I feel awful/ guilty

[Roman]

My gf has crohn's disease. It's been pretty rough on her for about a year now. She's been in the hospital 4 or 5 times having to stay on average 5-6 days each time. Once was a 10 day visit. At first I was really good at taking care of her. Really put the effort into it no matter what it took. We have a 4 year old boy and a 2 year old girl too. So every time she had a flare it completely overtook her. She wouldn't even be able to get out of the bed and we'd eventually end up going to the ER.

Lately though, I've been less and less supportive and not as caring as I was in the past. She was on prednisone for a while and her mood swings were horrible. She would snap and tell me to leave or say she didn't want to be with me anymore and I would take the attitude of "Fine. Be by yourself." I never would leave though and eventually she would come around. Now the mood swings are depressive in nature instead of anger.

It's hard for me to deal with this disease because I've never been sick. I don't even remember the last time I had a cold. My whole family got the chicken pocks and I didn't. It's hard to relate and empathize because I haven't got a clue what she's going through.

I need to help her get through her depression. She has left me to go stay with her mom and has been gone for 4 days. She says she doesn't want to be with me and put me through this. And me being inconsiderate for her needs isn't helping at all. But I've realized that I would rather put up with her being sick everyday (and I DO NOT want that to happen) than to be without her.

Right now she's on Humira once a week and she just got off prednisone.

 

[kello82]

hi roman
first off, youre showing a lot of character by seeking out help and advice for how to better support her. so good job on that ok?

i guess the main thing that i need from people when im sick is understanding. i already feel awful enough that i cant be a productive member of society. i feel like a waste of space, im not fun to be around, i look like hell, the list goes on believe me. and the second that someone reaffirms any of those feelings, its pretty devastating. i just want to be told that its ok to be the way i am.
keep in mind the prednisone REALLY messes with you. it honestly can make you feel crazy and ready to crawl out of your skin, so maybe the anger and depressive outbursts are not truly her. if they ARE pred induced, then i guaruntee you that she is just as confused by them as you are. the confusion then just adds to the angry feelings, and honeslty i will end up sobbing for hours and not know why when im on those meds.

your question makes me think of this thread:
http://www.crohnsforum.com/showthread.php?t=6036

especially post #5 by Colt. the original poster is asking questions about diet as well, so those may not apply to your situation, but colt's post very accurately describes (at least for me) what it is like to be sick and feel unsupported.
give it a read if you can.

youre doing a great thing by seeking for advice to help! i appreciate it very much whenever someone takes the initiative to do something like that for me, so thank you

 

[ErinDF]

Roman -- You should think about checking out the CCFA website, I'm pretty sure that there is info on there for family of Crohnnies.

I think the most important thing though is to remember that, though this illness is HORRIBLE for your GF, that this effects you too. You need to think of ways to help YOURSELF cope with this disease...and they're not going to be the same as how she copes with it. In some ways, its especially tough for you because you don't feel sick, so you feel like you shouldn't be depressed or frustrated...but its totally normal that you do.

Have you researched whether there are any support groups in your area for family and friends of Crohnnies (or alternatively of people with chronic conditions?) Do you have any way that you could perhaps see a therapist or a social worker? Do you even have a friend or family member who you trust who you could vent to?

After that...try to make it work (and try to remind yourself that this is not your fault, or your gf's fault) and that it won't be this bad forever. Hopefully your gf and her doctor will find a treatment that works...but until then, she really does need you right now more then ever (and I bet the kids do too).

Good luck! Kello is right...its a good sign that you are seeking help....thats a very good first step.

 

[Jeff D.]

Roman I have Major Depression Disorder, just diagnosed yesterday, and I think the best thing for her would be to get her some help. Get her to a psychologist and if she doesn't like that one then try another. Ask her if she would mind going and don't force it on her. I was the one who actually told my parents I needed to see someone. Crohn's Disease is a serious disease and depression is a serious disease and they need to be treated so she can live her life.

I also wanted to thank you for coming on to here instenad of breaking up with her. It shows a lot of character and I respect that. There have been many people on here who have lost husbands and wives and friends, even some have lost relatives who stopped caring. Thanks for not giving up and get her the treatment she needs.

Best of luck my friend

 

[My Butt Hurts]

Hey Roman - good for you for seeking help here.
My husband has been very supportive through the 7 years I have had Crohn's. At one point as I was completely exhausted laying on the couch, I could see he was a bit frustrated with me, and I told him "Imagine you have the flu, but it feels like it's never going away.", and I saw him finally understand how I felt. I'm not saying it's forever, I am so close to remission right now and feel 95% great, but if that helps you better understand how she might be feeling, then good.

If you aren't feeling so close to her, try being as nice as you possibly can. My husband and I have been together since high school, so things were a little "stale". I started flirting with him a few months ago, and he's been flirty and more loving than he used to be, and it has been way more than wonderful ever since. Even if she is being crabby, pretend it's not happening. A good mood breeds a good mood.

And tell her exactly what you told us. You would rather have her sick then not at all. Tell her that you want to help her get better together. Maybe she could find some emotional support here too, you might mention the site to her.
Good luck!

 

[fromthegut]

Hi Roman.. good for you to seek out some support for yourself. You must feel very sad and angry at thios disease for what it is doing to your girlfriend and you and your family.
I know when I am sick I feel very guilty and undeserving of support. I feel as if I am ruining other people's lives and it is all my fault. I also have a hard time accepting love and nurturing because I don't feel I deserve it. It's not you it is the disease and the depression that goes with it. This disease really affects my self esteem. I feel a lot of shame.
What I needed ...and no one had the courage to do was... for someone to keep me accountable for my behaviour and words. I had some people do that who weren't close to me and I respected them. It really is a loving thing to do. Tell your girlfriend that it hurts to hear her say she wants you to leave. That it really makes her angry that she seems like she is givng up. I know you would be afraid to do this for making her hurt more but she is being hurtful to you.
I read a good section in a book called " The Dance of Fear " . There is a good section on dealing with a serious illness from both the caretaker and the care recievers point of view. It helpd me to see how people in my own family are reacting and feeling.
I thank you for your post. It has really helped me see what it is like for my family and friends to deal with me as I am the sick person.

 

[machines]

All I can say is WOW. You have shown more character and commitment than you think. You indicated that maybe in the past you stopped caring as much as you used to but from what i have read, you have more than put that to rights. Keep the faith and I hope that thing work out for BOTH of you in the near future.

 

[Roman]

I guess all I can do is revert back to my old ways and stay there. I think understanding this disease is going to be all but impossible for me. I just need to learn how to accept it. She's stuck with it and there's nothing she or I can do to get rid of it. I know once she sees that I've changed back to where I need to be and she realizes that she doesn't need to deal with this on her own she will come back home.

I'm really going to talk to her about going to a psychologist. I don't know if her insurance will cover it or not, but surely her gi doctor can work something out. In the mean time I'm going to educate myself about crohn's and the drugs for crohn's and their side effects. She read a book about macrobiotics, and I'm starting to read it now, that really seems to work. Hopefully that will put her into an extended remission. She's been struggling for a while now trying to get it to subside for a while.

Thanks for the words of advice and encouragement. Now if I could only get her to be more optomistic....