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Crohn's Disease Forum » Support Forum » Help me understand....


04-03-2012, 02:00 PM   #1
Kayla92
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Help me understand....

I don't know what it is like to have crohn's disease. I know what it's like to love someone who has crohn's disease. I need help understanding him. His mood swings, I need to know how to support him. We're getting married in less than 8 months. I don't know how to be the support he needs... What support does he need? How can I help him? I have changed his diet and changed mine as well. We are doing this together. We do yoga (against his will of course) together to relieve stress. We are both quitting smoking together. I am changing my whole life to make his better and so he can feel better. I have done so much research that I could be a master on this disease. But my real question is.... What kind of support do you need from your significant other? Help me understand... Please.
04-03-2012, 02:16 PM   #2
Rebecca85
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Personally, I just need someone to hug me when I feel bad, not to hassle me when I'm exhausted, and doing jobs around the house is always appreciated.
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04-03-2012, 03:06 PM   #3
Bld
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Personally, I just need someone to hug me when I feel bad, not to hassle me when I'm exhausted, and doing jobs around the house is always appreciated.
This!
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Diganosed with Crohn's in 1996. Flaring since Sept 2011.

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6MP = 50mg/day
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Omaprazole
04-03-2012, 03:18 PM   #4
Astra
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Ditto ! ^^
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Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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No-one should make you feel inferior without your consent!

04-03-2012, 04:08 PM   #5
Chrismac
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Hi Kayla, it's so lovely to see someone here wanting to find out more to be a support.. hang in there. It will take time and patience but you obviously love your fiance enough to do it.

I'm getting married in less than 3 weeks and my fiance is in your position. But for me the biggest support is him listening to me rant/cry and holding me when it hurts. The mood swings and the grumpiness really suck for him and I feel so bad about it.. but he bears it so well.
Have patience and listen when he just needs to vent. Hold him when he needs a hug and if he says he is exhausted believe him! That's what I find hardest.. getting across just how drained and exhausted I am because it's not something you can see on the outside.
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Dx. Sept '01 - Undefined Colitis
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04-03-2012, 04:40 PM   #6
sawdust
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I think Rebecca has it there.

It upsets me sometimes that there are certain things I can't do when I'm really hurting. Symbolically, it's a real problem for me, as "the man of the house," I guess. I take Mrs Sawdust with me to all the appointments, CCFA stuff, etc she can attend. That's probably not for everyone, but it has really helped her understand things well... and understand me too.

She also knows my doctors/surgeon well, in case she should ever need to make decisions for me or call. They know her too. She knows where to find my list of meds if she should need it (I keep an up-to-date list in my cellphone as it's easy to update. I'm on and off these things often enough it's good to have an easy place to change it and find it). This means she has a full understanding of what drs tell me, test results, new symptoms, etc.

I must also point out, that for all this planning, it's never been necessary in my case. For all the times I was "sure" I was about to pass out and get carted off, I have yet to actually do it. I didn't include any of this to scare you. It's a comfort to me, so decided to include it.
04-03-2012, 04:55 PM   #7
DustyKat
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I can't speak from the aspect of a significant other, only from that as a parent.

I think over the years what I have taken away from my experiences is...to be there without judgement or even without speaking much of time but rather a presence, a hand to hold, an ear to listen and arms to embrace.

Resist the urge to ask at every turn...are you okay. Instead ask...is there anything I can do for you. When they are frustrated at the hand they been dealt nod in agreement and hold them. Tell them every day you love them and are privileged to have them in your life.

Dusty. xxx
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04-04-2012, 09:33 AM   #8
Kayla92
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I do all of that, but sometimes I just don't feel like I am doing enough... If that makes sense... I feel that there is so much more I can do... Given I have to fight with his doctors to get a script filled. I do that so he doesn't have to stress out. His doctor's have permission to call me on his behalf. I took on his medical things about 2 months ago, while we were still "dating" He's afraid that he won't be able to stand at our wedding, that he won't make it through the ceremony. Unfortunately, he is Catholic so it's like forever long! We are thinking of getting married in my church (Lutheran).

When he first found out that he had CD, he cried and all he was worried about was if I was going to love him less, or if this would make me hate him? We sat in the parking lot of his doctor's and For an hour I told him nothing in this world could make me love him less. If anything love him more. He is such a strong individual, as are all of you. THis isn't an easy thing to go through. For the victims nor the families and significant others. His friends have yet to get a hang of this and of course they pick on him about not going out. He has distanced himself from them and they blame me. "Oh you got her now, you apparently don't need us." It's only a matter of time before I blow up on every one of them. They don't see him in pain, they only see him when he feels okay enough to leave the house. I'm slowly getting the hang of this. He wants me to come to his doctor's appointments with him. Unfortunately due to the importance of my career it is very hard for me to take time off without my whole company falling apart. I do what I can. We try to schedule around work or during my slow hours.

Is there any certain foods that we should stay away from? What are some of the foods that really mess you up?
04-04-2012, 09:46 AM   #9
CLynn
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Kayla, he is blessed to have you in his corner, truly! So don't concentrate too much on thinking you are not doing enough. I personally think it can be harder on men to find out that they have a chronic disease that at times will lay them low. They feel like they are the "men, the protectors, caretakers, etc." I was a few years into my Crohn's when my husband and I started dating, and you know, although he was supportive, I don't think he ever really understood what it is like being sick until he was diagnosed with type I diabetes at age 35 (which is almost unheard of). Now he gets it, why I would tell him the doctor told me to get at least 7 hours sleep at night, the days when I just don't feel like doing much, not sure he understands the fear of surgeries, but you know.
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Diagnosed:1988
Previous meds: Sulfadiazine, Flagyl, Prednisone, Imuran, Pentasa, Asacol
Surgeries: re-section 2004
Currently taking: B-12 injections every 2 weeks, multi vitamin/mineral, fish oil (1000 mg), D3 (5000 mg)

Also lucky enough to have psoriasis as well.
04-04-2012, 10:44 AM   #10
Kayla92
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Is it normal for him to have these mood swings? Things make him angry easily... He is short tempered to begin with... His father is NOT helping matters. But he could get mad that I misplaced something, or something so minor like that. I have heard that steroids can cause those emotions and mood swings...

-He apologizes afterward, he knows I did nothing wrong... Other than misplace something, which I tend to do A LOT! 0.o
He's still the same person I met three years ago. That man is my best friend and the love of my life. I wouldn't have our lives any other way... I just wish they could find a way to get him on medications that will help put him in remission.
04-04-2012, 11:10 AM   #11
CLynn
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Oh yes, the steroids can definately do that. And we tend to have our depressive times as well. Personally, I don't tend to get angry with others, but then, I am a "bottler" by nature, ever the people pleaser. But I see this even in my husband, with his diabetes, and he doesn't take steroids. Your description put me very much in mind of my own husband, just had that yesterday when he was frustrated over not being able to get insulin. He was on the phone with me, raising his voice, etc. Later when I got home, he was calm again. Keep in mind that he is dealing with so much right now, it's all new to him, and knowing you have a disease FOREVER is so upsetting. There will be a medicine that will help, there will. And he can try the diet changes, vitamin supplements, etc. There is so much information here you can read, Kayla. Wish it had been here when I got diagnosed. Hugs hon! You are great!
04-04-2012, 12:39 PM   #12
Kayla92
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What kind of vitamin supplements should he take? or is that something that only his doctor will be able to tell us?
04-04-2012, 02:53 PM   #13
CLynn
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Some depends on where the ulcers are. And yes, you can find that out from the doctor, but I will warn, not all are very knowledgable on it, or believe in it, but you can find lots of vitamin and mineral supplement info on this forum, just go to the search forum button!
04-04-2012, 03:01 PM   #14
Kayla92
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Thank you so much CLynn!
04-04-2012, 03:08 PM   #15
CLynn
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No thanks needed, hon, but you are more than welcome!
04-04-2012, 04:58 PM   #16
DustyKat
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I hear what you are saying hun and there is a many a time we feel useless and helpless but what you are doing is wonderful and actions really do speak louder than words. Your presence, your support and your love is apparent to him and that is what matters, just being there for him no matter what. I know it doesn't seem like much when someone we love so dearly is suffering but unconditional love is priceless.

Dusty. xxx
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