Girlfriend With Crohns - how to react?

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Justin33

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Hey,

Im justin, im 17 years old, the same age as my girlfriend. I recently found out she has had crohns for some time, and been quite sick with it when she was younger, lots of surgery, etc.

I have no problem with it and i love her so, so, so much, but she wasn't the one to tell me. I found out accidentally from a close friend of hers who had assumed I already knew.

I understand that she will may tell me sooner or later, i am sure not going to force her to tell me, but I am wondering what kind of a reaction from me would be best to her, obviously a supportive one, but is there anything specific she, as a person suffering crohns, would find the most comfort in hearing from me?

Also if anybody would feels ok to shed some light on the emotions she might experience, please do so.

Thanks very much

justin
 
hey justin!
first of all, serious props to you for seeking out ways to be able to support her :) that shows a lot of caring on your part, so good job already ok?
i can identify with your gf quite well actually....im 19 y/o and have had crohns for a long time as well dealing with lots of stuff as a kid.
similarly, i didnt talk about my crohns with my bf (now ex, but will get to that in a moment)...i mean he knew i had it as we were friends through family acquaintance first for years before dating, BUT i was never very open and talking to him about any of the details. he basically knew that i had stomach problems, end of story.
it wasnt until one day when i was having an outpatient minor surgery (on my butt lol) that the talk opened up. i told him i was "goin to the dr" didnt get any more specific that that, but his mom told him that i was having surgery. so he got a bit upset that i wasnt telling him the full story i guess and told me to be totally open and honest with him, not to fake feeling ok if i was actually feeling crap, etc
i got really really sick last fall though and our relationship kinda fell apart, we just were not in the same place in life anymore.

SO i guess all of that wasnt relevant, but you see? very similar situations.
this is the main advice i have i guess:

1) get in her shoes. right now, get in her shoes and do your best to imagine what its like to live with crohns. theres TONS of stories and stuff on here that you can browse and learn all kinds of stuff! putting yourself in her place will help IMMENSELY in understanding why she acts how she does sometimes, you know? for instance...try to figure out why she didnt tell you about her disease. imagine if you had it...would you tell her? would you tell her about the crazy diharreah? about the butt surgeries? about the fact that you have to buy butt cream?
LOL it is hard, hard stuff to talk about. esp. in teen years when one fart basically you get made fun of for life, you know? a couple years ago i would not even have the confidence to be saying this right now, i would STILL be embarrased! but hey, it is life for us so why be ashamed? still, itsa a really difficult embarrasement to overcome.
these are all thoughts that are *most likely* running through her head...
2)sex--dont know how far you guys are along in your relationship but if its a potentionl for you two, realize that there are very legitimate reasons for her to say no other than "im not ready" or "i dont feel like it"
crohns can affect any part of the digestive system from the mouth to the erm...butt area. and obviously, the butt area is in very close proximity to the other place down there right? active disease in the butt area can make the other areas down there extremely painful and can even affect and invade some of our lady parts as well. (use the search in the above toolbar to look for 'rectovaginal fistula" for an example for a better understanding). SO kinda self explanitory, yes?
also in relation to that, hmm im not really even sure why im saying this....but here goes. my problem with sex was not really the pain aspect of it, it was fear of sharing the deep deep parts of my disease with ANYone. all my scars (again, lots of scars on me bum), all my marks, all my weaknesses would be revealed. these are things and ordeals i went thru that no one except my parents knew about. not even my closest friends. choosing who to share this deep part of oneself with isnt easy. make sense? its FAR more private that any body part, and i never entrusted it to anyone.
i hope that helps you somehow.....you dont sound like the type to be pushy like that at ALL, you sound quite understanding, but i hope that helps you see things that she may be feeling a bit.

3)ok. last thing is just this: be supportive. i know youre asking how to be supportive, but the thing is, its not really something that anyone can TELL you how to do. being supportive means YOU reaching out to her in times of need, of your own accord. not because she asks you to, but beacuse you want to. do you kinda get it? problems i had with my relationship was that it was always "do you want me to call?" "do you want me to come over?" "do you want anything?" it was all on me to TELL him what to do to support me.
just DO something. take her a bowl of chicken noodle soup from panera. bring her some french fries, a burger, her fave food whatever it may be! you dont have to spend long, it could just be 5 mins on your way to work you know?
just do something that your heart tells you to do. whatever is you, just be yourSELF. thats who she loves. dont try and change and become a differnt person because "thats what she needs for support". not at all, just be you and think of her and think..."hmm if my stomach felt like crap, i would want a warm blankie and a cold ginger ale"
thats it!
and of course, always be willing to listen, and TALK BACK. if you dont understand what shes talking about medically, then ask ok? that shows that you are intersted rather then just saying oh ok, yep, while really having no clue what shes saying.
yes theres a lot to learn and if shes been dealing with it for years then there might be a lot of explaining, but from my own experience, its nice to have someone WANT to explain it to you. let her bounce ideas off you. "well my dr wants me to start this medecine, but its a shot. im scared of shots"
dont just say "oh man that sucks" think about if you were her and present a your thoughts..."well....did you ask if it comes in tablet form? whats its name? how often is the shot? is it a big needle?"
see? does that make sense? i feel like im saying that its so easy, but its probably not, i do understand that. seeing it from this side its easy, but never having been in our position, it has to feel pretty overwhelming i guess that she has this whole world of crohns that you didnt know existed.
omg im so rambly, i should just stop lol

BUT i hope that helped a little at least, ill probably think of other things and will come back to post if i do.
ask ANY questions you want ok? whether its about the disease itself, emotions, medecines, relationships...anything!
and feel free to private messageme if you want as well ok?

good luck justin, once again...good good job for researching on her behalf. that shows so much effort already, i bet she would be totally touched if she knew that you had done that for her :)
 
i agree looks like our kello has covered it all in this thread,she really is the best person to answer you as she can identify so well with your girlfriend, hope all goes well,:smile:
 
Nice reply Kello!

Well I cant rly give u any more advice but i will tell you about my situation. I have been with my bf for 11 months now. And when we were getting to know eachother I had just got into remision and was feeling amazing. The first bit of remision is the best, coz u remember clearly how crap it was before. Anyway so u can imagine while I was getting to know him I was in a pretty good head space, so confedent and happy all the time. This was the time he fell in love with me. I told him about the crohns then, but neither of us had to deal with it then as I was healthy. And tbh I hadn't rly come to terms with the diagnosis.

Months later, I started feeling bad again. This was around the time I joined the forum. I hadnt spoked to my bf much about how the crohns felt for me or anything like that and I decided tht this was the time to tell him. We were so close by this point that I didnt mind, but it was still hard. I kinda felt like he didnt know how to deal with it. He hardly said anything. And if I got upset about stuff and started crying about something to do with feeling bad he would just hug me and I would get annoyed at him for not saying anything. I didnt shout at him or tell him I was annoyed or anything coz i knew it must have been hard for him. To see the happy, outgoing me he fell in love with change so much.

I realised that for him to help me, first I needed to help him. I showed him info sheets made from the NACC (I dont know where u live but here it is the charity for crohns and colitus which has alot of support info on there) about how to support people with crohns, telling him that it effects him too.

This seemed to help him alot. And he has been amazing ever since. He always tells me how strong I am and that I will be ok.

Like Kello also said, sex can be a problem. For me it is the fear that I will 'have an acident' as we say! This is hard because things were ok when I was in remission. But he is still amazing and never presures me.

I only worry that he will get fed up. I meen, he can walk away from this disease, i wish I could! I also know tht if he left me I would pretty much loose all my support as apart from my family, he is the only friend who I feel rly understands. I know how hard it would be to find someone as half as amazing as he is. I guess deep down I dont rly feel good enough for him. I feel like I need to be the girl he fell in love with.

Sorry! I seem to have written an essay!

But hopefuly this might give u a bit of an insight to what she might be feeling.

Just give her alot of reasurence. That one is a biggy I think.

Hope this helps!
xxxx
 
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You go kello! Kello the motivational speaker. I see a book in the future.
 
Oh, and Justin, I think it's wonderful that you are wanting to be so supportive of your girlfriend. Good luck to both of you.
 
I wonder if you've all frightened the poor lad away?!

But what Kello said so well. It's soo much to deal with when you're 17, hell it's enough when you're 40umm something.

Please let us know how you get on Justin...
 
aw thanks for the love all :) is the best feeling ever to know that my writings come across well!

LOL @ valentine, i read yours too....
+1 on this stuff especially!....

i knew it must have been hard for him. To see the happy, outgoing me he fell in love with change so much.
Click to expand...
exactly! that became the main problem for us...

I realised that for him to help me, first I needed to help him. I showed him info sheets made from the NACC (I dont know where u live but here it is the charity for crohns and colitus which has alot of support info on there) about how to support people with crohns, telling him that it effects him too.
Click to expand...
huh, thats a good way to look at it....i never really thought of that before. i think it wouldve helped a lot though in our case, it mightve helped him feel more 'included' i guess, and showed him that i was totally open to talking about it and questions and stuff

I only worry that he will get fed up. I meen, he can walk away from this disease, i wish I could!
Click to expand...
ah, i said this a few times to him. at the times he said "ill love you forever..." etc, and i hate to say this but at first i felt...skeptical? like, "are you REALLY up for this?". i told him that i was so afraid because if i could ditch myself, not be tied to myself and the anchor that is crohns sometimes...i felt that i really might just do it. and here is him who had the ability to so i guess i was kind of just dumbfounded at first that he didnt. well, didnt at first. i just couldnt belive that he would rather be with me, a complete train wreck at the time when there were so many other fish in the sea, you know?
that was at first, after a bit i truly belived that he would be there for me no matter what. i belived the promises he made.

I feel like I need to be the girl he fell in love with.
Click to expand...
that is how i felt at first. till i got the "dont pretend, just be real with me when you dont feel well" so i stopped pretending to be happy and ok when i really wasnt.
valentine- dont feel like you have to be ANYbody for anybody else ok? i know that my experience here doesnt exactly give you the warmest feeling about that, as when i finally showed my "true crohnnie colors" in our relationship, its when things got difficult. but if someone doesnt love you in all facets of yourself, then its not right for YOU. he has to love you whether you are healthy happy joking and lovey dovey just as much as he loves you when you are sick as hell sad cranky and angry with him. he has to love YOU. not you- crohns. yeah?
THAT is what i have learned and kind of right at this moment im really apprteciating it. not sure if i saw it like this before i wrote it all out here :)


hahah lol @ beth too, i HOPE we didnt scare him away! this is definitly a lot to deal with though.....maybe he took one look at the length of my post and ran off. ah!
 
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It's such an embarrasing disease a lot of the time the best support you can give is to listen when they say they want to be alone. This has nothing to do with you, but dealing with this disease you really need quite a bit of alone time.
Be there when they need you and be ready to leave them alone when that is what they need.

Now me, I don't get embarrased so everyone I know, knows what is going on with me and they know to get the heck out of the way if I make tracks toward the bathroom.
However, when I was in the hospital with my surgery, I would only let my best friend come see me. I didn't let my family, including my son, come see me until 2 days before I went home. I couldn't let my son see me in such a weakend condition. Not for pride, but rather I didn't think he could handle it.
Could you imagine your loved one being in the hospital having major surgery and them not allowing you to come see them? It's tough, real tough on loved ones; but that is what I needed at the time.
Once I got home I wouldn't allow anyone to take off work and stay with me, I made sure to do everything I needed by myself no matter the pain. Again, tough on some, but that is what I had to do.

So, be supportive when she needs you and be supportive when she needs to be alone.


Keith
 
IDK if anyone else has said this, but before she knows that you know, and then even after that, please try to research this stupid disease. It's hard enough to go through alone. Every little bit of knowledge and understanding somehow makes it better.
 
Hey everybody,

Thanks for the advice and kind words.

Don't worry i didn't get scared away! I forgot what I had googled for to find this site (Woops!). I do admit though it took me a while to get through all the posts, slightly overwhelming, i wasn't expecting such responses. :)

I think it's horrible anybody should have to go through life with this disease, let alone have it ruin relationships with people around you - totally unfair. :(

I have just a couple of questions.

1) With remission, are you completely symptom free?
2) Are there any emotional effects this can have on a person; aside from possible depression?
 
Definite emotional effects. It can (does) cause anxiety, low self-esteem, feelings of helplessness... it takes a huge emotional and mental toll.

I wish I could answer re: remission, but I haven't been there yet.

I know ppl here can answer it though! :)
 
As far as the remission it varies from person to person. when i went into remission for 2 years it was like i never had the disease, i was back to normal pre-crohns stuff bathroom wise and i felt like nothing was wrong. then i hit a time where i was in and out of the hospital but now i guess you could say i am in remission now except i still have the big D all the time, just no pain and very little bleeding, with the right medication everything can be controlled.

the depression is a big part as well as there is a fear of going out in public sometimes because you never know when the feeling might hit you and you have to go. imagine going to the beach swimming out to a sand bar with friends and then all of a sudden you have to go. it makes you want to stay on the beach, or going to a pool and diving in but being afraid the big d will hit you wile in the water.... things like that get you really worried. so there are alot of other worries but they can be delt with
 
Justin33 said:
Hey everybody,

Thanks for the advice and kind words.

Don't worry i didn't get scared away! I forgot what I had googled for to find this site (Woops!). I do admit though it took me a while to get through all the posts, slightly overwhelming, i wasn't expecting such responses. :)

I think it's horrible anybody should have to go through life with this disease, let alone have it ruin relationships with people around you - totally unfair. :(

I have just a couple of questions.

1) With remission, are you completely symptom free?
2) Are there any emotional effects this can have on a person; aside from possible depression?
Click to expand...

1) a very valid question, but unfortunately it is one with no answer. some people have a remission where they feel 90% better except for one nagging symptom, maybe fatigue for example. some people feel so great that they dont even feel like they have crohns at all! and some people never really even get anything like remission, just ups and downs in feeling fair to terrible, but never good.

2) yup theres lots of emotions that people feel as a result. the fear and embarrasment as was mentioned. hoplessness, as this is a disease that can NEVER be cured. your gf will always have it, and at times it can be very difficult and a long and frusterating process to find a treatment that actually helps. you feel like just giving up at times. lonliness is a biggie too...its not like crohns is RARE but definitly not as well known or talked about as say, asthma you know? its hard to find people to talk with about it who really understand what youre going through. many of us have satisified that feeling of loneliness thru this forum as we finally find an entire collection of people who live as we do every day and truly understand.
if you want you can tell your gf to come check it out, ok? whenever she decides to tell you or you guys talk about it and her crohns is out in the open.

i thought of a couple more things regarding help/support as well:

-personally, im very independent and i dont want people to get things for me or do stuff for me, i dont wanna be 'served' i just wanna do everything you know? i know that that part of me comes across to people very strongly, so i think when im sick the people around me who dont know me as well as say my parents, get stuck. in those times when i feel such crap that i cant even get up to make myself a meal i really DO appreciate someone helping me. but when im healthy, thats something i would normally get for myself, you know?
the point of this is that your gf's underlying personality is also a big factor in figuring out how you can best help and support her....if shes normally a do it herself type and you leave her be when it comes to daily things like that, when shes sick dont automatically assume that she still has that attitude. you see? not sure if this is making sense but i hope it is.
oh man that was rambly.

-one of the most hurtful things is to feel like others are dissapointed or angry at ME for being sick. being angry at the crohns is fine, as at times im angry at it too. many of us on here have heard the line "i feel like you use being sick as an excuse". it hurts and while we understand that the family members and partners have a difficult time too, if feels like the person is angry at you for how youre behaving when you feel like crap in the first place. try not to let any behavior that you dont like get in the middle of your love for her. that behavior is just one facet to her being. the facet that you see right now and love (i assume shes feeling well now?) will ALWAYS be there. maybe she will behave a bit differently when she is sick, i know i do, but the 'healthy' side is always there too. and YOU have the power to bring that side of her to life even when shes not feeling well :) make her laugh, make her smile, just for a moment, you can make her forget about what hurts, ok? you can dislike that she has crohns, hell we ALL dislike that we have it! but dont dislike HER for having it, you know?
and *if* a situation should be too much for you, you find yourself confused, unhappy, etc (not trying to be a downer here i promise) please please PLEASE tell her how you feel. be honest. even if what you have to say you fear will hurt her feelings, TRUST ME lying to her and saying that you love her when you dont hurts worse than anything you say out of honesty.
i hope that all makes sense LOL

as always keep asking anything you need to :)
 
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Woah! Loads more posts in this thread since I was last on here!
Kello, I dont try to be someone who I'm not around him, but I still can't help worrying about it at times.
Also at your last post - I wish you were my boyfriend! ;P hehe
xxx
 
you are a sweet kid, justin.

honestly, she may feel like s***, alot. and she may be grouchy. just never EVER tell her "deal with it" or suggest it's in her head. i had a boyfriend that i started dating my freshman year in high school, (a few months after i was getting sick one in a while), broke up my junior/his senior yr and got back together my senior year. he would always say "well why don't we just go do something" or i'd mention how i felt like s*** and one day he kind of exploded and said "ALL these doctors you've seen can't seem to find anything wrong with you. and they can't find something that's not there so you ain't got nothin wrong with you" needless to say i dumped him shortley thereafter (last oct. which was a month shy of 6 yrs). and a few months later, i was diagnosed. the moral to that story is if she tells you she fells unwell, or that she tells you she can't do something with you for a reason that may seem dumb, it may be her way of telling you she doesn't feel well, depending on how long you've been together and how comfortable she is with telling you gross things.



-asfar as remission goes, i would count it as feeling well; being able to do all the things in her daily life (and then some) with out any problem.
-and emotions, yes and there can be many. personally, i get anxious (and anymore of little things. it's sort of ocd now tho; my hands have to be really clean before i eat and things need to be organized but i think the organization is b/c i can't fix myself, so i'll fix what's around me) but i get anxious alot with bathrooms b/c i've been in flair since jan/feb and haven't been able to leave the house for the past month. i've become way more of a pessimist that i would have ever imagined, i'm a grouch when i feel like death, i'm often just genneraly sad. my senior year i was so sick that i had to be home schooled b/c the symptoms were so bad and since i was out for the whole year, my friends felt as if, even tho i wasn't at school, i still needed to go out with them and go to partys, and beachweek, and even sit and talk on the phone for hrs but i didn't feel like doing any of those things. so i talked to 100+ people on a daily basis when i was in school which went to maybe 50 when i was first out (i counted those as friends) which dropped 20, and now, it's 4. one hard for me to count b/c my "bestfriend" is a real B. and the moral to that story was, if she gets really sick, and god forbid needs to be out of school, remind her friends that she's really sick and it's not an excuse for her favorite hot teacher to come out to the house every other day. and that she's not dissing them.

this is a horrible, unfun, crappy disease. so jsut be nice about it. and if she's sick, let her be sick! lol. don't be a "will".
 
it was nice to have a read of this discussion. I was shy with boys before I got crohns, 5 years later and 2 bouts of surgery under my belt I pretty much won't even go on dates. It was nice to read comments from girls who understand this stuff.
hurray for forums!
 

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