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UC 2007-2011 J pouch sergery Jan 2011 drop down in april 2011 Developed comunication between small intestins
and blader June bag again in july last drop down Feb 2012 last of 10 sergerys.Have been dealing with pouchitis since did fig and cip works for a while now on vsl-3 ds fell better. Stil 10-15 bm per day
broken sleep fever sometimes.Some days good some days not as good .Realy dont need to exsplain to you .From reading the post it all seems to comin. My isue is with getting my wife to understand all of this i feel that see is in denile see dose not understand why i dont fell good or why dont i just get the bag. I know that
dealing with this is just as hard on our spouces as it is us sometimes i need to find some kind of suport group for her. My kids deal with it well.Im dealing with it best i can
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Have her read the posts on here or to post something herself...there are a lot of spouses on this site who ask for help to be able to better understand...not sure if she would be open to this idea but it could be a good first approach...she can pick her own 'name' and ask questions anonomously if she likes or doesn't wish to be recognised by you.
It was hard for my wife to understand when I was struggling with UC and even harder for her to understand now. She thinks now that I'm about 7 months post takedown I should be all better. She can't understand why I still have bad days or what they entail. I try to explain it to her but she doesn't get it
Its hard especially when the closest person to you doesn't understand. I tell her to do some research on it but she won't she feels like she doesn't have the time. I have her going to couples therapy and the lady that does my therapy have played the role and the caregiver and husband has had brain surgery so she can better help my wife understand whats going on.
I've asked my husband to read articles before and forwarded them. I found out I need to print them out and specifically highlight the important areas for him and sometimes sit down with him while he reads them to get him to read them. I don't understand why. If it were him I'd be researching everything on my own. that's just the way we are. He also forget things and I need to remind him.

I have several medical problems so I try not to walk around with the daily medical report detailing all of my pains and problems. I have begun to give him the daily highlights because he has become less understanding the last 6 months or so.

It is hard for them I suppose as there really isn't much they can do to make us feel better. I wonder why it bothers him so much as it's not like he has to do anything for me. I'm not an invalid. He does all the grocery shopping but did most of it before and he also does most of the cooking and I don't eat most of the things he cooks. I don't do as much housework but I think it just basically just sits until I get around to doing it. He retired early and does whatever he wants, whenever he wants so he has a non-demanding life. He said he misses doing things with me, big news flash - we mostly camped and he's the one that sold our old RV.

Now if we were laying around all day getting drunk, running up bills on the home shopping network, gambling, getting drunk, etc. things would be different. We aren't lazy we are ill.

Hopefully you don't have as many health problems as I do and are still able to work and do more than I can.
We tend to place a harsh burden on ourselves. Dark thoughts that our relationship issues are caused by our illness, so we are to blame as "damaged goods."

From the cold sociological/biological standpoint, our relationships have to overcome evolutionary hard-wiring which makes most humans (most animals in general) seek out healthy mates.

You'd be surprised how close we are to our primitive ancestors in many things, even though we look at ourselves as enlightened and above the animals.

That can seem like depressing information, but I choose to see it as useful information, which gives me room to address the issue from a different standpoint than "he doesn't care anymore because he doesn't love me anymore."

Knowing that it's not that can lift a burden, and allows me to strategise a response tailored to it. Like planning a "spontaneous" camping trip that was modified.... to a KOA campground with cabins that have toilets, and short trips to events (concets, etc) that yes, involve trips to portable toilets that aren't pleasant for us, but we can live through it. Even went tent camping, and chose a campsite near a restroom. I used it several times during the night, but otherwise had a good time, and made sure my partner had a good time and joined him fishing and doing those things he enjoys.

I find if I apply myself, I can set up activities that are very close to prior activities, but are pre-planned to leave me positioned near a bathroom at all times, and maybe not quite as active.

Creating a shared interest in football and joining a local Green Bay Packers fan club has helped a lot to add a non-illness dimension.

So be pro-active, and look at it as outsmarting the neanderthal part of your spouse's brain by creating (from their perspective) illness-free experiences that help balance out those days where we can't function like we would like to.


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