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03-12-2013, 08:42 AM   #1
Karen
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Spouses of Crohnies Support Group

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If your spouse has Crohn's come and join me as I have been there for my loving husband since December 2005.

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03-12-2013, 09:56 PM   #2
Jmrogers4
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I'm joining
Hubby dx'd 1993 - 2 months after we got engaged. We will have our 20th anniversary in October
Thanks for starting this one Karen, what a great idea.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
03-13-2013, 07:09 AM   #3
Karen
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Thank you for coming into my GROUP !!! I am happy to see someone else come along besides myself so thanks again !!!
03-14-2013, 04:06 PM   #4
SandyUte
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You are definitely not the only one on here with a spouse with Crohn's or another irritable bowel disease. thanks for starting this thread.
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03-14-2013, 05:35 PM   #5
Karen
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You are definitely not the only one on here with a spouse with Crohn's or another irritable bowel disease. thanks for starting this thread.

Thank you for coming and joining us !!!
03-14-2013, 07:12 PM   #6
SandyUte
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Your starting this group, Karen, was exactly what I needed, and what I think this forum lacked until now. I had been trying to figure what my role here was, because I, like you, have a vested interest in Crohn's disease. I just didn't want to sit around and play games here though (as fun as I find it). The more serious threads, I haven't felt qualified to participate in much because, well, how does one give advice/feedback when I am not the one with the disease? And not an expert in any sense of the word? All I could do was basically give virtual hugs. Whether we be spouses, parents, or friends with someone with an IBD, it affects so many of us at a very personal level. It will be wonderful to share ideas and thoughts with each other about how to support the ones we love.
03-14-2013, 07:18 PM   #7
Karen
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Thank you Sandy ... for your feedback !! Myself I have been around it a lot !! What I mean is just this

3 ... friends in our church have been diagnosed with it & have had to go thru the surgery to remove a lot ... thankfully my hubby has not had to go thru the surgery and I am praying that he never does !!

4 or 5 ... cousins back home in New England { New Hampshire, CT, New York } have been told that they too have it ... some have had it since they were children and have had I mean A LOT REMOVED and they are still battling the disease and so I have gotten a lot of tips from them of what to look for and what to do ...

So you see ... I am wanting to be there for other's with this AWFUL DISEASE and I so I am there for you as your there for me !!

So thanks again for sharing !!
03-14-2013, 07:38 PM   #8
SandyUte
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I have friends with family members with Crohn's, a sister with diverticulitis just had major surgery (although not considered to be an IBD), I have a small case of diverticulitis myself, my sis has had many pre- cancerous polyps removed from her colon, and my dad has ulcerative colitis. It affects more of the population than people realize, me-thinks.
03-14-2013, 07:40 PM   #9
SandyUte
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I also hope your husband never needs surgery.
03-24-2013, 10:08 AM   #10
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Joined! Karen you have been so loverly so far thanks!
03-24-2013, 12:38 PM   #11
Karen
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Joined! Karen you have been so loverly so far thanks!
Your most welcome ... glad to see that you found your way here !!! We are here for you !!!
03-24-2013, 04:27 PM   #12
SandyUte
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I agree. It will be really nice to be able to support both those we love (our spouses) here, and ourselves as some of those affected by Crohn's. Hopefully, our little group will keep growing and we will have more supports/people growing with it, but even if it doesn't take off a lot for awhile, we can still be here for each other.
Welcome, Mrswill!
03-25-2013, 10:04 AM   #13
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I'm glad you all are here. Any tips on dealing with someone (my husband) who just got diagnosed? He is happy for an answer finally, but is fearful of the disease progression. He can be all over the map with his feelings - understandably so - and I wonder if there is any way for me to help?
I would appreciate any words of wisdom you have for me
03-25-2013, 11:06 AM   #14
Karen
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ICU ...

1 very important tip that I have to offer is have him keep a FOOD JOURNAL and that will be a big HELP for him if something FLARES UP then he can look back at what he ate to see just what it was that did it !!!
03-25-2013, 12:53 PM   #15
SandyUte
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Hi, ICU. I remember those days all too well. We sometimes still have them because, well, it is scary. I try to gently remind my husband (and myself) that we can only deal with the here and now. Let him know you are there for him, no matter what. It will help both of you, and we should be our spouses biggest supporters, shouldn't we? It can be difficult when emotions are varied and you don't know what to expect from him, but if he has an anchor, something to hold on to, he will calm down as he gets used to the idea. And we will be here for both of you. Maybe you can get him to join the forum. (And yes, it is nice to finally have those answers.) I hope this can help a little. Hugs!
Sandy
03-27-2013, 11:01 AM   #16
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Hi,

My husband has been diagnosed with Crohns disease in Feb 2012. His complications got severe and doctors have recommended CIMZIA. Little tensed on how to expect for the future. This forum is great idea for support group.

Thank you!

Regards
Smitha
03-27-2013, 11:16 AM   #17
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Started using the diet Wills mum uses as we have no idea when the colonoscopy will be. Seems to be working pretty well had a verry good day yesterday out of bed for the whole day amd in nowhere near as much pain. Just need to make sure i make him flare again when its time for the test.
03-27-2013, 12:37 PM   #18
SandyUte
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Dear Smitha, MrsWill, and all,
I really, really like this forum for a support group, too. And I'm glad other spouses are starting to show up, like you, Karen and all of those who have posted. Especially for those new to Crohn's, it is hard to know what to expect. From my experience here on this forum, each person takes a different course. I would look around at the different threads and find those threads that you relate to. Also, as I basically said above, try not to worry about the future, just the here and now, and deal with the things that are going on at present. If your spouse has a good GI and is working to keep the flares under control, that is nine tenths off the battle. I take that back, 99/100ths of the battle. My husband was in very serious condition by the time they diagnosed him, but once they did get the diagnosis correct, things have only gotten better over all. It doesn't make the disease go away, but with a good GI, things have improved greatly. I hope this helps. We will be here to support you as well.

I'm curious, Mrs Will, what kind of diet does Will's mum use? Doug's dietary needs seem to change constantly.

Thanks, and God bless all.
03-27-2013, 03:19 PM   #19
Karen
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Hi, My husband has been diagnosed with Crohns disease in Feb 2012. His complications got severe and doctors have recommended CIMZIA. Little tensed on how to expect for the future. This forum is great idea for support group.

Thank you! Regards Smitha

First off I want to SAY WELCOME ABOARD !!! I too am glad to see that some other's have come to be with us here ... I was starting to worry that NOBODY was going to come onboard ... but we have a good number so how about we all add each other to our friends here and then we can be there for each other !!

Well I will return again soon and share more !!!
03-28-2013, 07:21 AM   #20
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Wills mum originally was on a elimination diet when she first fell ill 15 years ago. It comprised of astronaut food double diluted and filtered water! Slowly of the course of a few years she introduced other foods and now has a pretty good diet. The main exceptions for her are anything milk or gluten based( she can however eat in moderation cream and cheese and sour natural yoghurt). These things are still a complete no go. Gluten is guaranteed to cause a flair up even though before the crohns she was not coeliac. as she went through the diet she realised somethings would make her worse than others during a flair up.

Will is on a halfway diet between his mums diet now and the space food. At present its NO onions,leaf salad,sweetcorn,milk,cream,cheese,gluten,(bread pasta etc) no tomatoes (or anything too acidic). No beans, Peeled fruit (ex orange is juice only) no brown rice no alcohol nothing too spicy ( a hard one for Will) and bottled water only (with the exception of black coffee).

The diet seems to be working well but we can't make Will fully better until he has had his colonoscapy. We are hoping when there has been a full diagnosis that he will go on a mix of meds and diet for a while and then hopefully diet only.

The reason his mum was diet only was because she found herself allergic to most of the medication they gave her. Subsequently she has been diet controlled the whole time. She been in remission for 7 years and when she goes to the doctors for other things the can't believe she has crohn's and takes no meds. Sometimes shes a bit naughty and will put cows milk instead of soy milk in her tea and sneak a small bite of a cake. But she knows her limits. She has never had an operation and still has all of her bowl. Im not saying diet is for everyone but i really thing there must be more too it then they would have people believe.

I am not against medication and i think people should do what works for them but i think it is important to try different ways. If Will can be like his mum that would be great but we don't know if it will work for him just because it works for her. He has been eating like this for a week though and he had been in bed for about 12 days before only getting up to use the toilet and was physically and mentally done in.

A week into the diet and he is out of bed he drove the car for the first time in 2 weeks and was able to make himself dinner. He's out of bed now playing guitar and seems a lot more active and in less pain. He still needs to rush off to the loo but he's in a lot less general discomfort.
03-28-2013, 07:23 AM   #21
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Icu: You just have to tell him things will change but you will be there. Its going to take a while to adjust and it must be scary for him. Does he know anyone else who has it? maybe he could try and meet people and see that everyone is different. Just hold his hand tell him hes still the most beautiful man in the world and that no matter what comes his way you will be with him. Good luck !
03-28-2013, 07:29 AM   #22
Karen
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MrsWill ... Thank you so much for sharing here in the group !!!

03-28-2013, 08:59 AM   #23
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MrsWill- he is talking to people about it now- for a couple weeks he would not. He is finding that a lot of people know someone who has it and they have learned to manage it. I think that is helping.
He tried gluten the other night and all seemed fine. Then 2 days later- a mild flare. I think we'll do gluten free but know he can cheat occasionally without horrid results.
The food journal is helping!
Thank you all for your input. This is not a easy puzzle to figure out and hearing what has helped others gives us much needed and appreciated things to try or consider.
03-28-2013, 09:25 AM   #24
Karen
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ICU ... Good to hear that the FOOD JOURNAL has helped out ... So, keep track of everything that goes in ... NO MATTER what it is !!
03-28-2013, 11:16 AM   #25
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The food journal is a brill idea we have been keeping one too. Because its the fitst huge flair we have also been keeping track of his weight.
03-28-2013, 12:49 PM   #26
Karen
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Very good !!!
03-28-2013, 01:01 PM   #27
SandyUte
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wow! so much I want to say, but I'm not supposed to use my phone (my email access) while it is charging (long story) for right now, so I will have to come back. I really, really appreciate all your comments.
03-28-2013, 02:26 PM   #28
jwfoise
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I play both sides... my wife has Crohn's, since well before we were married (and we are coming up on 23 years), and I have UC. And no, we didn't meet through a support group.

@ ICU - I love your avatar.
03-28-2013, 03:09 PM   #29
Karen
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Welcome JW to the group ... Good to see a MALE join us !! So, feel free to share whatever you like we are here for you too !!!
03-29-2013, 09:43 AM   #30
Karen
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Wishing each one of the members here in my small but growing support group all the best on this special day ... !!

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