Confused and exausted wife of chrons spouse.

In 11/10 my husband went to the hospital for a perianal abscess. Prior to that he had been suffering from undiagnosed "IBS" for about 10 years. While in the hospital he contracted "c-diff", a hospital infection similar to staff. In the process of all this, the dr found that he had an acute outbreak of diverticulitis, He went through many rounds of antibiotics, but nothing would kill the infection, so the DR decided to take out a section of his large colon that was infected. The surgery seemed to go fine, but only 3 days later he was back in the hospital with septic shock, the connections had ruptured, He had an emergency ostomy created, with the assumption that it could be reversed. We are a family of 5; we have 3 kids we adopted from foster care 5 years ago when they were 5, 6, and 7 years old. My husband is 37yo, and I am a 40 year old grade school teacher. There have been many complications sense; hernias, scar tissue, fistulas,illiostomy, and an all-but-certain diagnoses of Chrons disease. In November of this year it will have been 2 years we have been trying to cope with this. Our family is beginning to fall apart. My spouse is so angry. He is very selfish and for the past 2 or more years has not participated in our family as a spouse or father on a regular basis. Whenever I try and talk wit him about it, he counts the days since he has had his bag as the only needed explanation of his complete selfishness. Me and the kids are SUFFERING! I know he is too...but I keep getting this feeling that he sees our pain and suffering as completely insignificant compared to his. The reversal was supposed to happen time after time, and then a new delay. I CANNOT live with someone who believes that have a monopoly on pain, and a free ticket to be so selfish. In the past year he has gone from no tattoos to both arms, back, and chest covered. He has pierced his ears, and even branded himself due to the physical and emotional pain caused by this illness. He now goes out 1-3 times a week drinking and dancing and comes home at 2-3 AM. I want the pleasure of going out with him, I have to find care for our kids. I am going into a very intense year of teaching (4th grade), where, in order to keep my jpb, I will need to be able to obtain a higher certification that will be another 1/2 time job on top of the already incredibility demanding work on a state school teacher. My spouses' level of emotional and financial responsibility (he has not worked in over 10 years) in this family will have to not only increase, but exceed what it ever has been before, regardless of whether the bag comes off (hopefully in Oct). Our marriage has been under a lot of stress, and i am confused! He accuses me of not understanding the severity of the situation. He asks me to just wait...."when the reversal is over I will be the best dad and spouse ever!) But what if it never comes off? How many more years of this intense anger, sadness, depression, and lack of support go on? I need help from other spouses and sufferers...Am I expecting too much? Is anyone feeling the same way? I am going crazy here...

Has his diagnosis of crohns confirmed with biopsy/serology..what treatment he is on for this..thanks

Hello
I'm sorry to hear you are going through a really tough time at the moment it must be very hard for you. I have crohns disease and have been with my boyfriend since the begining of the disease and he has done so much for me I really appreciate him and everything he has done.
It sounds like your husband really needs to speak to someone as from what you have put it sounds like his mental health isn't great not surprising with all the health issues. Have yu spoken to him before about maybe getting counselling or going to a support group to talk about what has happened to him? I am only judging by what you have put but it does sound like he is being selfish if he has the energy to go out drinking and dancing untill 2-3am I think he should put the same effort into his family and I can understand why you are feeling the way you do.
I really think he needs to speak to someone, I had depression and was in complete denial and I hurt the people closest to me but they stuck by me and I got put on antidepressants and with all the support my mental health is a lot better.
I really hope he can get some help so you can all benefit from it and enjoy being a family again x

Forgot to ask why has it been so long since he has been out of work? I can understand the more recent health problems but that seems like a very long time.

Wait, wait, wait. He can go out drinking and dancing but can't be a dad/husband properly. Something wrong there. With everything as you say it is, you deserve better.

So what happens if the bag were to be permanent? That's freaking life, you get what you get and you make the best from that.

Now beyond that, which is my own gut feeling reaction, it does sound like he has some significant emotional issues atm, such as maybe depression or who knows. Has he been seeing a councillor? It doesn't seem he's been dealing well.

Nathan

Hi there and welcome,

It seems two things are very necessary based upon what you're saying:

1. Counseling. For him and the two of you as a couple.
2. A comprehensive vitamin panel to be done. Some of the vitamin deficiencies that Crohn's Disease can cause can lead to major emotional changes in people if not correctly dealt with.

I'm so sorry you're all having to go through so much and hope things improve soon.

*hugs*

WOW!
I am not sure how to answer clarifying questions separately... Thanks everyone for your words. I never expected to get so much so quick. khurram333 --His Chrons was diagnosed with serum, but strange, did not confirm with physical exam (no swelling of intestinal wall). So the Dr's are unsure, but can't imagine why he would have the antibodies and not the disease.

KayleighMeek - He hasn't worked in 10 years b/c of IBS issues.

He was in Counseling at the beginning, says it made a huge difference. (and he did make some progress) I am in counseling now alone, but he does not feel a counselor can do anything else for him. he is on antidepressants and anti-anxiety, which began before the acute health problems...anger has always been an issue for him.

I am glad to get some feedback, I feel the same as all of you--mental issues, personal choices..etc. Now that I have some people agreeing with me though, I have no idea where to go. He is so closed to hearing anything negative about himself. he thinks (says) that he is "just surviving" and he shouldn't have to explain himself again, b/c...he's "had a bag for 515 days...." he actually acts incredibly conceited..which is so weird. I can only assume that it is a cover up for intense low self-esteem and pain. But he is always bragging about how everyone (acquaintances and strangers) thinks he is so cool and sexy (he is an incredible dancer...).

What this comes down to for me is that he refuses to begin to live a regular life until the bag is off. So he, and we (the family) are perpetually waiting, waiting waiting to get a life back. he won't consider the chance that the bag will not come off, so suggesting it, and a back-up plan, is a non-starter. He has convinced himself that he is incredible for surviving what he has, and everyone should "be glad he is just here." Sometimes I think of calling his doctor and filling him in on my hubby's mental state. He won't listen to me, and his immediate family is totally worthless when it comes to emotional support (they only call every few months). B/c he hasn't worked in so long and did not go out until the past year, he also has no friends (just bar and tattoo shop friends), so he respects and trusts no one.

Thanks again, even just knowing that I am not crazy, or a horrible, insensitive wife feels affirming. Even if nothing can me done RIGHT NOW, I am thankful to know that I have someone to talk to.

Welcome to the forum, and I'm sorry to hear about all that you're going through!

Mostly, I just want to show some support and back up what everyone else has said. Also, I think you would be justified in telling his doctor about his emotional problems, as these can aggravate his physical problems and thus complicate his disease and treatment. I'd also mention to the doctor that he's sensitive about it, and let him know if you don't feel comfortable with your husband knowing you spoke with him (which sounds somewhat bad, but I'm sure you know what I mean - if he knows you brought it up, he might shut down to anything the doctor says).

I'm sure he has gone through a lot with his health, and it's logical that it has had an affect on him. However, it's no excuse to put you and your children through this.

Maybe it would help him to find other people with similar issues? I know this forum, and just knowing there are people you can talk to who understand, can really help. Crohnology.com also offers that - and allows you to find other IBD sufferers nearby and set up meet-ups with them. I don't know if he would be opposed to something like that or not, but I figure it's worth mentioning.

Hope things get better for you soon!!

His behavior is not caused by the Crohn's. Honestly, he sounds bipolar. Depression, not working, getting tattoos/piercings, drinking, selfishness. He needs to see psychiatrist. I'm sorry you're dealing with that. Unmedicated bipolar patients are not really fun to live with. Just ask my husband. :/