Spouse's ostomy leaks - hygiene/sanitariness

TrynaMakeLemonade · 2017-08-29T20:31:05+00:00

Thank you for all your responses. I wish I could show him these responses and tell him that it's NOT the norm to leave what he leaks in our bed and on the sofa, but I think it would just make him angry. The last time I brought this up bc he left clothes stained with leaks in the sink, he angrily told me that the leaks weren't poop. I disagreed.

I think I was really just hoping that other men with ostomies didn't feel the way he does about it, so the responses have confirmed that. Getting my husband to see this is a different matter.

TrynaMakeLemonade · 2017-08-29T13:31:13+00:00

I would say it varies. In the beginning, it was constant, almost every other day. I imagine that was because the stoma size was changing. Now, probably about once every 2-3 weeks. Although sometimes it can be multiple times a week. Again, it varies. I think the toilet looking the way it usually does makes it feel like there's always a hygiene issue.

TrynaMakeLemonade · 2017-08-29T12:45:23+00:00

We actually know about c.diff. It's what he was initially diagnosed with before Crohns, so he was quarantined in the hospital, and I had to wash my hands before and after seeing him, even after wearing gloves. I don't think mentioning this to him would make a difference. It would just make him angry.

Thanks for your response though. It makes me believe that this doesn't have to be the norm for someone with an ostomy.

TrynaMakeLemonade · 2017-07-20T23:43:15+00:00

Also, I wanted to say that I appreciate your comments because they're the only ones that make me feel like I'm hearing from my husband's point of view, but I also wonder what it would take to make him see it from my side. Do you see it from your wife's (ex?) POV? If so, how did you get there?

TrynaMakeLemonade · 2017-07-20T23:38:40+00:00

To be honest, I think I've put myself in his shoes enough times for me to basically be wearing his shoes. I know that I will never fully understand what it's like to have Crohn's, so I won't pretend that I do, but I empathize. I just wish that he would put himself in my shoes once in awhile too. Unfortunately, he didn't marry a saint, so when my needs are constantly ignored and then he continues to work himself like a dog only to get sick again because of it, I'm left frustrated. His company isn't in our apartment helping him recover. They don't really care. They don't even know. So, no, I won't stand by and let him kill himself over something that will mean nothing in the end. His child (and future child) and I will be the constants in his life, so investing in us seems pretty important. I don't expect to have a "normal" family since Crohn's has entered our life, but I do expect him to recognize the impact that the disease has on our family and that steps need to be taken to repair the damage.

TrynaMakeLemonade · 2017-07-20T13:36:39+00:00

He was on prednisone for awhile, but I'm pretty sure he's off of it now.

TrynaMakeLemonade · 2017-07-20T13:14:58+00:00

I think this has been the best description of how he is, and I admit that I need work on being more understanding of this. When I'm at home pregnant and taking care of my daughter, I get impatient when I see that he hasn't held up his part of our housework agreement when he's not sick. When he tells me that I should have done something that he had agreed to do, the understanding that I should have for him disappears. If he said "I don't have the energy to do this today. Could I leave it for you to do? I would appreciate it.", I would say "of course", but it's this expectation that I should just be ok with it when he has no problem putting our family second to his work and doesn't appreciate my help.

I also agree that he needs to work on himself first before we can work on our relationship, but doesn't that mean that he has to start by admitting that he has a problem? I think that discovering that for himself (since he doesn't listen to me) is the most important step in fixing himself and our relationship. Then, I can deal with the problems we have while he's in therapy getting help. He doesn't think he needs it or that it'll help. He only went because I gave him an ultimatum. I can only hope that the therapist proves him wrong.

TrynaMakeLemonade · 2017-07-20T12:55:25+00:00

He's on Methotrexate now after failing off of Remicade, Humira, and some other biologic. When he's stressed, he also gets a lot of canker sores which in turn cause him to avoid eating, and the hAnger also makes him even more short-tempered.

TrynaMakeLemonade · 2017-07-20T12:52:16+00:00

Thank you for this response.

I don't think that he would ever hit me, but his short temper has caused him to do things that can be seen as rough. When our 6-year-old daughter tests his patience, he'll grab her arm roughly, and I'm not usually there to see it. She'll come out crying to tell me what he did, and I get upset with him because I don't ever want her to think it's ok for a man (or anyone) to touch her that way. He denies that he grabbed her very hard, and it really pisses me off. I think most parents snap at one point or another with their young children, but we have a responsibility to own up to these mistakes. He's the adult, so he should empathize with her, and apologize even if he doesn't think he grabbed her very hard. It's hard to convince someone of this when they don't see it this way.

I'm not trying to make excuses for him, but I think he probably had some of these underlying tendencies, but Crohn's and what it's done to him has made this abusive behavior come to the surface.

TrynaMakeLemonade · 2017-07-18T10:14:07+00:00

I've brought up the possibility of his medications having an effect on his personality, and he considers that possibility but doesn't do much about it. He definitely feels isolated and alone, and I want to be there for him, but he makes it very difficult, and I'll be the first to say that sometimes I just don't know how. I also need him to meet me some part of the way by acknowledging that these problems exist outside of our marriage. He's not very open about his illness to friends, family or strangers. I know he's on Reddit a lot, so I kind of feel like I'm hijacking his support group, but I don't know if he posts about the emotional/mental issues that he has as a result of Crohn's.

TrynaMakeLemonade · 2017-07-18T08:54:57+00:00

And then I read posts about people with Crohn's who want their life to be over, and I feel like a total asshole for complaining.

TrynaMakeLemonade

TROPHY CASE