# Spouses of Crohnies Support Group



## Karen

:kiss: 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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## Jmrogers4

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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## Karen

:hug: Thank you for coming into my GROUP !!!  I am happy to see someone else come along besides myself so thanks again !!!


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## SandyUte

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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## Karen

SandyUte said:


> 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.



:smile:Thank you for coming and joining us !!! :smile:


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## SandyUte

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.:hug::hug::hug::hug::hug:


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## Karen

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 !!


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## SandyUte

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.


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## SandyUte

I also hope your husband never needs surgery.


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## mrswill

Joined! Karen you have been so loverly so far thanks!


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## Karen

mrswill said:


> 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 !!!


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## SandyUte

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!


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## ICU

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


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## Karen

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 !!!


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## SandyUte

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
:ghug:


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## akkinasmitha

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


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## mrswill

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.


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## SandyUte

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.


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## Karen

akkinasmitha said:


> 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 !!!


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## mrswill

Sandy UTE:
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.


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## mrswill

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 !


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## Karen

MrsWill ... Thank you so much for sharing here in the group !!!

:ghug:


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## ICU

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.


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## Karen

ICU ... Good to hear that the FOOD JOURNAL has helped out ... So, keep track of everything that goes in ... NO MATTER what it is !!


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## mrswill

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.


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## Karen

Very good !!!


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## SandyUte

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. :ghug:


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## jwfoise

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.


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## Karen

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 !!!


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## Karen

Wishing each one of the members here in my small but growing support group all the best on this special day ... !! :smile:

:ghug:


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## mrswill

Happy easter!! Hugs!!


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## SandyUte

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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## SandyUte

so now I'm too wordy. :biggrin:


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## Monika Anna

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.


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## Karen

:ghug: 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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## SandyUte

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.


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## rehopeh

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. :smile: 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.


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## 52rockwell

Karen said:


> :hug: 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


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## Karen

rehopeh said:


> 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. :smile: 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 !!


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## Karen

52rockwell said:


> 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 !!


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## Karen

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 !!


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## NeilJ

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


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## Jmrogers4

Welcome Neil, hope the Humira does the trick for her


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## mrswill

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!


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## NeilJ

mrswill said:


> 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.


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## Karen

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 !!


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## ICU

mrswill said:


> 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 :yrolleyes: 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...


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## mrswill

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.


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## cottonbud

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 :-(


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## mrswill

Sleep well cottonbud you need to be in tiptop shape to support your man!! X


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## cottonbud

Thank you mrsWill!!
the advice and support on here looks amazing.


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## Karen

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 !!!


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## NeilJ

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


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## mrswill

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!


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## Karen

members ... wishing each and everyone a blessed Thursday and a safe one !!


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## cottonbud

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 :beerchug:

think he will be in hospital for a few more days at least.
 thank you all for the supportive messages, they do help.
 x


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## rehopeh

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!


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## NeilJ

rehopeh said:


> I don't have Crohn's, but I do suffer from it...


Very nicely put REHOPEH


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## SandyUte

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.:ghug:


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## rehopeh

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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## SandyUte

That is wonderful news!  Hugs to you and yours!  It is really nice to hear good things now and then too.


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## Karen

Wishing one and all a great FRIDAY and a wonderful weekend ahead. Whatever your plans be ... stay safe & come and visit us from time to time !!


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## jwfoise

cottonbud said:


> 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 :-(


Wow, have I been there cottonbud (as I suspect lots of people here).  That first night when you leave them in the hospital is the worst.  Try to get some sleep, don't neglect yourself, reach out for support, and know hubby is in good hands.


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## Monika Anna

Just wanted to say Hi to everyone and to keep hanging in there! My daughter and I have been at the hospital the last few days,  but we are home again. It sucks living two hours away from the hospital, but at least it's not 12 hours like before Christmas that we had to drive. 

It is hard leaving your partner to go home again, especially for our daughter, I thought I would be used to it by now but it still hits us every single time. I try to think positively and say to myself that it could be worse. I find it hard to enjoy myself a lot of the time as I find myself feeling guilty that I am having fun or doing things that my wife can't. I try to keep it together for our daughter but sometimes it is very difficult. I don't know how you guys feel but for me I can't shake that feeling a lot of the time. 

Anyway, I just wanted to get that out. I hope everyone is having a great weekend, or as great as it can be, take care.


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## rehopeh

After almost 2 weeks in the hospital, my hubby's finally coming home today!!  It sounds like he's doing fantastic, in the least amount of pain he's been in for the past 2 years.  Thanks be to God!  I'm so happy right now, I thought we'd never see this day!!


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## cottonbud

hi all!!!
 been a busy weekend, hubby still in hospital and still in lots of pain but looking less tired then he did last week so i assume something is working. been visiting 3 times a day as im lucky that it is only a 15 minute drive and i dont have to rely on others to walk the dogs etc. hoping that 2mo brings some bright news as last thing friday they were trying to chase the CT scan pics that were done at a different hospital. hubby worried that this will result in surgery as we are going away in 3 weeks time. looking at his stool chart it isnt to positive...he started as a 7 and went u to a 4 over a few days but today he is a 6...all day, maybe its the meds or the low residue diet?
Rehopeh.......thats fab news...big hugs to you all. x


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## SandyUte

* sorry so long!*Hi everyone. I feel blessed and lucky as so many of you have someone in the hospital right now,  and I don't   Doug and I had our 18  year anniversary yesterday,  and it was nice to spend some time together in relatively good health.  When Doug was finally diagnosed, he was in horrible shape and in need of urgent surgery. He had been misdiagnosed for several years with IBS, in spite of horrible pain,  problems and even a palpable "mass" in his stomach (constricted intestines),  losing weight and not being able to eat anything for a long time.  The surgeon who finally did operate was amazed at Doug's pain tolerance and ability to live like he had for so long.  He was very near to death,  and I found out after the fact that he had wished for it.  however, like I mentioned, he is in relatively good health now thanks to a  couple of good GIs.  There are a couple of reasons I bring this up.  One is so you know that things can and do get better. The other is that Doug had read this thread and thinks as I do, that no one ought to feel guilty for going on with life as loved ones are in hospitals, etc.  Doug says he longed for something besides dwelling on crohn's twenty four hours a day.  Those afflicted with this horrible disease _want_ to see some normalcy. I took Doug's mind off of crohn's by developing a seizure disorder. :yfaint:  This was not the way to do it! We need to be there for each other, but continue to live as best life as we can.  We need to lift each other up! _That_ is what life is all about, in my opinion.  If you believe in any kind of God, wouldn't  He wasn't the best for you?  If you are not sure, or even if you don't believe in a God, don't you want the best life possible? I know that is easier said than done, and sometimes there might be a little jealousy, but remember it is not that our loved ones wish us ill will, they are just mourning what they once had. They may think we don't understand at times, and we don't, we can't, unless we go through what they do.  We can empathize, we can support, but maybe we will have to remind them that we are there for them.  Don't stop visiting in the hospital,  do what you can to cheer them up.  you will find it goes both ways.
 like I said, I feel blessed.
 HUGS!
:ghug:


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## Karen

*My good friend Sandy !!!  Wishing you all the best !!!*


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## SandyUte

Aww,  shucks,  Karen.  Thank you.


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## ICU

My husband and I went to a CCFA symposium on Saturday in Sacramento with speakers from UC Davis. Being new at this Crohns thing and only having info from the Internet so far, it was nice to hear information from top notch pros. The one thing that kept shining thru was the fact that everyone is different and no one thing works for everyone.
I am sooo glad this site is here! We learned here valuable info that is spot on! Thank you all!!! We knew that no one thing works for everyone, to keep a food journal, and that we are not alone.
We are currently puzzling the diet pieces together. Gluten free seems to be helpful (and we are used to doing that) but also discovered that gluten is tolerated! That was a bit freeing! But dairy is not tolerated at all. And he is trying a protein shake to put some pounds back on (which we are finding is very hard and slow). PlantFusion. He's tolerating it well. Now to see if it helps with the weight and weakness.
I feel blessed that we haven't done the hospitalization yet. My heart goes out to all of you dealing with that! Our trials seem petty in comparison. We do have an underlying fear of that in our future...
Fear of a major flare up makes some plans for travel seem impossible. Our daughter is going to study aboard (across the pond) this summer and we had planned to travel with her a bit before classes began. Now hubby is fearful of even getting on that plane. And I have a truck load of emotions as well (travel alone- guilt, push him to go- fear, stay home- frustration, disappointment, etc) We were fine with travel before because flares had been minor in comparison to this last one. Hubby's biggest fear is a major flare when he's not at home...I understand that completely. How do you handle this? Go, carefully? or find other adventures closer to home? 
I know as we learn, it will get easier...but right now it's frustrating that Crohns seems to direct everything.


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## Karen

Wishing one and all a great Tuesday & thank you for making this part of the forum turn out to be a big hit ... We have gotten 1,156 posts ... so thanks to each and all of you !!!


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## jwfoise

ICU said:


> Fear of a major flare up makes some plans for travel seem impossible. Our daughter is going to study aboard (across the pond) this summer and we had planned to travel with her a bit before classes began. Now hubby is fearful of even getting on that plane. And I have a truck load of emotions as well (travel alone- guilt, push him to go- fear, stay home- frustration, disappointment, etc) We were fine with travel before because flares had been minor in comparison to this last one. Hubby's biggest fear is a major flare when he's not at home...I understand that completely. How do you handle this? Go, carefully? or find other adventures closer to home?


One thing we always do for our travel plans is purchase trip insurance.  Yes, it will cost you more, but it isn't outrageous (IIRC, it is typically less than $100 per person).  That way, if worse comes to worse and you have to cancel at the last minute, at least you can get your money back.  If you book through an agent or a travel website, you can purchase it through them, or do it independently on-line.  Depending on the policy, you can also get it so that it covers medical flights back, if that becomes necessary.

I know that some people with medical problems like cruises, because there is often an on-board doctor, plenty of bathrooms, and if you are not feeling well, you can hang out in your stateroom.

My wife has an ostomy and sometimes will have problems or leaks, so always carries an emergency supply kit with her in her carry-on.  We also keep one in each of our cars.


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## LISATHEGIRLS

Good Afternoon All!
Anyone else feel like they are making meals for their families af if your kitchen is a resteraunt?  My hubby has been flaring and strongly adhering to the Low Residue Diet...  I'm finding myself at a loss for options...  According to the diet lean meats like chicken and fish are best, however, we've found chicken doesn't agree with him either.  
So besides fish, I've made 3 meat loafs with ground beef and ground pork and that seems to be the ONLY meats that don't go right through him!
Anyone have any good menu ideas?  
Signed, over meat loaf!  Lol!


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## SandyUte

LISATHEGIRLS said:


> Good Afternoon All!
> Anyone else feel like they are making meals for their families af if your kitchen is a resteraunt?  My hubby has been flaring and strongly adhering to the Low Residue Diet...  I'm finding myself at a loss for options...  According to the diet lean meats like chicken and fish are best, however, we've found chicken doesn't agree with him either.
> So besides fish, I've made 3 meat loafs with ground beef and ground pork and that seems to be the ONLY meats that don't go right through him!
> Anyone have any good menu ideas?
> Signed, over meat loaf!  Lol!


 I sure wish I had a good answer to that!   IBDer's  diets are almost opposite of what everyone else should have.  As for meat dishes,i don't know,  except maybe smaller portions of lean meat  included in something like pasta dish, maybe something like chicken fetucinni alfredo,  or a tuna noodle casserole. I hope this helps.
 Hugs!:Flower:


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## LISATHEGIRLS

SandyUte said:


> I sure wish I had a good answer to that!   IBDer's  diets are almost opposite of what everyone else should have.  As for meat dishes,i don't know,  except maybe smaller portions of lean meat  included in something like pasta dish, maybe something like chicken fetucinni alfredo,  or a tuna noodle casserole. I hope this helps.
> Hugs!:Flower:


Thanks!  Last weekend, I made him a "special" grilled chicken pizza with a light white sauce and homemade crust and that totally did him in...  Since this is his first major flare and up to this point he's been able to eat just about anything besides spicy foods this is a huge adjustment!!  I'm starting to notice that even eggs are worsening the flare.  As soon as we get his bathroom visits down to 5 times per day.  We try something a bit different like the white pizza or plain egg omlet and he's in the bathroom ALL night.  
Trying to find some good proteins that will sit well with him.  Tuna fish is okay.  Will try your tuna noodle casserole idea!!
Thanks again!


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## ICU

Lisathegirls~I feel for you! I am feeding the man gluten free, dairy free, and low residue. Lunch is tuna with GF low fiber crackers, puréed canned pear in pear juice, and PlantFusion protein drink. He's sipping a Gatorade throughout the day. He's still in a flare, but it is improving ever so slightly. The weight gain seems to not be happening, but at least he stopped loosing!
Dinner will be GF pasta with baked chicken breasts.
I wish you the best in your search! And I'm sorry it's so puzzling...


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## Tina H

Hi everyone,
I am so glad I found this support group.  I have been reading some of the posts and it seems there are many facets to this disease, It cetainly is very individualized. In saying that, we are all experiencing similar challenges. It is so nice to find a place of support from those going through the same thing as I am.

My husband was diagnosed with crohns in July 2010.  He was experiencing severe crippling abdominal pain... after weeks of putting up with this pain, he finally went to the hospital emergency dept.  His bowel had perforated and he required emergency surgery.  Luckily, he didnt need a colostomy, they cut out the bad section of bowel and reattached. After a month's hospitalization, He was placed on Thioprine and seemed to be doing very well until December 2012.  His Crohns has now come back with a vengeance.  He has been experiencing weekly flare-ups, several bowel obstructions, violent vomitting.  He was put in hospital last week with severe inflamation of the small bowel.  He was placed on  I.V. steroids and antibiotics.  He was feeling ok for about 4 days, but then the pains returned.
 We are both at our witts end with the constant illness, It is so hard to function day to day and trying to live life normally has become near impossible.  we cant make plans, as he worries about his health, we have had to cancel our holidays as he doesnt want to be too far away from his doctors.  It is so hard as a spouse to see your husband in constant pain and not be able to help them!!! 
 I am now trying to find edible low residual foods to feed him, so if anyone has any suggestions for meals I would be grateful.


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## SandyUte

Welcome Tina!  It is so hard to find the correct diet when, as you said, this horrible disease is so individualized. On top of that, each individual with the disease (at least my husband) seems to change so fast in his needs, not just day by day, but minute by minute. Of course, there are the generalities. I would try some very basics of low residue foods, and once you know what food,  even just one food,  he can tolerate, try adding things one at a time.  As Karen always suggests, keep a  good diary,  including his reaction and any tolerance or intolerance to the food.  After awhile,  you will get a  good idea of the sensitivities he has.
 Another thing people on this forum do is purchase a juicer.  you can get a lot of natural vitamins and minerals without the fiber that is hard to digest that way. I even like it for myself,  but for me,I often stir some of the pulp back in.

I forgot to mention when talking about pasta above, a lot of crohn's people also have lactose intolerance.  Creamy white sauces or Alfredo sauce might not work too well. (Luckily, Doug is ok with these.)  If this is the case,  try just plain ol' white flour noodles, with just a little butter or olive oil on them, and add things as tolerated.  Doug also likes applesauce. 

 For meats, try using a crackpot or pressure  canner/cooker, as it tends to make meats softer and more digestible. 

I think I'm getting hungry! 

( Also,  remember they are going to eat what they want to anyway.:eek2:


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## Karen

SandyUte ... for all the wonderful tips that you have been sharing here in OUR GROUP and it has helped me out a lot to have a WONDERFUL FRIEND to HELP OUT so thanks again !!!


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## lorhack

Hi everyone. My husband has Crohn's.  Severe mood swings pain and now insomnia and severe back pain.  Any suggestions? Anyone else's have these symptoms? What do you recommend for back pain? Can barely stand or lay down


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## Karen

lorhack said:


> Hi everyone. My husband has Crohn's.  Severe mood swings pain and now insomnia and severe back pain.  Any suggestions? Anyone else's have these symptoms? What do you recommend for back pain? Can barely stand or lay down


:smile: Welcome to the Group ... I am sure that someone will be there to help out as I found lots of support in the beginning with my hubby and I found myself sleeping a lot in the guest room ... just so that he could have the room to sleep and to also be close to the bathroom ... So, I will try and come up with some help ideas for you ... so once again WELCOME !!!


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## Tina H

Thank you Sandy Ute for the advice, I will definately try one thing at a time to see what he tolerates, then slowly add things.  Also, I will try the food diary. 
 He has finally had 3 "good" days in a row :ybiggrin:  I'm keeping my fingers crossed it continues.......  the pessimist in me doesnt want to get my hopes up though ! ( that sounds awful doesnt it !!! ) but lately, there has been more bad days than good.  I'll have to learn to ENJOY the good days :smile:


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## lorhack

Karen said:


> :smile: Welcome to the Group ... I am sure that someone will be there to help out as I found lots of support in the beginning with my hubby and I found myself sleeping a lot in the guest room ... just so that he could have the room to sleep and to also be close to the bathroom ... So, I will try and come up with some help ideas for you ... so once again WELCOME !!!


Thank you. I'm just wondering if a chiropractor would be of use.


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## SandyUte

Sorry for my disappearance.  I've not been well myself (partial seizures) and I've had a lot of family stress the past couple of days,  mostly due to illnesses again.  Dang blankety blank  illnesses.   

Hi, Lorhack!  My hubby's sis lives in Henderson, Nevada, too.  Welcome. I don't think the back problem is a typical part of crohn's, unless it is arthritis from the Crohn's. I think mood swings,  however, can come from trying to deal with a serious illness, and can happen to the care takers too.   At least that is my story and I am sticking to it:whistleinnocently:.   Was your spouse recently diagnosed?  It evens out some after awhile, but coping skills do come in handy for all involved.  Has his back been x-rayed?  If not, you might want to talk to a doctor about that. I hope all gets better.   Be strong,  and if you don't feel strong,  you will after awhile. Find joy in life in the little things, there really are a lot of things out there to find joy in. 
 Hugs to all! :ghug:


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## Karen

-----> 15 

So I want to say thank you to each and everyone for making this support group such a HIT ... to each of you I send over lots of ....







so ... tell your friends and loved ones to come and join us !!!


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## mrswill

Hi everyone sorry ive been away! Nice to see some new people here. Just a  small update. Will has his first hospital apointment on wednesday. Its taken far too long. He is tired all the time atm does anyone know how long it takes from getting a consultation to getting the colonoscapy? Im starting to feel very sorry for my man. he told me yesterday he can feel every inch of his bowl and digestive system.. :-(


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## mrswill

Hi everyone sorry ive been away! Nice to see some new people here. Just a  small update. Will has his first hospital apointment on wednesday. Its taken far too long. He is tired all the time atm does anyone know how long it takes from getting a consultation to getting the colonoscapy? Im starting to feel very sorry for my man. he told me yesterday he can feel every inch of his bowl and digestive system.. :-(


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## SandyUte

Hi, Mrs. Will!  I'm not sure about the UK, but unfortunately the answer is that here in the US it varies greatly according to the GI's schedule, everything from the next day (very rare) until a month or two from the consultation. It also varies somewhat according to the patient's needs. I wish I had a better answer for you.


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## Halfgut's wife

I'm seeking support and information on behalf of my Hubby (aka "Half-gut", self - named :smile He was dx'd at age 17; now is 38. Has had total of 4 small bowel resections and likely headed for a 5th in next couple to few weeks. He has been on all of the typical Crohn's meds over the years, except hasn't yet tried Tysabri; GI also mentioned Stelara, but not yet approved by FDA so our insurance likely won't cover. Had been doing fairly well for last 6 mo's, and was on Imuran and Humira (1x/wk). Now is in a bad flare; unrelenting pain, frequent vomiting and extreme fatigue. Last week's colonoscopy does not look good and we are anticipating a surgical consultation any day now. Overall his Crohn's has been very problematic and difficult to manage. Does anyone have any experience with Tysabri? It looks like they are considering it as an option, possibly post-op...If the lab tests would indicate him to be a candidate. Also, any info on use of proteolytic enzymes?


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## Karen

I want to be the first to WELCOME you to our little corner of the forum. I am sure that you will find plenty of support and I am sure too that you will find some of your answers that your looking for ... so have good time here !!!


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## cedargonzalez

Hi, my name is Cedar and my boyfriend has Crohn's disease. We have been together since before he was diagnosed, and I have been with him all throughout the process. He first had Crohn's symptoms because he got salmonella, which I am told can bring out dormant Crohn's. After all of the stuff from the salmonella, he still felt awful consistently, and after a very long and irritating process, he was finally diagnosed with Crohn's about, lets say six months ago (though we have been dealing with these symptoms for nearly a year now). It has been a very difficult process for him, and also myself. Lately things have been very hard for me just because of the way that it affects my life as well as his. I am glad to have found this forum because especially lately, I have been feeling so alone in this matter, and totally helpless because I can't help him at all. It has been hard for me to not be able to do a lot of the things that I want to do with him. My most recent frustration, however, is trying to get him to take better care of himself. Honestly, it has put a strain on our relationship, but I am committed to being by his side because I love him very much. Being young and busy students, admittedly we don't always eat as well as we should (especially with his sickness) and we haven't been getting much needed exercise. The result, he feels icky all of the time, tired, and very depressed. I have been trying to get him to exercise which is very hard because he feels sick, but I know that it could really help directly with his stomach, etc, and also his depression, hopefully giving him more motivation to take care of himself and feel better. I have been asking him to go to therapy for months now because as much as I am there for him and want to be more, I can't be the only person in his support system, I just can't handle it. 
At this point, I just feel helpless and frustrated and after reading this forum I thought it might be helpful to get some suggestions or support - or whatever I can get at this point - from people who understand what I am going through.
Sorry about the long comment..
Thanks to all.
Cedar


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## Karen

WOW ... 16 MEMBERS and so keep them coming !!!

And so I am here to give a SHOUT OUT to OUR NEWEST MEMBER ... CEDAR !!!  I am sure that you will be blessed by all the members here and you will also find the help that your looking for ... We are all here to HELP EACH OTHER OUT ... so make yourself at home !!!! 

:ghug: :ghug:


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## mrswill

Hi all the new people! I am so busy atm. Will went for his colonoscopy today and was told there and then Deffo crohn's or U.C looks like we may start to get somewhere. He said the colonoscopy was ok but the prep was nasty he had to drink two litres of movie-prep it smelt disgusting! Im so glad were finally moving forward its only taken the doctors 2 years to pay attention and it was only when he was in the middle of a flair did they believe there was something wrong. Has anyone else had this kind of reluctance from doctors?


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## Karen

Good Morning Roomies ... Well I too am HAPPY to see all THE NEW FACES / NAMES and so I am PRAYING for each and EVERYONE so ... take care and MRSWILL do keep us posted on what happens and what the COLONOSOPY will tell you ... so I have to head off but I will return soon !!!

LOVE TO ALL !!


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## mrswill

Hi Ceder welcome to the forum. It sounds like you have been having a pretty rough time of it. Well done for standing by your man. I understand how exhausting this can be. I think you sound like your getting pretty desperate for some advice. I will give you advice based on my own experience and see if it helps.

First of all you need to try and tackle the depression. Its very hard and if your very close then his mood will effect your mood making it even harder. If my hubbys in a bad mood boom im flat too it can be a nasty circle.

It must be really hard as a young man to have just discovered you have this kind of illness, especially if you didn't know anyone with it before. HE needs to learn that taking care of himself will make him feel better and less depressed. He needs to know you CAN lead a relatively normal life with crohns, my mother in law has done it for over 10 years but its not easy and can't happen if he's not willing to take care of his overall health.

I know he is ill but somtimes a bit of brutal honesty doesn't go a miss. You could say something like, "i really love you and i want to stand by you but i need you to make the effort not just for your self but for our future together" explain that you can't be his only support as its not healthy for either of you and maybe advise he sees a councillor at school someone nutural to talk his feelings through.You may also benefit from talking to someone, i was fortunate (i guess theres not really another word for it) that my husband has grown up with his mother having crohns so when he first started getting the symptoms he had a pretty good idea of what was gong on. I don't know what i would do if i had not known about the illness. 
If he is flaring  i would advise he doesn't exorcise. Will and i used to swim 4-5 times a week but atm he hasn't got the energy and the doctors have told him to try and take it easy for the time being.  Maybe suggest he goes for a walk if hes up for it get out of the house with each other and get some fresh air. I find that Will and i communicate much better out of the house away from all the distractions of the familiar i think people close themselves off in there own homes sometimes.

I believe diet is important and he probably isn't getting the same nutrition if hes eating poorly and sporadically. Crohn's stops you absorbing nutrients as well as you wold otherwise so depending on what you eat he could be struggling to maintain a healthy diet. I personally think you may want to focus on the diet aspect most of all a poor diet on top of crohns will not help his fatigue and depression. Maybe you could try and get some supplements in there an all round vitamin supplement would be good preferably one that devolves in water so it can be absorbed with out having to be digested.

My last bit of advice is take care of your self. Also take time for your self spend time with out him with your friends a space to take you away from all of the day to day stress of it all. Its not healthy to suffocate each other it leeds to stress and resentment on both parts. Im not advising you go out every night but spending time with some friends or going to catch a movie once in a while could give you a much needed break.

I hope you find this helpful.  Kaitlynn


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## cedargonzalez

Thanks so much for the advice! We are slowly trying to do all of those things. We finally did sit down and talk about everything, the fact that it's hard for me, that I am worried about him, his physical and emotional health, his diet. So, we are definitely working on getting better! 
Diet is becoming more healthy, for both of us, as we learn more and more, and both of us (together and separate) are working on de-stressing, getting things done, and getting some slow exercise for him! 
We were thinking that some yoga might help, and walks will be added as well when he feels up to it. That definitely is a good idea to talk about things out of the house. 
I go to a therapist every other week, I have for years, and I told him that it would be extremely beneficial to him as well, so he is currently looking for someone to go see as well. 
I think things are on the up and up. Relationships are hard work, especially with Crohn's in the mix, right? So, lets keep our heads up, spouses! They are so worth it.


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## SandyUte

Hi Cedar! I was posting a reply to you the other night when I got interrupted and apparently never finished.  Others above have said much of what I was going to say,  and did so more eloquently than I could have.  Right in the middle of my composing my message then, I realized we are neighbors!  My hubby even grew up in Salt Lake.  I spent many years there myself.   Right now,  we only live 20-30 minutes from downtown, up north in Kaysville. 
I was going to suggest the walking as well. I have a close friend who has had colon cancer and although the cancer has gone, she has suffered many of the same issues as a Crohn's patient due to scaring of her intestines,  and has often had to go to the hospital as they get things under control, ie, her bowels moving and pain management.  She swears that walking has helped  stave off some of the hospital visits and helped get " things moving" again.  As also mentioned above, it is also good to get out of the house once in a while, and to get some fresh air.

Kaitlynn, yes, many people here have had long, hard roads to getting diagnosed.  My husband took six years from the time he first started showing up in the emergency room with severe abdominal cramping until he was finally diagnosed.  He should have been diagnosed right away, but he had an incompetent GI at the time who diagnosed him with IBS, even though he had a palpable constriction in his intestines, or a "crohn's mass."  He did have a colonoscopy at the start,  but like I said,  his doctor was incompetent and claimed it was totally normal when images from that colonoscopy were anything but normal.  Sometimes,  however, a person can have crohn's and it won't show up on a colonoscopy if it is not active.

 I'm talking too much again. 

 good luck to all my new friends out there!  take care of you,  or you won't be able to take care of your loved ones.
 Sandy


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## jwfoise

cedargonzalez said:


> We were thinking that some yoga might help, and walks will be added as well when he feels up to it. That definitely is a good idea to talk about things out of the house.


Yes, walking is a great exercise - no special equipment needed, do at your own pace, as it fits your schedule, good stress relief.  My wife is a big fan of yoga and does it several times a week.



> I go to a therapist every other week, I have for years, and I told him that it would be extremely beneficial to him as well, so he is currently looking for someone to go see as well.


We live in a big metro area (Cleveland) with some big teaching hospitals, and there are actually therapists here that specialize in helping people with chronic illness or similar issues.  If there are people like that in your area, they may be of help.  Maybe his doctor can help him find someone.



> I think things are on the up and up. Relationships are hard work, especially with Crohn's in the mix, right? So, lets keep our heads up, spouses! They are so worth it.


Yes and yes.  Relationships are hard work, but aren't most things that are really worthwhile.  And Crohn's does make it that much harder.


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## Karen

JW ... thank you so very much for your FEEDBACK !!!!

Wishing each and everyone a WONDERFUL & BLESSED WEEKEND ... mine is to be a busy one but I will do my best to come back in when I can and see what is going on so thanks again 2 one and all for your feedbacks here ... It means so much to me to have great support to come to ... so thanks again !!!


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## Karen

May tomorrow be filled with hope, love and faith. Night everyone


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## SandyUte

Hey, Karen, I was just going to say that when I saw what you said.  (The "Good night"  everyone!)  Don't let the bed bugs bite. I don't know about all of you,  but next week is going to be a better one  for me and hubs.  This week was har ... I had a doctor tell me not to make another appointment with him except on an" as needed" basis. I don't know what consists a need as I have been having at least one seizure a week,  and have had two mini strokes since January,  and found out during testing there that I have a cyst in my pituitary gland,  which he refused to check into further.  (Although pituitary gland is in head, his specialty area being a neurologist --- and when discharged from hospital end of January they made it clear this needed to be followed up on.  Even wrote it in a report to give new neuro.) Dr.  Quack just wants me to see a psychiatrist.   After him, (and dealing with Doug's Crohn's), I think I need one! And to think I just left another neuro because she wasn't aggressive enough in treating these seizures. :yfaint:


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## ICU

Today we are headed to the GI Dr for the first time. Hubby got his diagnosis weeks ago, but we have seen no one. GI dr too busy for an appt sooner, family dr-? who knows ? So we have been floundering- trying to get some answers from the internet, sorting out truth, feeling like we were thrown into a pool but not knowing how to swim.
So I want to say *THANK YOU*to all for this site! All the different threads and discussions have been THE ONLY way we have made it. We found food that wasn't irritating, hope for the future, and real answers! This dr has some pretty big shoes to fill


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## SandyUte

I hope everyone's spouses and significant others are doing okay,  and that all of your stresses are at a minimum. I have been thinking of all of you.


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## Karen

Wishing one and all a GREAT Wednesday !!  Praying for each and everyone of you and your LOVED ONE. Well I will be in and out over the next few weeks because I am going to be going in for KNEE SURGERY { not REPLACEMENT } so I will try and send a UPDATE your way when I can ... so take care and remember to STAY STRONG & BE THERE FOR YOUR LOVED ONES ... 

See you all again soon !! 

PS: MY surgery is set for May 14th - Tuesday


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## Darius

Hi, my husband Darius, has had Crohn's for the past 19 years.  We have been married for 14 of those years.  He has had a colostomy for 17 years and last year had a permant ileostomy (the entire colon and rectum was removed).  He got a pressue ulcer on his heal while in hospital which still hasnt healed and has had many operations on the foot.  In all of this he has ulcers around the stoma which seem to have burst and fluid is coming from them.  We see the stoma sister tomorrow.  I have done lots of searching about these and mostly have found that the Crohn's is probably back.  We have two kids aged 10 and 7, and my biggest fear is that they will get it.  The last year has been a nightmare and every little task seems enormous.   I guess I'm looking to find out what are the chances of the kids getting it and how long before he gets a break?


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## Karen

Darius ... Have a great time here and I pray that you will find the answers that your looking for ...


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## jwfoise

Karen said:


> PS: MY surgery is set for May 14th - Tuesday


I might have missed it some place, but what surgery are you having, if I may ask?  Whatever it is, I hope it goes well.


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## Karen

I guess that I better UPDATE and share with you that the SURGERY I am having in May is for my knee and I am NOT having a REPLACEMENT !!  I am having the Arthritis in my kneecap cleaned out and then having some of my TORN MENISCUS taken care of ... sorry that I did not share that before ...


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## Darius

Hi
I hope your operation went well.   I have recieved lots of information about the probability of my kids getting CD, and I must admit I am very sad to think that this could happen.  How does a mother watch her child suffer?


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## Karen

Darius said:


> Hi I hope your operation went well.   I have recieved lots of information about the probability of my kids getting CD, and I must admit I am very sad to think that this could happen.  How does a mother watch her child suffer?



My surgery is NOT till next month ... but we are all here for each other. I am a wife whose hubby has CD and it has been a HARD ROAD but we are getting thru each day that is upon us and if your asking how I take care of my son ... he is on his OWN and he does call from time to time and update us so ... take care and see you soon !!!


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## Darius

Karen
Sorry for miss understanding.  Talk about catching the tail.
You kids dont have CD?  Suppose that is what I'm trying to find out, how do spouses cope with husbands and kids with CD?  I have watched my husband go through some really scary things and still going through.  It seems that every side effect of CD he gets in some way or another.


----------



## Karen

Darius said:


> Karen -- > Sorry for miss understanding.  Talk about catching the tail. You kids don't have CD?  Suppose that is what I'm trying to find out, how do spouses cope with husbands and kids with CD?  I have watched my husband go through some really scary things and still going through. It seems that every side effect of CD he gets in some way or another.



NOT TO WORRY ... My husband is the one with the CD and my son has Ulcerative Colitis and so it is something like Crohn's so ... It is something new for him and so I am praying that he can get feeling better soon !!  My hubby has had a lot to deal with over his 7 years that he has had CD and so I am trying to be the GOOD WIFE and make meals that he can EAT !!  So, it is a hard time for all of us !!!


----------



## ICU

Darius said:


> Karen
> Suppose that is what I'm trying to find out, how do spouses cope with husbands and kids with CD?  I have watched my husband go through some really scary things and still going through.  It seems that every side effect of CD he gets in some way or another.


:eek2:it is hard to watch my husband go through his CD flare ups, and manage his daily food and work. I'm a fixer and want to do more to help, but I can't. So I do the meals and de-stressing things I can. But it feels like it is so little... I have a lot to learn still about caring for him, remembering to care for me too, and letting go of what I have no control over.
My 18 yo daughter has symptoms of IBS and I fear she will get some form of IBD somewhere down the road. Trying to educate her about some changes now that might help keep IBD away- well, at 18 she's concerned with other things and has little interest in working on something that might not even happen. I have got some more lessons to learn!
One member put it so well- I don't have Crohn's, but I suffer from it.
I don't have the physical aspects, but I have the emotional aspects of the disease. I say this not to discount this atrocious disease and what it does to my family, but just to acknowledge that it affects more than just the patient.
It's a heart wrenching road you are on. Know that you are not walking it alone. I hope you can find a spot of joy each day to keep you going. I am certain your strength and support are a blessing to your hubby. 
One day at a time...


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## Darius

Thank you both for the encouragement, I must remind myself to let gothe things I can't control!


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## SandyUte

Darius said:


> Thank you both for the encouragement, I must remind myself to let gothe things I can't control!


A great guru :biggrin:  told me that is the key to life!


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## Karen

*Welcome to the month of May ... Wishing each and everyone a great day !!*


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## Darius

Hi my husband has started with mouth ulcers again he is on methotrexate 25mg a week, what can we use for the ulcers? Thanks Sharon


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## mrswill

Hi everyone just checking in. Hope all you and yours are doing well. Xx


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## SandyUte

Darius said:


> Thank you both for the encouragement, I must remind myself to let gothe things I can't control!


Doug went to the doctor yesterday, he has had some depression problems from dealing with health issues. This is when I feel helpless.


----------



## mrswill

I know that feeling Sandy. Will is pretty low at the moment. Between the crohns and having to give up his place at Berklee hes not very happy. He was hoping he could school in this country but the only place he wanted to go rejected his application. Now were back to square one and im not sure how much more i can deal with. Its hard for me to keep waiting for our life to get on track. Because of all this ive had to put of training for a job i want and any chance of having children has pretty much vanished. Its starting to hrind me down too. How do i keep posative? How do i see the good? Everyone is verry supportive with Will but everyone just expects me to keep going and never asks if im ok. Im starting to feel resentful towards Will and i don't want that because i love him very much and non of this is his fault.


----------



## Darius

I know just how you feel, I had to see my doctor for stress and panic attacks. Its hard to see the light at the end and to stay positive. Darius's work want to bored him which he isn't happy about coz the idea. Of going back to work was keeping him going.  Its very hard on the kids as well. Remember to look after yourself everyone needs you.


----------



## mrswill

The only thing keeping Will going was going back to study. He has an amazing tallent and deserves to be doing somthing with it. I guess it would be eaisier if we were the same age but im 4years older than him and i feel like all of my chances have gone to better myself and my role in life is just to take what ever work i can get and sacrifice my life to provide for us both. I feel like im not alowed to talk about what i want or what i need because hes needs will always outweigh my own. I feel so sad for him and selfishly for myself. Im not sure what im supposed to do i just feel a bit lost..


----------



## Darius

That's why you need to look after yourself and use your support network to keep you motivated, my dr gave me antidepresents to help cope. Its a lot to deal with on your own and you need an outlet. Hang in there and remember you matter just as much. Regards sharon


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## Karen

I am here to share some wonderful updates:

* 5 page of replies
* 123 replies
* 20 members
* 2,467 posts

So ... that my friends makes me so very happy. I am glad that we have all been there to encourage one another throughout all of this so let's continue to BLOW things away !!!

Have a great weekend one and all !!


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## SandyUte

Thanks for being cheerful Karen. I needed that.


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## Karen

UR most welcome Sandy !!!


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## samandwes

Hi everyone! Have been a long time viewer of this site/group but just joined recently. I can't even tell you how much this has helped myself and my boyfriend in some of our worst times so thank you! 

Love and respect everyone on here and just wanted to say a thank you from us!


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## Karen

Thank you so very much ... samandwes for coming and sharing. I am praying that you will come back and be with us more often !!


Well my friends I am finally here to share it has been 10 DAYS since my surgery that I had done on my KNEE and so I am finally able to get down here to the basement and on my computer to check in and catch up ... 

The first few days were VERY VERY PAINFUL but with the MEDICATION + REST + MY DAUGHTER = FEELING MUCH BETTER ... so my daughter has helped me out so much and so I did have a ROUGH start but soon I got thru it and I am here. I have a new PAIN MEDICINE that I am on so that is helping me too so ... I still have to take things slow but that I am doing so ... I will be back again soon as time allows !!

Have a great day one and all and see you all soon !!


----------



## SandyUte

Thanks for your update Karen and thanks for joining our group Samandwes, it is super nice to meet you.  I love it when people join our group Karen started, because it is nice to not feel so isolated,  and I know there are a lot of us out there.  How is everyone else doing?  it has been so quiet here lately. I was going thru a rough patch that had nothing to do with crohn's, so I was quiet myself for awhile.  All is doing  better now,  so I also wanted to check in and say "hi" to  everyone,  whether first post or not first post. 
I  think about this little group often and wonder how all of you are.  Have a great day! :ghug:


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## 723crossroads

:ghug:How can I join this thread? I don't remember how? To Join I mean?


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## mrswill

Welcome new people!


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## SandyUte

723crossroads said:


> :ghug:How can I join this thread? I don't remember how? To Join I mean?


 You just did, Lady T, by posting. :heart:   You can bring a lot to this thread,  by being one of the crohnies themselves.


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## 723crossroads

SandyUte said:


> You just did, Lady T, by posting. :heart:   You can bring a lot to this thread,  by being one of the crohnies themselves.


OK, Thanks!


----------



## 723crossroads

Hi everyone. I am here because I want to be of some help to you all. I was diagnosed with crohn's in 2011 and had ulcers in the ileum and colon. Since then I have been undiagnosed down to IBS because no ulcers were present last catscan. But I still have to watch what I eat and don't eat or I pay dearly. I don't suffer as badly as some for sure. My worst part is the having to go alot and it burns my butt and the joint pain is really bad. Even though it had gotten better for awhile. Also skin rashes and itching etc... 
I want to say that crohn's is not a thing YOU can do anything about, You just being a support and understanding when they have to get to the bathroom or are in pain is the best thing you can do. The rest is up to them. Making appt.s etc... Don't totally do everything or feel you have to do everything for them.We are not helpless. But some help is great. Yes there are times we do need more help, but not always. try to treat us as normal as possible and don't lose sight of your love relationship. The romance. Keep that alive!!! That is the most important thing to me. If you look at me like a helpless woman, it makes me feel like I am not sexy or lovable anymore. Well, that's all I'll say for now. 
Thankyou all for caring so much!!! Bless you! Teresa


----------



## Karen

_BOY I have been a BAD BAD ADMIN to my group !!!  Well I guess that I have a GOOD REASON for not being around ... anyway I want to welcome 723 to our family here & I am sure that you will FIND LOTS of GOOD ADVICE here to help you along ... I will RETURN here on Monday to catch up so have a great and wonderful weekend one and all !!!_


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## Georgia Girl

Hi  ~ 
My husband was diagnosed with Crohns approximately 1 year ago. We are still trying to get used to it. He has always been a healthy person, so this is a real challenge.The doctor is still trying to find the right meds... Frustrating, glad I found this forum.


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## SandyUte

Hi, Georgia Girl, and welcome to the forum, and especially this thread. I'm really glad you found us also.  My husband, Doug, also a forum member, has been diagnosed three years, althoughI had it a lot longer,  and it still feels strange to me also.  And the med nightmare, what a nightmare it can be until the right ones are found. If memory serves me correctly, about a year after diagnoses and surgery was when things started to smooth out  for Doug a little in that regard. I hope that gives you some comfort.  just know we are here for you if you want to talk about it,  or just need a friend who understands.  We all do.  Again,  welcome to this forum. I hope you get as much comfort out of it as I have.  Wishing you well!


----------



## 723crossroads

Georgia Girl said:


> Hi  ~
> My husband was diagnosed with Crohns approximately 1 year ago. We are still trying to get used to it. He has always been a healthy person, so this is a real challenge.The doctor is still trying to find the right meds... Frustrating, glad I found this forum.


So happy you came to a good thread like this. Your husband needs you now more than ever. He will have times when he gets really down on himself because of crohn's. You have to be strongest then and lift him up. He needs you to be his helper now and other half. God bless!:ghug:


----------



## Karen

_Georgia Girl ... Thank you for coming in to join us here at the Forum and to be a part of my group here as well ... So, I am praying that you will find lots of friends and lots of support. Each of the ladies here are wonderful and have really helped me out when I first started out here many years ago and just came back just a few months ago so ... be sure to come back and request some of the ladies if your needing extra support ... so wishing you all the best !!!_


----------



## Karen




----------



## Karen

:ghug: 

Do hope that ALL of you had a great FATHER'S DAY.  We had a good one as we went to VISIT my daughter's fiancé in PRISON and had a good visit with him and then we met up with friend whose hubby is also in PRISON and had ah good dinner with her and visited so it was a good day. I will share some pictures sometime soon !!!  Gotta get busy cleaning & getting ready for a family reunion this weekend so take care and see you all soon !!!


----------



## Karen

Well things have been very busy here for me and I am sorry that I have not been around that much but here are the pictures that I told you about ...






 - my daughter w/ her sweetheart !!

I will share the other one soon ... so I have a lot going on this weekend so I need to get ready for it so take care and I shall see you soon !!! Love to all and wishing you all a great weekend ahead !!!


----------



## Sarah321

Hi all,

I am new to this and looking for any similar experience. My husband was diagnosed at Christmas following a long drawn out (and frustrating) diagnosis process! Since then been battling to get it under control. Feel so awful for him as he always feels so ill from the meds.

He has just started on azathioprine and have seen the information out there on the possibility of it causing birth defects when men take it at the time of conception. The research all seems really non conclusive and contradictory but seems like a big decision to make to take the risk especially when it doesn't say the severity of defects. Has anyone got any good or bad experiences of children conceived when their other half was on azathioprine? I have already had one miscarriage when he wasn't on this and am apprehensive as some studies also say this may be as high as 50% of pregnancies?

xx


----------



## Karen

Welcome Sarah ... I would find a good doctor and ask him about this medication your hubby is on and if is a problem ... I will be praying for you that you can get pregnant and that you will be able to keep it going !!  So, stay strong and remember we are here for you. I might - be here as often as I should but I am here when I can !!

Stay strong !!
:kiss: :hug: :hug: :hug:


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## 723crossroads

I agree with Karen, that is the smartest way to go. If there is a chance at all, I wouldn't risk it. Wait until a better time.:hug:


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## tnorgren

I am new to this. My husband has been diagnosed with Crohn's , IBD and ankyolosing spondylilitis. So much to deal with, at least I know that I am not in this alone


----------



## Twixxie

Hi all! I am wife to a lovely man who happens to have Crohn's disease. He was diagnosed in aug 2009 when we had just one baby and four years later now we have three children all under 5. He had 45 cm of bowel removed last year and is in remission with immunosuppressants at the minute. Glad to find other spouses, I really need support at the minute as I am finding DHs toilet time to be an issue for me even though I know he needs it. Hopefully I can find more patience from somewhere.


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## SandyUte

Sarah321 said:


> Hi all,
> 
> I am new to this and looking for any similar experience. My husband was diagnosed at Christmas following a long drawn out (and frustrating) diagnosis process! Since then been battling to get it under control. Feel so awful for him as he always feels so ill from the meds.
> 
> He has just started on azathioprine and have seen the information out there on the possibility of it causing birth defects when men take it at the time of conception. The research all seems really non conclusive and contradictory but seems like a big decision to make to take the risk especially when it doesn't say the severity of defects. Has anyone got any good or bad experiences of children conceived when their other half was on azathioprine? I have already had one miscarriage when he wasn't on this and am apprehensive as some studies also say this may be as high as 50% of pregnancies?
> 
> xx


 just another thought to ponder,  not saying what I would do because I don't know,  but my hubby was pointing out that he has had conversations on the humira thread with those that are wondering if the risk is worth it.  He pointed out that taking humira is for problems in the here and now, can possibly even save someone if their symptoms are bad.  You have to weigh that against  what _might_ happen in the future.  Just a thought.


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## SandyUte

By the way Sarah,  my hubby was diagnosed on father's day 2010  after several years of trips to the ER.  not fun,  is it?


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## 723crossroads

God bless you twixxie, sometimes God gives it to us out of pity for them. It is not their fault. I am the one with the problem and sometimes my huibs doesn't realize the urgency we get when he is on the throne! I have to scream sometimes and then he gets it.:ylol2:


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## SandyUte

Twixxie said:


> Hi all! I am wife to a lovely man who happens to have Crohn's disease. He was diagnosed in aug 2009 when we had just one baby and four years later now we have three children all under 5. He had 45 cm of bowel removed last year and is in remission with immunosuppressants at the minute. Glad to find other spouses, I really need support at the minute as I am finding DHs toilet time to be an issue for me even though I know he needs it. Hopefully I can find more patience from somewhere.


 Sometimes it is hard to be patient,  even when you know they need it.  That is a hard one for me also.  Teresa is right,  though.  It is just darn hard to find that balance in life when someone has a major illness.


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## 723crossroads

Yes, but when my hubs is sick or hurting, I try so hard to be so good to him and understanding. But seriously. men are bigger babies in the long run. Sorry, true!


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## SandyUte

Twixxie said:


> Hi all! I am wife to a lovely man who happens to have Crohn's disease. He was diagnosed in aug 2009 when we had just one baby and four years later now we have three children all under 5. He had 45 cm of bowel removed last year and is in remission with immunosuppressants at the minute. Glad to find other spouses, I really need support at the minute as I am finding DHs toilet time to be an issue for me even though I know he needs it. Hopefully I can find more patience from somewhere.


 By the way, Twixxie, I really appreciate the way you referred to your husband as "a lovely man who happens to have Crohn's disease"  instead of a man  with Crohn's disease.  Our spouses identities are not the disease,  they just happen to have it.  Thank you for saying it that way.  I'm married to a wonderful man myself!  And God bless you on your endeavors with your young family.


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## 723crossroads

Ditto! Bee is an excellent supporter to me and her husband and a great friend to have! God bless her!:hug:


----------



## Ladyshawn

My husband was diagnosed with Crohn's 8 years ago. My husband was relatively healthy (though often tired) when we met 17 years ago.We have daughters who are 6 and 3. We just found out our 3 year old has celiac disease. We are finally managing that. I've felt like a single mother many times. I do everything at home to ensure my husband is healthy enough to work. Now days, a lot of energy is spent on figuring out what to feed my daughter. I have to cook completely different and have stopped even making food for my husband since he's had many flair ups & eats things my 3 year old cannot. I'm overwhelmed. Her celiac disease is serious. Affecting her moods, her skin (bleeding blisters) and bowels. I don't feel I can complain to my husband because when he's "healthy" he helps out so much. He tries so hard. I can't tell him how alone I feel. I tried once and it hurt him. He said he was so sorry and felt he failed me. I've never told him anything close to that again. I don't feel any friends or family understand my situation. Everyday, all day long I worry about what goes in my daughters mouth or if my husband will come home and pass out with just a kiss hello. I'm sorry to lay this all out, but I need to put it out there in the chance someone else understands. Thank you anyone who read this.


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## SandyUte

Ladyshawn said:


> My husband was diagnosed with Crohn's 8 years ago. My husband was relatively healthy (though often tired) when we met 17 years ago. ... We just found out our 3 year old has celiac disease. ... I'm overwhelmed.  ... I don't feel I can complain to my husband because when he's "healthy" he helps out so much. He tries so hard. I can't tell him how alone I feel. ........... in the chance someone else understands.


 Oh,  dear lady!  You are definitely not alone! I would have responded sooner but we were out of cell phone range yesterday for a day trip (my internet connection at present),  then came home to find our power off most of the night with little phone charge. My husband and I met a comparable amount of time ago,  and he also went thru some very hard times until he got his diagnosis, and we also deal with multiple illnesses  in our family.  It is overwhelming, isn't it?  I'm going to write you more tomorrow in a private message,  but hope you can take comfort when you read this until I am able to better respond.  You will find that a lot of people on this forum have more than one person in their family with a serious health issue, and many  people with more than one health issue each.  That is what this forum is for, to help support each other.  God bless you in all your endeavors.  Raising a family is hard enough on its own,  but you will find that,  as my former " special needs" (low IQ, and emotional problems) daughter put it once, we all have "issues."  Hang in there!


----------



## Karen

:hug: Good Morning Family ... Well I am here to catch up with you all & let you know that I am STILL ALIVE as it has just been a very busy summer here for me and I have a few more months of BUSY TIMES so BEAR with me please.  Just to catch you up ... 

:dance: ~ Myself ... I am doing well & since my KNEE SURGERY that I had done back in May { 2 months ago  } I am feeling pretty good for the most part. There have ah been a few times when I was really hurting but it was because of the weather and that does not help much !! So, I just try and keep busy and active so that it doesn't bother me to much !!

:dance: ~ My daughter ... Is doing well and she got to see her fiance yesterday at the Prison he is in and that visit normally is 2 hours but it was cut short to be 45 minutes but she was happy with her visit because she got her KISS & HUG and got to HOLD his hand. So, we are counting down days till our next visit { 8/11 } !!

:dance: ~ Hubby ... Doing well & keeping busy w/ his outside work on the garden and his building. When he is NOT doing that stuff he is having some TIME for just him and that means reading up on how to take care of crops that he planted so, he is doing well otherwise and he is wanting to get the extra weight off so we all are trying to EAT BETTER !!

:hug: So there you have it a UPDATE of what is new with us. So, I am very sorry that I only come in from time to time but you all are in my prayers each and every day ... I also want to take the time to say ...

WELCOME 

to all the new members that have joined us here at: Spouses w/ Crohn's !! So, with that my family I have to get this morning started so take care and I shall see you all soon again !!


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## LozzieStardust

Room for one more?


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## SadieSue

Hey Everyone! I am new here but I decided I really needed someone to talk to who understands what I am going through and maybe offer some advice! . Here is my story (Sorry if it gets long!):

My husband and I were married 6 years ago. We have a 5 year old daughter and a 2 year old son. 
When we had been married only 2 years my husband joined the Army. We moved to WA and he was set to deploy in a few months. About a month before he was to deploy he started having really bad back pain. He didn't know what was going on but it continued to get worse for a few days. Eventually I talked him into letting me take him to the ER where they decided his appendix needed to be taken out. There were complications with the surgery so instead of doing it laparoscopically they had to cut him clear open. Apparently at this point they discovered that his bowel were twisted and so they untwisted them, examined them, and discovered what they believed to be Crohn's disease. Up to this point my husband was VERY healthy aside from some pain in his back occasionally. NEVER any issues with eating or anything GI related. However, after having his appendix removed he started to be in severe pain most every night and especially after eating things that (we now know) he should not have. Many doctors visits and procedures later came the official diagnosis. 
Because he is in such bad shape now the military decided that they could not use him after all and over the next year they completed the paperwork to medically discharge him with a 90% disability rating. This means that my husband is receiving a disability check from the government because he is unable to work. He has gotten to the point where he is depressed. He is on antidepressants and sees a counselor. ANYWAYS...

My real frustration here is this. My day begins when the children wake at about 7:00. I get up do the cleaning and breakfast and care for my kids and then at about noon when I get the kids down for a nap I check on my husband and see if he is ready to take a shower to help relieve some of his back pain. After this he goes about doing whatever he can for the day and I go back to my laundry or whatever. I spend my whole day caring for my children and husband and then in the evening after my husband has exhausted himself I put the kids to bed, and usually climb into bed myself at about 10:30 or 11 and then make a few middle of the night trips to put my 2 year old back to bed or bring my husband anything he needs or take care of my daughter and then do it all again the next day. I am completely exhausted all of the time. I do not know how much longer I can keep this up...

Even on the days when I don't feel good I still have to do it all myself. I basically feel like a single parent most days except for the fact that I have to also care for my sick husband... I know that it sounds like I am complaining and maybe I am but I don't want to complain to him because it is not his fault and I don't want him to feel bad but I do need to tell someone... 

The doctors say his disease is "Under control" and there is nothing else he can do. He is on Humira shots every 2 weeks and while they do seem to help I don't feel like it is enough! His brother who also has Crohn's is able to lead a mostly normal life with a few obvious exceptions.. but my husband has almost no quality of life and I want to know what I can do to help him and make life easier for us both!


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## SadieSue

Oh I forgot to mention that my 2 year old son had severe allergies and I find it very hard to find anything that my husband and son can both eat so cooking is challenging and frustrating....


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## Karen

LozzieStardust said:


> Room for one more?



Of course we have ROOM there is always room for 1 more !!!  Have a great time and if you need a friend drop off a request anytime !! :dance:


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## Karen

SadieSue said:


> Oh I forgot to mention that my 2 year old son had severe allergies and I find it very hard to find anything that my husband and son can both eat so cooking is challenging and frustrating....



:hug: :hug: Welcome SadieSue !!  I am sure that you will be blessed by all the members here in our family of support so come on back and make yourself at home and have a great time and if you need a friend ... I am just a click away !!


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## LozzieStardust

Oh Sadie, hang on in there. 

I don't have kids but I can understand your frustration. I try to once a year go on what I call a 'respite break' I work full time & then look after my poor crohnie fiancé when I get in. I've had to take emergency annual leave before now. 

Is there any scope to have a weekend break? 

Even Drop the kids off with someone else for the day & have some quality time with your husband?


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## Kittenz999

I just joined. My fiance i have been with for almost a year now has crohns. We are not yet married, but i thought joining this support group would be helpful.


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## Karen

Kittenz999 said:


> I just joined. My fiance i have been with for almost a year now has crohns. We are not yet married, but i thought joining this support group would be helpful.



Welcome Aboard Kitten ... We are all here for you and if you ever need a friend just drop by my page anytime !!! :kiss:


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## priscy777

I just joined in. It's been over two years already for my husband to be dealing again with this. The almost 10 years of remission went by so fast... Right now he is just resting, extremely underweight and hard pain, however... stool is not soft or liquid. 3 times being the hospital, one of those times because of the C-Diff bacteria. But being married to him for the past almost 4 years have been nothing bad but really eye opening that I am just really happy to be there for him. I am his cheerleader, his best friend, his shoulder when he just cries, his listener when he looks forward always for the future, he is for me the unique example of courage, fighter, a warrior... a Hero.


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## HisSuportSystem

Hi all I'm new here. Just now found you all. My fiancee has had crohn's for about 3-4yrs now. He's 31yrs old. We have a child on the way and sometimes this disease just is to much. So I thought what better way to learn about it and find support than a message board.


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## HisSuportSystem

mrswill said:


> Maybe you could try and get some supplements in there an all round vitamin supplement would be good preferably one that devolves in water so it can be absorbed with out having to be digested.


I didn't know there was a difference.. what kind would you suggest. I know something like this would help my fiancee out.


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## Karen

Welcome Aboard ... Priscy777 & HisSupportSystem !!

Thank you for joining our little support group here ... I am sure that you will find lots of good folks that are there for you when you need us ... so drop by my page anytime an say HELLO & feel free to pass on a request ... so take care &  keep your head up & stay strong !!

:dance: :dance: :dance:


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## thunderbear1

Hi. Just found yall. 
Ive been married to my husband 11 years together 12 1/2. He was DXd with CD in 2005. Hes had no surgeries and the only meds hes been on has been Asacol, prednisone, Zofran. No 6mp or immunosuppresants. Idk why not. We've seen many GPs & GIs. The last GI saw scarring but didnt tell us we only found out about it thru this new GI by going back thru hubbys med records. It has been a struggle for the past year. Hubby went into a horrible flare. It was so bad that they couldnt do a colonoscopy due to the inflammation in his rectum. Finally about a week and a half ago, he had one done. The removed a polyp. Still waiting on the findings from pathology and from the colonoscopy itself. At the moment, he is passing a little blood and has no energy. Weight gain is slow but hes gaining. I keep a food/calorie journal for him. I have him consuming 3,000+ cals a day. Im just very worried right now. I feel like the docs arent doing enough for him. To top it off, I think our 11 year old son is showing symptoms. Hes been having green stool, bloating, mouth sores and very low energy and fevers. But his pediatrition isnt taking me seriously. So Ive got him a new one that he goes to tomarrow. I feel so alone and overwhelmed right now.


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## Jessiya

Hi everyone! I'm really new to forums and they tend to confuse/overwhelm me, but I wasn't sure where else to go to find some support. My husband was diagnosed with Crohn's 5 1/2 years ago while he was going through Navy boot camp. He was subsequently given a medical discharge. We've been married for just over 3 years, have an almost-2-year-old daughter and our expecting our second baby in December.

Compared to other people, I think my husband's disease is more mild, but it still impacts our lives every day. He's currently not on any medications because we've never seen much improvement with any of them. He hasn't seen a GI in over a year because we haven't been able to find one we like and have been uninsured for the past 6 months or so.

I can really relate to SadieSue and LadyShawn in regards to feeling like a single mom and feeling alone.



Ladyshawn said:


> I've felt like a single mother many times. I do everything at home to ensure my husband is healthy enough to work. Now days, a lot of energy is spent on figuring out what to feed my daughter. I don't feel I can complain to my husband because when he's "healthy" he helps out so much. He tries so hard. I can't tell him how alone I feel. I tried once and it hurt him. He said he was so sorry and felt he failed me. I've never told him anything close to that again. I don't feel any friends or family understand my situation.


Lately, we've been trying an elimination diet but nothing is coming together. Sometimes it seems like food doesn't affect him at all but rather stress. After a bad flare and constant pain for a couple weeks, we had three or four great days where he was feeling good. And then he had a stressful day at work and his pain returned.

I'm just exhausted right now. Being pregnant and having a toddler is tiring anyways, but with the added stress/work caused by Crohn's, I don't know how to keep up. My husband works so hard for us--currently he works 4am to 9am at Lowe's and then goes to a second job doing first aid from 10am to 8pm (usually, but sometimes works as late as 11 or midnight). On top of those two jobs, he is a volunteer firefighter and usually "pulls shift" at the fire station on one of his days off from the first aid job. Occasionally with the fire department he will also do stand-bys for special events or long-distance non-emergency transports. He's working towards a full-time firefighting career and we're starting to see the light at the end of the tunnel. Next weekend he's testing at a local department and also has the possibility of a temp position at another department here.

I am so proud of him for all he does, especially since he does it all while in pain. It's just so hard not having any of him left for me, you know? I don't know how to view our marriage and our life. I feel like in order for me to function well, I would have to view it more as a patient/caregiver relationship than a husband/wife relationship. I can't expect the things that wives are normally able to expect from their husbands.

Anyways, sorry for the long story that really doesn't have a point to it. I just needed to get some things off my chest. Looking forward to getting to know some of you.


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## Jessiya

SadieSue said:


> I am completely exhausted all of the time. I do not know how much longer I can keep this up...
> 
> Even on the days when I don't feel good I still have to do it all myself. I basically feel like a single parent most days except for the fact that I have to also care for my sick husband... I know that it sounds like I am complaining and maybe I am but I don't want to complain to him because it is not his fault and I don't want him to feel bad but I do need to tell someone...


This also really resonated with me, but I didn't know how to quote two people. With the elimination diet we've been trying, in order for me to be able to keep up with the bare minimum, I get up at 7:30 with our daughter, get breakfast for us, empty the dishwasher and clean up the kitchen, and start preparing food for the rest of the day and the next. Between cooking for my husband and feeding my picky-eater daughter, I spend most of the day cooking and cleaning the kitchen. I try to have dinner ready for my husband when he gets home around 8:30 or 9pm and then he goes right to bed. I clean up from dinner and finish packing his lunch (really, breakfast, lunch and several snacks) for the next day. I usually get to bed around midnight.

If I don't stay on top of cooking, we end up eating things that probably aren't good for my husband (even though we haven't found any strong connections to food, we suspect they're there). If I have anything else going on during the day, I get really behind. Like SadieSue said, even when I don't feel good, I haven't to do it all anyways. It's hard to not resent my husband sometimes when he's able to "take a day off" or "check out" from his normal non-work responsibilities (which lately haven't been much anyways) but when he does, I have to pick up the slack. I know he needs to rest and I wouldn't want him to not, but I just want to be able to do the same when I'm not feeling good. But it's rare that I actually am in worse shape physically than him so I never feel right taking a break like that. Are you able to relate?


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## Karen

I want to say WELCOME to ALL OUR NEW MEMBERS that have come along to JOIN US here and so I am so VERY HAPPY to see OUR SMALL GROUP here continue to GROW so if you have a friend, family member that needs some ENCOURAGEMENT this is the place to come !! So, have a great time here !!


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## Karen

_Good morning. The world goes up and goes down. The sunshine follows the rain and yesterday's sneer and yesterday's frown can never come over again._

:hug: :hug: :hug: :hug: :hug: :hug:


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## LozzieStardust

I don't know what to do.

My OH's symptoms have changed so radically, He's lost 51lb (and counting...) in 4 months. He's hardly eating as it causes him agonising pain to do so. He's on Fortisip Rx drinks (in Uk not sure of US name) & can't keep anything 'in'. He went for a CT scan today but we won't get the results for 2 weeks, He's so drained & tired. I'm sure he's anemic due to blood loss through passing it & he's taking iron tablets, He's on Prednisolone (5mg x6 daily) for Gout but the GP said that should help the CD. He's on Suppo's twice a day (bless him) as well as multi vits, loperimide when he can but on 15+ seem to stop him going then cause mega problems after. He's on Tramadol & Diazipam as needed. He's been on countless AD's & had a Psych referral but struggles to make it out to them due to the nature of the beast. They are trying to send one to the house soon.

He's a little flushed in the cheeks atm but otherwise looks so fragile, almost a 'green' tinge. He's been in so much pain the last few months, but the GI's don't think it's totally crohns that is causing this. they think it is severe IBS-D but I've not seen him in this much pain ever before. 

I keep telling him I love him and asking if there is anything I can do and he says no. I'm sure there is nothing I can do, He is now wanting to sleep constantly as it's the only way he is not in pain. I don't know how I can support him further/what I can do to make him feel better.


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## Kittenz999

Sorry to hear that, Lozzie.
My fiance has been having alot of pain issues lately aswell. 
I'm very worried by the fact that when he is not on pain medication he is extremely quiet and irritable to the point where it makes me feel alone. 2 days ago he ran out of the pain meds he got in the ER and his GI wouldn't give him any because their practice is against it and they say he shouldn't still be having all this pain this long after his small bowel resection.
The last 2 days have been terrible. I'm not sure if it just seems to be worse than usual because of all the other problems we have now (both of us were out of work for a while because he had surgery and i got in a car accident a month later and we are now in danger of losing our place to live... With family... -.- they just don't want to be understanding or give us a reasonable amount of time to get caught up with rent for the month we missed. At first they told us if we get caught up or they see we're trying to by the 5th we can stay, but now theyre saying if i dont get a new job in 2 weeks i have to leave.. This is not easy as i have no car. The closest place i have to go back to if i dont find something will be over 1,000 miles away from him.. We've lived together since day one of our relationship)
I just wish i could feel like he's here for me more.. I've been going through everyday knowing our last day together could be coming up and it scares me more than anything and want us to enjoy the rest of our time together, but with him in this much pain, he's not himself... I don't want to be all those states away leaving for who knows how long feeling like we were on bad terms or not as close as we could have been. I spent my last $40 on his GI visit yesterday which was disappointing to say the least... All he did was tell us what we already knew.
When i ask if there's anything i can do for him he says theres really nothing i can do to help. I know he's starting to feel like giving up... Nothings going right..


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## LozzieStardust

It's so hard. I think it genuinely boils down to feeling us helpers feeling so helpless!

The pain is horrible, it turns the nicest guy into a bear with a sore head. It really sounds like you re under so much stress atm! Too, the both of you are bound to stretch apart a tad under those circumstances let alone the ibd in the mix, How is it working out?

After 2 a&e visits & another 10lb loss he's been booked in for a colonoscopy tomorrow. He's under going the prep kit. We've had 2 sleep separately for 5days now due to his pain/needing room! I 'miss' him even though he is in the house really!!! 

I miss how he was 6 months ago! He'd managed to get a bus for the 1st time in 3.5years then. 

Good luck Kittenz


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## Kittenz999

We just got out of the hospital yesterday from my fiances colonoscopy. We were there for 3 days and they made us sleep in separate beds at the hospital. It was terrible. He wanted me in his hospital bed but this one nurse assistant kept yelling at us. Then i moved my pull out couch next to his bed because he was complaining that i wasnt close enough and he was anxious.. The same nurse assistant told me i had to move it back against the wall because if the nurses couldnt get to every side of his bed he could die. Wtf do they think he could die from? He was there for a colonoscopy.. Wtf!
The results didnt show anything so we still have no idea what's causing all the pain & he has lost more hope. 
Im trying to find a job around here so i can stay with him & i called a legal funding group to see if they can give me some money up front so we can get a new car and pay rent.

I hope your fiances colonoscopy goes well and he starts feeling better!


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## CrohnieWife

Hello all! I'm new to the forum, I've been looking for other spouses who understand the other view of things, and I've been with my husband for 4 years. He was diagnosed at the age of 22 in 1993. He has on top of the Crohn's, 2 hatial hernias - one just under his sternum and one where his ostomy was. These cause the most issues, as his Crohn's is controlled well with Remicade every 8 weeks and Tylenol 3 for pain and Imuran. He suffers from depression as a side effect of the Crohn's, and is on medication for this as well. We've been through a big rough patch lately, and it's very hard for us to stay stress free, as I work full-time outside of the home, and he is at home with our three children (two are in school). He cannot work due to the hernias, and I know this obviously does not help with his depression. We are working on things with each other, and are doing better, but as a wife, it is very hard to truly grasp how he is feeling day to day. 

Last week, we went to dinner before church, and he took a bite of his sandwich and immediately ran to the restroom. He vomited violently for the next 12 hours, about every half hour. He has not had solid foods since that last bite, and tomorrow morning (Thursday) he is going to be getting an endoscopy done on his esophagus. We are both very nervous about it and praying it's not something very serious. 

I would just like to get to know other spouses and share stories and offer others support as well. Thank you for reading, and God bless.


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## LozzieStardust

Well, some interesting news in camp Laura & Craig

After his colonoscopy yesterday he's being admitted for a blood transfusion and IV methopredisolone?! 

Any tips for surviving hospital?


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## IFeelAlone

Hey All!!
Thought I would join -- My wife has been suffering with Crohns for many years -- I feel alone because there seems that there is not much that I can do... Except sit there - currently no medications are working for her (including clinical studies). Her Dr. might be putting her back on Pred :evil: - neither of us are excited.

She is loosing weight fast -- just so hard to watch and seems that there is nothing that I can do -- even a hug most days is not possible because it hurts her. 

Feeling frusterated and alone :ybatty:


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## Kittenz999

Sorry to hear that.. You're not alone though. Alot of us know exactly how you feel!


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## IFeelAlone

I just wish there was more I could do.


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## Kittenz999

I know the feeling. I hate seeing my fiance in pain and suffering, but i know the best thing i can do is be supportive of him in hos treatment and try to take his mind off of the pain.


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## Karen

Thank you one and all for making OUR LITTLE GROUP GROW !!


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## cmoosey

New here.  We're really struggling right now. My hubby has a looooong medical history including transplant, PTLD (cancer), and now Crohn's.  Is it always a long and trying path to get "normal"???  He was just officially diagnosed this year in May but it was his 3rd flare up in 12 months and right now is flare up #4.  16 days and counting.  I don't know how to help him.  I'm calling the dr in the morning (he's been home this time and Pentasa, then additionally encocart and 40mg of prednisone is not changing things).  He's getting so depressed.  I'm so thankful for the 30 minutes he does spend with my son cuddling with him on the bed.  He's hardly eating.  Today his only out of bed trips were to the bathroom.  I feel like this is so much harder than all the other times.  At least with the transplant and with cancer there were clear cut solutions and they had positive effects rapidly.  This is so hard.


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## cmoosey

Ladyshawn said:


> My husband was diagnosed with Crohn's 8 years ago. My husband was relatively healthy (though often tired) when we met 17 years ago.We have daughters who are 6 and 3. We just found out our 3 year old has celiac disease. We are finally managing that. I've felt like a single mother many times. I do everything at home to ensure my husband is healthy enough to work. Now days, a lot of energy is spent on figuring out what to feed my daughter. I have to cook completely different and have stopped even making food for my husband since he's had many flair ups & eats things my 3 year old cannot. I'm overwhelmed. Her celiac disease is serious. Affecting her moods, her skin (bleeding blisters) and bowels. I don't feel I can complain to my husband because when he's "healthy" he helps out so much. He tries so hard. I can't tell him how alone I feel. I tried once and it hurt him. He said he was so sorry and felt he failed me. I've never told him anything close to that again. I don't feel any friends or family understand my situation. Everyday, all day long I worry about what goes in my daughters mouth or if my husband will come home and pass out with just a kiss hello. I'm sorry to lay this all out, but I need to put it out there in the chance someone else understands. Thank you anyone who read this.


I understand about the complaining.  I know he is in pain and he is struggling.  But its not easy being on this side of the situation either.  I've been sole parenting for 16 days now with this uncontrolled flare up.  And I'm trying to find us consistent childcare and working part time.  It is hard and exhausted doesn't even begin to describe it.  No, I don't know what its like to be in his shoes, but I feel alone.  I'm doing eveything for our 2 kids who are 24m and 4m.  I feel bad complaining to my family all the time but I can't tell him because he just gets more depressed about it all.  And while I want to cry and complain to him, I feel awful for him too.  This just sucks all around.


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## Kittenz999

Unfortunately crohn's disease is a constant battle. My fiance has been going through what seems to be a flare for the last year (even though he has no signs on any kind of tests indicating any inflamation or any kind of flare & after his surgery his crohn's doesnt appear to be active.) it seems like a never ending struggle. I guess all we can do is hope the doctors find treaments that work.. Unfortunately that will take trying a ton of options that do nothing!


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## LozzieStardust

Well after being 'undiagnosed' for 3.5 years, told its IBS and it's functional, then its probably v. mild crohns & IBS we have been told its IBD. 2 trips to a&e in the space of 1 week, a CT scan that said it was active IBD & an emergency colonoscopy later they have decided its likely to be severe crohns & he had been admitted for IV treatment & taken seriously. 

He'd been in a severe flair for 4 months prior, the Drs still not believing us. 

It's so bizarre! I really feel for you Kittenz, I can only surgest you keep trying & keep that chin up!


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## LozzieStardust

Also his IV predisolone induced grumps are the worst XD!


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## Jison0612

My wife says she is gonna write a book on braking care of a husband with Crohn's!!! Lol she says my body is way to complicated and it takes way to much medication to function!! I gotta agree with her! Have a blessed day u guys


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## LozzieStardust

Jison0612 said:


> My wife says she is gonna write a book on braking care of a husband with Crohn's!!! Lol she says my body is way to complicated and it takes way to much medication to function!! I gotta agree with her! Have a blessed day u guys


Oh I feel a colab coming on. We could all chip in XD


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## thunderbear1

Hubby is having a hard time. Lost 4lbs in 2 weeks. Weak and no energy. Depression setting in. Ugh. I feel so helpless and worried.


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## LozzieStardust

All you can do is be there to support him, does he need a bit of CBT to overcome the depression, has he tried a hot water bottle for the cramps?


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## eagerbilt

I'm glad I found this group...thank you for creating it.

My wife was diagnosed with Crohn's a little over a month ago...her older brother has had it for several years and has had many operations.

My wife has been prescribed Imuran about a month ago and I think it's starting to kick in but not exactly in a good way. I'm afraid she might be having an allergic reaction to it, starting this past weekend. She's been going through feverish chills, achy muscles and says her skin hurts...she lays in bed and can't keep still and she's been vomiting but getting dry heaves. Trying to get her into her doctor today, but should we be going to the emergency if the doctor is booked?

Any advice will certainly be appreciated.


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## Kittenz999

Unfortunately, frequent trips to the ER are a part of Crohn's disease. I'd say take her if you can't get her into the doctors today. They will be able to speak to her GI.. Or at least A GI if hers is unavailable to figure out if the meds could be causing all this and maybe put her on something else. The ER could also control her pain and nausea while she's there. Bring phone chargers and anything else you may need in case they admit her.


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## eagerbilt

Kittenz999 said:


> Unfortunately, frequent trips to the ER are a part of Crohn's disease. I'd say take her if you can't get her into the doctors today. They will be able to speak to her GI.. Or at least A GI if hers is unavailable to figure out if the meds could be causing all this and maybe put her on something else. The ER could also control her pain and nausea while she's there. Bring phone chargers and anything else you may need in case they admit her.


Thank you. Doctor can't see her this week for some reason...not her clinic week or something, so we've been told to call the nurse practitioner (sorry, all this is new to me). Just waiting on a call from the nurse now. Be going to emerg if nothing else.

Thanks again.


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## SandyUte

I would take her to the ER  immediately.  Her symptoms don't sound good,  and even if it turns out to be nothing significant,  some meds (not  to mention the disease itself) can have serious complications.   Good luck with all this and let us know how things go.  We are here for you.


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## mum16

Hi, thanks for creating this group for "the behind the scenes" crew. I've got a daughter and a husband with Crohn's. one can be tough, two is really really tough! And smelly)
My daughter is responding well to meds and now in remission, my husband was misdiagnosed as having IBS for more than 25 years, despite numerous visits to doctors, colonoscopies, in several countries on several continents. He finally got diagnosed 2 month ago, thanks to my daughters GI, who was smart enough to link the two, and literally look a bit further. 
It will be good to have a group to voice frustrations and fears with like minded people. Thanks again.


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## stephensgirl

Hi there I've been helping out my partner for over a year now. We are hoping to get married next year. He has had a substantial amount of intestine removed and is on 2 different medications I am not sure what they are though. He general deals with his Crohns in his own way and can be a bit tight lipped about it. He does however let me know when he is having a flare up or has sprouted an abscess. I am so glad you started this Karen. I know how tough it can be on partners as well as those who actually have the disease.


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## Karen

:hug: Sorry that I have NOT been around much but things here are VERY HARD for us right now .. My daughter is going thru somethings right now and I will be wanting to be there for her so ... if you need something just PM ME and I will do my best to get back to U when I get back ... It should be just a few days that I am gone so see you soon !!  Also I am glad that I have been able to give some of you HOPE with starting this group !!  So, take care and I shall be back soon !!

:hug: :hug: :hug: :hug:


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## summerstorm

Hi all .. just wanted to introduce myself to this group .. i wrote another intro a few days ago and when i went to post it, it somehow disappeared  lol .. i just didn't have the heart to re-write it at the time  :voodoo:

i've been with my hubby over 3 years now, it was a long distance thing until he moved in with me just over a year ago .. he was diagnosed with crohns in '92, had a resection in "99 .. just started remicade on Sept 7th 2013

my hubby rarely complains and like stephensgirl's finace he is pretty tight lipped about everything ..  i usually have to guess when he is having a bad time, but its not rocket science to notice when he has increased time in the bathroom, major bloating and is a total cranky pants .. :tongue: he has beautiful pale blue eyes and they grow even paler when he's unwell .... 

sometimes i wish he would be more forthcoming about how he feels, and talk a little more with me about what he's going through because our relationship is fairly new and we've only been living together just over a year so sometimes i wonder and worry if his moodiness is related to his crohns or to "US"  know what i mean ?? ................ 

i can only imagine what he went through when we first started dating .. he would come and stay for weekends and never told me about his crohns .. how on earth did he hold all that gas in !!!! lol ... when i found out that he was practically making himself sick by not "passing gas" infront of me i rattled his leg one night while we were cuddling and "it was on" after that :rof:
(i'm in no means making fun of the pains they go through with gas but you gotta laugh at stuff right??!!)

i'm still trying to figure out his "trigger" foods (as he says, basically everything) and that of course doesn't help much .. i've got an ap on my iPhone that helps to track food and how he feels but he resents me asking about all he's eaten through the day "sigh" .. so that only lasted about a week before i stopped ..

i'm really hoping that the Remicade will help get him into remission and once he is feeling better i can maybe try again to figure out a healthy food diet for him ..

anyway, thanx for reading and I'm looking forward to getting and giving some support!!


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## SandyUte

Hi Summerstorm.  Welcome to the forum.  If Doug (my hubby) reads this (he is also a forum member),  I'm in trouble because he is also a very private person. I just have to tell you something funny, though.   Speaking of holding gas in, I always tell Doug that I can tell the second he goes to sleep,  because that is when the gas comes  out.  Poor guy. I think he has tried to control it for so long now, he doesn't even know He is doing it. 
 in regard to helping them with what they eat, I have learned that their needs,  whether physical,  or emotional, or both,  change constantly,  so what they say they can't eat one day,  they want another.  it also stinks that the diets that are best for most people are not the best for those with an IBD, ie  high fiber diets. I do know the things that are most irritating to cronies tummies are things like fibrous fruits and vegetables,  especially things like the skins of apples or potatoes,  and seeds in things like raspberry jam,  tomatoes,  as well as onions.  Rice is something that most people can tolerate better than other foods,  which seems counterintuitive,  but had long been known to be mild for the digestion. I think for those who have major illness,  all we can do is let them choose how to deal with their body,  but support them emotionally and treat them as normally as we can because they get enough reminders they have an illness.  And,  of course,  let them know we have a shoulder if they ever need to lean on it.  and do what we can when we know they are not feeling well to make things easier.  This is a hard one for me because I have enough health problems of my own,  and it gets hard when neither one of us are up to cooking,  etc.
 We all wish you well though,  and I wish all of you well.  sometimes I think one of the hardest roles is that if a caretaker,  because we feel so helpless.  hugs to all. :ghug:


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## summerstorm

I think for those who have major illness,  all we can do is let them choose how to deal with their body,  but support them emotionally and treat them as normally as we can because they get enough reminders they have an illness.  And,  of course,  let them know we have a shoulder if they ever need to lean on it.  and do what we can when we know they are not feeling well to make things easier.  


thank you SandyUte for those words !! they really made me sit back and think and you are so right!!! .. i'm so glad you said them!

I'm a "fixer", thats just my personality  .. and sometimes i jump in and try too hard to "help"  .. when i first knew about his illness i scoured the internet reading up on everything ... i ordered on line CD's about crohns, i found cook books, i downloaded recipes, i visited various sites .......  lol i felt it was "us" against "it" .... and it is to a certain degree .. BUT i probably drove him crazy with all my suggestions, new ideas and "help"  :eek2:   .. after all he's had the disease since "92 and i'm just a newbee 

ultimately you are right and he is the one with the disease and i need to step back at times and let him deal with it in his own way .. i will keep that in mind for sure because i know i maybe bug him about things he should and should not be eating ...... :ybatty:

i have however found some good things that have helped him tremendously and he is grateful that i made him try them 

i found that turmeric helps to calm his tummy (also fennel and ginger) (probably you all know that) .. he doesn't necessarily like to have them in his food and u can't always put them in food so i decided to try and make my own pill forms ... i bought a machine for making pills and i now do a combination of the 3 powders and fill empty capsules for him .. he takes them with meals and it really has helped !!! he swears by them .. says he notices a difference on how he is feeling (and gas) on the days that he forgets to take them .. we spoke with his doc and he says he can't see any problems with him taking them and if it helps by all means go for it 

SandyUte, thanx for the laugh, your hubby and i are pretty similar ...  as soon as i relax and fall asleep i have the same issue, sometimes i even wake myself up lol .. its for all of us "gas *imploders*" who will not let it out through the day .. its gotta come out sometime lol :ylol2:


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## MLGKU

This is my first time posting on a forum, ever...so I have no idea how this works. But, I came in search of something exactly like this. My husband was diagnosed with Crohn's in 2010 after a couple years of symptoms. He is currently taking Humira and has not seen remission. We have an appointment coming up to have some genetic testing done to see if I am a carrier of Crohn's. It's a concern because my maternal grandmother was diagnosed with it right before she died of liver cancer. With the pain and suffering that my husband has had to endure, he knows that he does not want to have biological children if I'm a carrier. I can't blame him for that, however I have wanted to carry my own babies since I can remember. Has anyone else been in this situation? I love him more than my desire to have babies, but advice is needed, as I feel very alone in this.


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## Karen

:hug: please reply to this ladies and gents ... Who in the family is the one with the Crohn's { yourself or husband or other family member member } with me it is my ~ hubby :kiss:


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## summerstorm

my hubby is the one with crohns .. 

MLGKU: 

my hubby has 3 biological children from his previous marriage .. they are 27, 22, and 18 .. so far they have shown no signs of having the disease .. i'm unsure of his ex-wife's state of health but i know that she doesn't have the disease (whether or not she is a carrier i dont know) .. 

does anyone know what the chances are of having a child with crohns if both parents carry the gene?


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## thauck

My boyfriend of 3 years got diagnosed with Crohn's Disease in Feb of last year. He has been to see so many doctors in Las Vegas & he can't seem to find someone here who will assist him and sit down with him and discuss options for treatment like diet paired with pills. They just want to shove meds at  him and send him home for 2 months at a time. It has become a time where I feel like I need to take charge! He isn't getting any relief or help and I am so sad to watch him be in pain all the time. We fight sometimes because he says I nag about going to the doctors all the time and I know he is frustrated too and in pain. I don't know what to do and I feel like the more time we let go by the worse off he is getting, but we don't know where to turn for help. This disease is causing a huge issue with our lives and I want to help. In the past month he has had more bowel movements and more pain and it seems to us nothing we have tried so far is working. Someone please help or tell me you have been here before? We don't know where to go from here and need a GOOD doctor!


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## cottonbud

ohh boy i know that feeling, the docs make the diagnosis and send you home with the meds, the meds make things worse and no one seems to listen. I dont really have any wonderful advice just honesty and I hope that ur man gets some relief soon. we are 1 year into a diagnosis with no relief and a few hospital stays, we now dont even share a bed as hubby needs to sleep on his back....usually with his mouth wide open and snoring...and im a light sleeper!!!! not very romantic but sleep is way to important especially with the meds making him so exhausted. good luck i do think u have to be mighty patient when a loved one has Crohns and thankfully this forum is great for letting u express how u feel. xxxx


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## thauck

I can't thank you all enough for your encouraging words. It makes me feel better knowing others are going through the same struggles. I know it sounds silly- but it helps keep me sane!!


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## Karen

Good Morning from Ohio ... Just wanted to STOP in and say HELLO and see how everyone is doing ?  Me it's been a busy time here for me. With my daughter working almost every day & that leaves me to do things around the house w/out her I am not here as much so today I am taking time for me and going to visit a friend and then run some errands so I wanted 2 stop and say hello.

And I also wanted to take time time to say ...







To all who have come to join us here !!  And, so here in a few days I will share a update of how things look here in our group so be sure to check back in and say hello !!  Well it is time for me to head off so see you all soon again !!


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## summerstorm

thauck said:


> I can't thank you all enough for your encouraging words. It makes me feel better knowing others are going through the same struggles. I know it sounds silly- but it helps keep me sane!!


thauck:

i feel your pain and frustration .. its hard to watch someone you love suffer so much and not be able to do anything to make it easier for them .. 

i added a food tracker application to my iPhone specifically designed for crohns and tried to keep track of my hubbies food intake to see if we could pin point trigger foods as it is so hard to actually figure out what foods bother him and what do not .. i didn't have much luck with this as my hubby started to resent me always asking him what he ate through the day (he is not in remission and understandably a little cranky at times) .. but the doctor has recommended keeping a food log (when the recommendation comes from authority he is more apt to listen lol)  so i am going to approach this with him again when he is feeling a little better (he just started a drug called Remicade and there has been a little improvement in how he feels) .. 

if your hubby will cooperate, pin pointing trigger foods and avoiding them is a huge help .. my hubbies doc recommended a gluten free (or gluten reduced) diet .. my hubby loves his lunch sandwiches and crackers and pretzels etc ... and it was a real eye opener to see how much wheat etc was actually in his diet .. maybe try to cut down on gluten in your hubby's diet .. i have just started to look into this so i can't tell you how its working but we are going to try this idea and see if it helps him  

i can honestly say i sometimes get a little frustrated with him because i try so hard to make meals and send him lunches that are crohns friendly and then when he finally feels better he tends to go back to his old habits of eating food that he loves but he knows triggers him and then we have to start all over again trying to calm the beast  .. i try to understand his issues of wanting to eat what he wants when he feels good and in a way yes he is only hurting himself BUT it also does hurt "us" because he starts to not feel well and then he's cranky and tired and unsociable and it takes so long to get him feeling good again ...  i suffer too ... does this sound a little selfish on my part?? maybe .. but when he goes off the rails we both go off, know what i mean? .. 

as i re-read that last comment i do feel selfish saying it .. because it shouldn't be about me .. but forgive me cause this is a forum for us spouses and i just needed a vent ...   there i'm good now .. thanx for reading


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## Jessimon

Thank you for creating this group Karen.  My wife was diagnosed two years ago with Crohn's.  I have felt in the dark and been unable to help her.  I hope to change that...

Cheers


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## Karen

Jessimon said:


> Thank you for creating this group Karen.  My wife was diagnosed two years ago with Crohn's.  I have felt in the dark and been unable to help her.  I hope to change that... Cheers



Your most welcome sir ... I am glad to see that some MEN are STEPPING UP and coming and joining us here ... So, I'm here for you as well as the other members and so feel free to send on a request or anything your needing help with and I will do what I can ... so once again WELCOME ABOARD !!!


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## Karen

As of today ... 4:55 pm Wednesday - October 16th !!


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## stephensgirl

My boyfriend has had Crohn's for 21 years and just finally got approval for a disability pension after fighting for the last 5 years and they told him he would need to revisit in 3 years as according to them you can outgrow it. I laughed at first when he told me but it also made me very angry that people who are dealing with disabled persons has no clue about such a disease and can make such a stupid comment. He has some very good days and some definite bad days with bloating and lesions. The poor man practically lives in the bathroom some days. 10 years ago he had surgery and they removed a lot and I mean a lot he wishes it had been less. I can't do a whole lot for him but what I do do is listen when he needs to vent and I rub in creams and give massages when needed. He also suffers bad back acne from sweating so much as a side effect to his medication so I make sure to help keep his back as clear as possible. We as parners and spouses of those with Crohn's might not be able to do a lot but we can certainly be there in any way they need us and I am thankful for this forum and all the support we get here.


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## Jessimon

Stephensgirl thank you.
  You reminded me what this is all about.  You sound like a loving supportive wife and I need to try and be more like you, for my wife.  
Cheers


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## armen

I am trying to support my brother's family. His wife is suffering from Crohn's disease and living with it. So this forum is really helpful. Thank you for sharing tips.


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## Karen

Welcome Aboard Armen ... Good to have you here and you will find lots of support here with us ... I am trying to check in with the group every few days so take care and make yourself at home !!

:ghug: :ghug: :ghug: :ghug:


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## Mrs. A

Everyone here seems so focused on being the support, but who is supporting you? I am really struggling right now. my husband was diagnosed about 8 years ago and we are going through the worst flare up he has ever had. To top it of we are expecting our first child together. He has been in and out of the hospital for the first time ever, he has lots of anxiety do to the disease and the steriods he is on. Through all the pain he works full time and overtime to provide while I work towards a degree i nursing. I do my best to take care of home, our 15 yr old son, two dogs, and make sure he is good with doctors appointments, medications, and just over all emotional support. Lately he is very distant, barely touches me. He comes home from work sits in front of the tv. The other day I tried to talk to him about the baby and how I was feeling a little down and he completley lost it. He even said in anger " F you and the baby. While I understand that he is going through a tough time and the medications can make it difficult to control emotion I am having a difficult time moving past this. I could really use some words of encouragement. I feel like I am doing all I can to be there for him but the pregnancy has just been tough to go through basically alone.  please help! :sign0085:


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## stephensgirl

Mrs.A    
 I feel your pain sometimes as the supporter you yourself need some support. I have been through periods of severe flare ups with Stephen and he has said a few nasty things nothing to serious but he will also not want to discuss how he is feeling or tell me exactly what is happening with him at that time. That can be very frustrating I can't imagine being pregnant while he was going through a flare. We are here for you. We can listen, offer advice, or just give you a hug and you can be sure you are getting a very big hug from this Canadian girl right now. As for advice you are just going to need to take 1 day at a time and stick with venting to us and sharing your feelings with us. This will pass and I'm sure he will feel terrible about his reaction to your feelings but flares can definitely make someone temperamental just like your pregnancy mood swings. I can also help there as I have 2 kids and have raised foster kids and several nieces and nephews. I know all the ups and downs of pregnancy so feel free to complain about all the swelling, cramping and the emotional rollercoaster that you want to share. You can even PM me if you like. Take care of yourself. Giving all the love and support I can!!!


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## LozzieStardust

Predisolone could even make Ghandi into a teenage hulk. However, I found that I had to call Craig on it for him to realise what he was saying even when he is in the hospital. 

But that is just how we are as a couple. Oh Hun it is hard when they are being such a twonk. Lots of positivity your way.


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## jnine

Wow, Mrs A - strong wishes of loving kindness coming your way!!!  My husband and I have been married 17 years.  We started dating while I was in graduate school.  He was born premature, so had asthma, allergies, etc. as a child, and started smoking when he has 12!!!  I told him I wasn't going to marry him unless he stopped smoking, because I didn't want to be a widow at age 52.  He did stop smoking.  He tried to stop the day of our wedding, but we had a small wedding and the reception was in a sports bar !! so I said, please smoke and enjoy today and you can stop tomorrow!  And he did!

But, I got pregnant with our daughter 3 months later.  When I was 8 months pregnant, he started having trouble with his back.  He has had many many problems since then - 2 neck surgeries, 3 sinus surgeries, kidney stones, pleurisy that lasted 6 months, 2 back surgeries, I don't know what else.  He still has asthma and severe allergies - he rarely (if ever) feels good, and that is him talking, not me.  He was diagnosed with Crohn's last May, but had been having difficulty for at least a year before that.  He puts up with so much, I  know he was in severe pain for a long time before they diagnosed it, just because he is so used to putting up with physical discomfort.  Poor guy.

Anyway, we had significant marriage problems about 10 years ago, and both of us learned to work on having a positive attitude and we turned our marriage around.  BUT, as Lozzie said, prednizone can make anyone into an ogre.  And that doesn't even take into account what feeling miserable and being worried about your future can do!!  I know you  have so much on your plate right now - being in school, being pregnant, and putting up with a miserable grouch.  Glad you found this support group - hope you have other support people in your life, too, though I think it can be difficult as a woman with so much responsibility to find real time to connect with real people!!

If I can do it, so can you...I like the title of the book I saw someone on this site has - this is my first day on this site, and I can't find who it was now... but i think it was "You are stronger than you think."  I guess we all are.

Glad to have this thread.  I am exhausted now - but I do feel better.  Thanks to all of you for being here.

Jeanine :hug:


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## Karen

I am so VERY HAPPY HAPPY HAPPY { yes a quote from Duck Dynasty } to see our little support group GROW ... so please pass the word around and so if anyone is wanting a friend feel free to pass one along ... So, I am here to wish each of you a blessed ~ week ahead ... sending you all lots of prayers and blessings !!

So welcome to all those NEW MEMBERS that have come aboard !!  As I said we are a very supportive group here so let us all be there for each other !!

:ghug: :ghug: :ghug: :ghug: :ghug:


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## jwfoise

Mrs. A said:


> I could really use some words of encouragement. I feel like I am doing all I can to be there for him but the pregnancy has just been tough to go through basically alone.  please help! :sign0085:


Best thoughts to you Mrs. A, that sounds very tough.  Of course, you have this forum for words of encouragement.

You might also see if there is some live and in-person help in your town.  Even if there isn't a support group of spouses of Crohnies, there might be some general support groups for caregivers and similar.  You might ask your doctor or his about it.

There may also be a local chapter of the Crohns & Colitis foundation that could help.

Best of luck.


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## Karen

I am HERE to WISH each and everyone A HAPPY THANKSGIVING ... I am sure that it will be a little early but I'm going 2 VERY BUSY this next week so I wanted 2 get this up before I forgot ... so wishing you all a great day w/ your families and loved ones.  So, be sure to come back and share with us how your day went !!  So, till then take care and see you soon !!

:ghug: :ghug:


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## sjm18

Hello  

I am here for help supporting my husband. He has been suffering since he was 19 and has never really had a grasp on the condition. Emergency surgery has come and gone and i now need to know how to help him as much as possible. He is suffering from depression and pain and isn't well enough to help himself. So im going to do everything i can to be there for him. I look forward to getting support from this group. We are still young and have our whole lives ahead. Married for almost 5 years and in our late 20's...we still have a lot of living to do and i want to do it as healthy as possible.


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## Karen

*sjm18 ... Welcome Aboard and thanks for coming into our little corner of the FORUM ... I am sure that you will get lots of tips and lots of support here so do come back and share with us from time to time !!*


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## MeganR

I just wanted to say hey. I joined the forum because I'm actually the person with crohns but I thought that if I joined this thread my husband might be willing to read and speak with others who are in his situation. I know he feels helpless and that's hard for a man. Sometimes I feel responsible for him being depressed which stresses me out more and makes everything worse. Just as I need support he does too. I just don't know what to do for him to make him feel better. He's never seen anyone as sick as I am a she doesn't know how to react or treat me.


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## Karen

Welcome Aboard Megan !!  It is good to see you here !!  I am sure that you will find lots of LOVE & SUPPORT here in the group. If your needing someone to talk with I'm a CLICK AWAY ... I might not be here that much but I do stop in from time to time to welcome new members to the group ... so have a great time here and be careful ~ over Thanksgiving !!

:ghug: :ghug: :ghug:


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## Karen

:ghug: Monday is the 8 year Crohnnie Anniversary for my husband ... It may not show on my ticker ... but today 8 years ago he went into the HOSPITAL and found out that he has Crohns & so he is doing much better compared to back then ... Here is a few things ... 

* Weight ... 2005 = 165 / 2013 = 210
* Eating ... Pretty much just soup or broth / today - cookies and other stuff
* Feeling ... 2005 = crappy / 2013 = has his good and bad days

So, I am praying that I never have to see him go thru all that again ... I LOVE him very much and I want to keep him around for as long as I can !!


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## jwfoise

Karen said:


> Eating ... Pretty much just soap or broth / today - cookies and other stuff


Well, there's your problem right there, he shouldn't be eating soap.  

Glad your hubby is doing better.  It is a journey, isn't it.


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## Karen

jwfoise said:


> Well, there's your problem right there, he shouldn't be eating soap.
> 
> Glad your hubby is doing better.  It is a journey, isn't it.



thank you for catching my TYPO that I had ... !!! :ghug:


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## Supporter2013

Hi everyone,
I'm joining to figure out how to support my husband with proper expectations. He was diagnosed with crohns 6 years ago.  He has never held a regular job in our 10.5 yrs of marriage. I've provided for us and our 3 kids for the entire time. He is going through a flare up right now that seems to have been going on for a year. He pretty much lays in bed if he is not dealing with the crohns-- in the bathroom. He  has never been one to take initiative in helping around the house, but Is this normal for folks with crohns?

I don't want to ask him to help with the kids or the house if it is normal for someone with a flare up to just do nothing for most of the day. 

Should I expect him to do some things? This has been going on for @ least 6 months and I'm thinking of putting the kids in an aftercare program bc he stays in bed much of the time.


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## jwfoise

Hi Supporter2013.  

I don't have an easy answer - everyones reaction to Crohn's is different.  Some people really have a huge loss of energy, some people find it mentally draining, others lead pretty normal lives.  Maybe this is something you both should discuss with his doctor.  Maybe there are some treatments that would help him (and you).  Good luck.


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## SofaKingConfused

I can't take it anymore.  Dose someone with crohns lose all desire for sex?  When me and my wife reunited 3 years ago she didn't have crohns and we had sex 3 times a day everyday for a year and a half.  We went threw a lot of s--t financially and then she got sick with crohns.  her sex drive went down a lot. At this point we didn't know it was crohns yet but then a while later she got admitted into the emergency room and got diagnosed.  She had 1' of lower intestine removed then and came home, She's very sick and on a lot of meds.  We been going threw a lot lately in every way too so I don't know if its the crowns or just our relationship, but now we went from having sex 3 times a day, to 3 times a week, to 3 times a month, to 1 time a month. Sometimes not even that.  Is this normal?  She had her resection in may and now its just about january.


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## SofaKingConfused

Plus she's really agrivated with me.  Its hard to talk to her about things without it turning into an argument.  She says its because of the way I speak to her but I don't think it is.   I think she's just done with me.  I think she thought I was something else and now that she got to know me, she don't want me anymore. Anyhow , thats the way I feel.   I was just wondering how much sex crohns sufferers have.  Once a month?  twice?  Once a week?   I hope Im not being too personal but I really need to know.   Its not for the sex, but for what the sex means.


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## SofaKingConfused

Oh yea, Im her caretaker too.   I care for her every day.   Cooking, shopping, Laundry, everything.   I love her undyingly and truly.   I want her to have desire for me, but I don't feel it.   Somebody help me.


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## Kathy rawr

Hi!

I'm new to this forum  and happy to make my first post here. My boyfriend and I met in highschool when I was in grade ten and he was in grade 11 and we dated for a year. Back then he wasn't diagnosed with Crohn's disease but we were both aware he had stomach pains. When he first told me about his pains I immdeniently encouraged him to go see doctors and he told me it was nothing and he had been to the doctors/hospital many times
And told him it wasn't anything serious. Things only got worse with his stomach- some days were good and some days I would be with him and I couldn't even touch him because he was in pain and we had no idea why. Eventually he did listen to me and went to see specialists to see what was wrong but kept being misdiagnosed. Although I loved him dearly our relationship was very stressful, not being able to go out to places to eat because he was always changing his diet to make his stomach feel better, him feeling sick a lot of the time when we were together and not being able to put much effort into us.. We consantly fought and I felt neglected and unnappreciated by him all the time as I was constantly trying to be there for him through everything he was going through but when I needed support he had no energy to give. Our relationship ended a little after we had our 1 year anniversary.

The months without him were hard and depressing and I reached out to him many times to try to at least be friends but each time ended regretably. 8 months of trying to move on passed and eventually we got back into contact with each other and decided to try to be friends. When I met up with him we caught up and told each other everything and how we missed each other...and I also found out he had been diagnosed with Crohn's disease. He told me after we had broken up his stomach felt fine for a few weeks but after that he was constantly going to the hospital and being sent home, the doctors continued to tell him it was nothing until he was at his worst state did they diagnose him with crohns. He told me he was surprised I still wanted anything to do with him after how he treated me before and I told him it didn't matter now. After hanging out a few times he confessed he still had feelings for me and wished he could take everything he did wrong back and I told him I forgave him and even though he had Crohn's disease it didn't matter
To me because I had loved him before he was diagnosed and having something like that doesn't change how I feel. We got back togegher and our relationship is completely different. I'm still trying to be as supportive as I can but sometimes it's hard. I'm in grade 12 now and I know I have a long and hard road ahead supporting the person I love with crohns. But I love him and I can only hope he'll find something that works for him to make him feel better <3


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## Mike58

SofaKingConfused,
I have been thinking of your post for the past couple of days and finally decided to answer your question.
Your wife has a life time disease now.  She has and will experience pain, nausea, moodiness, sleeplessness, more pain, and is probably not concerned at this time about how many times you both have relations.  The medications that she is on or will be on can make a grown man cry.  We are fighting an incurable disease that is relentless in hurting us.
Crohn's is a disease that makes you feel alone, isolated from family and friends, and at a loss with the medical community.  We ask for support and understanding from our spouses in hopes that someday we will go into a remission and start leading a semi-normal life.
We all appreciate the household and monetary support that you are giving your wife and now hope that you can extend that support to her mental health.  A kind word.  A small gift.  Holding her hand.  Telling her you love her.  Try your best.


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## cynrose

i.


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## SofaKingConfused

Mike58 said:


> SofaKingConfused,
> I have been thinking of your post for the past couple of days and finally decided to answer your question.
> Your wife has a life time disease now.  She has and will experience pain, nausea, moodiness, sleeplessness, more pain, and is probably not concerned at this time about how many times you both have relations.  The medications that she is on or will be on can make a grown man cry.  We are fighting an incurable disease that is relentless in hurting us.
> Crohn's is a disease that makes you feel alone, isolated from family and friends, and at a loss with the medical community.  We ask for support and understanding from our spouses in hopes that someday we will go into a remission and start leading a semi-normal life.
> We all appreciate the household and monetary support that you are giving your wife and now hope that you can extend that support to her mental health.  A kind word.  A small gift.  Holding her hand.  Telling her you love her.  Try your best.


Thanks for the reply Mike!  Im aware of everything you said.  And I barley leave the room without telling her I love her.   I love holding her hand and I do so as often as I can.  I can't go out to the store without getting her favorite candies for her.  And my words are as kind as kind can be. Im sorry if I was being too personal but I was just looking for support.   I give her all the support I can and as a family member of a crohns sufferer I came HERE for some.  Sorry if I seem too forward but stats are good aren't they?  Im only looking for answers and support.


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## pink&green

Hello everyone, quick intro  my hubby has had Crohn's for 24 years now as you know it's a every day battle. Thanks for creating this group.


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## SofaKingConfused

Is it normal for her to be incoherent?  I left the house with her screaming and came back to her on the bedroom floor.  I just 911ed her day before yesterday.  They sent her home normal.   I got some friends to come over to look at her.   One of them has a spouse with crohns.  We got her to bed an made her eggs.   Seems fine now.     I just got done moving all our s--t into our new place by myself.  I got disabilities too and it takes me a great deal of effort.  I woke this morning to her yelling bout we got no sugar an her slippers are gone.   She accused the person we were stain with of given us wet blankets and kikkin us out her house.   We been on their liven room for over a month an they found us this new place an vouched for us here.   Now we can have our own room an wind up owning the place in a small amount of time.     I feel like nothing I do is good enough.     She even resented our friends for getting this place for us so we can move off their liven room floor.        Oh well.   Now she's sleeping.   Now I can put all the s--t away that I moved in.  .


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## andrealeigh71

New to this group....just looking for people who can identify what I'm going through


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## ICU

SofaKingConfused-
My husband is now experiencing what others call Brain Fog- short term memory loss, searching for words, omitting sentences in a paragraph, confusion with tasks that should be 2nd nature, etc. His dr. said crohns and the brain are not connected, it is most likely related to electrolytes and nutrition...I disagree.
And he does get grumpy when he hurts so badly. But feels badly for being that way once he feels better.
It's a tough road for everyone. We try to cherish the good days. I try to be patient during the tough times. I'm sorry you both are having to deal with this also.


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## andrealeigh71

Well I'm going to sound like an awful person, but I am just truly tired of being married to someone with Crohn's!! My husband and I have been married for about 5 years (together 7 years) and I just feel so alone sometimes. I know I'm not the one physically dealing with this awful disease but it really affects our marriage in so many ways...as you all know.... Does anyone else just feel like giving up at times? I love my husband with all my heart and I do all I can for him but sometimes I feel at my wits end. Does anyone else feel this way?


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## Kathy rawr

Andrea,

I feel the same way with my boyfriend sometimes. It's really hard and as much as I wish it didn't it affects our relationship in a bad way. When he feels sick we have to cancel plans... Even times like Christmas dinner with the family or trips we looked forward to. Sometimes I get so tired of it when he gets mad at me for trying to be supportive because I "don't understand" or when I try to be positive about the entire thing..
At the same time...  he realizes the way he is and asks we why I'm still with him and wants me to break up with him and be with someone normal. Being with someone who has crohns isn't easy at all but the moments when they're feeling good they really want to show you they appreciate everything and everyone who stayed by them


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## DrDarling

Hi everyone, my name is Katie and although I've been reading these forums and getting information for quite a while, this is my first post. My partner has suffered from undiagnosed stomach problems his entire life, and has recently been given the official diagnosis of Crohn's. He's been in a bad flareup for over 6 months now, and I'm hoping the GI specialist will prescribe something when we go next week. We've been given a lot of hope reading about some of the medications that members have been taken. 

I have to say, our lives have drastically changed with this flare. We've only been together for a year, and until this summer, I didn't know what this disease was, or how it could effect him. The changes are dramatic, as I'm sure you all know. It's been very hard for me to adjust, but it's getting better. The cancelled plans and really the lack of being able to plan for much of anything are very frustrating, as are the days where he sleeps 24/7, and the incredible drop in energy and libido. 

The hardest thing now, for me, is that friends and family don't really seem to "get it". I end up attending parties and events alone, and usually have to explain last minute that today ended up being a bad day for him, and he couldn't come. I think it's hard to understand unless someone close to you has the disease.

Some days I'll get frustrated or sad, and I'll wish that I had a "normal" partner, one that's healthy... but really, what's that guarantee? I've had plenty of healthy boyfriends, and even a fiancee, but none of them have loved me, accepted me, and supported me like my partner now does.. not even close. One good day with him is worth 100 healthy days with one of those jerks from the past.. reminding myself of that helps me put this disease in perspective, especially when I'm feeling lonely or sorry for both of us.  

Anyways, I'm happy to be a part of this group, and look forward to conversing with you all!


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## SofaKingConfused

Thanks for alla this.  Specially ICU.   I been having a really hard time.  Thing have gotten a bit better tho.  We moved to a roomier place.  Other stuff too.  She's gotten better too.  Crohns wize.  I thank God for her.  And I kiss the ground she walks on.  She lives with this everyday.  She's going threw all this under soma the worst circumstances possible.  The stress is incredible(but things are changing for the better)and I know stress is bad for her.       All I can say to anyone going threw soma the bad things associated with crowns is that we gotta get threw the bad times so that we can appreciate the good times, because the good times are real good.   Its all soooo worth it guys.  Thanks for the support ICU.  And hang in there Andrea.    Anyone going threw soma this s--t, Hang in there.


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## Vivian

Hello everyone ~ I am Chinese, my husband is Crohn's. Crohn's disease is not uncommon in China, we do not know the cause of illness.  I am glad to find this organization. 
Since 2012 confirmed so far, has not alleviated inflammation, because Medicare and commercial insurance does not take care of Crohn's disease, this year we spent a lot of renminbi, let me worry about the future life, and this disease so that my husband's anxiety and irritability, let prednisone his appetite is very strong. Weight did not increase very worried. Also worried about the future. 
:ghug:


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## JasonatFollowMeg

My wife has Crohn's.  It changed everything for us.  Fortunately, her case is relatively mild and she manages well. Using diet and exercise she is able to live medication free most of the time.

However, we don't have kids.  We haven't prevented for years and can't say for sure, but we figure her Crohn's is preventing her from getting pregnant.  We are both in our early 30s and many people tell us that we should have kids.  They don't understand and assume that we are trying not have kids.  Honestly, I get really upset when they directly or subtly suggest we have kids.

I think about food totally differently now.  Even when I'm traveling without my wife I view all foods through the filter of: "is this safe for Megan?"  Anytime we are invited to someone's house, I make sure to let the hostess know my wife's dietary needs.  We are in this together, in sickness and in, health.  I sure love my bride!!

Also, I'm really proud of her, because of how hard she works.  She has slowly gotten over her fear of talking about her disease and she now has a blog.  On her site, FollowMeg.com, she talks about health and wellness, and has many healthy recipes.  I know Crohn's is different for everyone, yet I'm still really impressed how she copes.


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## jwfoise

Lovely photo Jason


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## lavendel-dk

Hello. It is not my spouse (yet ) but my very lovely boyfriend / best friend. We have been a couple for about 4 months, but we have known each other for a year. When we met he had already been diagnosed for years and been through a lot of things. 

I am here at this forum because I wish to know somebody else, both somebody with the diagnose and somebody who is close to somebody with Crohns


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## ICU

After a little over a year, we were finally able to get in to see a specialist @ UCSF. A few tests are to be done, and a change in medication as well. My hubby is finally hopeful about managing this better!:dusty:as am I.

On another note~
I am wondering why, oh why, does anyone and everyone feel like they can share so freely about their poop, and their families poop, and there second cousin twice removed's poop? Yes he has Crohn's. Yes I deal with it every day too. Yes we need to be aware of those type of issues. But one can get tired of the topic! And during a meal?! And graphic details, as if its live?! Spare me!! 
I have tried subtle ways and direct ways of requesting a topic change to no avail. Any suggestions?...:ybatty:


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## dave13

ICU said:


> After a little over a year, we were finally able to get in to see a specialist @ UCSF. A few tests are to be done, and a change in medication as well. My hubby is finally hopeful about managing this better!:dusty:as am I.
> 
> On another note~
> I am wondering why, oh why, does anyone and everyone feel like they can share so freely about their poop, and their families poop, and there second cousin twice removed's poop? Yes he has Crohn's. Yes I deal with it every day too. Yes we need to be aware of those type of issues. But one can get tired of the topic! And during a meal?! And graphic details, as if its live?! Spare me!!
> I have tried subtle ways and direct ways of requesting a topic change to no avail. Any suggestions?...:ybatty:


wow,my wife and I were just talking about this very thing.I have crohn's and really try to listen to myself and not make her eyes glaze over with IBD talk.She is awesome and has been very supportive during surgeries and everything that goes with it.I was saying to my wife 'you gotta love a web site where you can talk so freely about bowel movements and gas'...not at the dinner table of course. oo:


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## ICU

Yes, THIS is the place to talk openly. And to get some great help!! I am thankful for the wealth of true information available here 
Now I just need to figure out a simple brief answer for the diarrhea of the mouth diners...


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## Countrylass

Hello from London
My husband has Crohn's discease diagnosed November 2012 by colonoscopy biopsy,started on steriods that same day.
he was mis diagnosed as having irritable bowel by gp few years before that..
I to have ill health lupus,mctd,myositis etc.
so diffficult now both have health challenges.
he is on humira after bad allergic reaction to azathioprine he ended up in ER for peunmoni and back,body spasms was also reaction to drug but steriods masked it.
They then gave him azathioprine again not knowing he had reaction this time was clearer stopped imediatley had call dr out hours.
got him in for urgent review by which time 1st mir done.
his is severe small and large bowel affected thanks to humiran no further major flares.

looking for support to support him he able work full time but struggling alot arthritis of feet had recent surgery to remove damage from that,but can not have anti inflammtories due to his crohns.

hes also on b12 jabs by nurse at gp clinic,nice meet you all we trying for child.

was scariest time last christmas seeing him so ill when caslled ambulance.
he then had another allergic reaction to a anti inflammtory they gave him for back in er.

threw all this he has managed keep job got promotion.
countrylass


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## Harin

Hi Karen how are you today, am Harin, Today is my first day on this forum and it's really been a blessing.  I have read so much and feel like this is such a great treasure I found.  I hope one can find the support here too!  Just know you're not alone

I was diagnosed with crohn since 1996 when I was just 26, since then I have been and seen so many ups n down ,now am 44 Happily married ,I had One operation and now am on Azathioprine 2 pills daily since 12 years .


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## Karen

I would like to take some time to WELCOME each and everyone who is new since I was last on here. WOW it brings tears 2 my eyes to read everyone's story & 2 see how this awful disease has affected so many lives. I want each & everyone to know that you are prayed for each & every day by me. I am guessing that it has been hard for all of you to see you LOVED ONE go thru this. I know that ah when my husband found out it was so very hard for both my daughter and I as I had to sleep in the guest room most nights because he was so sick all the time. But ... he has made a lot of changes over the years and has learned what thee triggers are & so what to eat & what not to eat. 

I'm praying that all of you have done the same thing. One note that you might to remember is to KEEP A FOOD JOURNAL and that will help remind you of what you ate & what your limits are ... 

So feel free to share your story & if you have updates please do share them as well.  So, I will do my best to be back soon to share what is new at this end with us ... One plus my husband & I just celebrated our 36 th Wedding - Anniversary this week on Tuesday. 

So with that I send over lots of LOVE & PRAYERS to everyone here so take care and do come in and share !!  Here is a picture that we took a OLD PEOPLE SELFIE MOMENT as my daughter calls it. We took it while we were on our mini weekend vacation.  So, have a good night and see you all soon again !!


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## nerdmom90

Hi all.

My name is Beth. My husband was diagnosed with Crohn's in April of 1990.1 week before our wedding. The first several years were rough, with him taking prednisone (and a huge list of other drugs) on a daily basis for years. And then in 1998, while he was in New Orleans on business, he had to have emergency surgery. He'd been feeling progressively weaker and light headed. Then one day he stood up and nearly passed out. He decided to go to the ER. (the dork drove himself! I haven't let him live that one down) 

We had 4 young children at the time, the youngest being 9 months old. Thank God for his parents. They were able to care for the kids so I could fly out and be with him. I was terrified. 

 It took a few days for them to figure out where the bleeding was coming from and by the time he'd had surgery and it was all said and done, he'd needed 12 units of blood.  Surgery was 14 inches of the small intestines, close to the ileocecal valve. 

 He spent the next 15 years pretty much in remission. (can't tell you how happy he was to be off the nasty that is prednisone!) Needing outpatient surgeries for fistula issues, but no more abdominal surgeries. We've felt very blessed, since the surgeon assured him that he would most likely need another big surgery within 10 years. 

Then a right before Thanksgiving he started having more/unusual pain near his Crohn's site. After a couple of weeks we discovered that he'd developed an abscess. Since then, his Crohn's has flared back up and we have been working with his doctors to get him back into remission. (currently, at 40mg of prednisone a day, along with Imuran. He's had a couple of false starts with the Imuran but after 2 months, it's looking like it is not really helping him.

So at this point, after much discussion, it looks like he will be giving Remicade a shot. 

We have been so blessed the past 24 years. He has always lived life to it's fullest and is one of the most optimistic people I know.  He says he has to do things he is able to do NOW (meaning ever since he's been in remission) because he knows that one day he may not be able to.  But this latest bout has him down. He's getting frustrated.  He is hoping for a silver bullet and he's read some positive things about the biologicals. 

I am a bit nervous about potential side effects. But my job is to research the heck out of this and stay as knowledgeable as possible about what is going on with his body. And, to play hardball with him when he gets it in his head to push his limits too early. 

So grateful to have found this group.


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## Dml15

I do all the shopping and my husband hates going to the store with me so I have to get food he is able to eat. Sometimes I feel guilty getting things for my son and I if know my husband can't eat them ... How would you guys cope with shopping?


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## dulce75

I'll join! My husband was diagnosed in 1997 at the age of 16. He had a complete colectomy four years ago (I did not know him then). We met about 8 months after his colectomy, and he shared with me his struggles with Crohn's and his ileostomy right away. 

He has been in "remission" since the surgery. However, he just had a resection due to an obstruction in his upper intestine last week, and we are trying to work through it together.


----------



## MegBrockie

My Husband was diagnosed before we met.  He has now gone over 4 years without a Flare Up.  We got married 4 years ago this week.  This is the first time he has been this bad since we have been married.  

He does not like to discuss his Crohn's in any fashion.  He is very quiet about everything.  His mom has told me he never notices the symptoms until it is very bad.  

The main thing I have noticed is a huge personality change along with the "normal" Crohn's symptoms.  He is almost like a different person this last month.  He has an appointment scheduled for next week, but I am wondering if I should bring him to the hospital sooner.  We are not established with a doctor in the area, so it would just be an introductory appointment.  I think he needs treatment sooner rather then later.

Has anyone else had a problem of personality changes?

Thank you so much and I am very excited to have found this Group.


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## sandboy

Well hello Sandy  from another Sandy. I have been married to my husband for 51 years and he had Crohn's disease when we married. He had a small bowel resection for it at age 22(regional enteritis). It has been a long emotional marriage but we still love each other. I posted more on "My Story" and they sent me to this forum. Thank you for starting it!  As I said, I would marry him again but sometimes the well does run dry, especially when he is depressed. As you know, it affects your lives, have to be careful when you eat, where you eat, what you eat and so on and on it goes. True friends ask  what he can eat and prepare it but some just think it is too much hassle. To make things worse, I am 72 and extremely healthy, play tennis, swim, walk and play cards with  friends. Travel is just not even worth it anymore as he usually gets sick when we eat out. Things can always be worse but sometimes it just helps to vent. My dear friend was diagnosed with ALS so we thing we are blessed still.


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## Vampgirl

Hi,
 My name is Karen, im joining to learn more about crohns and ways i can be supportive to my boyfriend, we have been together now for a year and a half, he has had crohns now for about 5 or 6 years, he usually doesn't like to talk about it, which is understandable, but he is opening up some, i want to learn more and find out some ways to help him, even if its just by supporting him, i have heard juicing is something that could be helpful, anyone with some advice i would greatly appreciate, i love my boyfriend deeply and it breaks my heart to see him in pain.


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## stephensgirl

It's been awhile since I've been on and I am so happy to see all the new joiners. The only real time my man and I have a problem is when he gets a flare. He refuses to keep a food journal but since he was diagnosed 21 years ago he has a pretty good idea of what normally upsets him. He did go through and crabby spell a few months ago as he finally got disability after being denied twice before however they want to review in a year as according to them he could be cured. He has had the disorder for 21 years and had an xlarge resection not long after being diagnosed. Not sure why they think he will all of a sudden be cured now. They are a bunch of nutbars of you ask me. Anyway enough of my moaning I am happy for so many supporters out there helping their loved ones.


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## Vampgirl

MegBrockie said:


> My Husband was diagnosed before we met.  He has now gone over 4 years without a Flare Up.  We got married 4 years ago this week.  This is the first time he has been this bad since we have been married.
> 
> He does not like to discuss his Crohn's in any fashion.  He is very quiet about everything.  His mom has told me he never notices the symptoms until it is very bad.
> 
> The main thing I have noticed is a huge personality change along with the "normal" Crohn's symptoms.  He is almost like a different person this last month.  He has an appointment scheduled for next week, but I am wondering if I should bring him to the hospital sooner.  We are not established with a doctor in the area, so it would just be an introductory appointment.  I think he needs treatment sooner rather then later.
> 
> Has anyone else had a problem of personality changes?
> 
> Thank you so much and I am very excited to have found this Group.











My boyfriends personality will change, never into somthing mean or annoying, but he will get really quiet and trys to clam he is just tired from work, but now that we live together im able to tell the difference of when he really is just tired or when he gets a flare up. He trys so hard to not show he is in pain, he is a very quiet person about this as well, he never likes telling anyone, in fact he didnt tell me about it at first I guess around 6 months his teenage daughters told me and he had gotten a bad flare up one day and was completely sick in bed all day long so he finally told me.


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## stephensgirl

My boyfriend has a tendency to get very grumpy and moody during flares. The worse the flare or symptoms the grumpier and moodier he becomes. He also doesn't really like to talk about it much but now that we've been together for years he is more prone to let me know what kind of symptoms he's having not to mention I know from his mood if he is suffering.


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## Janki Wong

Hi everybody, this is my first time posting here.  I think I really need this right now.

My husband is having a bad flare-up right now and together with all kinds of joint pain.  He wanted a divorce yesterday cause he said I am making him worse.  He is currently going through all kinds of family dramas and saying I am not being supportive at all.  I will have to admit, I am not.  We are newly married and I have just moved here to the states from Hong Kong in April.  I am personally going through crisis as well.  All I can do is at least keeping myself saint.  But with the pain and stress my husband is going through, my husband and I can't even talk casually anymore cause that just ended up fights.

The last comment he had on our relationship was, if putting killing himself and divorcing on a scale, I don't think it's that much an hard choice.  Because of his health conditions, we have been breaking up and getting back together quite a few times.  This time is different though, instead of breaking up, we are getting a divorce.  We are still living together right now and I am hoping to be as positive as possible.  

I absolutely admire everyone here who has been so supportive and selfless for their love ones.  I have been reading this forum for a short while, but during the crisis, I couldn't put my words and feelings together.  After the decision of getting a divorce, I am guilty to say so, but seems like something inside myself as clear-up a bit.  We are still living together since this decision has just been made yesterday.  I am hoping to post my thoughts so that I can get going.  I am hoping the divorce is just a temporary anger he is having.  But right now, I am still trying my best to support him in a way he allow.


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## Morton89

Hey y'all, 
Thanks for letting me join but i have something i need help with.
So my husband has no idea i'm on here, but I'm at a loss. He has had crohns disease since he was 12 and now he is 23. Two weeks ago we had to take him to the hospital because of a bad flare-up and they did a catscan. They told him his appendix was flared in the middle. Once in the hospital they gave him anti-biotics and loritab and another medicine but im not sure what it was. He was fine for a couple of days but now he is back in pain and bleeding again....and he said the bleeding is coming and going and i know better than that. They want me to get him into a specialist and get a scan of his stomach again and i would like to but it will have to be monday before i can do that. but is there anything i can do to maybe help him out? I'm giving him marshmallow root in his drinks two to three times a day and that seems to be working a little. Please help:/ Is there anything i can actually do for him? I hate seeing him in pain.
Thanks,
Stacie


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## VilliVagabond

Cook for him. Try starting the SCD - propose it as a thoughtful solution you saw and that you'll support him in the journey. It can't hurt to try it.

Personal testimony - I was 158 lbs and near surgery in early February. I was on 20 mg of prednisone, and the doctor wanted to start me on Humira. I said no. I began the SCD diet - since starting, 1, solid bowel movement a day. Only a little bit of pain here and there (which I was told would be normal for awhile) but I can run, exercise, lift, function, work, etc.

Worth a shot! if it doesn't work, at least you tried. www.breakingtheviciouscycle.com


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## MrsJMB

I'm new here and just seen the post above.  I've just clicked onto Amazon to buy the SCD book.  I'm willing to try anything to get my husband into remission or at least back to some level of normality!  Thanks for creating this group!


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## MayLillies

Hello everyone. I have been reading through the thread and have found all of your thoughts very helpful. My husband and I are newly weds of about 3 weeks although we have a 2 year old. I have often found his condition daunting and overwhelming and have failed to support him in the past. I am trying to be a supportive wife and have learned as much as I can about the disease in order to help him but yet I can't help but feel like I am making it worse. I am glad to see that I am not alone in my frustrations at not being able to help. We just moved into a house with my family and it has been particularly stressful for him. I am doing all that I can to alleviate some of his stress but seem to be making it worse and he is becoming increasingly frustrated with me. He is a very private person and I have a hard time deciphering when he wants me to pry and when he wants me to shut up. I would love some advice on how to help console the grouchy and private man who is my new husband.


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## SandyUte

Hi MayLillies, welcome to this forum. I hope it helps and you find good support here. I know I have over the past few years. I think you hit a nerve with me at least, and I'll bet you have with a lot of others. 
First of all, congratulations on your recent nuptials, but I'm sorry your starting it with this stinking disease (I'm assuming crohns? Forgive me if I'm wrong). It is hard enough for those of us who had a few good health years and time to get to know each other on better terms. Knowing when, and when not to, say something, and what, is one of the hardest things to know in my experience. I think it all boils down to letting our loved ones know we are there for them, in the best way we can, but it still has to be two sided. Sometimes when they are not feeling their best it is hard for them to give their best to us, but we have needs too! Once in a while we have to remind them, calmly, that although they don't feel well it is not an excuse to take their frustrations out on us. With my situation, we both (my husband and I) have major health issues (mine not an IBD, tho), and I have to remind myself that he is the one I love and not to take things out on him when I'm not well.  Each person involved, whether a caregiver or the one with the illness has a heavy burden and is affected.  Maybe you can gently try to persuade him to join this forum also. I know many with this horrible disease (crohns, colitis, or whatever IBD), feel very alone, and with the general population it is not something normally talked about. It is doubly hard for private people given the nature of the disease. I think if given the chance, he might find it helpful to talk to those in similar situations. I'll say more later, but I'm exhausted right now. I just want you to know you're not alone either. God bless you on your start with your young family.


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## MayLillies

Thank You SandyUte for your kind words and advice. Reading these posts have offered me better insight into how and when to say something. I can see that it is going to be a struggle to persuade him to find ways to help himself as he has given up hope in the medical community. It's frustrating, but I can see that this disease is just the ultimate game of patience. Best wishes for you and your family.


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## MelanieC

Hi folks!
My name is Melanie and my partner, Rick, has Crohn's. It has been a big challenge over the time we've known each other, with lots of ups and downs. He is the one who is suffering from acute physical flare ups, but I am suffering along with him, emotionally. I wish there were more that I could do for him, but I feel so helpless. He has tried many different doctors, medications, treatments, supplements, dietary restrictions, surgeries, mindfulness meditation, etc. Some things help a little bit (and we will take every little bit of help we can get!!!), however, his health continues to deteriorate. We are getting desperate for a reprieve! The doctor's seem to be so clueless about this disease and how to treat it. They keep pushing very scary, and dangerous medications. There must be a better way, but we don't even know where to begin. Help!
:sign0144:


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## SandyUte

Welcome to you too, Melanie. A good gastroenterologist is hard to find, and the medicines commonly used to treat crohns are scary. Sometimes it is just a matter of weighing the options, scary meds vs scary disease. That is the simplistic way of putting things, but actually I'm in favor of the least amount of "scary" medicine the better myself. Westernized medicine does tend to push all sorts of chemicals, and you will find as many opinions as their are doctors out their on how to treat crohns, so just take the pieces what works for you/Rick, and realize that nothing is going to be perfect. My husband, Doug, ended up on humira, which is a scary drug, but I'm convinced it is also what saved him (after emergency surgery) from being in agony most of the time. He is pretty normal now. The disease doesn't go away, but in Doug's case, is in a lot better control.
I would encourage Rick, tho, to keep using those pieces of whatever helps, whether it be mindfulness meditation, or whatever. Sometimes it is just getting the right combination. Follow your instincts, and know you have support here.


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## SandyUte

And Maylillies, you will find ways to help support your hubby, tho he may not realize it at the time. Just by being here shows that you are supporting him. Hugzzz:hug:


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## DonnaR

I apologize in advance, but I'm about to compose a short novel.

My husband and I have been married for 12 years. Two days after we got married, he left for basic training with the Air Force. About two weeks into it, he got sick and so they pulled him out of basic for testing. They diagnosed him with Crohn's, so he got a medical discharge and came home.

For a long time, his Crohn's didn't do much to affect us. I guess his symptoms were controlled, or we just didn't know what the symptoms actually were. Well, in the past few years his Crohn's has gotten drastically worse. In April of 2013 he had a resection and for a while he did better. But he has fistulating Crohn's. All the fistulas are on his perianal area, and for the most part they've always tunneled outward. However, now they're tunneling up toward his urinal tract. The fistulas drain A LOT and have a bad odor from the discharge, and of course he's very self conscious about it. I can't imagine having that. Sometimes the back of his shorts will be soaked, and when he stands up from his chair, the chair is wet with this leakage. It's hard on him.

He also takes Remiciade. Thankfully, since he was diagnosed in the military, he has all his medications provided by the VA. We are extremely thankful for that. But the closest  VA is an hour and a half from here. When you get two or three of those appointments a week, it's a lot of car time. He's getting tired of the driving and very discouraged. Especially when the Remiciade makes him feel sick and he has to drive home. I can't go with him, I have to stay home for work and to get the kids after school. We don't have anybody here to help us with them, so I can't go to all of his appointments with him, though I do what I can.

On top of all this, he has depression. I think it's due to the Crohn's.

Just Thursday we had a surgery consult, and it looks like the next course of action is an ileostomy. The biologics aren't doing anything to help his fistulas and he's sick of dealing with them. He feels bad a lot too, and the fatigue is so, so hard. He'll come home from work sometimes, go to sleep in his chair, and get up to go to bed. 

The ileostomy has brought up a lot of emotional issues for him, namely him thinking he can't do his job anymore (which I do agree with him about) and feeling like a failure because he can't support the family like he feels he should be able to. I've worked part time, and so I'm looking for a full time job. He needs this surgery, but can't have it unless I'm working full time, so there's the added stress of that. And then the kids, he's worried he won't be the dad they're used to after he has this surgery. He's afraid how it'll change his relationship with them. They're young, eight and seven, and our seven year old is especially worried about his dad when he's sick. So my husband has that to worry about, too.

All of this has made him very moody. He goes back and forth, from what I've always known him as to this crying, moody man who I can't help. I love him, and I want to support and help him, but it's getting harder and harder. I just don't know what to do anymore. All I can do is be here for him and assure this isn't going to make me leave. We have a strong marriage and relationship, but I know this has to make him worry sometimes. After all, we are going through a lot.

The past few weeks I've been really upset and moody myself, it seems like I can't do anything right or I can't do enough. With the way he's acted lately, it's made me feel even worse. I'm not sure how to deal with him or what to say, sometimes I don't even want to try. It's hard to deal with his depression. I'm almost to the point of walking away and not trying anymore when he's in those moods. I'm just not sure what to do.

I think I found a full time job and I'm really excited. I was relieved by it, but he doesn't seem to care. I thought, hey, I've found a solution to one of our biggest problems. (Finances, those are always stressful.) But then he's almost so nonchalant about it, I'm not sure what to make of it. It's really discouraged me.

I've been in tears the past week, unsure what to do, and I have no close friends so I don't have anywhere to go vent. My husband is on a support forum so I thought maybe there's a Crohn's spouse forum out there somewhere. So glad I found it. I see a lot of people going through many of the same things. I don't want to say it's a relief to see it, I hate it that anybody is going through it, but I will say it's nice to have found the people who unfortunately are.

I respect everybody for sticking it through with their spouses and doing what they can. I know first hand, it takes a lot of strength to deal with all of this. I feel my strength failing, though. I'm having a hard time keeping myself together. I'm a Christian and I can't imagine doing this without my faith. But sometimes, and I feel terrible for saying it but feel like it's the truth, I need somebody to say something positive to me. God tends to be quiet. I know He's there, but I'm not getting any affirmation right now.

Whew. Well, I guess I did drop a short novel on you. Sorry for the rambling. I've been so upset the past week, for the past three days all I've done is hold back tears. I see all the wonderful things in my life and I see all the blessings I have, but the bad things are taking over. They're on the forefront of my mind now more than anything else. Even if nobody reads all of this, it feels better just to get it out.

Thanks so much for letting me go on like this. I needed it. I hope all you strong people have a moment for yourselves today, to renew your strength and relax.


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## SandyUte

Dear, sweet Donna! I hope you don't mind if I call you that, but I can tell you are sweet and kind. And it's ok to vent away, I have done my share of that lately, even here on this forum in other threads. It's the middle of the night for me right now, and I'm tired, but I want you to know you are not alone. I don't have the energy to say what I really want to right now, because like all of us, we are going thru our own things (and it's the middle of the night). Also like you, I wouldn't wish crohn's or even being a crohns spouse on anyone, but it is good to know others understand. Your husband's energy sounds a lot like my husband's energy level, he comes home from work, falls asleep in a chair, then often I wake him to go to bed. And having crohn's _ is_ depressing, which also doesn't help with the energy levels. Frankly, what you wrote helped me so I don't feel so alone. Of course, nobody's life is exactly the same (or we wouldn't be here  ), but I was feeling sorry for myself a lot lately when I read your "novel" and realized things could be a lot worse for us right now. I really feel for you and don't know how you are doing it frankly. But then, I'm sure there are things you might consider as "worse" if your lots in life were changed with ours right now too. Suffice it to say, I think there are a lot of us around here with full plates. Very full plates.
Hang in there, talk here all you want, sometimes people get things here (and sometimes they don't, but I find more the other way), but if you are like me, sometimes you just have to get it out. God may seem silent at times, but He is there. It is after your faith is tried that He reveals Himself more.
I hope we can be friends.


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## DonnaR

SandyUte, I can't tell you how much I appreciate your post. It all came to a boiling point with me last night, I cried more than I slept. My husband was out on a guy's night out so it gave me the chance to let myself actually feel the stress I'm  under. I have a hard time admitting to myself that I'm stressed and that I have a lot going on. Sometimes it's difficult for me to think about just how much I have going on. I keep thinking my situation isn't that bad, and that I'm being a big baby. Then things like last night happen, and I'm a blubbering fool all night long.

But that's okay. I think everybody has to have pity parties. We are going through a lot. Crohn's isn't a common disease, it's hard to understand it, and the world doesn't give a lot of leeway to people with Crohn's. It doesn't fit in with the 'socially acceptable' diseases. As terrible as that sounds, I know there are people who do understand what I mean by that. I think forums like this are fantastic. It really helps us understand that we aren't alone in our struggles.

You saying that my post made you feel better really put a highlight on my day. I love to help people, and though I rambled with a lot of self pity, I do hope it was at least a little inspiring or helpful for you in some way. I don't want to say anybody's struggles are worse or harder than another person's, we all face our own struggles in our own way. I think we do all have the same common struggle in that we're trying to be supportive, but that's not easy to do. Sometimes we don't know how. And if you're like me (I have a feeling you are), you leave yourself out of the top list of things to concentrate on. So I'm going to make it a point this week to do something just for me.

What a great thing it is to have somebody say 'I know how you feel.' I'm usually not one for that sort of thing, after all, nobody knows how each other feels, but in this case it's so comforting to know somebody really does know. This is a unique thing we're going through, and I thank God He led me to this forum. I thought He was being quiet. He was just coming through in the sound of my keyboard. He talks, we may not always understand the method by which He does so, but He talks.

I pray for you in your struggles and for your husband. Thanks for your reply, you have no idea how  much I appreciate it. I also hope we can be friends. It's so nice to breathe a sigh of relief when I throw out all these Crohn's related words and the first response isn't, "what does that word mean?" Sometimes not having to explain the particulars helps us explain the other parts of what we're going through.

I might ought to mention, you can expect novels pretty frequently from me. I'm an independent author, and I love to write. So that just tends to be one of the things I can't keep myself from.


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## SandyUte

Donna, I just wrote back again (tried to anyway), but lost my internet connection, lost my post. I will message you tomorrow. Hang in there!


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## ElizaKate

Hi Everyone - 

May I please join your support group?

My husband was diagnosed with Crohn's disease after our first child was born 5 years ago, although he's had intensifying symptoms since we met in 2001. Up until this past summer, Crohn's was something that made its presence known a few days a month, but ever since July, he's been in a constant flare. There are no more good days, or weeks. There are good hours. The life that I knew is completely turned upside down. We no longer sleep in the same bedroom. We no longer share meals. We no longer go out and do anything as a family. He goes to work, comes home and spends the night on the couch or in the basement with a heating pad on his belly. I know he feels terrible and I am at an absolute loss how to procceed with this new "normal". I don't know how to help him, or how to help the rest of the family cope.

I am so overwhelmed with everything that is falling on my shoulders while he is unwell. I was already the breadwinner, but now I am doing 90% of the housework/household management and 70% of the childcare. He watches the kids while they play and he fixes them a basic dinner since I am not yet home from work, but I do the rest. I am tired and crabby all the time - at the kids and at my husband. My poor kids are confused as to why thier once fun dad is now stuck on the couch 24/7. They don't know why I am constantly snappy and yelling. And my husband thinks I am mad at him for being sick, which isn't true. I am mad because Crohn's seems to have stolen the parts of my life I loved most. But I am not mad specifically at him. I am scared that this disease will take my children. I am scared that my husband will die because so far all the new mediciations and the new diet have not helped and he continues to waste away and be unwell. And I am scared that I am going to lose my mind as I try to cope with being everything to everyone. 

I am sorry I have selfishly penned a novel!! I am hoping some of the spouses in this group have some tips and ideas on how to manage a household when one parent is frequently out of commission, how to raise compassionate kids who don't feel neglected because they are often taking a backseat as we try to deal with this illness and how to hold on to a little piece of yourself when you have to give the rest away.

Thank you!


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## jwfoise

Hi Elizakate.  Of course you can join... that's what we're here for.  And lot of what we can do is let you vent away.  Its not selfish, its a good thing to get it off your chest.

A couple of thoughts...

Has he seen his doctor about the latest problems?  What have they suggested?  What meds was he on and what is he on now?  Maybe a new med or some dosage changes will help.  What about changes in diet?

As far as kids...  my parents both had some serious health problems when I was a child.  They were of the school of thought of "keeping it from the kids" as a way of trying to protect us, even well into our teen years.  I would say it had the opposite effect - they know daddy is sick, but not knowing anything about it is even worse.  I don't know how old they are, and obviously you have to adjust for their age and maturity, but I think its good to tell them as much as you can.  Maybe they can even help a little more and it will make it feel like they are helping daddy get better.

Just a few thoughts...


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## ElizaKate

Thank you jwfoise for responding! Yes, he's been in continual contact with his GI during this flare. He was started on Pentasa and Entocort, but is being considered for Remicade. He says he feels better than he did, but a lot of the scary stuff is not getting better (low weight, periods of intense pain with vomitting, horrible stomach noises, reduced appetite, etc). Without trying to micromanage or intrude, I've tried to stay informed about what's going on. I've offered to help him change his diet. But otherwise, I feel so powerless. I'm never sure how I can help or if I can help. 

I try not to hide things from the kids. They are 5 and 2. I don't give them the gory details, but I do tell them the truth - that Dad doesn't feel well and he has a sickness that makes him not feel well frequently. I am actually less concerned about them seeing their father constantly ill than I am about them having to witness my perpetual meltdown because I am stretched too thin and I am scared that the man I love is so sickly. I wish I had a more even keel, but the ups and downs of Crohn's scare me.


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## SJ!

Apologies, wrong thread!


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## SandyUte

Hi ElizaKate!  I find there is not a lot you can do for a spouse other than love them even thru the hard times. We can encourage good medical care and good diets, prepare what is good for them, but they will either accept our reject from their own free will anyway. 
My husband, Doug, has his share of issues, like I'm sure all of our spouses have, or we wouldn't be here. I think I just stumbled on a good response for when our spouses think we are mad at them when we are frustrated with the difficulties crohn's, etc brings. One of the common problems IBDers have is flatulence, and (sorry Doug), my husband is no exception. I know he can't help it, but boy-oh-boy, can it stink! Yesterday I could tell he was feeling hurt by another comment from me about the smell, I could practically see the wheels turning above his head mumbling to himself about how it isn't fair, he has to put up with that awful disease and a wife who isn't more understanding about it. I told him "it isn't you I'm mad at. I know you can't help it! It is that awful stinking (literally) disease!" It put us both back on the same page where we really were anyway, and a little more empathy for one another. Just food for thought.


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## ElizaKate

Sandy Ute - thank you for making me smile. I do love the man but loathe the disease. It's sometimes hard to separate the two, though. For the time being, Crohn's has turned us into recluses. The horrific stomach noises as food passes through strictures is one thing. The foul gas is another. Once he gets the flare under control I hope we can resume hiking and walking where air can circulate things. We don't even have a dog we can blame the stench on but I am considering getting one to alleviate awkward social situations. I feel very lonely since none of my friends really gets what I am up against and I've lost all social interaction where my husband is concerned. I go to work and that's about it. Other than that, I am home with the kids.

Another worry is my children. The GI says they each have a 20% chance of IBD. I feel powerless. Had anyone done anything specific with their children to try to alter the chance of developing such a painful disease?


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## SandyUte

Yes, it does get very hard to separate the person from the disease as it becomes such a part of them in some ways. And we do have a dog, a Boston Terrier, and they are known for their odoriferous ways too. Doug sometimes tries to blame the dog, but there is no comparison. Phew! I always know who did it!
I wish I could give you advice on the genetic part of the disease, but I have no clue as we never had children so have not checked into that (tho I do worry because my dad has colitis and I have been diagnosed with IBS, but I think since I'm now in my fifties it's a little late to try to change course of any disease for me.)
I hope things get under control quickly for your sweetheart, as this yucky, horrible, stinky disease can really take a toll emotionally. Let us know how things go, 'kay? (And vent any time you want, I always do and I'm good at it!)


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## jwfoise

ElizaKate said:


> I've offered to help him change his diet.


As your GI recommended the "white diet" (that's what my wife's GI calls it)?  When she is having trouble she goes on very bland food: plain white rice, mashed potatoes, yogurt (if milk/lactose isn't a problem).  The idea is high calorie stuff that is nice and mild.



ElizaKate said:


> I wish I had a more even keel, but the ups and downs of Crohn's scare me.


I feel your pain.

My wife went through a bad stretch a few years ago (she has Crohn's) and it was extremely stressful for me.

I hope Remicade works out for you two.  During the last bad time my wife was put on Humira and it has been like a wonder drug.


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## john/char

Thanks for this group! My husband was diagnosed with crohns  in 2005 and has done well until this June.  He was prescribed Pentasa to use regularly and given prednisone, cipro and flagyl when he had flares.  His sister also had the disease and had horrible problems since she had allergies to most medications.  We felt we were controlling well and then boom there has been unrelenting issues since June.  He has recently been given Entyvio infusions and is scheduled for a third one today.  We have been careful with food and things will be better for a day or 2 and then we are back where we started.  It is helpful to see what others have tried with diet and any info on Entyvio would be appreciated.


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## john/char

ElizaKate said:


> Hi Everyone -
> 
> May I please join your support group?
> 
> My husband was diagnosed with Crohn's disease after our first child was born 5 years ago, although he's had intensifying symptoms since we met in 2001. Up until this past summer, Crohn's was something that made its presence known a few days a month, but ever since July, he's been in a constant flare. There are no more good days, or weeks. There are good hours. The life that I knew is completely turned upside down. We no longer sleep in the same bedroom. We no longer share meals. We no longer go out and do anything as a family. He goes to work, comes home and spends the night on the couch or in the basement with a heating pad on his belly. I know he feels terrible and I am at an absolute loss how to procceed with this new "normal". I don't know how to help him, or how to help the rest of the family cope.
> 
> I am so overwhelmed with everything that is falling on my shoulders while he is unwell. I was already the breadwinner, but now I am doing 90% of the housework/household management and 70% of the childcare. He watches the kids while they play and he fixes them a basic dinner since I am not yet home from work, but I do the rest. I am tired and crabby all the time - at the kids and at my husband. My poor kids are confused as to why thier once fun dad is now stuck on the couch 24/7. They don't know why I am constantly snappy and yelling. And my husband thinks I am mad at him for being sick, which isn't true. I am mad because Crohn's seems to have stolen the parts of my life I loved most. But I am not mad specifically at him. I am scared that this disease will take my children. I am scared that my husband will die because so far all the new mediciations and the new diet have not helped and he continues to waste away and be unwell. And I am scared that I am going to lose my mind as I try to cope with being everything to everyone.
> 
> I am sorry I have selfishly penned a novel!! I am hoping some of the spouses in this group have some tips and ideas on how to manage a household when one parent is frequently out of commission, how to raise compassionate kids who don't feel neglected because they are often taking a backseat as we try to deal with this illness and how to hold on to a little piece of yourself when you have to give the rest away.
> 
> Thank you!


 This disease is hard to deal with when it is just me and my husband.  I can not imagine how hard it must be for a young family.  No wonder, you are scared and sometimes snippy.  I admire you and what you are doing.  Hang in there and try to deal with just today since that is a pretty big issue.


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## Seamus0239

Hi everyone,

I hope you don't mind a very worried Scottish guy joining your group. I have read Elizakate and Donna's stories and they resonate so much with my story which, I fear, is about to get so much worse.

My fiancée is 27 and was diagnosed with Crohns 7 years ago. She's had a lot of ups and downs but the last 2 years have been nothing short of a living hell. She had an abscess in her rectum which is now a fistula, this has leaked constantly for the past 2 years and the doctors have now advised that they need to bypass the rectum.

Unfortunately this means my beautiful girl having to have a stoma. I have been there for her since this began. We've been together for 8 years and I've done everything I can to support her through the worst of all this but I really worry about her wellbeing after they form the stoma. She has been told the operation will be before March 16th 2015, no firm date yet but she is starting to prepare herself mentally for it. She's been in for operations in the past and she is always very depressed after the operation. This will be the biggest of the lot and I'm not sure how much help I'll be. 

She is absolutely terrified of having a stoma. We're due to be married at the end of August 2015 and she is petrified that something goes wrong on our wedding day.

I'd love to hear from Donna if her husband had the operation and how he has come to get to know and be used to this huge change. If anybody else has experience of a spouse being given an ileostomy and how they helped them through it, I'm all ears.

It will never change anything between us. I love her even when she's down and crying. This is going to be an entirely different experience and I need to make sure I'm prepared to help her as best I can.

Thanks all.

Seamus.


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## ElizaKate

Hi Seamus - 

My new mantra is "one day at a time". I know that you and your fiance are probably trying to assess all the impacts that her surgery will have and are perhaps worrying about things that are not yet a reality. It's a hard disease to plan around - both for the patient or for anyone involved with the patient. Also, since stress plays a huge role, we try not to add to the every-day stress of Crohn's by imaging complications and possibilities that aren't yet ours to deal with. It's hard to live in the moment, but Crohn's has taught me the power of such thinking. It has also taught me that some moments sure can suck, but they do eventually pass. Cross the wedding-day bridge when you get there, and perhaps instead focus on the surgery as a possibility of feeling better? 
As spouses and partners, all we can do is be there, listen, perhaps encourage the "glass-half-full" thinking even when we need someone to cheer us up. You've done a wonderful job being there and your future wife is lucky to have your support.


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## Seamus0239

ElizaKate said:


> Hi Seamus -
> 
> My new mantra is "one day at a time". I know that you and your fiance are probably trying to assess all the impacts that her surgery will have and are perhaps worrying about things that are not yet a reality. It's a hard disease to plan around - both for the patient or for anyone involved with the patient. Also, since stress plays a huge role, we try not to add to the every-day stress of Crohn's by imaging complications and possibilities that aren't yet ours to deal with. It's hard to live in the moment, but Crohn's has taught me the power of such thinking. It has also taught me that some moments sure can suck, but they do eventually pass. Cross the wedding-day bridge when you get there, and perhaps instead focus on the surgery as a possibility of feeling better?
> As spouses and partners, all we can do is be there, listen, perhaps encourage the "glass-half-full" thinking even when we need someone to cheer us up. You've done a wonderful job being there and your future wife is lucky to have your support.


Thanks ElizaKate.  

You're probably right. One day at a time is the best mantra. We'll have a good night tonight for New Year and know that this time next year we will be husband and wife.

Happy New Year to you and your family.


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## jwfoise

Seamus0239 said:


> It will never change anything between us. I love her even when she's down and crying. This is going to be an entirely different experience and I need to make sure I'm prepared to help her as best I can.


Hi Seamus.

My wife has been fighting Crohn's since before we met and we are coming up on 25 years of marriage.  About 10 or 12 years ago she had to have her rectum and large intestine removed and get a stoma (and this was also after several past surgeries too).

And yes, it was pretty traumatic, both physically and emotionally.  But we got through it.  And you two will also.

I don't know how things work in the UK and what facilities are available.  A couple of things that helped us: my wife worked with a couple of really good GI nurses who helped her learn who to handle things.  Just getting the mechanics down will make things easier.

We also did some couples' therapy with a therapist who specialized in dealing with chronic diseases (I think she mostly worked with breast cancer survivors).  That was extremely helpful.

I hope you both work your way through this.


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## Seamus0239

jwfoise said:


> Hi Seamus.
> 
> My wife has been fighting Crohn's since before we met and we are coming up on 25 years of marriage.  About 10 or 12 years ago she had to have her rectum and large intestine removed and get a stoma (and this was also after several past surgeries too).
> 
> And yes, it was pretty traumatic, both physically and emotionally.  But we got through it.  And you two will also.
> 
> I don't know how things work in the UK and what facilities are available.  A couple of things that helped us: my wife worked with a couple of really good GI nurses who helped her learn who to handle things.  Just getting the mechanics down will make things easier.
> 
> We also did some couples' therapy with a therapist who specialized in dealing with chronic diseases (I think she mostly worked with breast cancer survivors).  That was extremely helpful.
> 
> I hope you both work your way through this.


Hi jwfoise

I know it's been a while since you sent the above message but I'm looking for some help from someone who has been through what we're going through. I'm really worried about my fiancée. Mentally she has gone downhill rapidly over the past 2 weeks.

The hospital still have not confirmed the date of her operation so it's kind of prolonging the agony. She's also not sleeping and all she can think about is the future. It's as if she thinks everything is spiralling out of her control. I'm trying to convince her that she is still very much in control but she's at her wits end with things.

The constant lack of sleep is making her mind do laps of the same things. She has a great degree and had the job of her dreams before losing it after 3 months due to this flare (which has been going on for 2 years). She now doesn't think she'll ever get another job doing what she wants to do (civil engineering). She worries about money, we're getting married in August and want our own place. She has credit card debts of £3,000 and is paying it off with employment support allowance. I'm saving my hardest to pay for the wedding but I've no idea what we'll be left with afterwards. I'm sure our parents and grandparents may help but it's going to be hard.

She also keeps asking why she has this, saying it's not fair, saying it's taken everything away from her, worrying about how the bag will look, worrying how the bag will smell, worrying that the bag will leak, worrying about the pain she'll be in when she wakes up from the operation, worrying that it won't fix her, worrying that it'll put me off her, worrying that she won't be able to have children. The list is endless. She lies awake all night every night thinking over and over about these things which makes her feel worse. Anytime we're together now she's crying. She's so sad and nothing I do is helping. We're supposed to be getting married in 6 months and she's utterly miserable. I don't know what to do or how to help her.

I just don't know what else to do. This disease is taking everything away from us. I've got the motivation to fight this and not let it beat us but my fiancée is running out of fight. She keeps saying she has nothing left. I'm going to drag her out of this kicking and screaming if need be. It won't beat us.


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## nitty

Hello Seamus,

Have you or your fiancee seen any articles about Bethany Townsend?  She is a young lady with Crohn's who has been in the British press after posting photos of herself on holiday wearing only a bikini, with her stoma bags on show to all on the beach.  She has also been talking about resuming her modelling career.  Look her up on the internet as she could be a great source of positivity for both of you.  

This surgery will affect you both in many different ways and it sounds like your fiancee is very fortunate to have such a caring partner that wants to support her, but you need to remember to be kind to yourself, too.  If you have moments of feeling negative about anything please don't beat yourself up about it - it's normal.  Make sure you both keep communicating with each other and that way you can support one another through anything.

Best wishes to both of you.


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## jwfoise

Seamus0239 said:


> She also keeps asking why she has this, saying it's not fair, saying it's taken everything away from her, worrying about how the bag will look, worrying how the bag will smell, worrying that the bag will leak, worrying about the pain she'll be in when she wakes up from the operation, worrying that it won't fix her, worrying that it'll put me off her, worrying that she won't be able to have children. The list is endless.


One thing I forgot to mention - she should go talk with people who have gone through this.  My wife did that, both before and after her operation, and it was helpful to talk with someone who went through it.  Since then, she has returned the favor to others.

If you can, get your fiancée to join this forum.  A  lot of the answers to her questions are here.


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## SJ!

Hi All,

I'm really stressed out, I can't sleep!  It's 1.30am in Sydney and Greg is having a massive flare.

The Gi tried to ween Greg off steroids about a month ago to start him on infliximab.  He was having 12+bm a day bleeding etc.  He was off pred for 6 days!

Anyway she also put him straight back on prednisone and gave him urgent infliximab as rescue therapy to avoid surgery.  Without the results of the stool culture I requested (suggesting a possible infection)

Anyway turns out he has Cdiff again!  She halted infliximab and put him on a long course vancomycin and suggested a very quick taper off pred as immunosupression will make the bacterial infection worse.

The GI wants him off steroids asap as he has puffyness and other horrible side effects.

His abdomen is swollen and now I feel worried that he might get fulminant bowel or toxic megacolon as he has pancolitis.

Greg still want's to go to work as he has so much happening at work!

The vancomycin seemed to be working slowly but now the steroid taper is getting to the lower end (in the morning he drops from 20mg to 10mg).  It's like he's back at square one again.  

The vancomycin taper still has a few weeks and the steroid taper has 9 days before she wants more bloods and a stool sample clear of c diff so he can go back on infliximab.  

I just can't imagine him lasting that long without ending up in the ER.  

I'm pretty sure at this rate he'll be needing a blood transfusion before it's all over!


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## jvc

My husband has Crohns. We have been battling the disease since symptoms first began in 1998 (literally a few months before we First met). The last 17 years have brought marriage, two children, frequent moves for wonderful careers. It has also included numerous hospitalizations, surgeries, fear, and exhaustion. After nearly 5 years of relative peace the disease has re-entered our lives full force. My husband's health has been struggling the last 10 months despite Hospitalizations, a great medicAl team, and numerous medications and procedures. With two young children my husband's illness is even more difficult to manage. I have struggled the last 10 months with attempts to negotiate parenting largely solo, work, myself, and my husband. I find I cant be a caretaker for him as I was when we didn't have children. I can't attend all the appointments, I can't remember all the details like I could before. Any advice on balancing would be helpful. Thanks, Jessica


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## addyp

Hi jvc 
I just wanted to send hugs I'm in the same boat as you. Hubby just had surgery in May and is doing way better but leading up to it was horrible stress. I feel your pain and understand. We have ten yr old twins. I've always been so dependant on him so it's scary. If you ever need someone to talk to pls msg me


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## Marjorie

I would love to join this group. My fiance and I have been close friends for years and he has pretty severe Crohn's and it's nice to find something like this I can talk to others in the same position. I actually jumped on to try to get some advice. We're in South Carolina and currently he's under the best doctor we could find here but she's at the point that she doesn't know what to do. He's been having extreme pain in his upper left quadrant for over a year now and they haven't found a thing but three days before Christmas his colostomy bag started filling up with blood and they found a bleed in that area but still don't know what to do because it went away on Christmas Eve and we were discharged from the hospital. Now they want to put him on a new medicine called Viberzi that doesn't even seem to be for anything like this and very commonly made people have more abdominal pain. Does anyone have any thoughts? I'm so at a loss and so is he, he just wants this pain to go away and we're almost to the point of finding a new doctor in a different state.


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## SandyUte

Marjorie, welcome to this forum! My hubby's crohn's was considered severe until he got on humira, although he never had to have a colostomy. Some people can tolerate it (humira) and some can't, tho (he also had to wait a year before insurance would pay until he tried other things, although we all knew that is what he needed.) I don't know anything about the med you mentioned except what you said. Still, I find that even the good doctors sometimes find themselves at a loss with difficult cases, but hopefully they listen to our wants, wishes and concerns. If they don't, it is almost like all the knowledge in the world is a waste. With that being said, is your fiance able to articulate his feelings with this doc? Good luck with everything, and let us know how it goes.


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## Marjorie

Thank you for the response Unfortunately Humira does not work with him and he's had terrible side effects from it. Actually most of the medicine that is out and available gives him terrible side effects and due to his colostomy, they won't let him join any clinical trials of anything. He does talk to his doctor and we both voice our worries and what is going on but she's constantly busy and it takes months for him to even try to get an appointment. This new medicine seems just like a last ditch effort and I can't find a thing about it ever being used on people with severe Crohn's. He feels like they are running in circles and I'm starting to feel the same way. It's been so frustrating with there not being another doctor we could go to here and one of the other ones at our main hospital, who was looking after him while his actual doctor was on maternity leave, completely ignored what he tried to tell him about where it was hurting because "most people in your position don't get any flare ups or symptoms in that area". When we were at the hospital before Christmas, his doctor wouldn't even come and see him even though they specifically transferred us to the right hospital from the emergency room so that his doctor could figure out what was going on. The doctor residing over him during our stay told us he really had no experience with people like him and that sometimes medicine isn't good enough to figure out everything that is going on. They've done so many different images on him and tried to figure it out but it's just insane how frustrating it is and he's only 27. He's had Crohn's since he was 14 and already has only his small bowel left, with everything else removed to save his life, and they won't even figure out another way to address what is going on. His intestine in that area started bleeding so obviously there is something wrong but no one can figure it out. We've never been rude to a doctor but I'm to the point of demanding something be done. He can't live on taking pain pills constantly just to subdue the pain so that he can try to go through life without having it bother him. 

Sorry for the ranting, I think I desperately needed to get that out to someone who understands.


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## SandyUte

Oh, I definitely understand the doctor rants. I could go on and on about doctors (and I have many times in this forum in times past.) It is frustrating when we put our lives in their hands and they don't listen or know what to do. Your sweetie is lucky to have someone like you on his side, and you are both too young to have dealt with so much in your lives already. Personally, I don't get why people don't stick with those they supposedly love tho just because they are sick and it _does_ get hard,  it may be a lot to deal with but that is what you do if you really love the person. I can tell you really love and care for your fiance. You are obviously more mature than most for your age. And you are right, living on pain pills is not the answer. I wished I was experienced enough to tell you what is, but I really have no idea in your situations.
And wow! Moved to the hospital so he could be treated by the specialist, and the specialist wouldn't even go see him! All I can say is it sounds like she is overly busy and it really might be time to find a new doctor. If you have to go out of state I can't even imagine the hassles that could cause tho. For instance, would your insurance cover someone who is out of state? I know ours would not. All I can do is wish you both well and let you know we are here if you need a listening ear. You might want to post your story in the my story section of this forum, you might get a lot broader range of people able to help with your specific needs. Please keep us informed tho. We do care.


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## Intelg23

My husband was diagnosed in 2010 after an emergency bowel resection. Since then his life had been turned upside down by autoimmune disease. It is effecting his eyesight, joints, skin pigment and headaches. He is in severe pain all the time. So now depression is a huge factor in our lives. I don't know how to help him. It tears me up to see him suffer. But I know there are lots of things out there he hasn't tried. Drs don't seem to want to be aggressive at all. His only prescribed treatment is pentasa. Everything else is to try and help symptoms. With the crohns and arthritis I'm looking into humira. The dry aren't being helpful and I'm pretty sure insurance will be another obstacle. I'm at a loss, trying to save his life. :sign0085:


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## Superman's wife

Hi everyone, 

My husband was diagnosed I believe when he was 21 (I am sorry I have a horrible memory). He is now 36. After years and years of getting nothing right - he had 7 years of remission on Remicade - right around the time of our wedding that stopped working - went onto Humira - that only lasted maybe a year? With not great results. Now he is off all biologics and is simply taking medical marijuana. He makes a butter that he eats every night before he goes to bed - and smokes mainly at home after work. The medical marijuana has been a LIFE SAVER! He went from 200lbs down to 145lbs - his fistuals are under control - yes he always has weird skin issues, joint pain, fatigue, food is still his enemy, but the ability to have a way out of the pain has done wonders for his mental health. We can actually leave the house and go out and do things. I truly recommend it for everyone and if anyone is on the fence about trying it, I know my husband would be more than happy to speak with them about his experience. He was always the one to say he didn't want to be a pot head and he didn't want to try it. But then he got bad enough that he decided what could he loose? And it was a total game changer. Things are not perfect - and he has his good days and bad days but it truly has been the best thing that has happened in a long time.


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## jlcurry2013

Hi! My first time on the thread, i hope this posts correctly! My husband was diagnosed with crohn's disease in 2010. He did not have health insurance, and my local hospital sent him home to die. Luckily that night the head gastroenterologist was working late at the UVA hospital. They flew him out there, and saved his life after he spent a month in the hospital recovering. 

Since then he's had one major relapse about a year and a half ago. Since the relapse he's been having a hard time putting on weight, even after they put him back on humira.He does smoke, but it's not medically legal (not legal in any way) in our state, so it's hard for him to always have his "medicine" when he needs it. If he goes without it for too long he becomes so depressed and sick. It makes me more heartbroken than i can describe to watch him suffer and cry and know that there is nothing i can do for him, definitely not physically but a lot of the time i feel like i can't even give him the emotional support he needs either. He feels like he has nothing to live for, when myself and so many other people would be lost in the world without him. But he's always worked physical labor, and because of crohn's he can't anymore, and i know that hurts him emotionally also. 

I've been trying so hard to keep both of our spirits up, and we're both seeing separate doctors for anxiety and depression. I just want to see the love of my life happy again, but if the humira isn't working anymore and my state doesn't legalize at least medical marijuana very soon, I'm at a loss as to how i can continue to help him physically. I've been at a loss as to how to help him emotionally for the past year. He says I'm the only thing that makes him happy, but i feel like i don't make him happy at all;he's so upset all the time. 

Has anyone else been through anything similar or have any suggestions on anything that might help my husband? He's been the love of my life for the past 9 years, and if i only had one wish in the world it would be to see him fully healthy and happy. I will do ANYTHING for him, i just feel like I've run out of ideas on how to help him. I feel beyond lost...


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## Crazycajun66

My husband has suffered with Crohn's for almost 25 years.  I really appreciate this group.  I need it.  Thank you so much!


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## SandyUte

I feel bad nobody has replied to the last few posts. I haven't been on this thread myself in ages ( I have tended to go to other threads because of my own issues/needs, but I do have a husband with crohn's disease). This forum in generally is a very supportive group, and I hope you, Crazy, and all of you can find the support you need. Welcome to the forum. I also hope those who have posted and not come back find there way back here.


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## bumblebee1031

At the moment, my husband is undiagnosed. He has his first gastro appointment next Monday. It was supposed to be today but we had to cancel due to inclement weather. We have only been married a year and his symptoms began to peak a little more than that. It has seriously taxed our relationship which used to be shy of perfect (of course with imperfections). I loved being his housewife/home maker. I was supportive of him even though he works 70 hours a week. I never complained. The longer these symptoms persist, the more he seems to change. He has no patience with me. Hardly any interaction. Intimacy is an act of God. I feel guilty when I do things for attention and get upset when he doesn't notice me. He has lost interest in hobbies and doing anything with me. I, too, would never leave my husband, but I have given out. All I do, day in and day out, is give and give and I have nothing left. I have tried talking to him about this and all I get is, "I wish you could feel this pain for five minutes. Maybe you would leave me alone about yours." I know he tries and I don't mean to upset him. I don't mean to sound whiny, but Jesus...I'm exhausted. I don't work because we can't afford childcare even with two incomes, I homeschool our daughter for reasons that are out of my control. I do all I can to have things clean and comfortable for him but I feel like it is never enough. We had our one year anniversary last Wednesday and we literally fought for hours instead of enjoying any of it. I'm sure some of you will recommend I see a Dr and counselor, however, at this time I am not at liberty to do such things because I am so busy trying to get his health under control that mine goes completely ignored. I am on an antidepressant already. The problem is not that. The problem is that I literally don't know what to do that I'm already doing. I feel like my fuel tank is on empty and there is absolutely no way to refuel it. I love him with all of my heart and it hurts me so bad to hear us fight like we do over the little things. I'm so broken. I can only pray we get a diagnosis FAST!


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## ElizaKate

Hi Bumblebee1031 - Your frustration is completely normal. It is very hard to living with someone who is chronically ill. So everything you've expressed, others have been in the same boat. Spouses burn the candle at both ends when our IBD partners are having a flare or are chronically unwell. Not only does the physical disease cause stress in a marriage (stinky gas, moaning pain, debilitating fatigue, surgeries and procedures) but there can also be financial strain due to the cost of medications, dr office copays and missed days of work and emotional strain from all of the above. It's not easy. Add kids to the mix and it compounds the stress. I understand the position of being unable to see a counselor, so here are some things I have done when I feel that the candle is burning at both ends:
1) Honestly. Yes, I can never feel the physical pain or the humiliating symptoms. But he also can't feel the immense pressure and sadness I feel. It's not a competition over who is worse off or more miserable. IBD affects the whole family. So an honest conversation that the burden is a shared burden does help. I know from our honest conversations that he gets how stressed I am and he powers through so many bad days on my behalf. And just like I let him have days on the couch or we alter our plans based on how he's feeling, he lets me snap and rage at how much I hate Crohn's disease when I get overwhelmed. He understands I am scared, angry, tired, and I just need to vent.   
2) Find an outlet/hobby. I felt completely isolated due to my husband's IBD. If affected our social life. It affected decisions I made and I started noticing I was avoiding the world on his behalf. So I started doing things I enjoyed on my own. I understand you have kids and free time is far and few between for you, but perhaps the local library has a program the kids can attend and you can sit and read a magazine. There are homeschooling communities that meet up for museum days and such. Brew a cup of coffee or hot tea, put it in a to-go cup, and go enjoy it at the playground. These are chances just to step away from the home environment where things can really feel like a pressure cooker. I have had to walk away a lot, just to get some space and some courage to go back and keep at it.
3) Faith and a belief in a higher guiding power really pulled me up when I hit rock bottom. We had other things going on in our marriage, but IBD was the shitty icing on the cake, so to speak. Some things are beyond our control and we can only ask for guidance. When it's awful, I pray that I find comfort, that I find hope, and that I feel protected. 
I wish I could tell you there's a magic bullet. Maybe knowing there are others of us out there will help. I still struggle with accepting IBD in our lives and we're coming up on 8 years since the formal diagnosis. I struggle with being the breadwinner, the housekeeper, the pet feeder, etc. When you're not the one who is sick, stuff naturally flows your way. I sure am tired of it, but I remember my vows (in sickness and in health) and that he didn't choose this disease. 
I hope some of this helps.


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## Madhu

Hi Bumblebee, I haven't been on this thread for a while. Just peeped in and I swear your post sounded just like how I wrote 2 yrs ago. That was when my husband was diagnosed with crohn's. We were newly married, his symptoms creeped up slowly and we had a diagnosis after our 1st anniversary. But thank God, no children at that time. Neither of us knew what crohn's is, we were new to the US from our home, had no clue which Dr to go it. Crazy is an understatement. I was frustrated, lonely and angry at him until I knew he wasn't faking it and he really had a serious issue. Then it was all prayers. I had to be strong for him, I didn't cry once before him. Rushed into our tiny bathroom when I couldn't stop my tears. But all of that suffering I went through is not even 2% of what he was going through.

I know that not having a diagnosis is even worse. Because he was diagnosed quickly but it took that Dr 4 months to send us to an IBD specialist which was enough time for the disease to get worse. I remember crying to God once, praying and begging not to take him away from me. But then things got better. All it takes is a good diagnosis, the right Dr for you and the right medicine. It's easier said but when this combination sets, life gets easier. 

He flared once beginning of this year, but his Dr was able to control it fairly easily. I hope and pray your family finds the peace you need and your husband doesn't suffer anymore. Keep looking for doctors until you find the one right for him. As a spouse, you are the best thing that can happen to an IBD person. Keep up the good work!


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## Autumnleaves

I am looking for some opinions and answers and I'd be so grateful for any responses. I've been with my crohns husband for ten years. He was diagnosed just after we started dating. He takes asacol and enemas but in ten years has never been 'in remission' (whatever that is). He took azathriprine for 12 months but it made no difference to his pattern of illness so he came off it. 

On Saturday and Sunday he jumps out of bed - often before me. We take the dog on long walks, go out for meals, see friends and otherwise live a totally normal life. 

On Mondays however it is like Groundhog Day. I coax him out of bed and he shuffles around the house moaning to himself and holding his stomach. Often he seems to want me to give him permission to call in sick (I avoid giving an opinion as it's not my decision to make). He will say out loud things like 'I feel terrible' and 'I don't know whether to go it'. Whether he goes in or not, by the evening he is fine and back to being full of life etc. This happens every morning from Monday to Friday. I find it really hard to be sympathetic any more :-( im terrified his work will eventually sack him (he didn't work a full week last year and had over two months off)

His crohns very rarely effects our personal life. It only seems to effect the working day. We go camping and on activity holidays which he loves.  I feel like I'm going crazy. Sometimes I lose patience and say mean things and then I feel so guilty. 

He says he likes his job, it is admin work and low stress. He likes who he works with etc. I used to be the breadwinner before I became a SAHW and I used to say cut down to part time or take a career break but he always said he didn't want to. 

Has anyone else had this sort of experience? Any solutions?


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## StrugglingMom&Wife

*caregiver to my fiance and daughter as well as myself*

i am 26yrs old and i have a 3yr old daughter who has a genetic disorder called 15q11.2 microdeletion. shes missing a part of chromosome 15 and as a result of that she has a seizure disorder, severe anxiety, adhd, an arachanoid cyst in her brain, acid reflux, congenital ptosis of the eye(which shes had surgery on twice so far), an eating disorder that causes her to have chronic constipation, sensory processing disorder, sensory overload disorder, developmental delays, and ptsd when it comes to doctors and hospitals. about a year ago my fiance of 5 1/2 yrs was diagnosed with diverticulitis. he was hospitalized for a week because he had an abscess in his stomach that was extremely close to bursting open. he also has anxiety, depression, add, ocd and about 2weeks ago he was diagnosed with ulcerative colitis and has since been doing blood tests and getting no results from his doctor. i was diagnosed with ocd, severe anxiety, bipolar depression, rapid changing bipolar disorder, chronic headaches and migraines, chronic constipation, chronic urinary tract infections, muscle spasms that affect my back, knees and hips, cirrhosis of the liver, adhd, and ptsd. i have way way more on my plate than i can handle. i am extremely stressed out with everything thats going on. i have no family to help me and no friends either. my fiances family are all either way too busy or just cant afford to help us. he cant work because of his UC and my daughter gets disability but its nowhere near enough to cover our bills and necessities. im trying to find a job but nobody will hire me because of my bipolar disorder and my fiance needs me at home to help him and to take care of our daughter as he is not physically able to watch her. hes in constant pain and discomfort and can hardly make it to the bathroom let alone chase a 3yr old around all day. i just dont know what to do. his doctors just keep doing bloodwork on him and wont do any other tests. the meds they give him dont do anything and everytime he makes an appointment to see his doctor the office either doesnt put his appointment in their system or his doctor has some stupid excuse as to why he cant see him. the emergency rooms dont do anything for him except put him in more pain. its an endless cycle of nothingness. we are forced to do our own research online to try to find relief and more info on his conditions and all that does is worsen both of our anxieties and cause me extreme emotional distress to where im almost having panic attacks. we just need answers. i dont know how much more i can handle. im exhausted emotionally, physically and mentally. i wish we had some help.


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## Madhu

StrugglingMom&Wife said:


> i am 26yrs old and i have a 3yr old daughter who has a genetic disorder called 15q11.2 microdeletion. shes missing a part of chromosome 15 and as a result of that she has a seizure disorder, severe anxiety, adhd, an arachanoid cyst in her brain, acid reflux, congenital ptosis of the eye(which shes had surgery on twice so far), an eating disorder that causes her to have chronic constipation, sensory processing disorder, sensory overload disorder, developmental delays, and ptsd when it comes to doctors and hospitals. about a year ago my fiance of 5 1/2 yrs was diagnosed with diverticulitis. he was hospitalized for a week because he had an abscess in his stomach that was extremely close to bursting open. he also has anxiety, depression, add, ocd and about 2weeks ago he was diagnosed with ulcerative colitis and has since been doing blood tests and getting no results from his doctor. i was diagnosed with ocd, severe anxiety, bipolar depression, rapid changing bipolar disorder, chronic headaches and migraines, chronic constipation, chronic urinary tract infections, muscle spasms that affect my back, knees and hips, cirrhosis of the liver, adhd, and ptsd. i have way way more on my plate than i can handle. i am extremely stressed out with everything thats going on. i have no family to help me and no friends either. my fiances family are all either way too busy or just cant afford to help us. he cant work because of his UC and my daughter gets disability but its nowhere near enough to cover our bills and necessities. im trying to find a job but nobody will hire me because of my bipolar disorder and my fiance needs me at home to help him and to take care of our daughter as he is not physically able to watch her. hes in constant pain and discomfort and can hardly make it to the bathroom let alone chase a 3yr old around all day. i just dont know what to do. his doctors just keep doing bloodwork on him and wont do any other tests. the meds they give him dont do anything and everytime he makes an appointment to see his doctor the office either doesnt put his appointment in their system or his doctor has some stupid excuse as to why he cant see him. the emergency rooms dont do anything for him except put him in more pain. its an endless cycle of nothingness. we are forced to do our own research online to try to find relief and more info on his conditions and all that does is worsen both of our anxieties and cause me extreme emotional distress to where im almost having panic attacks. we just need answers. i dont know how much more i can handle. im exhausted emotionally, physically and mentally. i wish we had some help.


Hey there . I'm so sorry you're going through all this. It's tough enough having one sick person in the family, you are such a brave woman. And you're doing absolutely great. I don't have knowledge enough to talk about your daughter or your issues, but for your fiance's UC, can you go to a different doctor? Have they even done a colonoscopy for him, or just bloodwork? There is a doctor directory in this forum where you can look for doctors in your region, based on first hand reviews from members. If you live close to new York, please private msg me. I will give you a personal reference to my husband's doctor. He is amazing and literally saved our lives. Hang in there dear!!


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## StrugglingMom&Wife

Madhu said:


> Hey there . I'm so sorry you're going through all this. It's tough enough having one sick person in the family, you are such a brave woman. And you're doing absolutely great. I don't have knowledge enough to talk about your daughter or your issues, but for your fiance's UC, can you go to a different doctor? Have they even done a colonoscopy for him, or just bloodwork? There is a doctor directory in this forum where you can look for doctors in your region, based on first hand reviews from members. If you live close to new York, please private msg me. I will give you a personal reference to my husband's doctor. He is amazing and literally saved our lives. Hang in there dear!!


Thankyou for your kind words. we just got him another new doctor yesterday and he sent out a referral for my husband for a gastroenterologist and he said we'll go from there and see what that doctor says. we live in indiana so i think good doctors are hard to come by here but we're working with what we've got here. no colonoscopy has been done yet. just bloodwork and an ER doctor put his finger up my husbands butt for some odd reason. i will check out the doctor directory. i didnt know this forum had that. thank you for that info. im hanging in as best as i can at the moment. it would help if i had some friends that i could vent to but sadly i have no friends. havent had any in a long time. thanks for replying.


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## AyCee

Hi everyone! Joining this group as my boyfriend of 8 years has Crohn's disease. He was diagnosed 14 years ago so he already had it when we met. 10 months into our relationship he had to have emergency surgery to get a permanent ileostomy. I couldn't imagine not being around to support him through the good and bad days.


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## cmack

Welcome AyCee, 

Your boyfriend is a lucky guy to have your support, I hope you find the forum helpful.


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## Naomi802

So this is all really new to me and its taken me quite a bit of time to get the courage to come on here. Ive been reading so many different stories and figured that this was my best chance at coming to terms with my current situation and getting some help! So my boyfriend of just over a year has CD, things have always been a challenge for us as a couple but we always get through it together! He's been having a tough time and it's making our relationship difficult to maintain.

These past four months he has been going through a terrible spell. One that I would say is the worst I've seen him go through. He barely wants to see me and says that he need's his rest. I have always understood that and have tried to just do the things that he needs me to do, and if there isn't anything I try to just leave him alone. He tells me not to take it personally, but lately its been hard to think that he doesn't want the distance from me specifically. He runs his own crossfit gym and will wake up at 5am to do his sessions and then will go most of the day without texting/talking to me. The only way I get to see him is if I either drive out to see him (about 20 min each way!) or if I take one of his classes. I do my best to take it as he's just trying to stay committed to his passion. But a lot of the time it feels like I have to take the back seat in most situations and remind myself that he's the one with the illness and not me. 

Another things is that his level of intimacy is basically non-existent! He hasn't made any form of pass on me in these past four months and I'm beginning to feel extremely insecure about everything surrounding my position in our relationship. When I think about it long enough I feel shameful for being upset about not having an intimate relationship with him when he goes through what he does, but at the same time I feel like my needs should be important too. I feel extremely selfish for being upset about these kinds of things but it is part of any relationship right? Illness or no illness! 

Lastly I've tried talking to him about how I have been feeling lately and it either never gets resolved or ends in us both filled with resentment. I've suggested that we take time apart so he can focus on himself but he seems to get upset when i suggest distance and says I need to stop threatening him with a breakup because the added stress just makes it work for him. But the only reason I suggest it is because trying to talk to him these past four months is like talking to a brick wall. He says that looking at his phone gives him anxiety because he knows I've blown up his phone and get mad at him for not answering me for hours at a time. 

Fast-forward a bit and we have now both agreed that we are going to take these next couple of weeks to be apart and figure ourselves out. Normally I'd say that it could be a healthy thing, but more and more each day I feel as though I'm either not strong enough as a partner or mentally to keep the relationship running. With each conversation we grow further apart and I feel like I make him feel guilty for having CD when that's not my intention at all. 

I'm hoping that there is someone out there with any form of advice on how we can maintain a healthy relationship when things get this bad, because I know there will always be times like this!

Please help!
Naomi (p.s Sorry for such a long message, I'm really desperate for help)
Naomi


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