Crohn's Disease Forum » Your Story » Helpless spouse

02-18-2017, 09:11 PM   #1
Join Date: Feb 2017
Location: Campbell, California
Helpless spouse

Hello all,

New to this forum, and feeling like I really need to talk about our experience with this.

I met my husband four years ago in the UK. While we were dating, he started getting these terrible stomach aches - he went to a doctor in the UK and was told he had IBS. They packed him off to get some over the counter medicines which helped only a little. Skip forward a few years, and we both moved to the US and married. His "stomach aches" got worse and worse, but he refused to see a doctor. Only when the blood in his stool and some other details (which I'm sure you're all familiar with, but I wont go into) made him so terrified, did he finally seek proper help, and was diagnosed with Crohn's last Summer, after we'd been married for 6 months.

It was almost a relief to find out what he had, so he could start the medication. We both thought his intense fatigue was just him be lazy, almost funny to look back on.

Now, 9 months after his diagnosis, he's feeling a little better - less blood, less fatigue, but still a daily struggle. His back pain seems to be pretty awful and he's like an old man getting out of bed (he's only 31). He's currently taking Lialda and Uceris, which worked great at first, but now the symptoms seem to be getting progressively worse again. We visited the doctor this Thursday, and the doctor suggested upgrading to Humira and Azathioprine - which seem pretty scary as the doctor mentioned once he was on those, he'd never be able to come off them (well, never be able to restart them once he'd come off them). As a alternative step, the doctor suggested Prednisolone instead, as a less "ultimate" treatment (coupled with my husband stopping smoking).

This all feels like it's putting huge stress on our fairly new marriage. I moved to the US to be with my husband, so all my friends and family are back in the UK - I feel really isolated in dealing with this, and don't have much of a support network here in the US at the moment. I feel guilty for feeling like I need support, as my husband is the one who really has to deal with all this, and I'm not the one that's sick. It sucks that everyone I'm close to is on a completely different time-zone, so I can't just pick up the phone/Skype as it's 3am back home. My husband's family are fantastic and here in the US, and I often think I should talk to them, but I don't want to make my husband angry that I'm talking about him to them.

I try my best to be supportive, with the housework etc, but I feel that's kinda pathetic and I feel so hopeless that I can't "fix" him. I've tried changing diets for him with my cooking - paleo, no dairy, no wheat - but he gets annoyed and wants burgers and pizzas and ice cream, and then I feel like I'm policing him and I'm worried that he'll resent me for making him change, and then we go back to regular eating. I've tried to get him to stop smoking, but again I feel like I'm nagging him - I'm his wife, not his mother, and I don't want him to resent me for forcing him to make changes.

My husband seems almost in denial about his Crohns - he doesn't read up on it, doesn't make lifestyle changes to help it, doesn't talk to anyone about it, doesn't like me telling anyone that he has it. I deal with things completely differently - reading forums, speaking to people, learning about management - but he hates that I do this, and hates me talking about it.
His moods are bad at the moment, and it's impossible for me to know what's a result of his symptoms, what's a result of his medication, or whether he actually just finds me irritating and wishes I would go away. I feel so alone, and so helpless, and I hate having to walk on eggshells all the time. I want to talk to him about it, but if I pick the wrong moment, it just turns into an argument.

I love my husband so so much, and it's been heartbreaking to watch him change from an active, bubbly, bouncing bean of joy, to his current state. I'm terrified that our marriage can't make it through this, and that we'll end up hating each other. I'm worried that giving up smoking and the new round of drugs is going to come with their own host of personality changing effects. I guess I just want my husband back, and I want him to be happy.

Wow, this was a bigger ramble than I'd intended, and sounds thoroughly miserable - I wish I could be more positive. I've been looking for good news stories, where people get better or learn to manage and have a normal life, but those stories are pretty slim pickings. I don't know what I'm expecting as a response, but I guess it's good just to get that off my chest and be heard by people who understand. Thanks for listening.
02-18-2017, 09:32 PM   #2
Hypocrohniac's Avatar
Join Date: Feb 2017
Hello muffin101!
People with good news stories are certainly around, and yours will be a happy story too. It is such a huge illness, both mentally and physically, so the denial stage can be really really long, and then re-visited often.
You are wonderful for caring enough to seek help here. The support you will find will lift your spirits.
I'd write more, but I wanted to quickly reply so that you would know that we are here for you.
02-18-2017, 09:56 PM   #3
Senior Member
Justanothercp's Avatar
Join Date: Aug 2013
Location: Sacramento

My Support Groups:
I feel for you. This disease can be very difficult on a marriage, particularly when it is new and/or not being managed well. As with a lot of things in a marriage, it can effect you greatly and you have little to no control over his disease or how he chooses to manage it.
I am the one with crohns and it came very close to ending my marriage.
I don't think there is much you can do other than be supportive. He has to decide to manage it and understand it, you can't do it for him.
From his point of view, he probably feels terribly guilty for being ill and not being who you or he wants to be. He is probably very scared. It took me years to accept my diagnosis and all that comes with managing it responsibly. And it is a daily presence.
Wishing you well.
02-18-2017, 09:59 PM   #4
GI Jane
Senior Member
GI Jane's Avatar
Join Date: Jan 2017
Location: Yakima, Washington

My Support Groups:
When faced with diseases, you go through the stages of death. It sounds like he is in the first stage of denial. Men especially do not want to seem vulnerable and this disease does this to people.

You should talk to his family. They can give you support and maybe get through to him. Until he comes to term with this illness he won't get better.

With diet I was able to go into remission for a few years. You get the roller coaster through the years getting better only a few issues then wham. It hard mentally and physically.

Having a young marriage is hard. I have been married over 16 years and I tried to push my husband away to have a "better" life. He stood by me. We talk and that's what helps we get upset we hug.

My thoughts and prayers are with you.
02-18-2017, 11:20 PM   #5
Join Date: Feb 2017
Location: Campbell, California
Thank you all so much - I feel so much better for just getting that off my chest, and for hearing that yes, this can put a strain on marriage BUT you can work through it.

I'm still trying to figure out what being "supportive" means in this case. Just being there if he wants to talk, acknowledging he sometimes feels rough and helping round the house, doesn't feel like enough to me. But then going full hog into dictating diet changes and supplement routines feels like it wouldn't be welcome right now.

I think I'll wait a week or so, and see if his doctor's conversation drives some change on the smoking piece (at least that's one thing that has proven clinical links with exacerbating symptoms). If he's still not working on it, I think it warrants a "wtf" conversation, as I really care about him and it's really important to me that we do everything we can do help. If he does great with the giving up smoking, perhaps then I can suggest "let's try diet and supplements, it can't hurt".

Thank you all - I feel like I have a plan, and people I can reach out to now. I really can't tell you how much that means.
02-18-2017, 11:30 PM   #6
Join Date: Feb 2017
Location: Campbell, California
And yes, I think/know he feels scared, frustrated, vulnerable, emasculated (because, of course, we're taught that men don't talk about their poo, or have doctors put things in their butt, or admit to feeling scared). It's good to know that it's common for denial/grieving to take time and reminds me to keep being patient - when he's ready, he'll be more comfortable talking about it and be more keen to manage it as much as possible through lifestyle choices.

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