auughh. bf issues. Thanks and replies to everyone!

Honestly, you need to be completely open with him about what UC is...how it has cycles of flares and remission, how you'll ALWAYS have it, what your symptoms are, etc. Unless he knows everything, you really can't expect him to be understanding when you're sick and complain about it. However, if he still isn't understanding when he knows the full story, then I'd say you need to move on. Having a good support system is important, and if he's not able to offer that (and not all people can), then end the relationship.

Remember unless that person has an illness of their own, they never fully understand how the other person feels. He doesnt ever get to feel the anxiety when having to go out on a flare or mood swings/exhaustion due to medication. I also recommend telling him everything and see how he handles it.

We're all human and there will be times when he'll be frustrated and sick of your illness and thats normal. Make sure you both know to talk about those things and vent when necessary. If in the long run he doesnt want to deal with it or has mentally closed himself off to your needs, then you know what you gotta do.

Good luck :)

Can you download any of the brochures from ccfa for him to read? Something "objective" like that might be helpful, something not coming from you.
I'd been married a few years when I was diagnosed. And I don't complain much... but every once in a while I have to capture my hubby and update him on how I'm feeling, what I can/can't eat or do at the moment, etc. It's not easy, I don't think he completely gets it - and this is the super-sweet guy who warms my retention enemas under his arm in the winter while reading before "lights out"!!
So I guess what I'm saying is.... he might not be a soul mate in disease issues, and it can still be a wonderful relationship.

It also sounds like you're pretty young. Guys in their twenties often have no interest in settling down and feeling old. All of a sudden you went from hiding the severity of your symptoms (or at least not talking about it) to wanting a shoulder to cry on.

If you've read "men are from Mars, women are from Venus", then you probably recognize that most guys 'don't roll like that', at least not naturally, and typically not while they are young. He likely feels frustrated that he cannot help, and that's what guys want to do. If a guy is in a situation where he cannot help whatsoever, he'll often get uncomfortable.

Until your relationship develops further, I'd suggest venting most of your frustration/concerns/details on a close lady friend (or your Mom if you have that type of relationship). Women are often happy to be that shoulder to cry on, Men not as much. This doesn't mean you can't talk to him about it ... just don't make it frequent. He wants a fun/happy relationship. I'm sure he'd understand if you cannot hang out because you're flaring or not feeling well, but that doesn't mean he wants to listen to the details every day.

a guy can't be ANNOYED when you complain about the HORRIBLE pain this disease brings.. my girlfriend was by my side over TWO MONTHS when I was flaired horribly, I was in bed for 2 months and she never left me..... We are very very open with eachother and she would ask me how my stools were and everything, having a person like that that loves you this much really really helps out, if I didn't have her I don't know if I would've made it through this flair ha....

My boyfriend has been with me since a month after I got that flu that never went away... When we first started dating, I didn't know what UC was or if I really had it. I was in major denial. We were going out to eat every other week, hanging out with friends, going to movies, the mall, etc. I miraculously(!!) held it together until I just couldn't do it anymore. I had to get a colonoscopy 6 months after we started dating... He wasn't around for that (camping trip planned a year before), but he knew what was going on was serious. He was there to see the color gradually drain out of my skin and he watched me get sicker and sicker.

After the colonoscopy, it was totally downhill from there. But, he stayed with me. He even brought me to two endoscopies.

Similar to storysinger81, I too had 'that conversation' with my bf. It was really hard, but he knew something was seriously wrong with me. I had no choice but to be completely honest with everything after he was over for a movie one night and I had to leave every 15 minutes to go to the bathroom.

My bf knows that when things are good, we have to do a lot of things before that window closes. For now, I'm lucky to have a lot of the bad experiences done with.

Maybe your bf is just having a hard time right now. Like others have mentioned, talk to your other friends about this. You couldn't personally go through all of this and keep it to yourself, so why should someone else have to hear everything knowing they are the only one that you talk to about it?

I'm so sorry to hear about this particular struggle because this sort of thing plagues people with chronic illness and the last thing you want is for your SO to start flaking out on you. It seems like you're on the right track with your openness about the illness and how it affects you which is incredibly important because you absolutely do not want to get into the habit of just keeping your mouth shut.

Make sure that no matter how tired he may be of hearing you vent about how you're feeling, that you still do it - the worst thing you can do right now is keep your mouth shut and stop complaining or talking about it just to grease the wheels with friends/family or because you're afraid of annoying/aggravating someone you care about. The fact of the matter is you care about them and they care about you so it needs to be fair for everyone.

I was in my twenties when I first started getting sick and went through the exact same thing with my fiance and my friends but I was foolish and started keeping things to myself because it seemed so important to everyone around me to just not have to hear about it. Everyone was sick of hearing about it (although I must say it's such a personal disease I only really talked to my fiance and those whom I *thought* were good friends) and everyone had a cure for what ailed me you know? So I sucked it up and put my life before my disease and when you're young that is so easy to do right?

Now here I am 6 years later, way worse off (physically) than before and almost divorced with hardly any friends (although in retrospect I found that half those "friends" were not real friends to begin with) but the things I went through with my fiance-now-husband are things I never ever want to experience again and I would never wish anyone else to go through it either, it was horrible and heartbreaking. People have a tendency to be conceited and egotistical about their own ideas about what's what and will make up their own minds about you if you let them so don't let them.

I'm not trying to say this is your future OR anyone else's because my experience is one of the worst case scenarios but it's something you need to weight out with all the positives.

One way of taking control of that is to continue being UP FRONT with your friends and family. Ask them, can they definitively tell you that they really understand what you're going through and if they don't what questions do they have? lemonhead gave a really great suggestion, which is bring him to your doctor next time you go and let him listen to the real nitty gritty and see the photos because men ARE fixers and I think a visual and professional dialogue may really do wonders for his grasp of the situation.

Post Edited (defectively) : 9/24/2009 9:03:46 AM (GMT-6)

OMG. Thank you everyone!!! You all bring up some really good points, and it was also nice to have a couple guys comment as well. I definitely have a much better perspective now and I think I know how to better handle the situation.

Doz79: you're right, there's no way for anyone to truly understand how it feels unless they have it or have been through something similar. And I've explained the nature of the disease and told him about surgery.

songlady: that really is a great idea to have him read something more objective and matter of fact. I think as a guy he might relate to that better.

Malkavian: my bf really is super sweet too. He tries really hard to do everything he can to make me feel better, I think he just gets frustrated that it's not working. Like others said, guys are fixers. I didn't mean to sound like I don't appreciate the things he does.

LuckyLindy: We are both 28 (well I will be next week). I wasn't neccessarily "hiding" symptoms. I didn't have any symptoms during the course of our relationship up until now. And I'm not looking for a shoulder to cry on. I've had this disease for 14 years-half my life-and have dealt with it alone the entire run. I just figured since I really care about this one, I should be upfront about it instead of pushing him away (which is what I would have done in any previous relationship). I know guys just want to have fun and be happy but I can't pretend that I'm fine when I'm not. I have started talking to my best girl friend about it and you're right, she's been very supportive and willing to listen to me whine. So from now on...talk to boy to keep him informed, whine to girl.

storysinger81: Haha! He says the same thing about staying positive! I am almost certain you are right about him feeling powerless. He's the type that if I feel pain, he wants to stop it. Any time I've been sick with a cold, or a headache or even just crampy, he's gone out of his way to try to make me feel better. I think he probably is just frustrated that it's not working/going away this time. I keep telling him I will feel better one day, but the fact that he has no control must drive him crazy. Oh, and um, I think you're like my UC twin. Except your super new to it. Sorry about that. Oh, and I was vegan for over a year recently. It was a little hard at first but I felt great all around!

Chevypower1930: I think girls are just more naturally like that. Its' part of our maternal instincts to take care of loved ones when sick. You're very lucky to have her, but I couldn't expect a guy to handle it as well as a girl.

lemonhead: you definitely brought up one of the best points about guys being fixers. So true! I didn't really think about it before because I was so stuck in my own head and how crappy I've been feeling. I will remember that and try to be more sensitive to the fact that this may be hurting him too, just in a different way.

laura220: I totally waited until I was in a flare before really talking about it. I've been through some long remissions before so I didn't even think to tell him before. I also started talking to my girl friend about it more and it has definitely helped. I think after this flare is over he'll be better about it with the next one, after he sees that I go back to the same fun girl when I'm feeling better.

Christine1946: Great advice. I think when the boy understands a little more, he'll be alot like your husband. Supportive but there's still times when enough is enough! I'm so sorry UC ruined your summer! Especially since it sounded like such a nice plan/setting. Good luck at the doctor's, I'm so sorry you may have been given a little hope of relief just to have it taken away.

defectively: Aww, I'm so sorry to hear you are going through such a tough time! :( And here I am complaining about something so silly. My best friend is currently going through some pretty rotten stuff with her husband (like, he has a girlfriend) so I try to be there for her as much as I can. I told her more about my illness yesterday and she was so supportive. I should have known that though, cause I'm the one she turns to in time of need. It's just hard sometimes to admit things like that. Like when we first saw each other again last year after not really speaking for a few years, she wore her wedding rings and acted like everything was fine. When she was more comfortable, she opened up. Same deal with my disease. After 14 years I'm just now getting more comfortable talking about it. I hope everything works out for you, again I'm so sorry for what you're going through.

Peety: Hmmm. I like that! Because sometimes people will be like, oh, stop complaining. But when you let him know you were serious and that sometimes he doesn't and won't come first, he accepted that!

Thanks again everyone. All your advice really did help me alot. Hugs :)