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Posted 12/18/2008 1:39 AM (GMT 0)
I don't know when enough is enough. Being in a flare just makes every day terrible, I just never feel quite up to par. My boyfriend is so angry with me right now, hes been arguing with me all day because I don't want to go out tonight. I don't drink, I can't because of how sick I get and even before I was sick it was very rare that I would drink. He doesn't quite seem to understand how awkward it is for me to go to bars where everyone is drinking and be the only one not. I HATE it, I'd love to be able to go out and have a drink or go to parties with him and I've tried, but I just can't do it and I feel stupid being there. He refuses to see my side and I end up crying for a whole day because he is so angry about it. I just don't know what to do and the stress is so unnecessary cry
Posted 12/18/2008 1:59 AM (GMT 0)
So sorry you're feeling so blue dear.  I can't think of anything I hate more than being around a "jolly" bunch of drinkers and not be able to drink.  You have to drink with them in order to put up with how stupid some people act when they've had a few.  I haven't been able to drink for years and I don't miss it for sure--and I don't miss acting like a dope under the influence, either. I'm perfectly able to do that even sober!!

Don't mean to sound like an old party pooper, but if someone truly cares for you, they should understand and respect your feelings.

Hope you get to feeling better and cheer up--I know it's hard, especially during the Holidays.

God bless

smurf

 

Posted 12/18/2008 2:33 AM (GMT 0)

If he is not willing to talk it over with you and understand and still insists you "party" with him - look for one who does not drink and likes to do the same things you can and like to do!  I have been married 46 years to same man - one who loves me and understands and when he had to give up alcohol because of illness I did too and we found a lot we can do together for fun and relaxation. 

Sorry if this sounds harsh - but you only go around once!

ElaineNY

Posted 12/18/2008 2:34 AM (GMT 0)
Do what you need to do, or not do, to give yourself peace. Many years ago when I first started dating my husband, he showed some inpatience I let him know that having that peace was more important to me than ANY relationship. And I meant it. I had already had this disease for 10 years and knew this to be so. He got the message. We've been married for 12 years and he understands and never, never is impatient with my needs.

I tried to read your message to him and got teary and he came over to me to read it instead. He remembers and said he just didn't know any better. He recommends that, if this is someone you truly want to have in your life, you also need to have patience to be honest about how it affects you and truly educate him. He says no one who has a normal system can have a remote idea of what this does to you. He says, communicate with him. "If he's smart and worth having around, he'll understand."

Good luck sweetie.
Posted 12/18/2008 2:37 AM (GMT 0)
All I can say is that I am sorry for your pain. This is not a disease for wimps, is it? Your whole life gets upside down.
Now, that said, shut down the pity party, pick yourself up, and do something that makes YOU feel good. Right now, I'm thinking E Harmony for a new boyfriend. Smiles and nice thoughts your way, K
Posted 12/18/2008 3:25 AM (GMT 0)
He has such an issue talking about me being sick. He has been right by my side through all of this, every hospital stay hes held my hand when it took 8-10 tries to start an iv(and he hates that stuff) held my hair when I was sick, carried me when I was in too much pain to walk, and slept in a makeshift bed of two hospital chairs--and ones that don't recline---so it is very, very hard for me to leave when he has been my support system for the past year. He just seems to forget that it affects me every day and not just when I'm in the hospital. I know he is terrified, we went through a period of time when my blood counts went crazy and my spleen was so enlarged I had to get bone marrow biopsies and the likes and he just couldn't take it. I didn't ask for this, but to a degree he knew what he was getting in to...I explained it as best I could. Maybe I'm selfish or too wrapped up in how its affecting me to know how it affects him, but again he never takes the time to explain to me he just gets angry when I ask questions and try to understand or he gets frustrated and says I'm not ready for this, I'm not able to deal with this...I'm too young and at that point I give up trying because if I can do it, he can too.

I can't thank you all enough for your kind words, they most definitely made me smile through tear-filled eyes.
Posted 12/18/2008 3:33 AM (GMT 0)

I know what you mean about the not drinking and stuff. I am only just turned 28 and have barely been out in about 5 months. Beer just sends me up the wall and running to the bathroom.

Honestly, if you asked me 6 months ago...beer and chicken wings were two of my fav. things on the planet...so I understand your frustration. I have some days where I feel like my whole life just changed that first time I ran to the toilet.

Try not to be too hard on yourself. You have to put yourself first in some cases...this being one of them. I hope your boyfriend can come to understand how this affects you. If not, trust me....it's not time to panic yet. You are so young still.

Take care of your health first...the rest will follow suit. And try to relax...that's what I'm trying to do. It's really hard right now...but you have to try. Do yoga or take short walks. Do things to make you smile and put your focus elsewhere, even for 15 mins here or there. You deserve it.

Good luck turn

Posted 12/18/2008 3:56 AM (GMT 0)
I think with this stinking disease.... it does get frustrating on both ends. From your last post he sounds like a teriffic guy and sounds totally worth it. I haven't flared continuously since I was first diagnosed, but my guy has been there all the way. The only time he told me not to get "sick" was this past spring. Which was in a way kinda stupid, cuz it jinxed my disease, but I managed through it all and didn't have a hospital visit. That's his main concern. My hubby is still in College, so he doesn't want my illness to effect his schooling cuz he wants to be done with it so we can move on in life. Maybe, once your guy is calmed down and you are calm yourself maybe you two should just sit down and talk about how this UC is effecting both of you. It's not just stressful on our side, but to the others that love us.

Good luck! He sounds worth it!
Posted 12/18/2008 4:08 AM (GMT 0)
I am currently 28 but quit drinking at about 23 due to crohns. I still occasionally decide to party and dearly pay for it after. I just want to tell you a bit about my experience in case it helps you but am in no way trying to make you do something you don't want to do. The first few times I went out with my friends and wasn't drinking I felt stupid, awkward, and out of place. But then I just made sure I ALWAYS had a beverage in my hand. I just drank ginger ale, or water, or sprite, or whatever. Just standing there with something in my hand made me feel so much more at ease. That would be my first suggestion. My second suggestion is the more I did it, the more fun I had. But it depended on the situation. When I am at a house party where everyone is playing beer pong and I am just standing there I still feel pretty silly. I usually wind up on a couch reading a magazine or on someone's computer surfing the net. But, I found it is pretty pleasant at bars and clubs. I can dance w/ all my drunk friends and they don't even remember I am sober. Since everyone else is toasted I don't look dumb dancing. At bars we are usually at least in a circle talking so I don't feel left out by a card game or other drinking game. Finally, not sure if I said this yet, the more I went out, the easier it got. And my husband LOVES having a DD. At first I just had to look at it as a sacrifice. My husband put up with all my disease issues, I could suck up feeling uncomfortable and go hang out. He swears it is not as much fun without me there because he just thinks about me at home.

As an alternative, if he just doesn't want you sitting at home, maybe you could plan a night out w/ the girls and offer to drop him off and pick him up at his party. Maybe make a pact with him that you want to start going out more but are still getting comfortable with it so it has to be on your terms. Only establishments you enjoy with bathrooms/food you are comfortable with. Start out by agreeing to go for 3 hours or so, not a whole night. Let him know that if any point in the night you get sick, he has to pack up and go home, no complaints.

Are you dealing with anxiety problems? Around the time I stopped wanting to go out I realized I was having some major crohns related anxiety due to fear of accidents. So I guess what I am saying if you feel up to it, give it a try. If the issue isn't you are too sick to leave the house and is just you don't really have fun, I would say it is worth doing it once and awhile. Relationships are a give and take and it feels nice to give once and awhile. And, you might wind up enjoying it.
Posted 12/18/2008 4:29 AM (GMT 0)
I dont drink and didnt before for alot of years before uc. But I have a girlfriend that likes to go to the bars, I dont go very often but when she is there I go and just drink water the whole time I am there. I dont have to drink to have a good time and talk to people. Is it the drinking part. are that you just feel really bad. Just tell them you are the designated driver. Hope everything turns out ok for you.
Posted 12/18/2008 4:42 AM (GMT 0)

He sounds like a great guy when you are really sick.  That is very important. I would not throw that away. However it sounds like when you are having a flare and you are not hosiptal sick is the issue.  We who have this disease know all the pain and all the sacrifices that we have to make. Our family/support friends don't think that at first.  Our illness forces us to think that way. You being in the hosiptal forces him to feel that way.  But when you feel ok and look ok the thought of you being sick doesn't cross others minds.  There is a book that I can't think of the name that my wife read years ago that talks about Colitis/chrons from a family perspective. Not a patient. Getting others to think the way we do about going out is hard when they are not sick. Where are the bathrooms. How many stalls do they have.  Is it crowded in the place. All these little thinkgs we think about I am sure he does not. Which is NORMAL.

I got sick when I was 19.  I never had that chance to drink.  My wife and I were dating prior to me getting sick.  She went to a party college school. I woudl visit. All woudl be drinking but if I didn't feel up to it we just didn't go out.  You have to have a 2 way communication.  Explaining that you need to know where every bathroom is and WHY. Having him understand the WHY will help him. Not just knowing this is how it has to be.  They why will help him understand why it has to be.  As we got older I woudl be the designated driver. Which everyone loved.

All I am saying is just explain to him that you are still sick even if you look great.  Just you can do many things but you have limits. And here are the limits and this is what happens to me if I break those limits.  Explain why you need to know about bathrooms. He think you have to know b/c you have to poop.  But you need to explain that its more than that.  I am sure you feel paniced if you don't konw where one is. Tell him that. Make him understand what you are thinking.  My wife gets it great. 

good luck

Posted 12/18/2008 4:56 AM (GMT 0)
If he is really good when you are sick and when you are healthy, it's worth pushing forward but if you find he's stressing you, you may want to consider a change. UC isn't the sort of disease that one would want to have when you're dealing with a stressful relationship. You want peace in that part of your life because the disease brings enough heartache!!

Good Luck. Have a healthy, happy holiday and New Year!

Eliza
Posted 12/18/2008 6:25 PM (GMT 0)

Ya know sweetie,  I hate to say it but your boyfriend sounds a tad immature.  You both are so young.  I'm 65  and have been through a lot of hospitalizations. Not for colitis though, just other stuff.  That is when you see the real personality in your spouse. (I've been married 45 years)  Your boyfriend says, "I'm to young, I can't take this"  Well, he is not the one who is suffering,  you are.  If he can't deal with it now it will only be worse later. Love is "unconditional"  you don't get to have it perfect.  He does not sound like a "keeper" to me that will last for a permanent relationship.  Dump him now, and don't depend on him to make you happy.  As for the drinking part,  I never understood what the big deal of drinking and getting drunk was. As I said, I'm 65, and never drank a beer in my life.  Can't stand to even smell it.  Wine??  NO!  Alcohol..yuk,,,even a sweet drink like a Pina Coloda,  gives me and instant headache.  But I'll tell ya what,,  I have always had more fun at parties then the drunks because watching them make asses of themselves is pretty darn funny.  PLUS,  I don't ever suffer a hangover the next day.  You can have fun without drinking.  Good luck to you.  By the way,  my son has colitis, and he doesn't drink either,,,seems like beer gives him a headache too.. :-)  must be hereditary.  I'm glad of that.

Posted 12/18/2008 7:32 PM (GMT 0)
First off I have to agree with everyone here. You can have fun without drinking. And most people in the bars understand non drinkers now adays with all the designated driver programs and such. Alot of bars even give you free soft drinks or tea in this situation. So I say go out and have fun. Luckily for me, I've found a few drinks I can drink with no side effects. Have had to give up my beloved bud light. But heineken or heinken light doesn't seem to bother my gut. Another one is captain morgan and ginger ale (tastes like vanilla) I normally have the bartender go light on the captain. Another thing that helps me go out is that My girlfriends son owns a bar. I know everyone there, I know where the bathroom is. They are clean and well stocked. Its more like hangin out with friends in a big living room. My advice.... drink or don't drink, thats up to you, but find a place you like with friends and go out and enjoy. Hopefully your boy friend will enjoy the same hang out.
Posted 12/18/2008 8:25 PM (GMT 0)
I go out all the time with him, thats my issue. I don't mind the bars normally and 8 times out of 10 I will be right there with him because I'm the kind of person who can be silly without the alcohol...I make my own fun, I always have. Plus, as everyone has said, having a DD is necessary and I don't mind because I would so much rather him be safe. It just seems that the rare times I don't want to go out, it turns into an all out battle. I watch my hurtful words, but he just lets them fly and it makes everything worse. I have fun with him no matter what we do, but I'm always the one to sacrifice. I love his friends, they all know I'm sick and they respect my decisions and I have a good time with him and them even when I'm not drinking. Last night though, he wanted to go out with all these people I didn't know to a place I've never been and I just wasn't feeling very comfortable and he couldn't understand. I just wish I could make him see how I feel, how difficult it is for me sometimes. I think he can't grasp it because he sees me making road trips with him and being in the car for hours with no problem, but I also don't eat the day before or the day of and load up on so many pills that I'm virtually comatose, but those are the things I'll do for him. He is very immature, he wants to be 22 and have his fun and not feel like an old man, tied down and I totally respect that. I had to do a lot of growing up when I got sick, but I never expected that of him or expected for him to change his life...I never asked and I never would. Going out and partying is his thing, but its not mine..it wasn't before I got sick. I tell him all the time I don't care that he goes out, its never been me to try to control someone or change them, but I think he feels hurts when I don't want to go out and it's never because I don't want to be with him just more for his sake, because I know the times when I won't have fun going out and he won't have fun because of me, so I spare him. Hes at the point where he thinks we're too different, that I need to find someone who wants to go to dinner, and ice skating, and plays and he needs to find a girl who can party with the best of them and he told me that...thats whats breaking my heart because hes holding my illness against me and it's not fair because I've tried countless times to do those things with him, but my body just can't withstand it.
Posted 12/18/2008 8:59 PM (GMT 0)
It sounds like he wants someone who can pick up and go at will.  No restrictions.  I think you would be in this situation even if you didn't get sick.  From your postings he sounds like a typical guy who likes to go bar hopping, parties, travel at spur of the moment, etc.

It sound like you weren't like that before you got sick and now that you are sick you physically can't go along and "give-in" to him everytime.   I think getting sick may have put into light the big differences in your relationship with him.   You are both young and both finding out who you are. 

You are right he is using your sickness as an excuse to end it.  Before you got sick, I am sure you argued about these types of things until you gave in and went or had a fight.   Now that you can't give in because you physically can't do it, its showing him how different you 2 really are.   I would let him go.  If he is right for you he will come back when he grows up. 

You are not asking a lot.  You are giving him his freedom to do things when you can't. No questions asked. You have to take care of yourself with this disease.  The STRESS you are having with this now is probably making your bathroom pretty interesting. LOL!

He wants OUT of the relationship. He is all but telling you to break up with him. It will be hard and painful.  But I believe its something you have to do.

 

Posted 12/19/2008 3:59 AM (GMT 0)

I completely understand how you feel - minus the supportive BF who is by my side in the hospital... Thankfully I have never been admitted to the hospital so I can't say how he would react to that but he is very unsupportive of my sickness. I don't desire to go out drinking, especially when I am feeling down and drained. I mean, how can I have fun at a bar when I could have to run to the bathroom at any second? Some days my UC is under control and other days, I am practically disabled! Last night I had a conversation with my BF about my situation and why I can't deal with any added stress right now and he had the audacity to tell me that this is "all excuses" and everyone has issues but most people can deal with them better. You think he notices the days when I briskly walk past him 10x to go to the bathroom? apparently not. I explained that right now I can't focus on the future or 5 years from now, I can only focus on today and feeling better. Focusing on the future and making plans to do things I couldn't possibly do right now seems pretty pointless and it stresses me out. It's not like I can go sit in a classroom for 8 hours a day. I can't work long hours because often times I am so drained of energy or running to the toilet, I am pretty much useless. Most employers don't want to hire someone with that kind of baggage. I don't understand how someone can have so little compassion for a person who is ill. It has turned me sour against him. I have absolutely no smpathy if he is in pain or hurt. How can I? Hopefully your relationship doesn't turn as sour as mine has.

You guys are so young and you have your whole lives ahead of you. It sounds to me like his priorities are screwed up. He should see you and your health as more important than getting to the next bar. It's tough because I can tell you this but I can't take my own advice. Part of my problem is that I feel like I would never be able to meet someone and have a decent relationship again because of my sickness. How can I subject someone to all this baggage? It's definitely not desireable or a turn-on. I guess I feel bad about myself and I am stressed even though I do everything possible to eliminate stress. My relationship is bad, I feel undesirable, I am sick, I am unhappy with my career, I keep all this stuff bottled up... Funny thing is, I am convinced my BF is a trigger of my sickness but I am so scared to be alone that I deal with all the stress he adds. You have to stay within your comfort zone. I don't want to stay out all night, drink and crash on his friends dirty, stinky couch. I wasn't interested in that when I was 18 and I am not interested in it now. If he wants someone who will get trashed and couch-surf, go find someone else because it's not me and it's never going to be.

Goodluck figuring out what you want and stay strong!

Posted 12/19/2008 5:03 AM (GMT 0)
Wow I looked at your med list...perhaps surgery might be a possibilty?
Posted 12/19/2008 5:17 AM (GMT 0)
I been trying so hard to come up with how to answer this without it coming out wrong.
As far as the bf beign mad at you about not going out on the date the other night, that was not cool, and he shouldn't have done that. however he does care about you, obviously or he would not be staying at the hosptial and all.
I was 21 when i got sick and i lost alot of my life and my husband wanted to do stuff all the time too, and he had a hard time understanding why i couldnt go do stuff and we fought about it alot. A big problem with UC is that people cant see the disease on the outside. So it's hard for someone to understand how sick you really are.
He is 22, and he is immature, that's what 22 year old men are. And that's ok, that's the way it should be. Honestly, 22 year old women should be somewhat immature too, but wiht UC you have to get mature fast and get strong fast.
It's hard for people who are not sick to understand, and it's also very hard on them to watch someone they love be sick. And for men, they want to fix you (my husband told me this eventually after years, lol) he was very upset because he knew i was sick, he was upset about it and he loved me and didnt' want to see my sick, but he couldn't fix it so instead of talkign to me about it and such, he got mad, not at me, but literally at the disease, and himself. And that came across as him being mad at me. after i got rid of my UC he explained this to me, and strangely enough we have a reverse situation now, i am the one who wants to go out and party all the time, and he wants to stay home, and that's what we do, I go out with my friends, one night a week, get horribly drunk (i just started drinking this year, lol) and he stays home, he is not much for doing stuff.
But anyway, the point i am getting it, it takes me forever to make a point, is that while his behavior on this issue is not cool, i think there may be more to it than him being selfish and only wanting to go out. It's hard on him to see you sick and not be able to help you.
That's just my two cents, looking back now, on what hapened to me while i was sick, i can see it now that i am better and i know that when my husband was acting like an idiot it was, strangely enough, actually out of love.
Posted 12/19/2008 5:46 AM (GMT 0)
Sickly girl--your post hit so close to home when you mentioned the "excuses" things. He said something very similar to me "I'm just tired of the excuses." And I just shake my head and say excuses? you have seen me at my worst, you have seen what drinking and eating the wrong things have done to me and you have the nerve to say its an excuse. My hemaglobin hovers between 7-8, that has me physically drained and what energy I have left, I spend on him and our relationship. I can't make him appreciate the sacrifices I make, but I also don't really know the extent to which it affects him because he won't admit that he is afraid or hurt or anything...just acts distant really, as if it doesn't bother him. I'm so sorry that your boyfriend is unsupportive and not understanding and that it has led to resentment in your relationship. I know its so hard and I know exactly how you feel, sort of stuck between a rock and a hard place, because you know he's causing you stress but at the same time, if you leave him, the pain and stress from that is just as bad. I agree with being afraid to find someone else. I know that I am so young and I have my whole life ahead of me, but hes been there through this all and when I am very, seriously ill he is right behind me all the way (if only he could be that way when I'm not laid up in a hospital for 2 weeks) and I can't imagine having to explain all of it to someone else. I really just started becoming more comfortable with letting him see me in such a bad state and having to do it all over again with someone else is not an option...in fact, if things were different and I was single, a relationship would be the furthest thing from my mind. He is my best friend and aside from my daddy, the only person I can find true comfort in...it just sucks when hes the reason I need comfort! Ughhhhhhhhhhhhhhh, so complicated. And as difficult as I know it is to do, you shouldn't let UC make you feel bad about yourself, it never compromises your character and I'm sure you are wonderful and deserve nothing but the best. Loving yourself, in spite of your "flaws" including UC, is the greatest thing you can do.Maybe you just lost sight of who you are because of the disease and unhappiness in relationships and career and once you get back to the basics of you, everything else will fall into place. I always find when I focus on eliminating stress it just builds up even more, so just focus on you and your happiness because truthfully you can't make someone else happy if you can't make yourself happy. And you've given good advice to me, you see and you know...and thats half the battle. Think of it this way, you know what its like to have this disease and you know the courage and strength and patience it takes to live with it and you knowing is what matters, tell your man hes lucky to have someone with such positive attributes! I positive it will get better for you, no matter what happens :)

bbc--I have my days when I just freak out and say thats it, this is the end of the line take that baby out. Unfortunately, my doctor is very conservative he didn't even want me on remicade. That and after my last hospital stay he is worried that I might have crohn's colitis and that removing my colon will only cause it to manifest itself elsewhere. Someone needs to figure it out soon because I've been flaring for far too long!
Posted 12/19/2008 10:55 PM (GMT 0)
My view point is from the other end. I am the Guy with UC. My girlfriend is healthy. No we are both a BIT older. I am 38, she is 47. We live together. She is and has been very supportive most of the time. I try to give her the extras where and when I can. So that when a situation comes up that I can't well.... its a give and take. Like tonight, I really do not feel like going out to dinner. AM tired and gut is gurgling. But she picked a bar/resteraunt that is close and has nice bathrooms. LOL. So I'm going to go for dinner and drinks. I'm going knowing we have to go xmas shoppin on sunday. And She WANTS to SHOP. LOL. I prefer not to shop. I prefer to know what I want and go get it and get out. Mainly due to the bathroom thing. So I figure we will go to dinner tonight, talk about sunday. Work on deciding where and what we want so we can get in get it and get out. SHe also knows, that by going out tonight and having a few drinks with her, means I will probably not have a good day on sunday. But she's understanding of that.
I guess what I'm sayin is if you and your boyfriend can't come to some kind of understanding..... then it is best to move on. For the both of you. I'm new to this disease but all ready I can tell that it will be one of the biggest factors in my life.... for the rest of my life. So I have to find ways to deal with it and live and enjoy myself.
Posted 12/20/2008 12:50 AM (GMT 0)
It sounds like your boyfriend wants you to just be someone you aren't. It is not that he just wants you around but he wants you out drinking the other girls there. He wants a party animal. I think you need to give him an ultimatum. Say, I am never going to be the girl ruling the beer pong table. You either have to accept me for all the things you really love about me, or you have to leave me and find someone who can do those things that I can't. But it is not going to work if you keep trying to change me and keep hoping I am someone different. Then give him a night to think about it and get back to you.
Posted 12/20/2008 1:07 AM (GMT 0)
I second FitzyK's advice.
Posted 12/20/2008 3:19 AM (GMT 0)
Totally agree with Fitzyk23
Posted 12/28/2008 1:34 PM (GMT 0)
honey... you need to tell him to let you be for a week,,, take care of yourself and regain your strength..i have to do this once in a while espeically when i am on prednisone... im a big ball of emotions... prednisone not only effect me... but my boyfiend too... we have the worst fights... once i accepted this part and spoke to my bf about it.. we laugh at fights and sometimes i have to tell him to go sleep over his mothers house for a week for me to get my self back together... but please go out... once you get yourself back together go out and enjoy your life.... prednisone will make you feel like you could just cry yourself to sleep everynight... but dont do this... take care of yourself... take care of your boyfirend too.. cause it could be hard for him with these changes as well... especially your emotional changes... but if he is good for you he will understand... or just let things be... if he doesnt let him go and you take care of yourself... once off medication and you are feeling better you will look at things differently... now important things is to have as little stress in your day until you completly recover!! i know its hard but this will pass!!  :) wish you only the best of luck 

29 YEARS OLD
UC SINCE 19
6 PILLS OF ASACOL DAILY (SORRY DONT KNOW MGS)
FOLIC ACID
FISH OIL DAILY
FLARE UP ONCE A YEAR DURING AUGUST, LASTS about TWO MONTHS WHICH I NEED TO TAKE PREDNISONE, HAIR FALLS OUT AROUND WINTER  LOL ( PRESENTLY IN THAT STAGE).
HAVE A WONDERFUL BOYFRIEND FOR THREE YEARS WHO IS VERY SUPPORTIVE- side note just for this entry- i forget sometimes how lucky i am 
PLANNING ON GETTING PREGNANT :)

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