You people rock...

[TheMeddler]

I don't have Crohns but joined this forum because my boyfriend was diagnosed last summer after a serious flare and a hospital stay. He was very well for a whole year (on azathioprine) but now all of a sudden it seems like it's all happening again, and I'm scared for him. His personality changes completely when this hits, and it kills me to see him sort of lose the will to live... anyway, I'm sure you all know the story from the other side of the fence.

But in reading this forum I came across the thread "you know you have Crohns when", and it made me laugh so hard! It's inspiring to see that so many of you can live through this and still retain a sense of humour. It gives me hope for my boyfriend. Hopefully with each flare he'll get a little better at dealing with the emotional impact of this. BF is 50 by the way, he's not a kid.

Is there any advice you would give the (non-live-in) girlfriend of someone heading into a Crohns flare? Should I back off? Keep checking in? Or are you too sick to care if I fell off the face of the planet?

Lee

 

[DustyKat]

Hi Lee and :welcome:

Just popped by to welcome you to the forum. I don't have Crohn's, my daughter does, so I can't really answer your questions but there are heaps of friendly and experienced people on here that will be able to give you a heads up. Good on you for joining so you can help out your boyfriend.

Welcome aboard!

All the best,
Dusty

 

[Dexky]

Hi Lee, like Dusty, I am the parent of a chronie. You are right, the people on here are some of the brightest, funniest people on the planet. So much so that I'm beginning to think that sense and a sense of humor may have some connection....hmmmm. There are times when they don't feel like playing games obviously because it's a very serious disease. But, for the people who love them, they are still the same people all the time. For better or for worse is true for love and friendship. Stick around!!

 

[Guest]

hi Lee, welcome to the forum, and i'm glad you like our little corner of the net

in answer to your question, i think it is really important that you continue to show support and encouragement to your boyfriend, and the fact that you've joined here goes a long way to show just how much you want to help him. Crohn's (or any IBD) can be a lonely illness - usually the worst parts of it happen when we're by ourselves - and by its' very nature it can also be isolating.

to know that you are there for him, seeking out advice & support, understanding and giving him unconditional love - these are the best things you can do right now. we all need someone on our side at times like this, and it's the kind of thing that makes relationships stronger.

if we can help at all, just shout - we'll do our best.

 

[ameslouise]

Hi Lee and welcome!

You are sweet to join on your BF's behalf to learn more about coping with this disease.

This disease is different for everyone, and everyone deals with it differently. When things are bad for me, I want to vent and be pissed off for a little bit, I want to talk about it, get it out of my system, then I feel better.

Others want to be left alone, some feel bad for themselves and want sympathy, some are really crabby, some are sad - you'll have to find your way with your BF and see what the best way is to be there for him, even if it means leaving him alone!

You will find lots of info and support here. Hope the BF is feeling better soon!

- Amy

 

[Astra]

Hi Lee
and welcome

just to concur with everything that's been said, and to add that this is a place for you too, Crohnie or no Crohnie!
come to vent or scream if you need to!
If things get a little hairy, walk away, sometimes we need to be alone, just don't take it personally, it's not you, it's me, springs to mind. lol
you've shown great compassion by the fact you're here, so you're doing just smashing!
lotsa luv
Joan xxx

 

[Gibby87]

Another thing, never underestimate the amount of pain he says he's in or look down on him when he just wants to lay around or just be alone. Just about everyone on here goes through that, people not believing what hell our fellow Crohnies are going through and it makes it that much harder when you are suffering and no one sees you and all you want to to be cut some slack here and there. Always listen to him and take him seriously when he describes the disease.

 

[Silvermoon]

Hi Lee. Welcome to the site.

Definitely keep checking in. We (as patients) DO care if you are there, sometimes we are just to sick or lost in our own little world to aknowledge how much we DO care that you are there.

Speaking from personal experience, I also feel an incredible amount of guilt when I am in a flare... guilt for not wanting to do anything, guilt from not being able to do anything, some embarassment about how our body is acting... but with the guilt, we feel more depressed and do less, then more guilt because we are doing even less.... etc.

Stick around.... here and with your bf, cause he sounds like he is pretty lucky to have you. He may try and push you away... but keep talking, let him know you are there, you love him, and no matter what happens or how he feels, you will still love him. Learn about the disease together (as it sounds like he still may be learning a bit too)... and when things get bad between you guys, come vent with us, and maybe we will have more tips for you.

I wish you well.

 

[dreamintwilight]

I agree with Silver. When I am flaring I tend to feel guilty about ruining my husband's plans because I'm not feeling well, even though I know he doesn't look at it in that way. I would also not express how much pain I was experiencing and would kind of tough it out on my own. I always appreciated when he would offer to get medicine for me or keep refilling my drink or something so I wouldn't have to get off the couch. OR even if he cleaned up the dishes (which I normally do) without me asking him to because he knows I'm not my normal capable self.

Even if he doesn't outright ask for help, empathy and support are so important! Like others have said, you'll just have to figure out in what ways he feels supported and like you understand

I think it's awesome that you sought out your own support system to deal with this by finding the forum. That just goes to show you really do care about him and what he's going through! Hope to see you around here more.

Welcome!

 

[Aura]

Hi Lee
Welcome - it's great that you have joined :ybiggrin: fab! I laughed hard at that thread you read on 'you know you've got chrons when.... Please stick around and let us know if we can help you in anyway.

Take care

 

[TheMeddler]

Thank you everybody, you really do seem like a great bunch, and alot of what you've written rings so true to what I've been through.

I got to see first-hand last summer how people don't seem to believe Crohns patients...before my BF was diagnosed, his doc wouldn't believe him when he explained that he seemed to be allergic to the oral form of Pentasa, and kept dismissing both his Crohns symptoms and his description of the allergic reactions. He was finally given the rectal form of Pentasa which he seems not to be allergic to but it didn't do much good. After about three more unhelpful visits to his family doctor he gave up on doctors, and then, when he crawled into an emergency room after dropping 30 lb in 3 weeks, the angry reaction from the specialist there was "you should have come here AGES ago, do you have a death wish?"

It was very frustrating. I think sometimes men struggle with describing illness, though. They say "I use the washroom alot" when they ought to say "I can't leave my house because I need the bathroom every ten minutes." Also men play down pain, especially a man his age.

Well, anyway, I'm bracing for a bumpy few months. In our case, he's open enough with me not to push me away because he's embarrassed about symptoms. Instead, the issue that alienates and isolates is sex. When he's well, he's a VERY sexual person with a high sex drive. When he's sick, that part of his brain and body switches off like a light switch. Unfortunately, that part of his brain seems to be where I reside. I think in his mind I'm tangled up with the issue of sex, and thinking about me, when he's sick, just draws his attention to what he has lost.

Anyway, I'm very grateful for your kind welcome!

Lee