Do you feel guilty?

[ICNJess]

I feel kinda guilty because I can't be intimate with my hubby. He's very understanding and is willing to wait till I am able to. He assures me that he loves me, doesn't want to hurt me, and that he doesn't mind waiting...but I feel guilty.

And I guess I'm a little paranoid, and I wonder why he is willing to wait? I trust him completely, besides he has no time to look elsewhere for love, we are together all the time, except when he is at work, but then he calls me from there on the work phone (shhh) and he goes to school, but he calls me from school between classes and tells me that he misses me and loves me. *sigh* I think that's why I feel guilty.

Sorry to unload, thanks for listening.

Jess grouphug

[Iris]

Oh Jess, your husband sounds like he is a sweetie, phoning you and bringing those beautiful roses to you after your surgery. I am sure he understands what you are going through. I know my husband is sorta quiet with what he is feeling, but he does little things, like yesterday, he knows I love cheesy rolls, which by the way I can eat with no side affects. He had to go out for a chiropracter appointment and I asked him to pick up some milk, when he came back he had the milk, but also had stopped by the bakery and bought me some cheesy rolls as he knows I love them. He does a lot of little things like that and it means a lot. I know how busy your husband must be working and going to school, my husband did the same thing when we were first married and yet your hubby takes time out to call you, that shows you are one special lady. I think you have a thoughtful hubby, who is there when you need him. Take care and look after each other.Don't feel guilty I am sure he would not want you to, hugs Iris hi grouphug

[dyno]

It is good that you can have that kind of communication and respect and understanding of the physical problems you have.
Without going into details because of the potential for young readers, remember there are so many different ways to physically take care of your husband or wife. If you are not able to physically handle all aspects with good communication and willingness to try different things you can have a very satisfying relationship in that regard.

Jolene

[tigger_gal]

Hi Jess,
at times I do and at times I don't feel guilty. I think we all kind of go thru this..
Brat

[virgo]

Hi Jess,

I know how you feel. One night I cried so hard that I could barely breathe. I was whaling and choking for air. My face was soaking wet from the tears. That day hardest I had cried in a long, long time. My Husband and I talked openly about how I felt. He assured me that he would love me no matter what. He said that I was worth it and that I was still I inside. I really did believe that his love for me was strong but I could not help feeling guilty. I felt like I had tricked him into falling in love with a healthy normal girl and now he was stuck in love with someone with an incurable disease. We been married for 14th years. Now for 1 year we havn't been intimate. he doesn't want to hurt me, and that he doesn't mind waiting..........I hope that help you. Matter fact my health bring both of us closer to each other. Your hubby sound like very nice guy. You are lucky Jess.

[poetgirl]

Jess,

Your husband is willing to wait because he loves you and values you as a complete human being. Intimacy is part of a healthy relationship, and as it was pointed out above, there are ways to remain intimate with your husband aside from having intercourse. If you are having a day where you feel well enough, surprise him by being a little frisky with him (if you know what I mean.) Even little things, like gazing into each other's eyes while caressing each other can be very erotic and build intimacy. He sounds like the kind of man who is appreciative, so any effort on your part will go a long way. And what a lucky woman you are to have such a caring and thoughtful husband! He sounds like a great catch. :)

[patticake]

My boyfriend has been the most understanding man I have ever known, Jess, your hubby sounds a lot like mine.I have been sick more than I've been well for the last year and we started going together a little over year ago. For the last 2 months I have really been out of comission, He told me that he loved me for who I am not for the sexual part of it. I am now feeling a lot better than I have in a while. we still have only had sex 3 times since I had surgery, [glad to find that everything still works OK.] I am 5 weeks post-op now. My IC hasn't bothered me too much lately either. I am looking forward to having more intimate times with him soon!!!I hope you have a lot of good times too. kissing kissing

[ICNJess]

Thanks everyone. I just feel guilty sometimes because, well I guess because I can't carry out my "wifely" duties. Well he is ok with that, and that's all that matters. :) Thanks for listening, he is a keeper, and I love him so much. grouphug

[tcbc1989]

Hi Jess,
I feel the same guilt.
But my hubby is very understanding.
He surprised me 2 years ago with a trip to Hawaii..( he told me to pack for tropical weather) and surprised me when angel we renewed our wedding vows at the little chapel in Pearl Harbor and stayed at the same hotel we did on our honeymoon. He bought a tux and looked better than he did when i married him 17 years earlier. He never makes me feel guilty but I feel like I have failed him as a wife. That is something I am trying to work thru because the guilt is from me and not from him. But I know h.ow you feel.....Tina C

[louise]

Hi Jess,

I think it is normal for all of us to feel some measure of guilt because we can't make love to the one we love. But at the same time, the way I try to look at it is that none of us asked for this terrible disease, none of us did anything to cause us to have this terrible disease, and none of us wishes we had this terrible disease. This applies to a lot of diseases and conditions that exist, not just IC. I have a young friend in her thirties who just had major surgeries due to Crohn's. Her life was irreversibly changed at a young age due to "this terrible disease". And yet she is the most loving, most caring and most compassionate friend I could ever hope to have.
She is always more concerned about ME than she is about HERSELF!

My husband I have been married for 35 years this coming November and I can honestly say I don't remember the last time we had what you would call "sex". My husband is also the most loving, caring and compassionate man I could ever have hoped to be married to all this time. He DOESN'T want us to have sex because he is almost paranoid about causing me more pain. We do cuddle, we do kiss and we do hold one another but that is the full extent of our "sex" life. For me, I can't even imagine having intercourse due to the constant urinary and low back pain I live with.

So I don't think any of us have anything to feel guilty about. Did we ask for this terrible disease? No, of course not. We would all love to get rid of it at the drop of a hat, if not sooner! But for some reason we have been afflicted with this debilitating condition and most of us will have to live with it for the rest of our lives. Just saying that makes me want to cry. Sometimes if I dwell on that fact I almost want to scream because the thought of living like this for the rest of my life is enough to drive me crazy. And one of the things I miss most in my life is being able to have my husband make love to me but I doubt that will ever happen again.

Now that I have said my piece on the soap box, I will let someone else give their view on the subject.

Happy Kissing, Happy Cuddling, and Happy Hugging,

Louise

bunny bunny bunny bunny bunny bunny

[Iris]

Hi Louise, I really enjoyed your post. Had some time this evening so thought I would check back in on the boards and so glad I did. Your post is quite true, I have been married 38 years this May and was not diagnosed with IC until last June, went through several months of pain and going from doctor to ER before I was diagnosed, so up til then everything was normal for us including our sex lives. After the diagnosis and several surgeries, everything went out of the window so to speak and I just wanted to be held and cuddled, which my terrific husband was happy to do as it knew what I was going through. My sex drive was nil until a few months ago, when I was feeling more like myself and we have had sex a couple of times and I hurt a little, not much, but he has been great and understands that things are not like they used to be and will still can be close, he often touches me in passing or just ruffles my hair when he passes my chair, sounds like a song doesnt it? But like you said we did not ask for this disease and I think your post was very interesting, at least we are still alive and kicking all of us, and just adjusting our sex lives to being close in other ways and still supporting each other every day, wow I am rambling on here, take care and thanks for the post, hugs Iris hi hat

[ICNJess]

That is true, I did not ask for this disease. And I know that there is a lot more that can be done other than the actual art of love making. It's just that we want to start a family, and I so desperately want children. Well we aren't going to try for another year or longer, but it would be nice to enjoy marriage a little more in that sense before a baby, if you know what I mean.

He doesn't make me feel guilty--just kinda feel that way on my own. If it's not one ailment, it's another bugging me. *Sigh* Thanks for listening, again.

[poetgirl]

Jess,

I didn't think I was going to be able to have much of a sex life ever again either, what with IC, UTIs and VV sneaking up on me all the time. But over time (and with lots of medications, supplements and TLC) I've been able to resume activities. I'm sure you and your hubby will be able to start a family -- and enjoy some fun before then. It just might not happen the way you envisioned. At least you have each other and I know his support and concern must mean a lot to you.

Did you have the interstim done yet?

[ICNJess]

Hey Poet--

Interstim trial leads are in, permanent device goes in a week from today and I can't wait!! Sick of having wires coming out of my back, lol, but I just remind myself that I'm doing so much better with my bladder, so it's worth it.

[Teri]

GUILT has become my name. For the last 2 years I've been sick and in and out of hospitals. I've been dealing with a husband who is over worked and definately over stressed and that only makes the guilt worse. Our health insurance and co-pays are killing us and all's I can do is lay in the bed and feel guilt.

The last year has been quite the test for our 13 years of marriage. There were more times than not that we were going to file because we were making each other feel so rotten. We have spent alot of weekends with his parents this summer and so many things have changed. They have seen exactly what this disease does to me AND they got to see exactly how their son speaks and acts when he's with me. His mother has set her 54 years old son straight more than once over the last few months. During the last fight we had I suggested to him that he show me just 1/2 the respect he shows his parents and if that doesn't work, we'll bring in the lawyers.
Welp, it's working blink No, it's not all heaven on earth but at least it's not the total he$$ we were both living. He bends over backwards for his parents (they are both 78) and he never complains. He cuts their grass every week, shovels snow, keeps gutters clean, makes sure their truck is running and replaces tires if need be. ETC ETS. But, when I'd ask him to pick something up at the drug store, which is a direct shot to our house, there would be a 3 day fight so I just stopped asking. I also stopped speaking. I couldn't say anything right and I couldn't stand the fighting anymore so I stopped talking all together.
When I got sick last month with panceritis was when I asked to be treated 1/2 as well as his parents. His father had been in the hospital a few weeks before my attack and my husband spent hours there. While I was in, he'd literally hit and run. Well, on one of his runs I told him how I felt. Then, when the dr came in I told the dr (infront of husband) about all the guilt and stress I felt and why. W O W eek eek eek did he rip my husband a new one! My recovery has been very slow. I'm scheduled for a hydro on the 16th of OCT plus on thursday I will find out about another surgery date for a new problem that just popped up and he's not loosing it.
He's been to the dr's 3 times since my pancreitis (during the blackout :cool: ) and he's been read the riot act every time about how his mood affects my illness.
I'm still feeling guilty but I don't feel as heavy because I have finally been lead to someone who was able to take some of the load off me.
Another reason we can never give up~

[ICNJess]

Hi Teri--

If you don't mind, I kind of laughed when you said the doctor ripped your hubby a new one when you unloaded your feelings. :)

I am glad that he is being more supportive of you. You have been through so much, and you deserve support! It can only get better from here, right? What's the new surgery for? Is it for the old Interstim site? :(

Feel better!

Hugs,
Jess

[Katrina]

Ya, I live with guilt, worry, all of that. I know my husband isn't cheating, but I still feel like I am failing him as a wife, and not just because of sex, but also because of the ammount of time I couldn't work, and how little I can do around the house. I know my man is great, but that doesn't keep me from feeling like he deserves more, maybe that is why I think he deserves more, and I would love to give it to him. Unfortunatly, seems more likely that would happen in a dream than in reality. I try not to dwell on it, but sometimes I can't help it.

[Amy Leigh]

Intimacy isn't really a problem(the only thing that isn't a problem!)But, understanding seems to be. You all seem to have very sweet, understanding husbands....how did they get that way? I try to tell mine that I need a few minutes of his time and he says "can't theres a game on" or something like that. I get angry, he gets angry, I flare up and he says that he didn't understand I wanted a few minutes of his time. But THAT'S WHAT I SAID! He says he knows I'm going through a rough time but that's no excuse to take it out on him and the kids - I don't know what to do...Do men understand english during football season? He told me to go see a counselor but he's the one dening me his time! Any advise would be helpful..I've received so much wonderful advise from the people here. I look forward to some help.. scream Amy Leigh

[ICNJess]

Hi Amy--

One thing you might do is to take him to your uro appts. so he can get some insight into IC. And also, I went to some pain counseling and brought him with to those sessions--helped him understand IC pretty well.

I've learned you can't talk to hubby during a football game! lmao lmao Try talking to him before bedtime or at a meal?

Hugs and love,
Jess

[MissMary]

I hope it's not to late to get in on this topic . My husband and I have been together since highschool and married for 23 years. I love him very much and i KNOW that he loves me. BUT I do feel very vunerable much of the time. i try to keep things "sexy" between us but........... You know, sometimes I'll be watching a movie and a man and woman will make love and I just yearn for that closeness again. Which is why I'm not going to accept that I'm not going to get better. I visualize us making love almost like I'm trying to cast a spell wink . anyway'that's my story.

[readingmom]

I think it must be pretty common to feel guilt over this disease. I feel like a failure as a wife alot of times too. Talking about it with my hubby helps us both. I have found that we are both grieving over a part of our lives that we have lost(for now.) I'm not giving up hope that one day we will be able to have a normal sex life. If your husband won't listen because of t.v. you could always do that trick that the guy does on the Outback Steakhouse commercial. He doesn't want to eat meatloaf, so he unplugs the frig. Unplug the t.v. when he's not around!!!HA! Then he's all yours!!!! Christie

[skershner3]

I cant say much on the football situation because when we were married I started watching college football and LOVE it. I am watching MSU & Nebraska play now and hubby is in bed. It is just one of the things that we love to do together is watch college football & the bowl games and championships are coming up so.... We have had a pretty good understanding from the beginning that he lets me do my thing and I let him do his which is great. My husband doesnt show his feelings very well, not alot of snuggling but we love each other so much, - but IC has put a definate strain on our household and relationships with our friends and family and us. Today I was supposed to meet a friend for lunch and woke up with terrible pain and cramping and spent most of the day in bed. My house doesnt get cleaned as much as I would like - my husband doesnt do as much around the house as I would like him to and it is very frustrating. He is also not a "Mr. Fix It," kind of person. Since I have quit work and on disability and for once, since I was 16 years old, I can stay at home and not work and still contribute to my family financially without feeling guilty. With me, regardless, there is a certain amount of guilt that comes with having to be on disability after working all of my life, enjoying helping people, being around people and having to resort to disability because of IC but it was a have to situation. After going through the depression part of not being able to work I have settled in to being comfortable being at home and feel so much better that I dont have the stress of everyday work to deal with, dont have to go anywhere if I dont feel like it, can sleep in when I am up all night in the bathroom, etc. and it has definately helped my IC - just being able to rest and put my feet up. BUT-my husband said here recently "it is hard to think that you ever worked," meaning working and keeping house at the same time. I just cant do it, cant keep the house clean, cook meals, laundry, etc. like I did before. Pain pills get me through the day and keep me out of bed most days and I am so thankful that I have an understanding doctor that will prescribe them for me. My son has been more suppotive than my husband, he is in college but is still living at home and he does chores around the house and helps out all that he can. It is just frustrating when you cant do it yourself and everybody else is sitting on their butts not doing anything (mine pet peeve is the news and weather channel). How many times do you have to watch Headline News when they do the same recaps ever 15 minutes, "did we not listen to this like 15 times today already," and "dont we know the the weather is going to be clear tomorrow since we have watched this over again for the last 1 1/2 hour?" I think that my husband thinks that since I am not working now that I should be able to keep the house clean, cook the meals. Does he not see the heating pad, the TENS unit, the catheter that I have to do every four hours, does he not see the pain? How do you get them to understand that you need help? I have told him that he is going to have to start helping out more around the house - I get nowhere, it either doesnt get done or I putter around and do a little at time but mostly rely on my son to help me and he has college stuff to do. Any advise? I took him to the urologists office twice with me, I thought about having my family physician talk to him I just dont know. It is like "you are at home all day long now, surely you can get some of these things done. Our friends have gotten a little upset about us not showing up at events because I didnt feel good. He is free to go if he wants to, I dont care but if I dont feel good I dont go. I also worry about our future, will at some point will he get aggrivated at me being sick and leave? We have talked about the "sickness & in health" part of our wedding vows and he has promised that he will stick by me but you wonder how much your relationship can take. I feel bad that I cant do things like I used to but it is not my fault but then sometimes I feel like I am giving in to IC but it is so damned frustating. I have a very large circle of friends and a large loving family so I have alot of support. My family physician is also very supportive, I thought about talking to him about this. I know that there are alot of you going through the same thing. Any hints on how to get some more support around the house, etc. I would appreciate any comments. Susan

[ic-debra]

You say "not inimate" for a year, where I presume you mean "no intercourse." Intimacy does not equal intercourse, and intercourse does not equal inimacy, it is only one aspect. There are many ways to be intimate. Some involve sex, while others do not. There are also sexual alternatives to intercourse.

[Pain_Man]

Jess_214:

Your dilemma is one that also exists in my marriage. For health reasons, my wife cannot often be intimate with me--and that's on top of my IC issues which sometimes prevents me when she's able.

She suffers from severe hormone fluctuations; I'm sure every woman who has knows exactly what that means.

IC or not, I'm still a man. As one of my mentors often reminds me: "[Men are] dogs by birth; gentlemen by breeding." In other words, we have to learn how to behave and women are generally our teachers in this. A hundred years of feminist wishful thinking can't erase a million years of genetic programming.

But we men aren't slaves to lust. We can control ourselves.

I love my wife and I don't want to be with ANYone else. We have all the time in the world for intimacy. She gets more beautiful by the day--especially with what MY damned disease has cost HER.

As you all know, it's not just us that have IC; our families do too. It's almost as if this disease is driven by an malignant force; as though it enjoys taking pieces of our lives and consuming them--if we let it. It seems to suck in everyone we care because of the incapacity it inflicts on us and the added burdens it places on our partners/spouses.

When I was younger and sex was one my brain every 18 billionths of a second, I used to think I had to have it regularly or... Well, I don't know what follows or, but it seemed so much more important in my earlier twenties.

My first marriage was overflowing with intimacy and it failed like Michael Jordan at baseball: badly. But the intimacy was constant.

My present marriage is so much better than the first that I simply do not CARE if the intimacy is where I'd like it to be; men and women view it--especially fertile women--from a fundamentally different perspective. And that can't be changed.

It sounds as if your husband "gets it." Marriage/relationships are huge, complicated, unwieldy, exhausting, wonderous, amazing, astounding things. Sex is just one part of it. It's true that it has to be a match; if you don't find someone attractive you never will.

But in a true marriage of soul mates or true partners there is a level that's reached where things like sex are really ephemeral. There will be other times. And, from personal experience, when it's not as frequent as we'd like, it's all the better when it does happen.

I don't know how IC affects women in the intimacy department; I know what it does to men. Don't worry, I'm not going to go clinical or scatological here. This is, after all, a family board. It can be excruciatingly painful.

Anyone who really, truly loves you would never accept a "sacrifice" that would cause you agony. Such a person couldn't really love you if they can accept suffering in order to satisfy him or herself.

I know so many guys that treat their wives/girlfriends very badly in this department. Too many think it's a "right." It's a gift, a wonderful, beautiful gift. And when it's "right" it's one of the few things in life that is better waited for than hurried.

PM