Newly diagnosed, husband whining about HIS needs

[kat2032]

Hi, I'm new here and hope I'm posting this right!

My name's Kate, I'm 30 and I was diagnosed with Crohn's a month ago. I've had symptoms for years that have been getting progressively worse until my doctor finally shipped me off to a GI, who diagnosed Crohn's. He prescribed Pentasa, but I can't afford it, even with insurance, so I've not filled the prescription. I'm just sort of in limbo while I try to figure out what the heck to do and I'm feeling spectacularly cruddy.

To make matters worse, my husband is leaving the care of our 5-year-old twins up to me while he slacks of and is whining that he isn't "getting any!" How in blazes am I supposed to get it through his thick skull that I feel horrible and don't WANT TO? Has anyone any advice here? He seems to think I just have "cramps and the runs" and should be able to scurry to the bathroom and then hop in the sack! I try to tell him I never feel well, I always feel nausea, aches, bloated and when I've gotta go -- get out of the way -- but it doesn't seem to register.

I'm frustrated enough that I can't afford the medication, but this is just making me so much more so and I don't know what to do. I think he's being ridiculous. Has anyone dealt with a husband (or wife) who thought a Crohn's flare wasn't a "good enough reason" to not have intimate relations? I could really use some help ... or support ... anything's better than what I get from him. This morning was so bad my girls almost missed the bus because I couldn't tear myself out of the bathroom. And tonight, he moaned about his lack of sex life. I'm surprised I have hair left.

Any help would be appreciated!

-Kate

 

[Cross-stitch gal]

Just wanted to say hi and welcome to the forum.

Unfortunately, I don't have any advice for you. But, there are many wonderful people here to talk to. Have you been able to talk with your doctor about not being able to fill your prescription? Sometimes they may have suggestions or ideas as to other ways to be able to help you. I do know how expensive things can get. Hopefully things will start calming down for you soon. In the meantime, am sending you some hugs. :hug: Take care.

 

[CeeCeeGo]

Hello Kate
Welcome and I have really benefited from this forum - it is full of great people who have good advice and are very supportive.
There is a women's only sub-forum under this group - OB/GYN - if you feel like sharing.
Remember to look after yourself and try not to deal with too many things at the same time.
Take care.
Carol

 

[Susan2]

:welcome: Kate.

I don't know much about the current meds, and I don't know where you are located, but there are some forms of help available for Crohn's patients who cannot afford the meds that they have been prescribed. Perhaps a question in the 5-ASA/Mesalamine sub-forum in the Treatment section HERE might bring out some useful information.

 

[kat2032]

Thanks for the replies. It gets particularly bad when he's been drinking and not going to work for a few days, so I guess I needed a place to vent too! As for the prescription, I looked into the manufacturer's assistance, but it didn't look like I qualified for help from them. I DO have insurance, which covers more than half the cost. But the leftover, $260 a month, is beyond my means. I'm already paying more than I make. If there are assistance programs for the remainder, I'd love to learn about those. I have a sulfa allergy, so my doctor said there isn't anything else I can take, apparently? I'm trusting him, he's been good to me so far. He diagnosed me in a few months. He's the first to notice I had a high C reaction protein, incredibly low potassium, low vitamin D and a few other really high blood readings. With the potassium, he actually called every number they had on file for me personally as soon as he saw it and told me I had to mix x-y-z together and drink it and get supplements the next morning. I've never had a doctor move so fast!

Again, thanks for the responses.

OH, and I don't know if anyone else also has this, but I was diagnosed a year ago with pseudotumor cerebri. I've suffered from migraines for YEARS and vision changes finally brought me to an ophthalmologist who noticed optic nerve swelling and after a spinal tap they diagnosed THAT. Fun times! But at least I have answers. I take 100 mg a day of topamax for that, we tried something else, but it was wreaking havoc with the potassium so I had to stop it.

-Kate