Spouses of Crohnies Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

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.
 
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.
 
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:
 
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 !!
 
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.
 
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!
 
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 ;)
 
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 !!!
 
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:
 
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
 
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.
 
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.
 
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
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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 !!!
 
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.
 
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 !
 
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.
 
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.
 
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:
 
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.
 
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.)
 
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.
 
: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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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.
 
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.
 
Karen said:
: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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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
 
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.
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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 !!
 
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
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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 !!
 
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 !!
 
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
 
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!
 
mrswill said:
Hi Neil i know its hard and if your a fixer its even harder to ...
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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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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 !!
 
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!
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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...
 
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.
 
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 :-(
 
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 !!!
 
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
 
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!
 
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
 
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!
 
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:
 
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 :)
 
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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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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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 :-(
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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.
 
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.
 
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!!
 
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
 
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:
 
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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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 !!!
 
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?
Click to expand...
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.
 
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!
 
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!
Click to expand...

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:
 
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:
Click to expand...

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!
 
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...
 
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.
 
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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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 !!!
 
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
 
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
Click to expand...

: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 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:
 
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 !!!
Click to expand...

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

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so ... tell your friends and loved ones to come and join us !!!
 
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.. :-(
 
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.. :-(
 
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.
 
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?
 


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 !!!
 
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
 
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:
 
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?
 
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 !!
 
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
 
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.
 
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
 
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.
Click to expand...
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.
Click to expand...
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.
Click to expand...
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.
 
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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