before we got married I explained to him about my condition. It was a lot better back then but hey if you have an illness does that not mean you are likely to have more problems. I have tried to explain that its not just going to the bathroom and because of all the other I can not act quickly on anything. I will make mistakes if I don't take more time to think. then because of the way I am if I am forced into making a quick decision it affects me so much more than it does some people. It keeps going over and over in my mind. I have asked him to try to take care of things but he is like I use to be. trust everything anybody says and does not look into it before doing stuff. I am danged if I do it and danged if I don't b/c he does not like to ask questions. All I know is that I am at the end of my rope. I have been over and over this so many times and don't feel I can handle anymore. Just went through something I think we made a big mistake. he said well you can blame yourself for this one but when we discussed it he said no don't do it for a reason before but I explained to him it wouldn't work out so I feel he should of said I still don't think we should do. I am not sure you can understand the last part. gotta go and bet you can't quess where I am headed!!!!!

Sounds like your husband is a guy!
My best friend and I have the same conversation over and over again on exactly the same subject...and she is perfectly healthy and so is he...Men are just built differently than we are, do things differently and act/react differently...nothing at all to do with pouches, U/C, disease etc...it just is. This in NOT a pouch problem but a Venus/Mars problem. (not that you can't vent about that too...)
My hubby can buy a car, T.V., or redo the bathroom in 6 minutes, just the time needed to pull his wallet out of his pocket and sign...I need 2 weeks of comparison, reflexion, torture and suffering to decide to change our toilet paper brand...and then I guilt out about the price/quality ratio. If hubby makes a $1000 mistake, so be it, if I screw up the salade then I will suffer for the week (guilt).
Not at all related to our disease, just our sex.
This is not sexist of pejorative, just simple...They are/were the hunters, ready to make the quick decision while being chased by the dinasaure, we were the gatherers, planting seeds and nurturing them while decorating our caves and raising the kids & trying to prevent them from being eaten by a t-rex...Responsibility verses consequenses.
Give hubby a copy of Venus and Mars and see if that helps.
Sharon
ps. Yes, our illness/disease makes us more sensitive to the consequences of each and every one of our acts and that can aggravate the situation and our feelings about it.

Sounds you've had a hard time of it, kk. I'm not going to use gender stereotypes, partly because I don't believe in them, and partly because I'm a guy myself, so where would that put myself? ;-) I would agree though that we're all different, and no-one can feel what you're feeling. It's impossible for him (or anyone) to understand what you've been through with your illness, because every case is so completely unique to that person. It's hard enough for another j-poucher to understand, but at least we can sympathise!

The only thing that is ever going to help is communication about your illness and your needs. Sounds like you're doing that already though, so keep persevering - if you love each other then you'll find a way through. x

I probably will get blasted for this, but here goes:

After dealing with UC most of my life, I have learned (or decided) not to use my disease as a reason or excuse for inadequacies. Sure, I will say, I can't do what you want me to do because I am physically not capable. But, once I make a choice, the aftermath, whether it is fallout or windfall is mine by conscious decision. If I make a mistake, I beg forgiveness. If it works out well, I take the credit. In my household that seems to work. We have our occasional blow-ups, usually over something stupid and unimportant.

My husband complains sometimes that I am non-committal. I prefer to say that I never make promises I can't keep. It frustrates me when people say they will do something, then bail out because they bit off more than they could chew. So, rather than agreeing to do things, I just say I will try my best.

And understanding goes both ways. Even though you are the one who is ill, understanding the pressures of the one who is required to be on the job day in and out can help smooth rough waters. Although, I can tend to bristle when I get the "I've been toiling all day in the salt mines and you've been laying around eating bon bons" diatribe. I guess it is true, the adage, A man may work from sun to sun, but a woman's work is NEVER done!

Jan

kk and Sharon - I must be the male in the relationship. I hate spending time on things. I hate shopping (and I still call myself a woman?). If I need something online and I find what I want I usually don't do much comparison shopping. It would drive me crazy.

Now DAMN BRIAN on the other hand.... He wants a new pair of sunglasses? He starts researching. And then he starts comparison shopping. And then he looks at reviews. And then he does more. More researching, comparison, shopping, review perusing. I can't even remember how long it took him to get those damn glasses. His retinas were probably seared from the sun before he got them.

I much prefer to whip out the checkbook and get it done now. DAMN BRIAN prefers to spend the time doing it himself. And god/dess love him, he's a perfectionist so whatever he does always turns out - like - perfect.

I also agree with Jan, it's very frustrating for someone to say they will and then they don't. I am rather anal compulsive about that. If I say I'm doing it, it will get done. If I say it will be done by a certain time, it's done by that time. The architects and engineers I work with always give false due dates because no one ever gets anything done on time. They've learned that they can give me the real due date because I'm never EVER late.

Regarding anyone ever understanding what you are going through, like everyone said, it takes one to know one. The only people who have an inkling about what I go through are those who have a pouch or have a chronic or life-threatening condition or those who are extremely empathetic. And there aren't many of the extremely empathetic. So I just don't talk about it. DAMN BRIAN knows when I'm having a bad day because I tell him it's a bad day. If that doesn't sink in, he usually notices that I'm having a bad day when he notices his head lolling on the ground after I've bitten it off.

Could you and your husband see a therapist? A therapist who is knowledgeable about chronic illness would be good. Even if your husband doesn't go, it would be good for you to talk with someone.

kathy

So true Kathy, so true. My brain is seared with the image of Damn Brian's head rolling on the ground.

Sue

Love the head lolling on the ground image Kathy! Made me giggle...although I usually think of my hubby's on a spike! (our poor, poor guys...let us all bow our heads and pray for them.... )...NO, Kathy, you are not 'the guy' but the efficient woman in the couple...I used to be easily the defacto decision maker and I was good at it...now I am just full of guilt/worry about every little decision that I make because if I screw it up, I hear about it for 16 years but if I get it right "head on the spike" takes all the credit!
What can you do? You gota love them or you would kill them
Sharon

It long so if you don't want to read don't but it helped me to type it. I am rambling on but atleast I got it out. Up until the last year or so even when I worked I was the one to figure out everything even things he needs like vitamins or food he only eats. then I though the heck with that he is a grown man. If he can't tell me what he needs when I ask he can do without. I always do what I say I am going to. It really makes me mad when people don't. I am a perfectionist. I don't use my healh as a cop out so not sure what you were saying Jan but it is frustrating when I have realized it takes me more time now to make sensible decisions and I know if I make quick one I will regret it. All I ask if for people to understand that. If they go one night without sleep you would think they were dying. when having my last surgery the day I came home and wanted to do for myself if I couldn't do it right then I would wait. My husband didn't tell me but I overheard him telling his mom that he couldn't believe how well I was doing that he didn't realize they cut me so much. one time from having a test done and put to sleep I couldn't urninate so husband had to take me emergency room. He asked the doctor was he sure that was all that was wrong with me. LIked the dr. answer which was if you were that full and couldn't get it out you would be in lots of pain. I know he works hard and I appreciate that but he still has to realize I am affected more than just trips to the bathroom. I use a towel so I won't soil the sheets and he will say you don't need a towel. how in the heck does he know when I don't even know if I will have an accident. A spouse does need to understand that all things are different with their spouse that has to deal with poo all the time. My last surgery I said I am going to be on pain pills and getting off of them so I will probably need you to pay the bills during this time. Even wrote it all down for him. do you think he asked if he needed to do it later. said he did the bills when married before so why didn't he help me out. I have been to a couselor that is suppose to understand people with illness but didn't appear she did and I am tired of talking to people.

Kk,
You have said it, you are a perfectionist, keep your word and your promises, are stong and an 'overachiever'...you push yourself when you shouldn't (don't we all) and you take control of situations...you plan things in advance and know how to make provisions for emergency situations...that is one heck of a resume...
Maybe it is because we are/were sick and learn how fragile life and the future is or maybe it is just who we are but I find that generally we are (or just have to be) very organised.
When we wed we promise to love, honor and obey...there is nothing said about empathy, compassion and understanding...and the til death do you part says absolutely nothing about illness, U/C and pouches...I have found that the only way to get my hubby to understand is to sabotage his preparation H with chilly pepper sauce and then put sand paper into the toilet paper holder.
He cannot, will not, shall not ever understand that post-op I cannot pick anything up off of the floor, bend down to find my slippers or reach up to pull down the shades...nor can he get the blue pads on the bed (between the mattress and the mattress pad, between the pad and the sheet and between me and the sheet when I am post op...paranoid? you bet!) And so he shouldn't...he lives in a blissful cotton world where the worst thing that happens is a speeding ticket, hemmoroids or a bad cold.
Not his fault. I just have to find ways to communicate what I feel better or accept that he is colour blind when it comes to illness and all of its side effects.
Sharon

quote:

because of all the other I can not act quickly on anything

Sorry kk, didn't mean to imply that you use your illness as a cop out. The above comment made me think that it is because of your illness you were not performing as your husband expects. From what you wrote it seemed like you were not functioning well, and since you were not specific about what was going on that was causing strife, I just blabbed on about how I have managed- basically just letting my husband know what I can and cannot do. It is in flux all the time.

Obviously, we can't fix your marriage. But we can listen and try to understand. Maybe things are just in a rough patch now. Hopefully, you guys can communicate better so that he understands you better. It seems like you are speaking different languages.

Jan

Hi kk,

Guys are dinks. I know, I am one. My poor wife suffers more than I do. There is nothing she can to do help.

My guess is that you are pregnant. Again, I am a dink guy so forgive me if I am wrong.

Stress in a relationship comes in many forms, money, health, kids etc.

It doesn't matter how much advice you get from all of us, in the end, you will have to decide what is best for you.

It comes down to teamwork, husband and wife. My Prayers are with you.

God Bless,

Markus