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03-29-2013, 10:01 AM   #31
mrswill
 
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Happy easter!! Hugs!!
03-30-2013, 10:18 PM   #32
SandyUte
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I'm finally having a moment to respond more like I wanted to. Mrs. Will, that information about diet you posted really is interesting, and appreciated. I am having Doug read about it and seeing if he thinks any of it can help him. Actually, I am going to try a variation myself, for some of my own health reasons.

I have occasionally had some difficulties concentrating long enough to say what I want to (the reason I didn't say more previously). I have seizures and a history of stroke, and recently had a couple mini strokes or TIAs. In fact, I'm in the process right now of a six day EEG, or brain wave test, but thank goodness I am having it done as a home test, and not in the hospital. Whew!

I say that not because I want pity, I just want to explain why I may be slow to respond to more serious issues at times.

I again want to reiterate that I think it is great that this support group is forming. (THANKS KAREN!) I'm also glad we have at least one male here, too. The more of us, and the bigger variety, the better we can help each other.

I hope everyone is having a good and happy Easter weekend, and if not Christian, having a great weekend just because it's a great weekend. (YAY! I get the electrodes off my head in the morning and can wander out of the house --- at least after I scrub the paste out of my hair. I know it's a good weekend for me.)
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03-30-2013, 10:18 PM   #33
SandyUte
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so now I'm too wordy.
04-02-2013, 03:13 AM   #34
Monika Anna
 
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Hi Karen, my wife has been dealing with Crohns for 20+ years. We actually met on a blind date in Oct 2000 and have been together ever since.We have one daughter who is 9.

Currently Monika is in hospital, she has been home for a three month stint early in 2012, but has been in one of four different hospitals since July 2010 with lots of ICU stints, operations etc., one being 10.5 hours, sepsis, skin grafts, femoral fistula for vein access and it goes on and has currently four stomas' and one enterocutaneous fistula which has formed now, also on TPN every day and fluids to prevent dehydration.

Monika came home on Saturday night for the night, with us turning the house into a hospital for the night. It had been 11 months since last time she was home.

It has been a trying time for us, but we keep on going, she is an exceptionally strong minded person. We don't know how much time we have left as a family but we just keep going. Thank you for creating this as I do not have a lot of people to talk to about these issues but also need to not talk about it sometimes as I need some time out and so does our daughter.

Thank you, take care, Matt.
04-02-2013, 07:17 AM   #35
Karen
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First off I want to say WELCOME ABOARD MATT !!

I would like to thank you too for coming in and joining us here in my support group I have been praying that more members would find us and come in and be with us and so to come back from Easter and to find a new member { you } that is great !! So, I am sure that you will be a blessing to all of us here !! So, feel free 2 share whatever you like and whenever you like ... We are a family here and we are here 4 each other !!

As you can see my signature tag my loving hubby has had Crohn's for 7 years and I just got the news that my #2 son has his issues that he has to deal with ... It was a surprised to both his father & I that he got this ... so he is living on his own and so I am praying that he will take care of himself !!

Well once again WELCOME and feel free to send a friend request anytime and I do have FB too so give me a shout out anytime !! Until next time !!


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04-02-2013, 11:39 AM   #36
SandyUte
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Yes, Matt, welcome aboard. Oh my, your story sounds heart wrenching. we are here for you, however, anytime you need a listening ear. God bless you and your family for taking care of your dear wife. She is blessed to have you.
04-03-2013, 12:36 AM   #37
rehopeh
 
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You have the honor of being my first thread subscription!

I'm a newbie here, and I've been married to my husband for a little over 2 years. He's been diagnosed with Crohn's since 2008 (at 18 or 19 years old), married since 2011 (20 years old). I knew what I was getting into, and fell in love with him anyway. We also have a 1 1/2 year old son who is the pride and joy of both of our lives.

My husband, William, has just undergone his first surgery, an ileostomy at 22 years old, and is experiencing some complications. I'm so glad this group is here! I've about decided that it's almost (not quite, I'm sure, but almost) as hard to be married to the disease as to have it.
04-03-2013, 04:56 AM   #38
52rockwell
 
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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 !!!
Hi, My wife has Crohn's and has been taking Humira for about 5 years.Looking forward to talking with others ,and learning more about how to help her.
Russell
04-03-2013, 07:38 AM   #39
Karen
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You have the honor of being my first thread subscription!

I'm a newbie here, and I've been married to my husband for a little over 2 years. He's been diagnosed with Crohn's since 2008 (at 18 or 19 years old), married since 2011 (20 years old). I knew what I was getting into, and fell in love with him anyway. We also have a 1 1/2 year old son who is the pride and joy of both of our lives.

My husband, William, has just undergone his first surgery, an ileostomy at 22 years old, and is experiencing some complications. I'm so glad this group is here! I've about decided that it's almost (not quite, I'm sure, but almost) as hard to be married to the disease as to have it.



I am glad to see that your here for your MAN and that your there to be there for him thru this up's and down ... Yes it is hard to be the supportive spouse thru this but we can do it ... One TIP is to keep a FOOD JOURNAL and be sure that he keeps track of everything ... I mean everything and then if he has a flair up ... then he can look back at what he ate to set things off so so do know that we are all here for you !!
04-03-2013, 07:40 AM   #40
Karen
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Hi, My wife has Crohn's and has been taking Humira for about 5 years. Looking forward to talking with others, and learning more about how to help her. Russell


Russell ... Good to see another MALE come in and join us here in our ever growing group here !! So, feel free to add me as a friend as I am there for you if you need a shoulder to lean on !!
04-03-2013, 07:44 AM   #41
Karen
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UPDATE ... We have 10 members here in our group and so I am very blessed to see the support that we all have for each other !! Feel free to add each other as a friend so that we can be there for each other when we are needing someone !!
04-03-2013, 11:13 AM   #42
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Hello All,

I have just joined this forum and am already finding it helpful. My significant other was diagnosed with severe crohn's and had a multiple surgeries many years before I came into the picture. I cannot even start to understand the disease or imagine what she is going through. We have been together for almost three years now and it has been an uphill struggle ever since. For all my life, I have been the helper. Unfortunately, I cannot help. Medically, I have no knowledge of it, emotionally, I am there but I don't feel like that is enough. What have some of you done to help out your spouses during the hardest times of Crohn's? She just started Humira and I hope it helps some of the flairs and effects of the disease but I can't help feeling bad only being there on the sidelines.

Neil J
04-03-2013, 11:51 AM   #43
Jmrogers4
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Welcome Neil, hope the Humira does the trick for her
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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
04-03-2013, 12:11 PM   #44
mrswill
 
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Hi Neil i know its hard and if your a fixer its even harder to stand back and watch the person you love suffer. Sadly theres nothing you can do except give emotional support (with a bit of housework and cooking on the side). Its very important though and not to be under estimated!! When physical health takes a slide a persons mental heath can suffer to. My husband struggles with depression and with the sudden onset of his symptoms he started to feel like his whole world was crashing down. Its important to try and make sure you keep a sense of normality. (as much as you can i know its not easy). Make sure your partner knows you still think there wonderful (and not useless) as Will kept trying to say. You also need to make sure you take time to keep yourself mentally well. I found it took a huge tole on me. I wasn't sleeping properly because i was being kept awake or being woken up and i wasn't eating properly because Will didn't want to eat or his diet was restricted. I've found people on here very supportive and helpful and I hope you do too. Good luck with the new meds!
04-03-2013, 12:42 PM   #45
NeilJ
 
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Hi Neil i know its hard and if your a fixer its even harder to ...
Thanks Mrswill,

The eating portion was the hardest for me to get used to originally. She was very open about it when we first started dating and three years later, I wouldn't change it. Thank you all for being here and supporting each other with similar situations.
04-03-2013, 03:37 PM   #46
Karen
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To our little corner of the world ... Glad to see that your here to show your support for your loved one !! So, make yourself at home and feel free to ADD any of us as a friend as we are all here for a reason ... SUPPORT !!! So make sure that you suggest to her to join us here as well as to also keep a FOOD JOURNAL and to chart everything it helps ... so take care and see you soon !!
04-03-2013, 04:46 PM   #47
ICU
 
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Hi Neil i know its hard and if your a fixer its even harder to stand back and watch the person you love suffer. Sadly theres nothing you can do except give emotional support (with a bit of housework and cooking on the side). Its very important though and not to be under estimated!! When physical health takes a slide a persons mental heath can suffer to. My husband struggles with depression and with the sudden onset of his symptoms he started to feel like his whole world was crashing down. Its important to try and make sure you keep a sense of normality. (as much as you can i know its not easy). Make sure your partner knows you still think there wonderful (and not useless) as Will kept trying to say. You also need to make sure you take time to keep yourself mentally well. I found it took a huge tole on me. I wasn't sleeping properly because i was being kept awake or being woken up and i wasn't eating properly because Will didn't want to eat or his diet was restricted. I've found people on here very supportive and helpful and I hope you do too. Good luck with the new meds!
Ahhh I'm not alone. I like your advise on taking care of yourself too. Cooking for one is not as much fun, and neither is eating everything in front of him, or eating alone. His appetite goes down and I loose weight Any tips??
And I tend to let his moods affect me a bit too much- need to learn to somehow stop that. I always say I wear the empathy shoes a bit too tightly...
04-03-2013, 04:50 PM   #48
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Just as an update Will seems to have stoped falring and has an apontment for a colonoscapy . consultation on the 17th. He is also still waiting to hear from berklee about a scholorship. We have decided that if we move to Boston (as its Berklee the music school). That he will take mads for his time there. I just hope they find what there looking for.
04-03-2013, 06:11 PM   #49
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Hi all!!!
this forum is going to be a sanity saver for me!!!
joking aside ive just got home from hubby being admitted to hospital with a bad flare up. hospital were fab so now we have to wait until morning to see whats going on. hated leaving him there but I know its the best place and he said himself I need my sleep which is true as im gonna be looking after him lots!!!

feeling a little lost tonight :-(
04-03-2013, 06:19 PM   #50
mrswill
 
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Sleep well cottonbud you need to be in tiptop shape to support your man!! X
04-03-2013, 07:19 PM   #51
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Thank you mrsWill!!
the advice and support on here looks amazing.
04-03-2013, 08:01 PM   #52
Karen
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cottonbud ... You will make lots of friends here that will share some good tips and we each have something to share and feel free to add anyone here as a friend { count me in } to be there for you with lots of prayers and support ... So, keep your head up and stand strong & here is a BIBLE VERSE that helped me get thru those long nights that I had without my hubby when he was in the hospital when he found out that he had Crohn's ...

Phil. 4:13 - I can do all things through Christ which strengtheneth me.

So take care and do come back and keep us updated !!!
04-03-2013, 08:52 PM   #53
NeilJ
 
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It's nice to know that there is someone else out there going through maybe not the exact same thing, but pretty darn close. I have issues with the whole food thing as well. I didn't have any problems removing things for our regular schedule to fit her dietary needs but the lack of eating and eating alone makes it hard. My other issue is when I have a bad day at work and come home, I feel bad talking about it but I feel like my problems are very trivial compared to hers yet they still bother me.

Cottonbud, be strong for him. Find something in your life to keep you "sane" as well.

Mrswill, my heart to you and your situation. I hope it all works out for the best for both of you.



Good life, Good health
04-04-2013, 06:51 AM   #54
mrswill
 
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Mrswill, my heart to you and your situation. I hope it all works out for the best for both of you.

Good life, Good health[/QUOTE]

Thanks Neil. I bet even if your having a moan your lady likes to hear about your day at work. Will always says he gets fed up with just talking about being ill and just thinking about being ill. The food thing is hard i feel a sense of guilt eating my nice food when he's on the dull stuff too but you can't change everything you eat especially if its restrictive you don't end up getting what you need.
Keep happy!
04-04-2013, 08:12 AM   #55
Karen
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members ... wishing each and everyone a blessed Thursday and a safe one !!
04-04-2013, 01:30 PM   #56
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feeling better today!!!
different steroids , budesonide which hopefully wont cause the 'head' problems that prednisolone did, doubled the dosage of pentasa plus IV hydrocortisone's and antibiotics.
he has a very bloated belly but they are working on there being alot of inflammation and he really hasnt eaten as much as he would at home although they are giving a really tasty soft diet which must help even a little bit.

have been sent home tonight as the footie is on so its a glass of wine and the tv and dogs for me

think he will be in hospital for a few more days at least.
thank you all for the supportive messages, they do help.
x
04-04-2013, 02:20 PM   #57
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Update on my hubby:

Went to go see him yesterday evening with my MIL and our son. Hubby was so happy to see the boy, and vice-versa. He's doing better today than he was yesterday, he tells me. Still not in tip-top shape, but making progress. Still is going through a lot of pain with very little energy, but he did get word back from his team of doctors that they weren't particularly worried about his low stoma output levels. They seemed to decide that it would straighten itself out if given a little more time. So, now we just have to get him off of the IV pain meds so he can come home! He's hoping for 2 more days at the most, but I'm thinking that's more likely to be a minimum, considering the time it will take to wean him off of those IVs.

Thanks for keeping all of us in your thoughts and prayers! We all truly do appreciate it!
04-04-2013, 04:46 PM   #58
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I don't have Crohn's, but I do suffer from it...
Very nicely put REHOPEH
04-04-2013, 10:07 PM   #59
SandyUte
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That was nicely said, we all suffer from Crohn's here. Welcome all you lovely new people! I also think that we need to continue to be who we are, and if we have a hard day at work, etc., need to be able to talk about it no matter how insignificant it seems compared to our significant other's problems. In some ways, our roles are sometimes harder emotionally. one of the hardest stressors in life are those things that we have no control over. as supporters, we not only can't control whether the disease is there, but can't control how our loved ones deal with it.
I think we need to give ourselves a pat on the back because we are here, doing the best we can, trying to support each other and most especially our partners. Thank you all for being there, and all of your various situations are in my prayers.
04-04-2013, 10:14 PM   #60
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Just wanted to give y'all my most recent (exciting!) update on my hubby:

Just got word from him that he's doing great again, despite the fact that it's been 6 weeks since his last Cimzia dose! Says that he can now eat chili (a food that used to give him all kinds of digestive trouble) without an issue, thanks to his stoma! Also, that the doctors had gotten him back on the hydro-cortisone suppositories, which are helping with some of the pain. I'm soooooo relieved!! He's hoping to be able to come home on Saturday
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