Husband has Crohn's-How to cope

[bosto99]

Hello, My husband was diagnosed with Crohn’s 3 years ago. He has yet to gone into remission. He has a fantastic gastroenterologist who specializes in Crohn’s. He is on several medications, one of which is supposed to send him into remission within a few months (fingers crossed).
In the meantime I am having trouble being the supportive wife. I do everything. I work full time, do all the housework, get his meds, cook, etc. I feel like I am falling apart. I can’t handle everything on my own and I always feel alone. No one seems to understand what I am going through and I don’t even tell people. I’m sure they would think he is the sick one, so what is your problem?!
It seems within the past year he has become negative. He is short with me and seems to pick fights with me. When I call him out on it he just says he doesn’t feel well but never apologizes or acknowledges that he is being downright mean. I shouldn’t be his punching bag when he doesn’t feel well. When I voice these feelings he acts like the victim and says what do you want from me? I don’t feel well.
We don’t do anything anymore. We don’t go on vacations, or out to dinner, etc. I am trying to continue to live my life to the fullest. I love my job, I have many friends, and my own interests. I recently planned a vacation to Paris without him I try to be understanding, but I am just so exhausted from it all.
I would never leave him, but was wondering if any other spouses out there have dealt with this. I feel like I always have to be the positive upbeat one and I can’t do it anymore. At times I resent him for not dealing with the disease better.

 

[VeganOstomy]

He doesn't realize how lucky he is. When I was at my worst (lasting several years), I had no support from my wife. I had to continue earning an income from home while experiencing 24 hours of pain, vomiting, 15-20+ bowel movements (urgent and with many accidents), and too weak to prepare my own meals, I'd go days between meals. While being told many times to either "suck it up" or "do it yourself" I don't think I could have been lower. I spent many days alone. I deteriorated to the point where I had to stay with my parents for several months in order to recover and be fed.

Things are different now that I'm better and can pull my own weight, but I didn't ask much when I really needed it, and I would have settled for a hug once in a while, one or two meals a day, and a little understanding. I wish I could say that that's all your husband needs, since you know him better than I do.

Is he on prednisone by chance? That could certainly be the source of his mood changes, but having IBD can also stir up negative emotions.

I wish you all the best and hope that another person who has a partner with IBD can offer you more. But please, don't stop supporting him.

 

[bosto99]

Thank you for the kind words. I am sorry your wife was not supportive and there for you. That must have been really hard for you, you must have felt so alone. He has symptons like you, lasting days and I sometimes just cry because I can't make him better.

He is not on prednisone. I have heard steriods can cause moodiness, but he isn't on any.

We are in our 30s, no kids yet, and honestly I cannot imagine adding a kid to the mix right now. I would probably go over the edge taking care of two people! I sometimes wish I had a "normal" healthy husband who could eat anything, exercise, etc. I never tell him these feelings and I feel horrible writing them down here. But sometimes I just need to vent. If I were him I would probably be a complete nightmare. He does have days where he copes well, but other times I feel he takes his frustration out on me (emotionally). I honestly just stay away from him at times. He pushes me away. I do so much to help him, a simple thank you would be sufficient, I'm not asking for much in return. Don't get me wrong, he isn't a horrible guy, he is very sweet, but like everyone has his negative days.

 

[VeganOstomy]

Vent away! I can't imagine being on the "other side", watching my loved one suffer.

Don't take his anger personally. When you're as sick as he is, sometimes the desperation of wanting to feel better is just too much to bare. Gentle support goes a long way, but don't smother him. I hope he achieves remission soon, so you guys can get back to a more normal life. :hang:

 

[pink&green]

Hello bosto and :welcome: Being a spouse of a Crohnie can be very difficult but remember your love for one another is greater than any disease. There is lot's of support on here make sure you check out Spouses with Crohn's Support Group I will also pray for you and your hubby.

 

[jwfoise]

He has a fantastic gastroenterologist who specializes in Crohn’s.

You might want to talk with his gastroenterologist about it, either with or without your husband. There are therapists who specialize in dealing with issues between patients and their caregivers, and maybe he could recommend one in your area. There are also in-person support groups for caregivers. And of course, there is the support of this forum.

I think your vacation plan is a brilliant idea; you need to continue to take care of yourself. If I might ask, who is taking care of your husband while you are on vacation. Might that person help you out other times, so you can get some additional breaks?

 

[crohnsinct]

I am not a spouse of a Crohnie but a mom to one. Your love for your husband is evident throughout everything you are writing but it can be difficult with all the responsibilities falling on your shoulders. No doubt he is feeling equally as frustrated at not being able to help out.

It is VERY important to take care of yourself. Get a breather from time to time and definitely take that vacation. The healthier and happier you are the better you will be at taking care of him. I also think that some counseling is an excellent idea. Kids with the disease can be tough at times also. I just acknowledge to my daughter that yes the disease sucks and it isn't fair she has it but she does not get the right to treat others poorly. I know easier to do with a child than a spouse but really he has a right to be depressed and frustrated but no right to take it out on you and counseling can help here.

Has he had his vitamin levels checked. A deficiency in some vitamin levels (D comes to mind) can also play a part in some depression and fatigue. Might be worth discussing this with his GI as well.

Good luck! Your husband is a lucky man. I hope his luck with the disease turns around quickly.

 

[mish2575]

This will be the worst of it. My hubby was getting fed up with me when I was sick all the time in the beginning too. It may help you to read a bit on here and understand where he is coming from, how exhausted he feels, etc. Men are always extra cranky when they are sick, so I completely feel your pain.

It WILL get better. Once he comes to terms with it, learns to manage it and his medication kicks in you will get closer to normal. I think a vacation alone is a great idea (please just don't expect that he'll keep up the house while you're gone - know you will come home to a mess - get mentally prepared). You need to recharge your batteries. Caregivers have it tough too, especially to men (sorry men but in my experience it seems true).

You'll get through it. Most of us do. You will come out stronger in the end. He'll be so appreciative, when he is feeling better, that he had you there for him.

 

[durwardian]

I too would love to have somebody to help me through this. The appreciation is missing. He is lashing out it appears. "Better Boundaries" helped me a lot as a caregiver.
Switching roles helps too. One thing to consider, we call it Crohn's brain, is that he is struggling to just focus. He probably feels like you are babying him, and has become resentful of you for the situation. Counseling is in order. Resentment is a very ugly thing that can escalate out of control.
Stop doing everything, give him responsibilities that he can manage, fair trade for what you do for him, restore any pride he has left?

 

[bumblebee1031]

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