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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Married to potential Crohn's patient...who is too scared to get answers


03-27-2016, 09:03 PM   #1
soldierheart
 
Join Date: Mar 2016
Location: California
Married to potential Crohn's patient...who is too scared to get answers

I'm not sure if I should be posting this in Undiagnosed, in LGBT, or in the Partners/Caregivers subforum, so please forgive me if this is in the wrong place!

I am a 31-year-old woman who is married to a 27-year-old woman whose diseases are really affecting our life together. I try my best to research and be sympathetic and understanding, but I don't know what to do.

When we first started dating, it didn't seem like she had this many limitations. I knew that she had a history of physical issues, but it seems like she's rapidly been deteriorating over the past year or so.

To begin, she has POTS, which is a heart condition (officially diagnosed). Also, one doctor diagnosed her with fibromyalgia, another one said lupus, so there is some kind of autoimmune pain disorder in addition to her gastro issues. Her pain is really severe to a point where she has to take a lot of opiates daily, which I know doesn't help the gastro issues. I believe that she has likely has some form of Crohn's disease, though it's more troubles with constipation and severe nausea than diarrhea. She's lost 40 pounds since we've been together. She had to go to the hospital for an impaction about a year ago. She barely eats anything.

She spends literally hours and hours in the bathroom. Then she gets so tired that she ends up falling asleep in there, and more hours go by. I feel really lonely. There are times when she can be functional and we might go out to dinner or talk for several hours, but more frequently, she's just stuck in the bathroom. I feel really lonely a lot of the time. It seems like every couple our age is having tons of fun and doing all kinds of stuff, and that's not the life we have. I'm not even that outgoing, but I just really miss her.

The major problem is that it's very hard for me to address her medical issues with her. Last year, she had a bunch of bloodwork done and tests run, but she stopped short of actually seeing a gastroenterologist. From what she's told me, she's had bathroom issues since childhood. Unfortunately, her mom is bipolar and created a lot of shame about this, so she gets EXTREMELY embarrassed talking about it. She gets defensive and tells me that it's her body and I need to respect her decisions about when to get answers (or not, I guess).

I myself have a lot of anxiety disorders, so I just take things really personally and feel so rejected by her so often. If I say something, she gets her feelings hurt and tells me things like, "Do you think I like being in the bathroom for hours? Do you think this is fun for me?" I don't think she's like faking it or something like that, but I just don't know what's stopping her from getting treatment.

I get my heart broken time and time again because she'll tell me that she'll be out in "10 minutes" and then we can go do something (dinner, movie, whatever). It's always hours, if it even happens at all. On some days, I literally won't see her at all! (We do have somewhat of an opposite work schedule--her schedule is very erratic--but still.) This past weekend, I think I've spent maybe 30 minutes with her the entire two days.

I just miss her. I don't know what to do. I've tried talking to her about this in every way possible, but I can't make her go to the doctor.

Not sure what the point of my rant was, but I appreciate you guys listening.
03-28-2016, 10:04 AM   #2
scottsma
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Join Date: Jan 2012
Location: Tynemouth, United Kingdom

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I'm so sorry for what you're both going through.I can't give you answers,maybe someone will answer your post who's been in a similar situation.
What I will say is that it may be her body,but it is definitely not normal to spend so much time in the bathroom.Us crohnies do spend a lot of time in there on occasion though.
Embarrassment can be the downfall of those with digestive problems,but the medical profession have seen it all before,and embarrassment is fleeting.I really hope she sees sense soon.Maybe you could read some forum threads together,and see what happens.Best wishes to you both.
05-06-2016, 09:06 PM   #3
Izzie
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Join Date: Mar 2015

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I know this was posted a while ago but I thought I'd add my two cents and check in how things are going with you!

scottsma is right, it's definitely not "normal" to spend that much time in the bathroom, it's definitely an indicator that something is wrong.

Do you think there's any way you could reassure your wife that she doesn't need to be embarrassed by this? Medical professionals have seen and heard it all, and as her partner I'm sure you just want her to be well regardless of whether the problem is "embarrassing" or not!

She's right that it's her body and her choice, but she shouldn't have to suffer like she is especially not when there might be treatments she could get which would make her healthier. Opiates definitely can cause bathroom issues, especially constipation from what I've heard so that's probably worth bringing up with a doctor.

Many people struggle with these illnesses, it's not a personal failure that she should feel ashamed of in any way. She deserves to get help so that both of your quality of life can improve!

I hope you both can find a solution!
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