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MY issues, living with spouse who has Crohn's

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Posted 5/21/2018 12:07 PM (GMT 0)
Hello all,

Reached a point in my life where i am running into major roadblocks in my relationship. Here is the background:

- We are in our early 30's
- Engaged (to be wed in Sept)
- Fiance has crohn's
- She has had 2 surgeries over the past 10 years

Issue:
My fiance was diagnosed with severe Crohns over ten years ago, before we were together. We have been dating and now engaged for 3+ years and it has always been an issue between us. The short version of the story is, i have a hard time with it.

I am optimistic about her health. I came in (after she has been dealing with it for years) and watched how much it impacted her life. I want to get married, have kids, the whole nine yards... and i truely believe we can have a healthy relationship.

We get into fights because it upsets me when she doesn't take care of herself. She still smokes cigs, drinks alcohol, eats food she probably shouldn't eat, doesn't excercise, etc. I believe all of those factors contribute to her health and i want her to take it more seriously. You can imagine the situation that puts us in.

With her having severe Crohn's, i just feel like it really IS a major part of her life and rightfully should influence her attitude and decisions about her lifestyle. We both need to take better care of ourselves... she doesn't want to allow the disease to play that much of a role in her day to day. She equates "taking care of herself" with "not having fun".

I just want to be sure that i have a wife that is happy and healthy as can be. We both have talked about having kids. I love her very much but it feels like we have different stances and beliefs on the situation and its leading to our seperation.

I would very much appreciate any help or thoughts on the matter.

Thank you.
Posted 5/21/2018 2:08 PM (GMT 0)
It is great that you want to be supportive however, you must accept that only she can make any changes on how she handles her health. You cannot do it for her. Any changes have to be made by her, not you or anyone else, it has to be her choice. Yes, it affects you & anyone close to her. You can either accept it or not. Only you can decide that. Have the two of you ever had a calm conversation about this? Have you ever expressed your feelings about this to her?

One of the biggest gripes I have is family or friends giving me their friendly advice. I know they mean well, but honestly, after a while it gets old. Do you know how many times over the course years I have been told "I heard or read an article about how this diet or that diet will help you so much." Or, well maybe you should do this or that. Believe me, in the early dx years with a surgery under my belt I did not appreciate all that well meaning advice. Now that I am older I tune them out. I educated myself about this lovely disease & these well meaning folks have no clue. If you are reminding her maybe you shouldn't eat this or drink that, you could be making matters worse. Diet alone is not the key for someone with severe disease activity. Yes, I have learned over the years things to not eat, it is all by trial & error. It is not a one size fits all deal.

I am going to assume she is on medication. Does she take her medication as directed or only when you decides to? She very well could be in denial about the disease too. A lot of us go into denial when we are first diagnosed. There is a chance she did & stayed there.

Women do get pregnant & have babies with crohns. Most try to have their crohns under good control before venturing off in that area. And they take medication that is ok to take while carrying the baby.

September is not that far off & you really need to decide what you want to do. It can be a tough road for the SO to deal with. We have seen marriages break up because a spouse just could not deal with having a spouse with an illness. If you haven't talked to her about this, you need to. You owe it to yourself & her.
Posted 5/21/2018 6:23 PM (GMT 0)
You said your main issue with her is:

MGNYJCWS said...
She still smokes cigs, drinks alcohol, eats food she probably shouldn't eat, doesn't excercise, etc.

I have had Crohn's Disease for 20+ years, and know how painful it can be when my family members tell me what to eat and what not to eat. I do not see anything wrong with her behavior except smoking cigarettes. Smoking is indeed bad for Crohn's Disease and your future baby.

Many GI doctors encourage their patients to eat as much as they can, because they do not get enough nutrition from regular diet. For me, if I eat fried chickens, french fries and drink regular sodas, I am perfectly fine. However, if I eat healthy salad, I will have a severe Crohn's attack. If I eat nuts with healthy fibers, I will have total bowel obstruction.

I have been married for 10+ years and my wife knows how bad my Crohn's can get, but she is very supportive of my decisions and food choices.
Posted 5/21/2018 6:40 PM (GMT 0)
One more thing about exercise: if I exercise too much, I will have diarrhea. In addition, I am "too busy" to exercise. So my only "exercises" are household chores such as washing dishes by hand, grocery shopping, cutting my own grass, raking leaves, trimming shrubs, ironing my own clothes, etc.
Posted 5/21/2018 8:46 PM (GMT 0)
We get into fights because it upsets me when she doesn't take care of herself. She still smokes cigs, drinks alcohol, eats food she probably shouldn't eat, doesn't excercise, etc. I believe all of those factors contribute to her health and i want her to take it more seriously. You can imagine the situation that puts us in.

Smoking is the only one of those which has been proven to adversely affect Crohn's disease - none of the other things matter or, rather, haven't been proven to matter.

Would your fiancee's exact same behaviour bother you if she didn't have Crohn's disease?

PS: EruditePaul makes a valid point about healthy foods causing pain and diarrhoea in some Crohn's patients. I've had two surgeries myself and I can tell you I cannot eat how I used to before the surgeries/developing a stricture. My appetite is variable too; some days I don't have much appetite, so it's easier to get down something fairly small but high calorie than a massive bowl of salad. For whatever it's worth, my surgeon told me that I didn't need to worry about fibre anymore and to just take a multivitamin pill if I felt like I was missing out on nutrients.

Post Edited (NiceCupOfTea) : 5/21/2018 2:54:43 PM (GMT-6)

Posted 5/21/2018 9:53 PM (GMT 0)
Hey MGNYJCWS,

Thanks for being honest and sharing. It sounds like you love your wife, and are accepting of her health issues. I think it's important for people who are supportive are allowed to vent their frustrations. My partner suffers from depression and while I accept her and am supportive it's difficult when her condition adversely effects me.

Chrons is tricky because not many people understand it completely. I imagine that eating the wrong foods that trigger her symptoms means that your life is adversely effected too, whether her mood suffers or you have to sacrifice a life beyond the home because she's not up to much beyond resting or staying put. I think a partners sacrifice is important to acknowledge, even if they came into a situation with eyes wide open.

I would have a frank but loving conversation with your wife. Choose a moment, perhaps when she is feeling at her best, and talk to her about how her eating habits and smoking are taking their toll on you, as a loving and caring partner. Tell her about your dreams for a future, how much you want her to be part of that. Bad eating and smoking are likely symptoms of her own internal negativity. As a former smoker I know that people telling me off was the worst, and nagging never worked. However a clear, loving expression without any conditions definitely made an impact.

Good luck!
Posted 5/21/2018 10:14 PM (GMT 0)
Hey MGNYJCWS, welcome to the forum. I'm kind of on the opposite end of what people are saying here. Yes, it's her life and her body and all that, but a marriage is a partnership. A true partnership. I had Crohn's before my husband and I started dating, and I've been hospitalized closed to 40 times in the 6 years we've been married. We have two kids, ages 4 and 2. So I am proof that it CAN work, but also proof that Crohn's is kind of an up and down thing.

However, I agree with your concerns. I think the biggest thing that has me concerned is respect. A marriage can ONLY work with respect of two kids. Sure, it's her life and body, but you're also considering her as the mother of YOUR children, so you do have some say in it.

The only way this works is if both of you have respect for each other. What other people are saying is true - Crohn's is trick with regards to diet. Some people have different trigger foods, and most healthy foods (like fresh fruits and veggies) are extremely painful.

On the other hand, though, she needs to respect your concerns for her because of how it's going to impact your life. If you sit down to have a respectful conversation with her where you are asking her to help you understand why she eats certain foods, etc., but she doesn't respect it back, then that's a warning sign of more than just Crohn's, if that makes sense.

For example, if my husband became concerned with my stress eating chocolate (true story) because it is a trigger food for me, and I just wanted to eat chocolate because it makes me feel emotionally better, then that's wrong on my part. I'm eating something that I know is making me sick, and I am disregarding his feelings. If I'm sick, he's the one that has to pick up the slack for watching kids, taking me to the ER, etc. Now, if he starts pushing fruits and veggies on me (also trigger foods) without listening to my reasoning on why I don't eat them (they are painful, and I know from experience, and my dr has cautioned me against eating them frequently), then he's not respecting me.

I hope that makes sense. You can have disagreements about it, and in the end you can't force her, but if she doesn't treat your concerns with respect, and/or if you don't treat her reasoning with respect, then that's kind of a red flag.
Posted 5/21/2018 11:34 PM (GMT 0)
I just know if somebody used my Crohn's to make judgements about my lifestyle, they would be shown the door eventually. It smacks of being controlling. I'm not a child - I don't need to be told what's good for me and what isn't. I decide what to eat, not anybody else.
Posted 5/21/2018 11:36 PM (GMT 0)
Hi MGNYJCWS,

I too give you credit for you outlook on your future relationship, and for posting here looking for advice. I'm very surprised that your partner would be so negative about taking care of herself. You have a future together, and you'd think she would want to do everything possible to make that relationship the best it can be.

I would strongly consider pre-marriage counseling. If you can't get on the same page now, then once your married, and especially when kids come along, you'll have a really big problem on your hands.

Hopefully she will see that you have her best interests at heart. It's tough for her dealing with this dreaded disease, but it's equally tough on loved ones. I wish you all the best and hope that you reach a mutual understanding on this.
Posted 5/21/2018 11:45 PM (GMT 0)

straydog said...
It is great that you want to be supportive however, you must accept that only she can make any changes on how she handles her health. You cannot do it for her. Any changes have to be made by her, not you or anyone else, it has to be her choice. Yes, it affects you & anyone close to her. You can either accept it or not. Only you can decide that. Have the two of you ever had a calm conversation about this? Have you ever expressed your feelings about this to her?

One of the biggest gripes I have is family or friends giving me their friendly advice. I know they mean well, but honestly, after a while it gets old. Do you know how many times over the course years I have been told "I heard or read an article about how this diet or that diet will help you so much." Or, well maybe you should do this or that. Believe me, in the early dx years with a surgery under my belt I did not appreciate all that well meaning advice. Now that I am older I tune them out. I educated myself about this lovely disease & these well meaning folks have no clue. If you are reminding her maybe you shouldn't eat this or drink that, you could be making matters worse. Diet alone is not the key for someone with severe disease activity. Yes, I have learned over the years things to not eat, it is all by trial & error. It is not a one size fits all deal.

I am going to assume she is on medication. Does she take her medication as directed or only when you decides to? She very well could be in denial about the disease too. A lot of us go into denial when we are first diagnosed. There is a chance she did & stayed there.

Women do get pregnant & have babies with crohns. Most try to have their crohns under good control before venturing off in that area. And they take medication that is ok to take while carrying the baby.

September is not that far off & you really need to decide what you want to do. It can be a tough road for the SO to deal with. We have seen marriages break up because a spouse just could not deal with having a spouse with an illness. If you haven't talked to her about this, you need to. You owe it to yourself & her.


Thanks for the feedback. I understand your point that only she can make the decisions to ultimately change her habits. It is something I struggle with, as I am sure many people will understand. She is on medication, she takes it daily.

We have had many good conversations about it. And I understand the importance of working this out... that is why I am reaching out, for some additional help. Thank you!
Posted 5/21/2018 11:51 PM (GMT 0)

NiceCupOfTea said...
We get into fights because it upsets me when she doesn't take care of herself. She still smokes cigs, drinks alcohol, eats food she probably shouldn't eat, doesn't excercise, etc. I believe all of those factors contribute to her health and i want her to take it more seriously. You can imagine the situation that puts us in.

Smoking is the only one of those which has been proven to adversely affect Crohn's disease - none of the other things matter or, rather, haven't been proven to matter.

Would your fiancee's exact same behaviour bother you if she didn't have Crohn's disease?

PS: EruditePaul makes a valid point about healthy foods causing pain and diarrhoea in some Crohn's patients. I've had two surgeries myself and I can tell you I cannot eat how I used to before the surgeries/developing a stricture. My appetite is variable too; some days I don't have much appetite, so it's easier to get down something fairly small but high calorie than a massive bowl of salad. For whatever it's worth, my surgeon told me that I didn't need to worry about fibre anymore and to just take a multivitamin pill if I felt like I was missing out on nutrients.

Thank you for the response. Honestly, i don't think i would care about her habits as much if she wasn't diagnosed. I guess i just think it is more important being that she has a medical condition...

I do understand that Crohns is a tricky disease. NOT one approach will work the same for everyone. I think one of my problems is that i know people that have radically changed their lifestyle and had great success keeping the symptoms in check. I just want that for my fiance. I just want her to feel better.
Posted 5/21/2018 11:57 PM (GMT 0)

dbrookenz said...
Hey MGNYJCWS,

Thanks for being honest and sharing. It sounds like you love your wife, and are accepting of her health issues. I think it's important for people who are supportive are allowed to vent their frustrations. My partner suffers from depression and while I accept her and am supportive it's difficult when her condition adversely effects me.

Chrons is tricky because not many people understand it completely. I imagine that eating the wrong foods that trigger her symptoms means that your life is adversely effected too, whether her mood suffers or you have to sacrifice a life beyond the home because she's not up to much beyond resting or staying put. I think a partners sacrifice is important to acknowledge, even if they came into a situation with eyes wide open.

I would have a frank but loving conversation with your wife. Choose a moment, perhaps when she is feeling at her best, and talk to her about how her eating habits and smoking are taking their toll on you, as a loving and caring partner. Tell her about your dreams for a future, how much you want her to be part of that. Bad eating and smoking are likely symptoms of her own internal negativity. As a former smoker I know that people telling me off was the worst, and nagging never worked. However a clear, loving expression without any conditions definitely made an impact.

Good luck!

Thanks for the feedback. I have had some good conversations with her in the past... and we have made some progress on the discussions. I just struggle with it.
Posted 5/22/2018 12:02 AM (GMT 0)

73monte said...
Hi MGNYJCWS,

I too give you credit for you outlook on your future relationship, and for posting here looking for advice. I'm very surprised that your partner would be so negative about taking care of herself. You have a future together, and you'd think she would want to do everything possible to make that relationship the best it can be.

I would strongly consider pre-marriage counseling. If you can't get on the same page now, then once your married, and especially when kids come along, you'll have a really big problem on your hands.

Hopefully she will see that you have her best interests at heart. It's tough for her dealing with this dreaded disease, but it's equally tough on loved ones. I wish you all the best and hope that you reach a mutual understanding on this.

Thank you for understanding. I can't dispute that I am being too controlling of a situation that is not mine to control. That is why I am reaching. I am just looking for some piece of advice that will resonate with me and stick with me. I totally agree, I believe with some pre marriage counseling we can do better, I appreciate your feedback, I really do.
Posted 5/22/2018 1:23 AM (GMT 0)
We do understand that you want the very best possible for your fiance. But, your comment of you see other people make all of these radical lifestyle changes & do great. That comment is no different than me being told if I would go on this diet or that diet I would be so much better off. I was very ill & eating food was a huge issue for me. I am talking about any kind of food. It just does not work that way. Every person's crohns disease is different, you cannot think its a one size fits all. You cannot compare her to anyone else, you simply cannot do that. The internet is full of fad diets & cures. There is no cure for crohns. The only people benefiting from that are the people selling the diet.

She has 2 resections I am assuming under her belt. More than likely she has absorption issues & eating could be an issue in itself. You mentioned this is a control thing on your part, you need to let that go if you intend on staying with her. Its a partnership, you both need to be on the same page.

Maybe try some counseling but any counselor will tell you let go of the control thing with her crohns.
Posted 5/22/2018 2:03 AM (GMT 0)
Well the main problem is smoking so maybe buy her a book on stopping ? Its so hard to stop smoking but if she want to she can, i understand her not wanting to let a disease rule her life choices ect but seems to me she isnt very happy if she is not even thinking about quitting smoking for her health, normal healthy people should stop but having crohns it can make things much worse for her , so she should want to stop it,, Im sure she does really want to stop even if she says she dont,, its the nicotine addiction which would make her say that, But in the end its her choice and if you dont want to be with someone who takes such a gamble with their health fair enough , everyone would like a partner who has a healthy attitude ect taking risks with your own health isnt really an attractive quality , its not healthy an its not fun , If she didnt smoke you would feel happier , she would eventually feel better for it more then likely, Its not a nice habit anyway even if it wasnt so unhealthy, if she wants children she should think to stop smoking before getting pregnant anyway ,, hopefully your partner would do that so maybe you just need to hear her say she does want to stop soon an let her know that you would not accept it at all if she kept it up while pregnant an after the kids were born
Posted 5/22/2018 2:05 AM (GMT 0)
alphabet, you said it has been an issue since the beginning of your relationship. that means it will be an issue for the remainder of your relationship.. ill play the uncaring support person for a minute. cut your losses. if it is such an issue now it will only get worse. do you live together? then her smoking IS your business, in essance, you are both smoking and your future kids will also be smoking. if you are bothered by her not taking proper care now, wait till your married and on the hook for the next 100k surgery. you will rightly or wrongly think that 'if only you took better care' we would not be filing bankruptcy. doe anyone in her family have Crohns disease? if so there is a much higher chance of your kids developing the disease, you want to put your kids through that? by drinking, do you mean an drink every now and then, or she downs a six pack every night? smoking and drinking often go together so if she stops one, everytime she does the other she will want the one she quit.

on the subject of eating the right foods, there are no right foods. each of us is different in what we can or are willing to tolerate. just my opinion and its worth what ya paid for it. be strong and move on.
Posted 5/22/2018 2:22 AM (GMT 0)
As Randy said, it is quite possible that her Crohn's Disease can get much worse. Are you willing to take care of her for the rest of her life in the worse case scenario that she becomes disabled and unable to work?

You have been dating for more than 3 years. There must be something in her that you really like. My former boss told me (when I got married) that marriage itself is like a lesson from which you can learn a lot. During the almost 18 years of marriage with my wife, I have learned a lot and have become a much better person.
Posted 5/24/2018 12:36 AM (GMT 0)
"I love her very much but it feels like we have different stances and beliefs on the situation and its leading to our seperation."

One thing I have found is that no one can change who another person is. Can you accept her illness and how she manages her health? That's the bottom line. No need for arguments.

Best wishes to you both!
Posted 5/24/2018 2:16 PM (GMT 0)
I see where you're coming from and disagree some with users here. It depends on what you mean by eating better. Sure people here assume you mean fruits & veggies and they're right you shouldn't push that. But if she's slinging down candy, soda, unnecessary sugar rich foods, then I think you're right to ask her to stop. Those aren't good for anyone.

Only advice I'd say is if you ask her to stop something, then you better lead by example.....don't ask her to stop drinking soda and you drink a 2L a day because you're in better health...
Posted 5/24/2018 2:33 PM (GMT 0)
It may not be a bad idea to go to a therapist to talk about your feelings. It can turn into a difficult situation if you don't face it head on. Having a chronic illness can put a damper on life, and on everyday activities. it's hard when you're suffering with symptoms of Crohn's, and it's stressful wondering when it's going to rear it's head in the future. There's no way around it.

Taking care of yourself isn't necessarily "not fun" but living with active IBD is. The word severe, in my mind, implies future surgeries, steroids (and the side effects that go along with them), hospitalizations (the expense, time, sometimes the inability to work the career you desire), the potential for both manageable, and unmanageable, ups and downs in health and many emotional challenges over the years. It's not so simple as "eat well, stop smoking & get better". You can do those things, and sure, it's better for your long-term health, but it may not be of any impact if you're suffering with debilitating symptoms right now. Living with chronic illness is not an easy way to live - but no one chose it... The thought of having children is with an illness can be stressful. You think about; will you be well enough to care for them? will you be able to be present for their developmental milestones? will they develop IBD (much higher probability when a parent has IBD)? how would you handle that if it happened? how will pregnancy affect your IBD? will the drugs impact the baby?
Posted 5/24/2018 2:58 PM (GMT 0)
I just get so sick and tired of seeing lifestyle blamed for severe IBD, when in reality what mainly determines the severity of IBD are genes and other factors beyond our control.

There's a guy on the UC board right now, on the brink of having surgery (or perhaps has had it already - he hasn't updated yet). Three years ago he claimed to have cured his UC and left the board; he ate the healthiest possible diet in existence, used god knows how many supplements, etc. In the end it still wasn't enough, and he's been in hospital for the last two months, desperate for relief.

As for me, I went through a phase of trying to eat more healthily (by reducing sugar and eating more fruit and vegetables). This was before I developed a stricture and my digestive system could still handle vegetables. Look at my sig to see how much that helped. In the meantime my brother has had mild Crohn's for 20 years, despite eating no more healthily than I do. Oh, and I have never smoked (my brother is an ex smoker) and rarely drink alcohol.
Posted 5/24/2018 3:57 PM (GMT 0)
Lets be honest no two cases are the exact same. Yes, we can be on the same medications but everyone reacts differently to these medications. Someone with two resections at an early age & is still in the severe category is not the best case scenario. I am venturing a guess she is trying to live her life the best she can. She is working a full time job so this tells me she she is not doing everything completely wrong.

The problem we have today is the internet being so full of untrue & irrelevant information, in other words pure garbage. Both people with or without IBD's fall for it hook line & sinker & think its the gospel because they read it on the internet.
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