New member, spouse of patient

[Rocket12345]

Hi, I'm new. My wife has had IBS/Crohns for almost 20yrs and we've been together for 11 of them. The downtimes are getting harder, maybe the hardest they've ever been. I work full time, go to school full time, commute and mentor and discipline our teenager daughter for nearly everything and take care of most of the house and the yard and the bills. In her absence I have to do it all. It's like being a single parent and an adult caretaker while bound to sexless vows. I can't even begin to explain how hard it is constantly hearing the puking and heaving sounds, the buckets everywhere, the constant need to watch fevers and liquids. I joined because I feel like I am at a breaking point and even though I can do a Hellman of a lot of this and have for a long time, I'm just empty and severely depressed. I can't talk to her about it because it makes her feel guilty. It makes her feel like she needs to speed up recovery, which lengthens it because of stress. I am 35 and I feel like I am damn near death some days. My health has declined, I'm extremely overweight now because all I can do to cope is stay home, and by her side, and tend to everything she needs constantly. There are no breaks. Everyday it's a question of are we going to the ER today.

Somebody please tell me something positive.

 

[ronroush7]

Welcome to the forum. There are other spouses of people with Crohns or IBD on here. I am going to tag Madhu.

 

[Pilgrim]

That's very hard, I'm sorry.
What type of treatment is your wife on?

 

[MizzSarah]

First off all let me just say that your wife is extremely lucky to have such a supportive partner in life. My father has had Crohn's for many years now and my mother has experienced the ups and downs of the disease through him. When they married there was not nearly enough info about it so it was difficult. My mom had to be the breadwinner and often like yourself the disciplinarian of us kids. She worked two jobs to bring additional income when my dad couldn't work. She was selfless just as you are She had a difficult time separating herself as a role of wife and herself as an individual that I really do encourage you to--step aside weekly to do what brings you joy. Don't let guilt drive you from taking care of yourself as well.

I have been diagnosed with Crohn's 2 years ago so now my mother is--doing a double take.


Be kind to yourself

 

[Rocket12345]

That's very hard, I'm sorry.
What type of treatment is your wife on?

Thanks for commenting. She's currently being put through a blast of steroids, mixed with pain pills, and autoimmune suppressant pills. Ant do remicade--about kills her and doesn't agree with her body. We're also gluten free and try to be vegan 2-3 xs/wk. She's dealt with this for 20yrs... we've tried everything. Including acupuncture alternative therapy and homeopathy.

 

[Rocket12345]

First off all let me just say that your wife is extremely lucky to have such a supportive partner in life. My father has had Crohn's for many years now and my mother has experienced the ups and downs of the disease through him. When they married there was not nearly enough info about it so it was difficult. My mom had to be the breadwinner and often like yourself the disciplinarian of us kids. She worked two jobs to bring additional income when my dad couldn't work. She was selfless just as you are She had a difficult time separating herself as a role of wife and herself as an individual that I really do encourage you to--step aside weekly to do what brings you joy. Don't let guilt drive you from taking care of yourself as well.

I have been diagnosed with Crohn's 2 years ago so now my mother is--doing a double take.

Be kind to yourself

Sorry to hear about your diagnosis. With all the research they should have been able to find a genetic link by now. My wife and her brother both have it. Both were healthy and they they both got sick after a bunch of injections in the military. They found out others in the famil have it too.

Thank you for the uplifting words and advice. I decided TODAY, seriously a few hours ago, that I was going to start spending a few hrs on me every week and go from there. Kudos to your mom. It's so hard being a single parent in a marriage. Unbelievably hard.

 

[MizzSarah]

I'm glad to hear that! Spending time on ourselves is the only control we have with all these hardships around

Sorry to hear about your diagnosis. With all the research they should have been able to find a genetic link by now. My wife and her brother both have it. Both were healthy and they they both got sick after a bunch of injections in the military. They found out others in the famil have it too.

Thank you for the uplifting words and advice. I decided TODAY, seriously a few hours ago, that I was going to start spending a few hrs on me every week and go from there. Kudos to your mom. It's so hard being a single parent in a marriage. Unbelievably hard.