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03-02-2012, 04:15 PM   #1
firecracker101
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Join Date: Mar 2012
Location: Colorado
Being a support system. Advice!

Well, I am certainly new to all of this. I met my boyfriend a mere 4 months ago, introduced by an online site, decided to meet, and fell in love instantly, and now are battling a long distance relationship. He was diagnosed with Crohn's 2 years ago, and the severity has increased a lot since then. I was aware of his disease from the very beginning, not exactly knowing what it was completely, but very supportive. I've done my best as his girlfriend (and future fiance! yes, it's only been a short while, but when you know, you know! expecting a ring by the end of the year) to research Crohn's so I can be more informative, also being so far away from him for the time being, is very difficult because he will call me when he has flair ups and I feel so helpless when he is in pain and I can't be there to help. In preparing myself that this is going to be my life and my future, it's honestly a lot to take in. I want to be the best support system I can be! I've also been researching recipes I can make when we are together (we see each other for a week, once a month) etc. I guess all I am wanting is advice from those who support someone with Crohn's, advice from those with Crohn's on what is the best way someone can be a good support system etc. I am ready to learn anything I can to help my man, and be the best I can be for him! I realized right away that this disease doesn't claim who he is, it's just a part of him. And I want it to be a part of me. So advice? Thanks in advance!
03-02-2012, 05:33 PM   #2
SarahAnne
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Join Date: May 2011
Location: Panama City, Florida

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First of all, thanks.

It's incredibly hard dealing with a disease that not many people are familiar with, and it's even harder on those closest to us. Your fiance is very lucky that he has found someone who is taking time to understand what he's going through, and how you can help him.

IMO, the most important thing is just listening. We (people with IBD) know that there isn't much anyone can do while we're flaring beyond back rubs and just being there for us. Just having someone to vent to who doesn't try to give you a ton of well meaning advice is priceless. Show him that you value spending time with him regardless of what's going on. There have been times when I am just too sick and weak to do anything, that's when my hubby and I snuggle on the couch and watch t.v. He has also learned what foods I can and can't tolerate, he doesn't put me in situations where I don't have any options if we go out to eat or to a friend's house.

It sounds like you are doing the most important thing you can possibly do for your boyfriend, which is educating yourself.

I wish you two the best of luck!
__________________
Dx'd Crohn's April 1996
Bowel Resection w/appendectomy Oct 1996
Gallbladder removed Nov 2005
4 procedures in March/April 2010 to remove a kidney stone
Dx'd Dyshidrotic Eczema April 2011
Dx'd Pancreatitis July 2011
2nd bowel resection 10/12/11 - I have 130cm of small intestines left!
Dx'd Chronic gastritis April 2012

Currently taking:
Cholestyramine powder 1-2x daily
Remicade 5mg/kg every 8 wks
Vitamin D3, B12
03-13-2012, 12:47 AM   #3
priscy777
 
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Join Date: Mar 2012
Location: Farmington, Michigan

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I feel related to you, I am totally new also in this journey with my husband. He was diagnosed, though, when he was 12. We met in 2008 and married in 2009. Last year the disease made his appearance again in his body, and oh boy, I have been sometimes very scared. He loves I hold his hand when he is in pain (but if I am there). We call each other frequently, I tell him constantly I love him and I am praying for him. He loves to get massage on his back and rub his head, he says it is very relaxing. He loves I listen or sometimes just being silent holding his hands. I grew being vegetarian mostly vegan and in my country we eat a lot of fiber. Now since he has been recommended to have a very low fiber diet, I am redoing my own diet too. We constantly seek for new recipes. All this time he has been sick I have asked to God if I could have that pain to ease his flare ups... I am still learning, a constant learning knowing that he needs the best. He is not alone and he is blessed to have you. Don't forget that you are not alone either. Best of wishes!
03-13-2012, 11:05 AM   #4
stellablue21
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Join Date: Mar 2012
Location: Crawfordsville, Indiana
Good afternoon everyone. Firecracker, I am in a very similar situation as you. I met my girlfriend about 5 months ago, we fell head over heels in love, and here we are. She has lived with crohns most of her life but has been in remission the last 4 years. Last week she started flaring up pretty bad. And it flipped my world upside down. She has really struggled with it previously and her family is very scared and so is she, which in turn pretty much made me panic. There's talk of her having to move back home to new jersey and were in Indiana. At times I just don't know how to handle it all. I love her so much I don't want to see her hurt. And I feel so bad for being scared and sad or whatever cause I can't imagine how she feels. I need to be stronger for her, not be on the verge of breaking down half the time. Tomorrow is our first gastro appt and I'm pretty nervous but I've been very strong for her lately and I will continue to be. Love, hope, and a positive mindset. Ill be praying for everyone struggling today.
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