Lost in the woods & a loved one with Crohn's

korine, welcome to the forum!  While I haven't been in a LDR, I can tell you that we had a post on here recently where many people said they prefer just to be left alone when they are flaring.  I know that when I am at work and I'm miserable/in pain, I really don't want to talk to anyone.  And while my husband is great for rubbing my back when I'm having severe stomach spasms, there are times that I'd rather just be alone for a while. 

I understand that not talking doesn't help the relationship any, but just know that what she is doing...seeming to pull away...is not unusual for someone in a flare.  She may also have so much other stuff on her mind.  While she may appear to be fighing this with a passion, many of us put on a front for everyone else and we really aren't as strong inside as we appear on the outside.  She may go to work everyday, but it may be making her so sick that she wonders if she will be able to continue working.       

If there are things that you need to discuss for the sake of the relationship that are not being addressed, then just tell her the next time you talk that you completely understand that she may not feel like talking as much but that there is something you need to discuss with her when she feels up to talking.  On the other hand, if there are things you want to discuss but that can wait, try to give her a little time right now.  Make sure she knows that you are there for her and that you understand she is going through a lot right now and that you will continue to be there for her.  We've also had posts about relationships and many of them falling apart because of the Crohn's.  It will help her to know that you will be there for her regardless of what comes her way.  Best of luck!    

I agree that some people will withdraw whilst in a flare.  Crohns is a draining disease both physically and mentally.  Sometimes when I feel bad I just want to be alone, and normally I am a very outgoing person.

I would just give her the space and time that she needs, but let her know that you are there for her and be supportive.

My flares also trigger depression, is your girlfriend on depression meds?  Be careful how you broach this as many people who are quite obviously depressed will insist they are not.  A lot of people think it is a weakness to admit they are depressed.

 

Firstly you sound like a star, and she is lucky to have you!

It is great that you are reading up on this disease, so many people are so ignorant about it and it's affects(and I have to admit that I was like that too-until son(17) diagnosed last November) I guess it is a bit like walking a tight rope, you want to be there to support but in the same vein you don't want to overdo it and make the condition the whole topic of your relationship. I guess sometimes they just want to be themselves without everyone else reminding them about Crohns. Some people find that talking about it helps, others(my son ) has told friends that he has it but other than that he is still the same person and doesn't really discuss it. Sometimes I do ask him about things related to it(more often than not so that I can give a true picture of what is happening to his specialist, cause when son at appt if he ok on the day he will say he is ok and not think about other problems he has had prior.

Initially it is so easy to keep asking if they are ok etc and you can almost forget what it is like to talk about 'normal' things.

From what you have said it almost sounds like she is in denial and wants to 'prove' that she can carry on as normal regardless.

Having a LTR on it's own is no easy feat(dh working away from home nearly six years now) and yes communication is so important.We usually text everyday, try and talk once a week as well as use email/msn but to a certain degree you do become isolated from each  others world and yes sometimes he or I will not text because we have a day when we really can't be bothered but the other one understands this.

I guess you will have to be your usual self for her, treat her as if nothing has changed and maybe once in a while either ask her how she is or maybe say you have been doing some research and found out that................... and maybe if she is then ready to talk she will open up, if not respect her wishes. I think that once she has come to accept it herself then she will be more receptive.

Hope things work out for you

You are definitely a STAR! And a Keeper! My Daughter sounds a lot like your girlfriend. When her IBD is not acting up she is unstoppable and when it is acting up she withdraws as not to be a Party Pooper/Debbie Downer in anyone's life - Boyfriend, close friends, co-workers and Me, her Mom. No matter what positive/supportive things I try to say falls on ears that doesn't want to hear it because she isn't feeling very well or positive.
She just wants to be left alone to get through it as best as she can and not drag anyone down with her. Makes my heart heavy.

Crohn's is a very depressing chronic disease and if your Girlfriend was having issues with depression before her diagnosis she is getting double whammed when flaring. Is she on meds for depression?

No problem airing relationship issues here. They are aired here by many. All you can do is be there and play it by ear as she rides the ups and downs of Crohn's.

Everyone,

Thanks so much for taking the time to reply. I'm still frustrated with things but your advice has given me that nudge I needed, I think, to resolve myself to all of this.

The more I sit on it, the more I think that if she can approach her situation with so much bravery during the day, she deserves to rest whenever she can. What you've all described sounds like pain and exhaustion that I have no concept of. I'm not the healthiest person on the planet, but I've never been seriously ill or in any terrible pain. Everyone here is a badass (excuse the language) for dealing with it with such grace. I think if I have to wait and wait for her, that's fine -- it's just the breaks. She's worth it.

To answer a common question, about if she's on depression meds or not. I'm actually not sure if she's taking anything, but she does go to a therapist for it. I don't want to elaborate much on her problems with it, because I've made a few promises to her.

comedybob - Thanks for your advice. I'd been thinking for a while about changing my lifestyle to something a bit healthier. I want to show her in any way I can that I'm gonna be right there beside her. I think eating better and staying more active might help to that end and make it easier for her, knowing that she's not the only one around her doing it.

Thanks again, everyone. I'm going to continue learning about the disease and try and find new ways I can communicate with her, and show her that I'm not going anywhere. I've been thinking about writing letters, something she can do at her own pace.

I'm going to echo what everyone else said on here and definately let you know that you are amazing to go through this with your girlfriend. She is lucky to have someone who is willing to support her like you are.

I had experience being the one with Crohn's in a long distance relationship with my fiance for 4 years while I was in grad school. It was not an easy feat, but he was worth every hardship we went to. We talked on the phone every night and it was difficult. There are days when I would have a small flare and even after sleeping 8 hours and taking a nap after school, I still felt like I had pulled an all-nighter. Some nights I could barely concentrate on the phone with him...it is difficult sometimes, especially if you're not feeling well or you're in pain.

Or it's possible she might not think that it's not fair to unload everything on you...how long have you guys been going out for? I have a hard time unloading things on my fiance for 6 years...we're young, we should have to deal with chronic pain, medications, doctor's trips, CT scans, colonoscopies, diet changes, etc. It's such a personal and scary thing that I know when I get sick, I retreat because I don't want people to have to deal with what I'm going through with me...I've always thought of it as my disease and my problem, so I'd deal with it and return to real life when I felt better. Is it possible that your girlfriend might think like this?

There is also a pretty constant fear for me (and I'm sure people like me) that someone you are close to is going to leave you, if you have not been dating for a long time (happened to me twice before I found a great guy.) And this is something (if she's worried about it) that she'll get over on her own, but it takes TIME...it took me almost 5 years before I opened up about gut stuff with my fiance. The only thing you can really do is keep doing what you're doing and showing her that you love her for her and you'll be there for her regardless of what the intestines do...

I'm going to echo what Bob said about talking about Crohn's...I spent my 4 years of LDR in remission (except a few mini flares), but towards the end of it, I started getting sick. My fiance was great towards the end with me moving/trying to get fixed up, he listened to me complain about my stomach squeaking, constipation, tiredness, crying over not being able to eat veggies anymore and God knows what else...but sometimes, I just don't want to talk about it. Maybe it's not okay to pretend that life is hunky-dory, but sometimes you just WANT to. So I guess my advice is if SHE wants to talk about her Crohn's, let her talk about it. If she doesn't, then don't talk about it. Sometimes that hour long conversation is an escape from living on the toilet or curled up in bed with stomach pains.

Be a constant source of love in her life, keep open communication and don't forget to make sure that you don't lose sight of your or her needs while going through this flare. She's lucky to have found someone as wonderful as you and everything will work out.

And in the end, don't let Crohn's run or ruin your relationship.

Good luck.

I agree with all others.

First off, it is GREAT you came here and tried to find help and advice...possibly point her in this direction too, cause sometimes its wonderful coming here as a person with Crohns and knowing you can talk to others who actually understand!

I was in a LDR with my now husband years ago when we were dating.  It wasn't as hard on me then since I never flared up then like I do now, but I agree with all others. Sometimes a flare causes us so much exhaustion and pain that holding a phone up to your head (especially if you have a headache or are nauseaus ontop of it all) can just seem excrutiating. 

Even now that we are married there are times I'll talk about it, the Crohns, and other times I just tell him to bugger off and let me rest and he will and not take offense to it.  I'm pretty strong willed and people at my job know something is up, but since I always put on the smilie/happy/'it's all good' face, well, they don't know WHAT I'm hiding.  But I know about that, it can be a denial thing, or just protecting your privacy and such, but even as strong as we act, sometimes in our private moments-at home in bed or resting- well that's where we can let loose and be ourself more.

Don't worry about it too much...a couple times a week talking is better then nothing. 

If you really want to set up something to talk/spend time on phone more, or at least have a ritual, you could do what me and my hubby used to do back in the LDR day--if there was a night with tv shows we both really liked we'd call eachother and even if we never talked much we'd sit watching the fave tv shows 'together' and such---so even if we aren't talking, it's still spending time 'together' and such, and not as much pressure as needing to think up a conversation and all.  A little suggestion.  I always favorited those nights since they were fun, we were doing something together and no need to think and all.