• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Spouses of Crohnies Support Group

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:
 
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 YOUto 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 ;)
 
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.
 

Karen

FRIEND 4 1 & ALL


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


 
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?
 

Karen

FRIEND 4 1 & ALL
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 ... :(
 
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?
 

Karen

FRIEND 4 1 & ALL
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 !!!
 
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

FRIEND 4 1 & ALL
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 !!!
 
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...
 
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
 
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.
 
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.
 
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..
 
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
 

Karen

FRIEND 4 1 & ALL


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 !!


 
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!

:)
 

Karen

FRIEND 4 1 & ALL
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 !!
 
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:
 

723crossroads

Banned
Location
USA
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

FRIEND 4 1 & ALL
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 !!!
 
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. :)
 
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

Banned
Location
USA
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

FRIEND 4 1 & ALL
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

FRIEND 4 1 & ALL
: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

FRIEND 4 1 & ALL
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 !!!
 
Location
UK
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

FRIEND 4 1 & ALL
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:
 

723crossroads

Banned
Location
USA
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:
 
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:)
 
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.
 
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.
 
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?
 

723crossroads

Banned
Location
USA
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:
 
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.
 

723crossroads

Banned
Location
USA
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!:)
 
Last edited:
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.
 
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.
 
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

FRIEND 4 1 & ALL
: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 !!
 
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! :D. 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!
 
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.... :(
 

Karen

FRIEND 4 1 & ALL
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 !!
 
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?
 
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. :)
 
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.
 
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.
 
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.
 

Karen

FRIEND 4 1 & ALL
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:
 
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.
 
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.

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.
 
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?
 

Karen

FRIEND 4 1 & ALL


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 !!
 

Karen

FRIEND 4 1 & ALL
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:
 
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.
 
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.. :(
 
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
 
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!
 
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. :)
 
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?
 
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:
 
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.
 
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.
 
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.
 
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!
 
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!
 
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
 
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
 
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.
 
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?
 
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.
 
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.
 
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.
 
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.
 
Location
Lebanon
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.
 
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.
 
Top