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

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New Member

Date Joined Jul 2010
Total Posts : 3
   Posted 7/14/2010 12:01 AM (GMT -7)   
Howdy everyone,

Firstly, Let me state that I don't have Crohn's myself but I've come to this forum seeking some insight and perhaps some advice. My girlfriend, who I've been close to (but not always dated for the better part of six or seven years) had been diagnosed with Crohn's earlier this year. I've done an awful lot of reading about the effects of the disease physically, emotionally, and in combination. I've got a basic, perhaps rudimentary understanding of the disease but I'll keep learning more about it.

She and I are currently in an LDR (long distance relationship) and I very much want that to change. She's been struggling with the Crohn's, I can tell, but she's been so stalwart and fierce about it. She gets up at the crack of dawn and charges into work even when she's in terrible pain. She has a strong passion for things, especially when they're expressive, and that's something I've always admired greatly about her. Even in the face of her situation, she never loses that spark.

Anyway, since the Crohn's has ramped up -- flare up is the term, yeah? -- she's seemed to pull away from me quite a bit. Where we would talk every other day of the week, we talk now maybe once or twice every seven days. I understand she's in pain and I absolutely want her to rest but our LDR, being an LDR, isn't so stable without communication. My mind wonders, her mind wonders. We worry ourselves to death over things without talking them through. She's always had an issue with depression and I have a feeling that her withdrawal to herself is 'making her sicker with worry' so to speak. I don't want to press buttons and push her into doing something she doesn't feel comfortable or up to doing but beyond being patient and learning about her situation, I'm not sure what to do to provide some kind of support or assurance to her. My words, I feel, are sometimes outweighed by the symptoms.

Probably, I'm harping on about relationship issues in an improper place for this sort of thing. I apologize if that's the case. Does anyone have any thoughts about our situation, or any insight from experiences with a similar one?


Veteran Member

Date Joined Aug 2007
Total Posts : 884
   Posted 7/14/2010 6:24 AM (GMT -7)   

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!    
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety.  Too many meds to list them all.  =) 

Regular Member

Date Joined Jan 2010
Total Posts : 244
   Posted 7/14/2010 6:50 AM (GMT -7)   

Hi Korine

I am in a similair situation with my some with my son. It is a tough call. maybe some ground rules need to be established. when you talk, is the Crohn's the first thing to come up? sometimes my son wants to talk about anything BUT Crohn's.  my wife and I have some real trouble keeping our mouthes shut. She might not want to hear how much you understand, and know what she is going through. None of us, nomatter how close we are to the person can know what they are going through.

Crohn's is a HUGE deal to the person diagnosed and the people close. time is needed to come to terms. One thing that is very hard to wrap your head around is that it is a life sentence(for now).

the one thing that makes the lifestyle changes a little easier for my boy is that we all make the changes with him. when he needs to stay away from certain foods or treats, we take it out of the household diet.

she may need to rant and scream at the unfairness of it all. let her. it's not about you.

because of how Crohn's manifests, there are intimacy issues that may make her uncomfortable. that can be a delicate subject to broach.

maybe take some time and take her some soup. go with her to a doctors appointment. find out about her diet. let her know that you are in it for the long run. let her know that, as far as you're concerned, she may have Crohn's, but Crohn's doesn't have her. hope this helps

bob b
13 year old son diagnosed at 9,
one month of pred at beginning 
2 years of immuran ineffective
SCD seemed to help(less pain gained 8 pounds in three months)
considering Remicade

Regular Member

Date Joined Feb 2009
Total Posts : 269
   Posted 7/14/2010 7:11 AM (GMT -7)   
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.
Diagnosed 2005.  42 year old female living in UK
Current medication  -  infliximab infusions, ranitidine, Vitamin B12 injections, anti depressants
My partner has UC & Crohns

Veteran Member

Date Joined May 2010
Total Posts : 8384
   Posted 7/14/2010 9:04 AM (GMT -7)   
Everyone's talked about the pain and frustration of Crohn's, but what I would say is that when I am flaring I am TIRED. Bone tired. It is exhausting to just get through a regular day. I'm not a phone chatter, and I don't know, Korine, if your girlfriend likes a phone chat or not, but the last thing I want to do when I'm tired is talk on the phone.

In my LDR (which led to my boyfriend moving to my city and our marriage), we tried to get together once every month. We only had to maintain the LDR for about 6 months, so it was not something we thought would go on very long, and maybe that made it easier.

Veteran Member

Date Joined Jan 2010
Total Posts : 794
   Posted 7/14/2010 9:12 AM (GMT -7)   
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

artist guy
Veteran Member

Date Joined Jan 2010
Total Posts : 1373
   Posted 7/14/2010 11:43 AM (GMT -7)   
who ever is reading this thread, if you have children with cd reread comedy bob's post.it is a wonderful post and I encourage all loved one's with cd to reread bob's post

artist guy

Veteran Member

Date Joined Jan 2003
Total Posts : 1668
   Posted 7/14/2010 11:49 AM (GMT -7)   
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.

tall girl
Regular Member

Date Joined Apr 2009
Total Posts : 68
   Posted 7/14/2010 12:46 PM (GMT -7)   
All great replies above! I especially agree with the fact that when I am flaring I am so tired I can't even think of talking on the phone. I grin and bear the pain while working and going to school. Most of us (who still can) power through the pain and the tired and the sick to go to work/school/life every day and it is rough. (She gets up at the crack of dawn and charges into work even when she's in terrible pain.) But we have to keep moving...what else is there to do? So after a day of pretending to be fine even though my body feels like it wants to explode and after dancing around "do I eat and be in pain or starve and be in pain" all day when most of us are already malnurished, when I finally get home, all I want to do is curl in a ball and sleep, if I can. My best friend and I had the same problem when I first got sick. She was/is hundreds of miles away and for a long time couldnt understand why I was withdrawling from our relationship. (We were used to talking most every day) She came to visit me (during a year long flare) and saw first hand how tired/sick/depressed I was and started to get it. After that we agreed to at least text most every day and set up a specific time and day of the week to have our long chats. If I feel really bad that day I text to reschedule.

Also, she may feel (deep in side) that she isn't sure you should have to suffer through this with her and may feel bad about knowing that you will have to endure this heavy burden too. I rely so heavily on my husband during "bad" times. He sacrafices certain trips or activities b/c I am so sick, He misses work to hold my hand at the docs office and I know he actually feels the pain I am in. He also has to be strong for me when inside he probably wants to scream or cry b/c he has to be strong for me. (I love him more than anything in this world....I am lucky...I got a good one!) I have often wished this disease would go away just for his sake. I hate that we both have to suffer. This is just one of about a million emotions she could be feeling...she is probably overwhelmed by it all right now. She is also probably somewhat embarrased about her symptoms and may be wary of sharing certain things and may be afraid

With time and understanding from both of you, she may find this all a bit easier to deal with and things will get better. She may even learn to laugh about some of it soon. Continue to be patient, show her understanding and reaasure her you are there for her. She might also get relief from joining this or another forum for Crohns....It is such a releif to know others understand this embarrasing cruel disease.

Hang in there!
26/year old Female- Crohns active since June of 08- DXed (finally!) March 09- Resection June 09- remmission for 1 year- flaring now - Starting Remicade on 7/15/10- Scared again after a year of denying I was sick.......... Thankful I have a good support system behind me.

New Member

Date Joined Jul 2010
Total Posts : 3
   Posted 7/14/2010 1:15 PM (GMT -7)   

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.

Regular Member

Date Joined Apr 2009
Total Posts : 87
   Posted 7/14/2010 1:51 PM (GMT -7)   
I just wanted to tell you the world needs more people like you. My fiance left me as soon as I was diagnosed with Crohns... in the hospital no less. His lack of support has caused me to develop unhealthy habits. I will not let anyone know about my diagnosis (only my Mom knows) and I have pretty much written off trying to date despite the fact Im symptom free now. It kills me as I was such a healthy 25 year old one day and 3 days later everything in my life turned upside down. I suppose I am blessed that it happened before I got married but the situation still makes me sad. Your compassion and willingness to learn is refreshing and a reminder that there are better people out there.

Currently taking: Remicade
Recently tried 6MP and developed pancreatitis
Allergic to mesalamines

Regular Member

Date Joined Jun 2010
Total Posts : 337
   Posted 7/14/2010 3:47 PM (GMT -7)   
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. :-)
Diagnosed 2002 at 18. Remission for about 7 years. Getting back into the swing of things at 26.

75mg Imuran, 750mg Balsalazide 3x day, Tapering Pred.

Maybe flaring...maybe not?

New Member

Date Joined Jul 2010
Total Posts : 3
   Posted 7/14/2010 4:21 PM (GMT -7)   
Yeah. I do think I've probably been a bit too gung-ho about talking up her situation. I think my initial reaction was that I wanted to fix things and so I tried to reason things -for- her. That was a bit of a mistake on my part. Since then, I've eased off and the extent of talking about the disease is usually, "So how are you feeling today?"

If she's well, then I'm elated, of course. If not, then I'll usually change the subject to something more light-hearted.

Not speaking much definitely bothers me, as I'm a huge blabber mouth. But just from all of the responses here, It's clearer to me that talking, for her, sometimes may not only be just an inconvenience but uncomfortable. With that, I feel much better about waiting and being patient.

jas, tooth - Thanks to both of you for the words of encouragement. I wish both of you the best of luck in whatever you do, as well.

Lady G
Regular Member

Date Joined Sep 2006
Total Posts : 321
   Posted 7/14/2010 4:27 PM (GMT -7)   
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.
29 year old Crohns patient of 10 years. Currently on Imuran and Vitamin B12 injections.

Veteran Member

Date Joined Jun 2010
Total Posts : 1548
   Posted 7/14/2010 4:46 PM (GMT -7)   
You have gotten some good advice with all the above comments, I will add my 2 cents since my boyfriend and I did long distance for 5 years and have now lived together for 2.

When we first started dating I was in remission and never told him about my disease. Then in the first year of long distance I got very sick, it took months for me to get over my flare. When I was so sick my main priority was getting through a work day and getting home to sleep. There were weekends when we were supposed to see each other and I was so exhausted and sick I would tell him not to come. He would push it because he wanted to see me, check on me, take care of me. He would try to be supportive and say we don't have to do anything, I'll just come see you and we can lay around watch movies and not leave the apartment. I was so miserable I just didn't want anyone there and can remember several times when I told him, I do not want to see you do not come visit me. I am lucky because he cared enough to be patient even when I was a mess and not the nicest about it.

To this day, if I am in a lot of pain and not feeling well I want to sleep in the guest bedroom and not together. It has taken a lot of patience and communication but we have both learned from it. When I can I try and not shut him out and let him help and he tries to give me space when he can tell I at a miserable point. She is lucky to have you because it sounds like you are very supportive and trying to do what you can to help. The best advice I can give is give it time, you will both learn a lot about each other.

It really took me until we lived together to really let him take care of me and let him on everything.
Diagnosed with Crohn's in 1998, father has UC we were diagnosed at the same age.

Currently on 10 mg Prednisone, 4g Sulfasalzine, VSL#3, Vitamin C, Calcium, Magnesium, D3, Chlorophyll, and LDN. Previously on Remicade, just stopped Humira after 9 months, wasn't working.

No surgeries so far.

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