Sex, Intimacy and Crohns-issues and tissues

[cagfire]

As a 23 year old newly married and newly diagnosed woman in 1987, crohns had a huge impact on my life for some time. It took over a year to become comfortable with my disease, my body and I had a very patient and loving husband who dealt with this by just being there and supporting me. I couldn't have sex with my husband during this time. I just kept thinking how 'dirty' I was with this disease. How could anyone ever want to have an intimate relationship with me?

Sex and intimacy can be difficult issues to deal with when you're young and active and I was wondering if others had found ways to deal with this.

Talking about it openly and honestly is the best thing to do, so if anyone has questions or wants to add their two cents worth, go for it. The more open and honest discussions get about how people cope with their own illness the better. And everyone has crohns in a different way.

Here's another admission (I'm full of them!!!)...at 42 I can't kiss my husband. Freaky as that sounds it's true. When we were going out for the first two years, he'd always push me away saying I had bad breath. This, we found out after diagnosis, was caused by the crohns, but I haven't ever been able to get over it. It scarred me emotionally and I've never been able to kiss him since. Emotional damage can be far more devastating than physical scars.

See...sometimes it's the little things we don't talk about, or are embarrassed to admit, that make the biggest impacts on our lives.

Lisa

 

[ReeRee]

sometimes it's the little things we don't talk about, or are embarrassed to admit, that make the biggest impacts on our lives.

That sure is true!! I've had my own issues with this subject. Niether of my husbands were very sensitive to my concerned or medical needs or my feelings about intimacy as far as that goes. After them,, not 1 of the next 3 boyfriends I had were any better. The guy I'm seeing now seems to be different.

The blunt truth for me is, it HURTS to have sex when I'm having a flare up, and it will often kick off a very bad episode from the trauma to my belly.

I could get more into details if anybody has any questions about this sort of things.

I'm glad you brought this up tho. These are just a few of the things Crohnies are afraid or too embarrassed to talk about.

 

[cagfire]

not backward in coming forward

The blunt truth for me is, it HURTS to have sex when I'm having a flare up, and it will often kick off a very bad episode from the trauma to my belly.

I could get more into details if anybody has any questions about this sort of things.

I'm glad you brought this up tho. These are just a few of the things Crohnies are afraid or too embarrassed to talk about.[/QUOTE]

I've never been afraid to talk about these things now that I've gotten older. I tend to shock a few people when I did go to support groups. Nobody talks about these sorts of issues and they are so critical to developing a healthy attitude towards what can be a very frustrating and debilitating illness.

In the passions of lust and youth I used to just ignore the pain...but not anymore.

If you are in a relationship there is nothing shittier (pardon the intended pun) than having to say the same thing every ******* time...hey, don't do that it hurts that way, or can you do this, or that, etc. And if someone doesn't understand you tend to shut down the emotional responses and that can make it worse.

PEOPLE WITH CROHNS HAVE SEX TOO!

 

[ReeRee]

Yes we do and if done correctly, it can be very nice..lol. I also have a colostomy and that makes doing the deed very awkward, but we've found ways... What I really hate is having to say in the middle of it, "hold that thought, I gotta doodie". It can be a real mood killer..lol. But what are we supposed to do?

 

[cookey]

Hi Lisa, you really raised a good point here. I personally had the same problems in the beginning. The men I was meeting just couldnt understand my situation. I think personally, it's a matter of meeting the right individual..one who will except all our little ailments that come along with having Crohns, like bad breath. This is something that we really shouldnt be afraid or embarassed about, after all, we didnt ask to be this way...but I certainly do understand what your saying. My motto is, take me as I am..because I'm this way for life. My husband came along, and it didnt matter one bit..that I had a bag, or couldnt have sex on certain days etc... In the end, this is our life...and our partners should except it. My opinion only of course.

 

[ReeRee]

Well said Deb! That's the way I look at it too. The guy I'm with now seems to "get it". But I thought that about the last one too, then after 3 years, he just lost his mind and couldn't handle it anymore. So I'm just kinda hanging with this one to see how it turns out.

 

[cagfire]

I'd also like to hear about this from a guys perspective. I'm lucky that I don't have a bag and I married a guy who was very supportive and we're still together.

These are serious issues and we do have to learn your mantra of 'take me as I am cause I'm not gonna change'! It's kind of like 'a puppy is more than for christmas'...lol.

I guess I got lucky early on. Some things I shrugged off, others left their mark on my pysche forever.

"Strong minds, strong women, great minds, great women!"

Lisa

 

[Mozam]

Ladies, you're looking for a guys perspective on this I understand?

I had my ileostomy done when I was 17 years old - and being a guy my first thought was "who in the hell would want to sleep with me with THAT??!" The one thing that ahs been the difference for me is actually confidence. I don't want to sound as if I'm bragging o egotisical, but I haven't really had any problems in the sex department - my first partner was my first love - I was 20, she was 17, we were together for 2 and a half years. Sex was alway good, spontaneous, relaxed - my ileostomy never got in the way, if you pardon the expression. I've also had one night stands, which I NEVER thought would be possible. Almost always the thing that the girls say in the morning is "it must have taken a lot of guts for you to be with me, and to show me your bag etc" - they always also seemed to feel special, because they'd made me feel confident enough to go through with it.

I guess the thing to remember - and this goes for guys and girls, whether or not they have scars, stomas, prosthetic limbs, whatever - is that you're prospective bed partner will ALMOST certainly have SOME kind of hang up about their body too. And also, remember - if they have a real problem with ANYTHING that maye be slightly different about your body, they're not worth wasting your time over.

Sex is something that should be intimate, enjoyable, relaxing, intense, all those things - but most of all, it should be FUN. This ****** disease is a pain, I know - but don't let it get in the way of everything we should be enjoying, that's what I say.

 

[Donna]

When I was first diagnosed, I was only married for 19 days. I had also given birth to our son almost 5 months earlier. We suffered thru being pregnant and the disease. But during the last 2 months of my pregnancy, I could no longer have sex...mainly because of the 10+ pound watermelon in the way, but also because I was embarrassed. Any kind of pressure, as in sneezing or coughing, would make my crap myself while I was pregnant. So it was not something I wanted to do when I was at that...um..umm...point of no return.

Then I was diagnosed, and things settled down and we worked around the symptoms. There are days when I cannot tolerate any touch to my belly, and most days, I have little enough energy to start anything. Now my worst fear is a bag. I don't have one yet, but know its coming in time. I am lucky that my hubby loves me for who I am and not what I look like. He swears it wont change, other than what positions we may use or what not.

I guess honesty and openess with your partner is the best policy. And time does tend to make you more comfortable with body changes.

Mozam, I liked your perspective alot. You do seem very comfortable with yourself, and that is fantastic.

It would be neat to hear from spouses/partners of people with bags/problems/symptoms etc. Get the "other half's" perspectives.

 

[Kossy]

Ron doesn't have sex... he makes a love.
I've never had a problem with "the sexin" because of my Crohn's. I do sometimes have a hard time with my ileostomy. It's more of a mental thing. More of less it's just a mood killer for me. I try not to let it get to me but sometimes it does.. It sucks but I get through it.

 

[ReeRee]

Mozam, Will you marry me? LOL. Why can't I seem to find a man who thinks like you do? Maybe I need to find one with his own "baggage", so to speak.

Mostly, I feel much like Kossy feels most of the time. It's there, I can't help it, I try to move ahead anyway, but it's a mood killer and I can't seem to get past that. When I do get intimate with someone, I won't let them see the bag. I make them not look until I have it and my whole midsection covered with a towel...which sux because most of what turns me on is skin touching skin and being close with the one I'm with.

For the most part, I've never had a guy turn around and walk off after I've told them and they've all been gentle and kind and it usually has turned out ok. But I find I can't enjoy it as fully as I used to because of the constant worry of "will it leak, will it pop, etc.". The guy I'm seeing now has never seen me naked and we've been together for 1 year and 4 months.

 

[Kate]

I have major issues with sex and they put it down to my crohns. I have absolutly no libido and it makes my marrige really hard. At first when i started my realtionship with my husband i had just goten crohns (unkowen to me) and i still had a libido if not a huge one, and as time went by my libido decreased to nothing. It dosnt matter if im in a flare or not i just never want it. My husband sometimes tries to tellme i dont love him but i do. The thing that makes it hard was the fact that it all started at 16 so i dont know for sure if this is how i am or if this is my illness as i was a virgin when i met him. I dont know what to do about it and it makes me sad that i cant be normal about sex.

 

[Donna]

Aww, Kate, that's sad. Unfortunatly, so many people put sex as a price tag on their love for another. Your hubby should realize that this disease isn't some glamorous thing either, and it could make you not want it anyway.

I know that most of us Crohnies are on enough meds and don't want to take anymore, but there are meds out there that could help you get a libido going....you might want to discuss that with your doc.

Ree Ree, see that's what I am afraid of if I need a bag. I don't want to hide myself, or feel self-contious of it either. It is scary. And it sucks that it makes you feel that way. Hopefully, the day your boyfriend sees your hiney naked, he will love you for who you are and will accept it too.

 

[ReeRee]

he will love you for who you are and will accept it too

Oh he's fine with it...lol. It's ME with the hangup...hahah.

 

[Kate]

I know that most of us Crohnies are on enough meds and don't want to take anymore, but there are meds out there that could help you get a libido going....you might want to discuss that with your doc.

I have spoken to my dr about it but they want me to try therapy before going the meds direction yet im hessitant to go to a therapist becuase i dont see how that can help.... although ive been told that others with crohns see then in nz and it seems to work???? oh well ill see what i can do.

Aww, Kate, that's sad. Unfortunatly, so many people put sex as a price tag on their love for another. Your hubby should realize that this disease isn't some glamorous thing either, and it could make you not want it anyway

He knows and for the most he tries to understand but it gets hard for him to deal with thats all.

 

[Donna]

I have spoken to my dr about it but they want me to try therapy before going the meds direction yet im hessitant to go to a therapist becuase i dont see how that can help.... although ive been told that others with crohns see then in nz and it seems to work???? oh well ill see what i can do.

Well, first off, they would be able to help you "understand" your disease in a different perspective...the emotional one. You would learn techniques to put aside the daily stress that comes from this disease...and you would learn how to cope. And, it would also be beneficial for your hubby to tag along once in awhile so he too can learn how to cope with things on his side.

Therapy is good, especially when one is dealing with a chronic illness. It isn't for everyone, and you kind of have to be open minded about it when you go. Bottling things up when you go wont work. I would try it and see...if it isn't for you, at least you can say you tried.