girlfriend with crohns - how to react?

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Justin33
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/8/2009 6:30 PM (GMT -7)   
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

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/8/2009 6:36 PM (GMT -7)   
Hi Justin, and welcome to HealingWell,

First up, Crohn's can have a number of very distressing and embarrassing symptoms, and many of us wait a long time before we tell people close to us what we're going through. Please don't feel that this is personal; this is typical of many people with this disease.

Also, because your girlfriend is still quite young, she might still be coming to terms with what this illness is doing to her body and emotions. I've had this disease for 16+ years, and I still have a hard time with self-image and self-esteem. It can be a really brutal illness to live with.

Your girlfriend might not have told you about your illness yet, but I'm guessing there may have been some signs that have made you suspect that things were not quite right with her? For instance, does she sometimes cancel a date at the last minute, or seem to be very tired and "uninvolved" with you emotionally? Does she sometimes avoid getting too close to you physically, or disappear to the bathroom at crucial moments during a date / conversation?

I'm asking these things, because it may give us some ideas on how you can best support her.

It's nice to meet you. I think your girlfriend is lucky to have someone so caring in her life :-).

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 8/8/2009 6:38 PM (GMT -7)   
I think that the best thing that you can do when she tells you is to try to understand the disease the best you can - ask her lots of questions, read up on it, and if she has any embarrassing symptoms, don't get grossed out and just try to laugh it off and make her feel comfortable not having to try to pretend to "be normal" in front of you if she isn't feeling well. I know when I first started dating my last boyfriend, I actually got sick for the first time on our first trip together, so we were stuck in a hotel room together and I had to keep sending him out of the room to go to the hotel gym, go get food, etc, while I was in the bathroom because I didn't want him to know. He never realized I had done any of it, even after I was diagnosed a year later, but it was really stressful for me trying to find excuses for him to leave every time I did not feel well (which was a lot!).

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 8/8/2009 7:05 PM (GMT -7)   
Hi!
 
 I was diagnosed when I was 16 yrs old and a sophmore in highschool, so it was very hard for me to tell people about it, especially explain it in detail.  A lot of what this disease involves can be very embarassing for someone to tell other people, especially at a young age.  When I started dating my current boyfriend (Im 22 yrs old now), all I told him was that I had Crohns disease...nothing that was involved...but he went out on his own and researched it and then came to me to talk about it. I thought that was very sweet of him.  However, some people dont want others to know all the details until they are comfortable talking about it.  Id say give it a while and see if she comes out to you and says anything, if she does then open up to her and ask her questions, and PLEASE for the love of god dont say things like "ewwww, or grosss".  Just be supportive and understanding, and try to understand that as much as you may try or want to you will NEVER completely understand what she is going through when she is sick, so just be there for her.
Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Imuran 50mg, Vitamin B12 (injection), D, and C tablets. Fish Oil Tablets, Cats Claw, Slippery Elm, and Reishi.
 

Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 8/8/2009 8:36 PM (GMT -7)   

Hi Justin, welcome!

First of all. I admire you for taking the time in research and asking so many good questions, and your gf is very lucky to have someone so caring!

Like Nanners said, Dont take it personally she didn't tell you. It's very hard to deal with this disease as it is let along have to tell other people. I still have a very hard time dealing with at 25 having it for 7 years now.

The bf I had when i was in the hospital getting diagnosed at 18,  didn't come visit me once in the hospital (left him right away) but met my now fiance when I was 19. Who the same went on his own did his research and knew more about it then I did. He is always at the hospital with me when I need to go.He remember's doctors names,meds I am on. Foods I can and can not eat. He doesn't bother me or ask me questions when I am in the bathroom to long except for ' are you ok, do you need anything' . This is the most helpfuly anyone who can be. He also puts up with my talk of diahhra (get use to that word) My fiance is also very use to seeing me throw up. He'll even empty my bucket and clean it, bring it back to bed for me.

So when she does tell you. I think these are ways you can support her.


25 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach,pantesa. I've been on and off imuran,entocort,number of others I can think of. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Now on Humira and back on Imuran as well.RA pains all gone!


Sunaddict
Regular Member


Date Joined Jun 2009
Total Posts : 354
   Posted 8/8/2009 8:37 PM (GMT -7)   
sorry 'like IVY said'
25 year old woman. Crohn's all my life but diagnosed at age 18.Been on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach,pantesa. I've been on and off imuran,entocort,number of others I can think of. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Now on Humira and back on Imuran as well.RA pains all gone!


Justin33
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/8/2009 9:44 PM (GMT -7)   
Hi everybody,

Thanks for the information, this is a great community by the looks of things!

[quote]It's nice to meet you.


Likewise and thankyou :)

[quote]Your girlfriend might not have told you about your illness yet, but I'm guessing there may have been some signs that have made you suspect that things were not quite right with her? For instance, does she sometimes cancel a date at the last minute, or seem to be very tired and "uninvolved" with you emotionally? Does she sometimes avoid getting too close to you physically, or disappear to the bathroom at crucial moments during a date / conversation?

Yeah there were some signs. She did indeed avoid getting too close to me physically, infact, she has always been strange with the whole touchy feely thing, but I wrote that off as a personality trait. Not quite to the point of pushing me away, but initiating any sort of intimacy, she seems to lack confidence.. Not to mention some hospital gifts and things I discovered lying around her room she had tried to hide, but I respected her privacy and didn't ask why she had them. She has seemed kind of distant and uncomfortable on some dates too, where others she's bubbly as anything. Also she regularly is away from school, i feel like a bit of an idiot now, I sometimes sarcastically tease her about being a bludger!

She has always had a hard time opening up to people about her feelings and other things (unless I give her a bit of a push), I've known her for quite a while, is this possibly a result of the emotional stress she must have?

I can't say i've noticed her going to the bathroom and unnatural amount of times though. Are there good and bad periods of the disease/effects?

Thanks again everybody! I appreciate it very much

Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 8/8/2009 10:03 PM (GMT -7)   
Justin - Crohn's is characterized by periods of flare-ups and remission, so she can have weeks or months (some unlucky people have longer than that) where she is feeling horrible, but then go for months to years symptom-free. A lot of the people you see on this forum and elsewhere on the internet have some of the more severe cases - some people have very mild disease and can even go through decades being fine (unfortunately, this isn't the norm, but it can happen!).

It's a bit of an emotional rollercoaster because you can literally go to sleep one night feeling your best, and wake up the next morning feeling the worst you've felt in your life. When I first got sick, it came on midday in the middle of a 6 hour long bus ride! Stress can also trigger flare-ups, so if she's going through a rough period in her life, it can exacerbate her symptoms as well.

I really encourage you to keep asking questions and read up on the disease, it's really complex but honestly, really fascinating too. Everyone here on this forum is really a great group of people!

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/8/2009 10:26 PM (GMT -7)   
It's also important to remember that it can actually *hurt* when you touch a person who is already in pain, so this might help explain why she sometimes seems more withdrawn than at others.

Another thing to consider is that she might have scars from surgery, or other physical damage from Crohn's, that she doesn't want you to see yet.

This is a conversation some of us had quite recently about the difficulties we with Crohn's can face maintaining friendships and relationships. As you'll see, even the people who are "well" and "in remission" still struggle with pain and fatigue, and this makes it difficult to relate to people as well as we'd like.

All the best,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/8/2009 10:28 PM (GMT -7)   
And this is a link to the Spoon Theory, a concept that many of us use when trying to explain our fatigue to others.

Remember, just because we *look* well and *seem* well, it doesn't mean that we *are* well...
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Post Edited (ivy6) : 8/8/2009 11:31:40 PM (GMT-6)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/8/2009 10:42 PM (GMT -7)   
And this is another recent thread on the types of support we *like* to get.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


rack
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 8/9/2009 5:06 AM (GMT -7)   
i agree with valerie 3 ...also in the fact this is a great forum makes you aware your not alone :)......i think your girlfriend is lucky your seeking out advice even if she doesnt know...when i first got diagnosed 10 yrs ago it was a relief as docs were welling me it was all in my head for 2 years of agony...i was very lucky my husband at the time wasnt great but didnt understand all i wished for was him to read up and learn about it but he never ...but saying that my friend read up every detail she could find on it and seek out how she could help and what would help me so i waas very lucky to have good friends....even now i dont plan too far ahead as u never know with crohns like has been said in this forum 1 min your okish next so ill you cant move.....i do wish you luck just be there for her and find out what you can if you feel this is right for her..that way when she tells you you can comfort her and make her aware you are there for her :) good luck and i wish your girlfrind all the best

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 8/9/2009 10:32 AM (GMT -7)   
I think your girlfriend is very lucky to have such a mature and caring boyfriend, heck, many adults don't feel compassion or even articulate themselves as well as you do so good for you (and lucky her)!!!

Dropping hints to her is one approach, it may make her feel that you might already know and then she may end up feeling comfortable enough to discuss it with you, it's really hard to speak for how another person will react because we may all have the same disease but we likely all deal with it as individualistic as our diseases can actually be from one another.

Good luck, I hope all works out well.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/9/2009 1:51 PM (GMT -7)   
Just listen to her and don't make any assumptions..

Justin33
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/13/2009 3:57 AM (GMT -7)   
Thanks everybody for the advice and kind words. as many of you have said i know i'll never understand exactly what it's like to be in her, or any of your shoes, so I won't pretend I can, but I will try as best I can so I can support her in the best possible way if she has a flare up and decides to tell me.

thanks again, you may hear from me in the future with questions !

justin

CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 8/13/2009 4:53 AM (GMT -7)   
I think the best thing you could have done is come here. To me that should show her, your commited to her and her feelings, your commited to her feeling better, and even getting the right response from you, so in my book thats a huge plus for her, and if it was me, then after she finally tells you, if you tell her you already knew or thought you knew, i'd also say you came here, shows you spent extra time to make her feel better.

misspriss82
Regular Member


Date Joined Mar 2008
Total Posts : 221
   Posted 8/14/2009 7:11 PM (GMT -7)   
I agree with everyone else... but I was also going to add:

My fiance started dating me before I was diagnosed with Crohn's, so we both learned together what the disease was all about. However, BEFORE the diagnosis, we were very hush hush about formerly "gross" things like bathroom situations. NOW? We make it all funny!! He comes up to me and sings high pitched "pooooop!!" haha I feel a lot less self-conscience b/c he is willing to laugh with me about the situation & be caring rather than saying, "eww, or I can't handle this"

I guess my point is its easier when someone can be open to it!! My fiance also changed his diet with me and it has been fun doing it together. And its nice to have the support of someone you love.
26 y/o, diagnosed with Crohn's Disease at 25 y/o
Asacol 400mg 3 pills 3x daily
Entocort, 3 pills daily
Upset stomach daily, tired all the time (except when on Prednisone), occasional abdominal pain and sometimes mysterious rashes
Getting married Oct. 2009 and am ready to get into remission!!


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/15/2009 3:52 AM (GMT -7)   
How are things going, Justin? Have we helped at all, or would you like some more advice?
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Justin33
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/15/2009 4:03 PM (GMT -7)   
Hi ivy,

Things are just fine, she hasn't told me though. I'm not really sure what more advice you guys could possibly give, I've done a lot of googling as well for most of the information on the actual disease. So if anyone has anything else you can think of that might benefit her (or me) in some way, please make a reply. You guys have helped so much, I'm no longer dreading the point when she tells me! So for that I thank you all sincerely and I wish you all the best in the future!

I will still be following this forum though for any updates; also is there a place to donate for research on crohn's?

Thank you again,
Justin

craizy_daizy
Regular Member


Date Joined Feb 2009
Total Posts : 50
   Posted 8/15/2009 4:07 PM (GMT -7)   
I don't know if you have facebook...but there are groups for Crohn's on there, where you can donate money and invite friends to join the cause ;)
craizy_daizy

-22 y/o alaskan
-resection oct '08
-diagnosed nov '08
-vitamin b12 shot
-starting remicade soon


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 8/15/2009 4:26 PM (GMT -7)   
Look up the CCFA - they do a lot of fundraising for Crohn's. Hope this helps!

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 8/15/2009 4:44 PM (GMT -7)   
Justin, I have a feeling that you're Australian, so you might like to phone Crohn's & Colitis Australia and ask their advice. They can also give you relationship counselling and advice, if you'd like that.

It might help to keep telling your gf how much you like her as a *person*, not because she's pretty and not because she's brave, but for all those other qualities that have attracted you to her. It is very easy for our self-image to become bound up in our disease, and it might help her to know that there are other things that you notice and like about her. And if she feels that you see more than her body, she might be more ready to tell you about her illness.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


xaunhat98
New Member


Date Joined Aug 2009
Total Posts : 1
   Posted 8/26/2009 5:27 PM (GMT -7)   
Marked! I will come back to check this soon!thanks a lot.:-)
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