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Help!  I am just about 8 weeks post learning of my partner's affair, which she attributes to the lack of intimacy and comfort in our marriage.   We are a lesbian couple who have been together for 17 years, 12 of which are post my diagnosis of severe ulcerative colitis, j-pouch, stricture/fissure/incontinence, a Chron's diagnosis,  and the onset of transverse myelitis as a rare side effect following Remicade use early on.  Our intimacy has suffered greatly, but in spite of it we registered as domestic partners when that opportunity became legal in our state, and we married when our state passed same-sex marriage.   Her affair began in April and ended when I learned of it via a Facebook chat she left open. 

I am wondering if anyone else has experienced relationship break-down following their illness/surgeries.  I would also like to know if you powered through it, how you did it. 

On top of chronic pain and a terribly disrupted life, now I have this to deal with.  And if we are able to reconcile, I desperately want to figure out how to bring physical closeness back into our life. 

Can anyone help me? 

Last edited by Debra
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Hi Debra,

I am so sorry for everything that you have had to go through plus the collateral damage to your couple.

Yes, this disease plus all of the annex illnesses that come along with it do a number on your couple.

My hubby married me right in the middle of my last series of a dozen surgeries (a 10yr period) after having known me for 15yrs...I figured that our couple was bullit-proof.

(We had had problems but not along the same lines)

No couple is. We went through something bad enough to shake us to the bone...and he blamed my illness, surgeries and body for it all. (they make a really easy scapegoat for all marital ills...great excuse to take pot-shots at us). I did not think that we would survive.

It has been exactly 1 yr since then...and we had a huge Thanksgiving diner here with all of our friends and family...hubby glowing proudly telling all who would listen how wonder his wife is. (who'd-a-thunk a year ago that we would still be together?) How proud he is of me etc...

I think that I understand it a bit (not condone it though)...first off, all marriages can fall off the edge, next we put undue stress on ours (forget the 'sickness & health' bit...everyone only thinks about the health part) and our partners get pretty sick of us being so sick.

Then once they do something stupid (revenge? boredom?) they leave a trail behind them for us to follow and suddenly there is an explosion, conflict and open conversation (if you hang in that long)...things will be said that were never said before...we opened up a lot and not always in a good way but survived...crawled our way back...This summer he was hospitalized for 2 months and got a little peak at what it felt like...a real eye opener for him and us...I don't know if all of this made us 'stronger' (psyco-babble BS) but we do understand each other better now.

I asked myself only 2 questions while I was going through it...Do you still love him and can you forgive? Once I answered yes to both of them I knew what I had to do.

Sharon

Sharon, thank you!  They say your digestive system shuts down under great stress . . . I believe it.  I have to force myself to eat. 

I feel so lost and alone. 

Going into summer i encouraged her once again to get out, go fishing, or hiking or biking.  and then she used that to hide her affair.  The most painful part is that I am now pretty clear on why she did it; after tonight she made that pretty evident.  She said she turned to her ex because she missed being close, feeling comfort.  What?????  And what about me?   

We went back to Mt. Rainier on our first anniversary, to where we got married last year.  I wanted to try a short hike, but less than 50 paces in I felt a spasm and my j-pouch emptying (I wear protective pads.)  By the time I got to the restroom, cleaned up, and changed underwear, I was hysterical.  Twenty years ago I climbed Rainier, and now I can't even leave the vicinity of a restroom.   We even had to abandon our dinner plans on the way home ... at the place where we got married and had our wedding feast with my family.  I have come to find out my wife took her ex out to eat the day before and the day after.  In fact, they saw each other more during the week before and the week following our anniversary than in any other month.  They did not have sex, but they crossed that infidelity barrier ... because my wife needed to feel closeness, comfort, and her ex was ready and willing to provide it!  Meanwhile, I need those things too, but it is hard to maintain a position for very long due to both my cranky pouch and my damaged nerves. 

I may have to add a cardiologist to my medical team, because my heart is truly breaking.  She is the type that goes cold and quiet when she is hurting, which I know she is.  But for some reason she is unable to give me the hugs, the comfort, the compassionate touch that she gave and got from her ex.  I feel so shorted on this deal. 

Thanks for reaching out.  Holidays find less activity on support forums like ours, and I truly felt like an astronaut whose lifeline just snapped and I am floating in space . . .

Debra,

She is being a lousy wife...begining, middle and end of story.

Not all of us are cracked up to be perfect spouses and most of us believe that we are 'better than all of them' but...the truth is that no one knows what they will be like when it the same situation. (I felt so noble...and injured)

The reality is that life makes it so easy to cheat on those that love them...And not feel guilty. Self-justification. "she is too sick to understand me" ..."Too self absorbed in her illness"..."too busy being being sick to take care of me"...it is all just an excuse for cruel and inadmissable behavior.

When we get ill (and it isn't like a flu or a short-lived disease..we get the life-long illness with the non-noble side effects...nothing romantic about dirtying yourself or bleeding out on the bowel) we know when it starts but not when it finishes...if ever...and they need numbers...you will be sick 3 days/month or 2 months/year or heal in a week...not 'this is my new normal'...They cannot take it.

They are babies...they need us but do not want us to need them...

So now, you have to decide...if you were not ill, if you were not sick and weak as a kitten...if you were 'you' again...Would you put up with this crap? Do not allow your disease to strip you of your dignity too. Be yourself...yell, scream, argue and fight like you were healthy...Do not allow her to put your health situation on the table as if that excuses her behaviour...there is No excuse. You are still you and deserve full love, fidelity and respect.

I warned my hubby...I have been throught the mill 1000xs...I have suffered more than most people do in a lifetime or 10...so I will not accept any more suffering...I deserve more love, not less...more respect, not less and a whole bucket load more joy, happiness and warmth...if he could not give it to me then he could leave...(almost did)...

Stand up for yourself...do not melt...she either loves and respects you or else (yup...there is always an 'or else')...and stay strong.

Sharon

 

My heart goes out to you Debra.  There's a lot to negotiate in a relationship even without health issues.  Throw a j-pouch, and/or other health challenges, into the mix and it really can make things challenging.   My health has taken a big toll on my relationship at times.  For me, mainly lack of energy, sexual intimacy, and finances have really been impacted.  Fatigue makes it impossible for us to do the things we love together (hiking, exploring), which are things that have brought a lot of health into our relationship in the past and gotten us through stressful times.  And sex is the last thing on my mind when I have really limited energy and am just trying to figure out how to make it through my day.  (There is another recent thread about the impact of j-pouches on relationships where I go into much more detail on how these things have impacted us and  how my j-pouch has impacted my sexual health and function).  And boy howdy! Do I know the frustration of looking at a fantastic PNW trail (I'm in Bellingham), knowing I've done it before, and the heartbreak of not being able to do it now!  I have an ongoing open question wondering how to handle the fact that my sexual function/drive has been so diminished and my husband has a very healthy drive.  As I stated in my post in the other thread, he's given up a lot to be with me...from financial security because my health is so unstable, to having children, along with other things.  He has pretty much given up a healthy, active, sexual life for a very long time,  but it's a struggle for him. How much does he have to give up? He cares for me very much and wants to be with me, not anyone else, but the reality is things are more complicated because of my health.  I have a lot of issues with sexual health (pain, skin breakdown, ointment, leakage, etc).  So, what's a good solution?  Open relationship?  Divorce?  I don't think there is a good solution.   For now, we are working with the reality of where we're at, trying not to shove our issues under the rug pretending like they don't exist, and being very honest and open and compassionate to how we are both impacted by my health (not just me), and we'll see what comes.  We both need to be willing to have difficult conversations on occasion, and try to find new ways to bond being that I'm not longer active.  Our story may or may not end together, but hopefully there will still be honesty and love in it.  If one of us didn't communicate or wasn't willing to sit through difficult conversations, we didn't work to understand and see the impact on the other person, and physical affection was gone, it would make things much, much more difficult. 

I can really relate to your statement of feeling like an astronaut in space with the only lifeline cut.  We've had some phases like this that have left me terrified. Gratefully we've worked through them and have grown closer and more loving from the process of it, and looking for the roots of our issues, including my health but also beyond.  ("Grown closer" doesn't necessarily mean we'll stay together. ) 

A skilled counselor helps.  Each individually, and as a couple.  

Wishing you all good things.

Nikiki,

You hit the nail on the head...Getting close does not mean staying together.

Some relationships are doomed to end, not because of lack of love but because we cannot make it through the dark years, or compromise, or are in the wrong place...or the other person is impatient, egocentric, selfish or just not ready to give up on a huge chunk of their lives (sex, sports, travel...depending on your particular pouch problem).

Mine sort of had to put a lot of those things on a shelf for a very long time (the dark years)...from the year after we got married until our 6th wedding anniversary I was mostly out of commission. Sporadic good times, a lot of hidden pain and huge sacrafices on my part...where I overdid it to prove that I was still worthy. Birthday parties for the kids with 18-30 guests, halloween parties, dinner parties...all requiring me to shop, cook and stand for hours on end (I couldn't go out to work so I thought that that was my contribution to 'normal') to prepare 7 course gourmet meals (as if it really mattered or they cared!)...I did myself more harm than good...and probably prolonged the agony uselessly.

We survived along with my pouch but it shook us to the core and nearly destroyed me, my body and my sanity. I cannot say that we are stronger for it (I am not that romantic) but I will say that I am shocked that we are still together and that he still loves me...

Maybe we are just too old and stubborn to look elsewhere for love...but huge swaths of our life are over...the cuddling is still there, the tickel fights, giggles and all that but the rest is pretty much evaporating...

No, I could not do an open marriage (I did suggest it in the middle of all of the insanity hoping to keep him close but in the end, he refused in spite of the permissions that I offered him )

It is a daily challenge...And he is the challenged one now with rods in his foot and cardiac problems...so although we are not even and I did not wish it on him, he understands me better and is less demanding or critical.

Life goes on.

Sharon

I am so sorry you are going through this.  I think all the advice above is good.  I am a retired counselor. If you can, find yourself a good counselor pronto.  If not for you both, for yourself.

I went through this with my first husband.  I had the j pouch surgery, then battled infertility, then just as we were ready to adopt, he left me for a 19 year old waitress.  I was 29.  To add to the story, he is a doctor and I had supported him through med school. I didn't get a dime as he was in his residency, thus had not made any money yet.  Those years of my life were hell.  I just could not believe the betrayal.  Of course, as someone older, I now see that many people cannot handle living with someone with chronic illness or j pouch or whatever. They don't have it in them. 

What I did was go back to school at that time (I was a teacher) and got my masters in counseling.  I also got on Prozac after toughing it our for a couple years.  Eventually, I remarried and this marriage is to a teacher and he didn't care if I was infertile and pooped all the time.  He loved me for me.  We've been married 19 years.  That said, I never say never.  He could still leave. I often wonder how he puts up with it - lets face it - it's not pleasant to be around all this pooping.  It's gotta be gross.  He doesn't seem to mind, but I do. I have a bathroom separate from his. 

Regarding intimacy....your situation is difficult.  We were able to have a great sex life for many years, but I didn't let him do a lot of oral sex as I was always worried about leaking.  He was ok with that.  After a hysterectomy and oophorectomy, I couldn't even have sex.  I tried everything - it just hurts too much.  So, it's now blow jobs and vibrators. I'm just being brutally honest.  We are in our 50s and for us it's not so bad, but of course I miss our younger days.  But, I can't change it. So we make the best of it. 

I would imagine after you work through this relationship - whether you stay together or not - you can achieve intimacy again - but it has to be something you can talk about with your partner.  It will be perhaps a different kind of intimacy.  This is what all couples go through as they age.  The ones who stay together adapt to getting older and lower their expectations about sex.  Yes, there are the few you hear who say, "oh, we have sex everyday" in their 70s.  Good for them.  I would imagine they are about 1 percent of the population or are lying.  Jane Fonda wrote a good book about this and she goes into detail about how she and her partner have to do all kinds of different things to have sex in their 70s - she's really into it.  But, it's vibrators, penis pumps, Viagra, etc. - it's not like it was, in other words. 

I believe if you can just push on through for awhile - you will figure out if this relationship is worth keeping. I also believe you can find someone who is older and wiser and is not interested  in having sex like she did in her 20s - but who wants a loving, caring, connected partnership.  In the end, that's what it all really is about.  Our bodies get old, sick, etc. - if a relationship is going to last, we have to adapt and become more spiritual partners than we were when we were younger.  I don't mean this to sound like a lecture and that I know it all - I don't!!  As I said earlier, my wonderful husband could leave me next year.  I often ask why he's stayed - why does he want to put up with this.  The truth - yes, love, but also, we are alike in that we don't want to have to go start all over.  If this woman is not able to be there for you....I know it is hell - I've been there - and it took a long, long time for things to get better - but they did.  I don't believe you can't have a loving relationship again.  It'll be a journey to get there.  All us j pouchers out here are cheering you on. 

nikiki, like you, I felt I knew we had a strong enough foundation to rebuild ... and in fact, maybe build a better and stronger and more realistic marriage.   We are already making good progress with our new marriage therapist.  We have begin work on our physical relationship, and even our social life.  We have taken up a new activity that neither of us had ever done in previous relationships: we are doing wine tastings and shopping for wine.  I now I have to limit alcohol, and I am not a drinker, and it is lucky that I like the sweeter, low % wines.  But it has served to remind us how fun the "new" is . . .

You have all  been very helpful.  I thank everyone who responded.  Yes, my wife did something horrible, but I am not in a situation where I need to leave, or even feel the need to punish her.  She is doing plenty of that herself, as she says every time she looks at me she regrets her stupid choice that hurt me so much.  We have never been into playing games.  She came from that in her relationship with her ex, which is why I was so shocked that that is who she had turned to.  Soon after we met, her ex realized she wanted her back, and put forth quite a display trying.  I asked if she was ready to be in a mature relationship.  She chose me and the mature relationship over the familiar and toxic.  Perhaps this also increased my pain, that she turned back to the one person who never did anything to bring out her better angels.   But I do not have that feeling that all is lost . . . but rather that we have to take this opportunity to overcome, and to thrive.  

Forgiveness can be very liberating. Holding a grudge and anger is exhausting. The trick is really letting it go and moving forward. In any worthwhile relationship there are always mistakes on both sides that makes thing run sideways. Refusing to recognize that just puts walls up. So much better when both sides admit their part, even if unintentional (like being preoccupied with being sick), you can work it out. 

How great that your wife saw her error and is contrite! And, kudos to you for seeing the bigger picture!

Jan

Only the two people who are in the relationship know what is 'really ' going on inside...no one else can or should judge you. 

You love her and she loves you and I figure that that is a very good place to start.

I have never met anyone who has not made a mistake along the way...that is how you know that you are a survivor...being tested.

Do your best...that is all that you can do.  If she does the same then you will never regret your decision.

Sharons

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