I couldn't do because of this she told me no that I could do anything.And so far the only thing I have encountered I couldn't was lifting heavy objects.I did want to ask about an earlier post that the person was using Hollister pouches that somehow helped with gas buildup.Can you tell me more about them?I have not personally seen them and I would like to try them.

 Anyway back to the point I wish you and your husband all the best! I do not know your husband or you but I will say this.Your Ostomy was not a choice you made, his lack of support for you after the fact is his choice.Just see if he is open to going to a support group with you.

 If not....

 

Posted 10/30/2005 8:23 PM (GMT 0)
I awoke from emergency surgery with my colostomy in July of 2003, it was the rudest surprise of my life. I was 42 years old and had been enjoyng the single life, including being sexually active. When faced with the reality of my colostomy, I was crushed and thought my sex life was over. How would I explain it, at what point would I tell someone about it, how would men respond to it, etc....

For me, the bottom line was that my sensuality/sexuality is a big part of who I am. Two years later, I have a surgical hernia that makes me look 9 months pregnant, but I am still single and dating. Of course I cannot wait to find a way to pay for the reversal so I can be done with it (God willing), but life does go on.

I have had mixed responses about it. I do not blame anyone who can't handle it, and I would not want someone to lie about how they felt about it. There are far more who understand and/or accept it. It took me a while to adjust to life with it, and there were plenty of tears in that process, but it happened.

To the original poster of this thread...I'm sorry that your husband has not been able to adjust favorably to what you have had to deal with these past 5 years. For me, that would probably be the end of my marriage, but I guess that's easy for me to say as a single woman. I am hoping that you will be able to work through it. Even if your husband cannot learn to cope, I hope that you will remember you are the same woman you were before your ostomy came along. YOU are not disgusting.

Speaking for myself, I wear sexy lingerie that conceals my pouch and keep on keeping on. I have to think of my colostomy as a thing of beauty because I am alive today because of it. Of course there are days when that is tough to do, but there is no other viable option this week.
Posted 11/11/2005 7:50 PM (GMT 0)
Sorry to hear the way your husband feels. I have to say My husband has given me full support. I go to the surgeons monday to talk about a reversal but it doesnt sound to possible. I still have UC in  the rectum area and looks like I will have to be sewed up. My husband is fine with this because I nearly died during the first operation and had lots of infections. He doesnt want be to go through what I did before. I use a hollister bag with filter and its not to bad. getting used to it now.hope things go better for you

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