OK. I'm coming to you instead of "retail therapy".......

Basically, tomorrow marks the 2 years mark of the disaster that has become my life and I'm feeling sorry for myself (and Dennis). I don't think he even realizes it (and heaven help us if he remembers). I KNOW how much I have to be thankful for and I AM. Other than my mom kind of developing some old age mental issues, my parents are pretty healthy. My kids are EXCELLING (my Asperger's son managed to get himself elected VP of his jr. class of over 900 kids and is planning a PROM of all crazy things). I have love, support, a good job etc. but I miss what used to be that I feel won't be anymore.

Dennis can't really go to many places other than the dr. I'm alone, but not single so I have to con my parents into stuff I want to do that are more 'adult' like wine tastings etc. (Thank GOD they get it and are easy marks!) My friends offer to take me but it's in the 3rd wheel mode. I'm NOT a 3rd wheel. I'm married to a man I LOVE and want US to do stuff together again. The further we go, the more the "realistic" side of me knows this really isn't going to happen even though my glass 1/2 full side won't give up.

Again, I know I'm very lucky. I feel like a real crap monkey when I feel this way. And YES- I'm medicated. I just know that when I take that damn IV pump out of it's hiding place tomorrow for the infusion, I'm going to get even more upset.

Maybe it's friends talking about "normal" holiday plans. Long weekend vacations, cook outs etc. Stuff we used to have.

Any spouses/significant others ever have to come to terms with this and how did you do it? I'm just hoping that come next Tuesday, past the ugly anniversary and the long weekend with us at least together at home (and going to dinner without Dennis to my parents) maybe it will just pass.

jpouch-sis, been thinking about your mom. Hope all is well.

You don't have to apologize! Most of us pouchers are very aware of how our illness has affected others. I am fortunate to have a very understanding fiance who has watched me suffer with this disease since we first met over 3 years ago (I've had UC for almost 6 years). He was put through the wringer during my surgeries, complications and recoveries. By the time I had my emergency colectomy in November of last year, we hadn't been intimate for almost 5 months. I think after my takedown, he kind of expected things to finally "get back to normal" and didn't realize how much of an adjustment this is. Once again, he found himself making emergency pit stops at various highway restrooms, and I haven't felt too well these days (RV fistula) so we haven't been out in quite some time. He got frustrated last weekend and had to blow off some steam for awhile. I tell him he's free to go out and do what he likes (lord knows I'd like to), but he always wants me with him, which I suppose I should be grateful for.
It's hard for us to exactly understand what our friends and family go through, often because I think we're so preoccupied with either upcoming surgery, recovery, prevention, maintenance....you may want to PM Mark & Megan...Mark was the one with UC who recently had his surgery and Megan is his parter for about 13 years I think. She may be able to offer some insight.
Again, please don't feel bad for feeling as you do. We understand that you suffer too.

**HUGE Hugs*** and wish I could hug you in person.

I have never been in a situation even close to what you are in and have been in for now 2 years but I truly do care and wish I could turn it around for you both. Venting is good therapy and so are tears. I think women especially have been given a true gift with the gift of tears. Sometimes that is all that makes it a little better. Never be afraid to express your tears, your frustrations, worries, fears, and anger - we have to work through it to allow healing to come.

I am so glad you have a good support system in place, sounds like your friends and family are just awesome but I hear you - at times even that just doesn't 'cut it'... You miss how it once was and even the best of intentions and distractions cannot replace that...

My hope for you is that life brings flowers along your new path to experience, ... to let you stop and smell them and experience the sweetness of life in a new dimension.

We used to have some friends that loved to travel together ... then he became too ill and they could no longer travel and there were so many places they still wanted to see together. They would rent / buy videos of those places and experience them through the eyes of the narrator and photographer and then share their dreams and visions of what the experience would be like if they were there together ... While it was different, they said it became such a special time to them both and they grew so much more in love through it because they could see inside one another's minds and hearts more than if they had been there. They would joke that they had the best trips of their lifetime sitting in their easy chair and havinig paid only the cost of the movie rental

You are in my prayers kiddo. Wish I had a way to change things for you.

Side note: mom is doing well today - thank you. Her color is good and she is talking well. Just begging to come home and it breaks my heart when she is not even out of the woods yet and has a long way to go before she will be able to come home.

Hi, Joan.
I don't know if you remember us. We corresponded some last year while Paul's health was "going down the tubes." I have wondered about you since then-- I feel so bad for you and Dennis. It's amazing how we can't know each other personally, yet feel such empathy for each other. This is a great site.
I think it's important that you're so honest. Last year when Paul was so ill and I was petrified of his dying, you were a great help to me. I only wish that Dennis was doing better...
Please don't feel bad for being candid. I remember feeling so lonely, driving back and forth from the hospital, picking up our 7 year old and 4 year old twins at 12:00 at night, just to transfer them to their own beds at home and leaving again early the next morning, leaving them with the babysitter. Paul and I couldn't go out, we couldn't eat out, we couldn't go to his mom and dads or mine, the whole thing. It was like we were being suffocated by this disease. There was nothing else to talk about, nothing else to think about but ulcerative colitis. We lived it. It was one huge elephant that never left the room. Trying to help your husband maintain his dignity is difficult- visiting nurses, helping with the bathroom, ostomy, meds, etc. It takes its toll on a wife and on the patient.
Even with all of the love we felt, the people helping, the kind caregivers, and family all around, I have never felt so alone in my entire life. No one else knew how I felt. And no one can really know how you feel. Spouses on this forum can to an extent, but you are unique, and what you feel is unique.
My Dad always tells me, "Be sure to feel what you feel and acknowledge it. Feelings aren't wrong." Feel free to PM us. I agree with Michelle- Mark and Megan have a great viewpoint, and their recent posts and pictures from Mark's surgeries brought back a lot of memories. It's nice to know we're not the only spouses or partners out there.
Keep us posted. We do care. We'll pray for you and Dennis. I hope this can all get a little better for all of you.
'Glad to hear the rest of your family's well. It's heartwarming to hear that your boys are doing good.
Take care, Joan. Our best to Dennis.
Betsy & Paul

You deserve your pity party. Most of us see the light at the end of the tunnel far sooner than the time you have patiently waited for Dennis to become healthy enough for outings and celebrations. It is a sad day to have to accept that the life you crave may never return. How do you find joy and peace in accepting the crumbs you have left of your life with your life partner?

I don't know the answer to that, but it seems that you are doing the best you can by getting respites with your children, friends, and parents during outings. But, I am sure there is always that little nagging sensation of , "there was once a time that Dennis would have loved this." You are right though, you love your man and will take what you can get with him and if he eventually bounces back, it will be a fantastic gift, but if he doesn't it sounds like it is something you are willing to accept.

My husband and I talk every once in a while about what if this or that happens, since we both have multiple health problems that likely will progress with time. We just figure that we'll do what we can while we can, then we will have memories to sustain us when we are stuck in our house. Unfortunately, your time came too early. I'm sorry about that. I will hold out some high hopes that Dennis is not finished yet and he could still be a more active member of the family yet. Perhaps not as vigorous as he once was, but certainly better than he is now.

Here is crossing everything for you and calling on all the powers that be, to restore Dennis to you!!

Jan

You deserve much more than a mere pity party. You deserve a pity bash. A pity destination event. I’m surprised you don’t dwell in that pity party state. You have so much gumption.

Okay, here’s what I’d do. (Well, maybe it’d be hard because it’s hard for me to ask for anything…) I’d call up our friends and explain things to them. Explain that you want to do adult things. Explain that you want to do adult activities that include Dennis. Then have them start planning. A vertical blind wine tasting at your house with some nice appetizers that Dennis can eat. If he can’t drink the wine, I’ll bet he can at least taste and spit. Get a book on how to taste.

Do a film festival once a month at your house. One of the best is the Dennis Hopper film festival. Just think about all the great films he’s been in – Rebel Without a Cause; Cool Hand Luke; Easy Rider; True Grit; Apocalypse Now; Rumble Fish: Blue Velvet; River’s Edge; Hoosiers; Black Widow; True Romance; Basquiat; Speed; and we can’t forget The Texas Chainsaw Massacre. Hey, Dennis (Hopper) may not be your cuppa but I’m sure there’s an actor or theme that would be great.

Do a monthly cookout at your house. Have friends come over for a potluck – make a theme and it’ll be special. Have a book club at your house. (Hey, you can choose the first book and maybe choose something that can really explain what you and Dennis are going through.)

I know that being at home definitely isn’t as fun as going out with Dennis but I think this would bring a little bit of normality to your lives until Dennis really can go out and do these things. I’ll bet your friends would love to step up to the plate. I’ll bet your friends have no idea what to do for you all. This would help them out too.

I feel so badly for you all. I hope you just skate on through this ‘anniversary.’

As always, big hugs to you and Dennis.

kathy

Hi Joan,

I think if anyone deserves a pity party then you do. But I also know that you won't let it go on for too long because you ARE a glass half full person. I don't know that I could stay as strong if my hopes of a better healthier life were constantly being dashed and I'm not the carer!

I do know that every time I have a new ailment (or the recurrence of an old one) Frank quietly handles the situation but the frustration of not being able to do anything to make things better is written all over his face. It's not something I dwell on (as the patient) but I'm quite sure he often thinks about what would/will happen if and when things get so bad for us.

I really don't have any advice, just want to be here in solidarity with everyone else who wants to see things turn around for you both. If the power of positive thinking really does work then the good people from this site alone will have Dennis healthy and you both being able to regain your normal pre-sickness lives together.

All I can offer is a cyber (((((((((((((((hug))))))))))))))) and a virtual shoulder to cry on though I wish I lived close enough for it to be the real thing.

Take good care of yourself.

Luv & hugs.

Shell

I love Kathy's idea. I think I'll suggest that to Paul, should I need to be laid up again for another surgery for this fistula.

Hi Joan,

I too am a partner, and we've been through it all, I crashed 2 years ago for about a year; I guess it was depression, it had all gotten to be too much for me between my personal goals, his health, his health and our life, etc.... But during this period some key things occured in my life:

1. My women stepped up and made sure to take care of me and made sure I didn't give up my dreams to fit the reality of Mark's health situation. My women (i.e. I call my mom, my moms best friend, my sister, and my professional mentors, and my few main freinds) made sure to watch me during that year, they all in their way took care of me; mainly they all knew I was getting 'sick' emotionally and watched me closely in case it became to serious.

2. During this very long year, Mark watched me no longer be his support system, instead he was having to support me; and though he was really sick with UC my health became a priority. Something happened during this time where he no longer punished me or others for the fact he was sick. He learned somewhere in there how to pick up and fight the disease. I like to think he did this so that he could take care of me; but I don't know that for sure.

Anyways, since that time, Mark and I stepped up our coping, stepped up our relationship and havne't seen a negative coping day since.

I really believe though if Mark hadn't changed his way of handling his disease to be more positive even when it was really hard; I don't think I could have coped. And then of course, I owe it to my women...I knew they had me no matter what. And now, I do everything to remember that, show them I know what they did, and of course, make sure others know how important social systems are for support in times of chronic crisis.

Megan

So MANY great ideas.

Unfortunately, Kathy's FUN idea won't work as Dennis can't be social for very long at all. He can hardly stand it when his friends stop by if they stay more than 30 minutes. He can't concetrate on a conversation that long (or chooses not to with them because when he decides to talk he DRIVES ME NUTS).

Since dennis just told me yesterday that he wishes he would have gotten to Ireland maybe the travel movie idea would work.

Since Dennis is kind of going more "downhill" than up, things are more like Megan. Although I have most of my dreams (both personal and professional and I do have to thank Dennis for his support for that) it's the "women" in my life that pick me up. They get pretty damn pushy (and one or 2 of you on here that i've had contact with privately- thank you.....) when they think things are getting too rough. They watch my kids, take me out, sit and get drunk on my deck so I don't have to drive home and make sure I know they are there (even when I don't think I need them). Sometimes, I'll make a plan and then not feel like it when the time comes and they don't let me out of it.

I'm kind of lucky that the times I've really really stumbled (and LUCKILY, it doesn't last too long), friends and family come in and whisk off every extra pressure and then Dennis talks to me and reminds me that LIFE GOES ON. No matter what happens when, the sun is going to come up, the world will still turn and life will continue. Dennis has changed his coping about 95% (his terrible pain days still make us refuse to talk to him but I think it's more the sorrow we feel about it now) since he started therapy which has helped GREATLY.

I hope I can look at this 5 years from now and laugh but the reality is, I most likely will be alone 5 years from now. Dennis is 15 years older but I really figured that he'd still be fine and ready to enjoy life without the kids when I was 50 and he was 65. Well, I'm almost 41 and will be SHOCKED if I'm not a widow by 45. I think those are the plans I'm mourning. That was when we would go to Ireland. (Now, I'll just head to Switzerland by myself- LOL!) He told me almost 20 years ago that I really should think 2x about this because this would kill him someday and maybe that's not what I wanted to have in my life. I should be celebrating the fact that my decision wouldn't have been different if i'd have had a crystal ball. All the things we missed or I ended up going to alone and late because "nature called" on our way out the door....... it was all worth it. I know what it is like to feel completely loved. And I can do this because I know he would do it for me if situations were reversed. He was willing to go into a nursing home so I could go on vacation and then happily lie to me every day when we talked that all was well....... (We were in the er the night after I got home!) But I thank him for being able to carry on a conversation a few times a day and pretend all was well and even hide it in his voice! I suspected but I also knew that if he thought he'd ruined my trip, he'd never forgive himself so I felt free to have fun. (And I have the women to thank for that...... the 'friend' women were all on call and 'check in' duty just in case. The 'family' women (well, father, bother and brother-in laws too) made sure I got time to myself and entertained my teenage kids, forced me to go white water rafting even though I was too tired and took me out every night for great dining and drinking........)

You know what..... You've ALL made me remember HOW much I have to be thankful for rather than sorry. If I can look back on the last 2 years of our life (let alone the 18 of time together) and still say I wouldn't change a thing (ok, maybe drs?!?!?), I can be happy no matter what happens. I did walk into this eyes wide open (but man was i clueless- UC? What's that, a belly ache??).

You've all helped and I've not shopped but there's a sweater at Coldwater Creek that I just might have to go get this weekend...... (although it sounds like my almost 13 year old has my weekend tied up with running him and his friend - who lives at a winery- I'm so jealous- back and forth from our house to the winery all weekend. On the cool side of that, they even are going to work in the soup kitchen on Sat am- see, kids aren't completely ruined yet either. OK his parents are doing 1/2 the running but it seems the little nuts have plans back and forth 2 times a day! CWC is in the complete OTHER direction of ANY of their plans and the one that put me in the vicinity has HIS parents driving- that should tell you about how my life goes (LOL)!) Great ideas, understanding and thoughtfulness!! THANKS. I don't think I can ever express all that this site and the people have given me.

Megan, I haven't looked at your posts yet but I did look at your profile and am hoping that I'm going to find GREAT surgery news for you. Sounds like you have found what it takes to get thru! YIPPEE. LOVE strong women. (Love strong men too but when women bond, we're an force to be reckoned with!!)

Betsy, haven't been checking here lately but I hope that the past tense tone of your post means things have gotten WAY better for you too! Now twins is one thing I've always thought would kill me. Knowing you have twin and they've lived to 4 made me know you could do ANYTHING.

J-P-S, how's the mom? Still hoping for good.

All of you again, THANKS. Sometimes it really helps to hear from those who "reall get it".

I do want to again post a disclaimer for any newbies getting scared. Although Dennis had a bad surgical botch, that's not the total reason he's where he is. It's the fact it took the way too many years to finally convince themselves it was CD. That surgery wouldn't have helped him had it been done right and I can't say things would be way different now had it not been done......

That said, Good night all and THANKS AGAIN.

Joan,
I am in a little bit of a unique position that I have been both the sickee and the care giver. I had a sub toatl colectomy due to a c-diff infection and the care giver to my mom who had a sub total colectomy at the age of 82 due to necrosis of the colon.
My grandson who is 3 over heard his mom and dad discussing Grandma(my mom) about her progress and dealing with an ileoostomy. His mom said that she was having a pity party but other than that physically she was doing well. That night at prayer time Blake was saying his prayers and told God that he hoped that great grandma had a good time at her party and he hoped she had cake.

Out of the mouths of babes.

I am not looking at losing my love and my life but very soon I will lose my mom as she has had many complications lately.All I can say is I hope she had cake.

I don't know very much about you but I can feel the very desparate toll of your loss.

My thoughts and prayers are with you. I hope you find strength in your kids and the love that you and Dennis share.

Out of the mouth of babes! God bless your grandson!

And hopefully he'll bless me too! But no matter what party I'm having, I do believe I should eat some cake.

Hey maybe that's the problem. I haven't had cake in a while. With a busy house this weekend with kids, perhaps I'll get a cake and they'll all look at me like I'm nuts when I light the candles and tell them that we each are to celebrate whatever we feel like! I'd do streamers and balloons but that's just more mess to pick up. Maybe I'll settle for some beautiful flowers. I'll not have to pitch those for a week.

OK, I'm already perking up but now I'm even getting excited. I LOVE showing my kids that sometimes, you have to act the opposite of how you feel. From a pity party to a real party. House full of Dennis, me, kids & friends and some of my girlfriends. Kids will be hollering in the family room while playing the wii, we'll be drinking and giggling on the deck off the living room and everytime one of us walks in, he'll just look and shake his head from the couch because his crazy wife is throwing a real party for a pity party. (Luckily, he'll also get it.)

What can I say, he knew he married a goof ball!!

I'm so sorry to hear about your Mom. I'm VERY lucky that (knock on wood) other than my mom getting a little "off the beam", I've not had to deal with anything like that. I'm the only one of 4 of us siblings close by. (Although my dad told me that he's considering trying to make my mom move permantly to their house in Colorado in a year or so..... told my sister that lives in Denver that today. Had to laugh when she joked "but they were to be YOUR problem!" She already gets them 1/2 a year!)

And as you know, there's alot of strength in love. dennis told me early on when trying to convince me of how hard life would be with UC that "sometimes, love isn't enough." "Sorry dear, sometimes, that's the only thing that will work."

Kiss that grandson and prayers for your mother's health (and yours) and your strength. I can't even imagine the roll that you play. I'm only mother and caregiver. You're "sickee" (your term- no insult), mother, grandmother and caregiver. YIKES. You are a machine.

Joan,

A quote that you'll be able to appreciate:

"Love is my decision to make your problem my concern" -- Robert Schuller

Megan

Hi Joan,
I understand a little what you are going through, cause it´s not easy to see someone you love so much in this situation. We suffer with them and for them. Hold on to your good memories together, your children and everything you have accomplished as a couple and family.

I know the felling of going out with friends or even travelling without your loved one. My boyfriend and I have been together for almost 10 months now, and I miss him everytime he is not around. I´m travelling abroad right now. I´m visiting my family in Brazil, but I can´t take my mind off him, at home struggling with his disease.
I hope Dennis gets better, and wish you will go through this, knowing God has the best for us, even when we can´t really see it.
Borboleta

LOVE it Megan. I'll need to post that one in my office!!!!

Borboleta, my brother lives in Brazil and his wife is Brazilian. They live in San Paulo now but his company is transfering them back to Tampa by Jan 1. (He's coming in Oct. but Vivi has to get thru Dec. of her masters program there to get it to transfer here or they are out of total upfront payment and nothing will transfer!) Where are you from in Brazil?

And, do your best to enjoy your family while you can! It's such a long trip. Got to see my brother and his brood (terrific wife and 2 beautiful baby girls) while on vacation in Colorado a month ago. They were only there for 3 days as Vivi had to call in sick to a new job but they were a nice 3 days. It's hard being that far from your family no matter what continent they are on.

And life is full of great things if we are just open enough to accept it. THAT'S the hard part!!