Hi Bongo, welcome to Healing Well!
I think I can offer a bit of a perspective on this. So you know where I'm coming from, I'm a 26 year old female with moderate to severe CD. I was married this last December (so 9 months ago today....whoops, happy 9 month anniversary to my husband...we both forgot, looks like). I was diagnosed two years ago this month, and I was not dating my current husband at the time. We didn't live together before our marriage and I spent most of 2011 (so our entire engagement) in complete remission.
Two months after we were married I got c. diff., which is a stomach bacteria. It caused a flare, which led to an abscess and eventually a fistula. My meds (Imuran and Mesalamine) caused acute pancreatitis, which led to needing Remicade infusions to replace the meds. My pancreas couldn't calm down and in the middle of us moving to another state so he could finish his senior year of mechanical engineering along with graduate classes, I was given a feeding tube for almost a month and was only able to get about
700 calories/day from it, leaving me pretty weak. From February to August of this year I was hospitalized 11 times.
With the flares, I've been on and off prednisone. Between that and the feeding tube, my weight has jumped around about
20 pounds back and forth. Since I'm only five feet tall, that's a big difference in looks! It also makes a huge difference in energy, and with the extreme pain that I've had with the CD, c. diff., and pancreatitis, it's been an adventurous year to say the least.
Anyway, while I can completely sympathize with your wife, I do also understand your perspective. I agree with you - she would feel better if she were to work on getting exercise. I know that for me, the times I feel good enough to go running is amazing. I hate it for the first few weeks, but then I can't go a day without it. Before I got sick, I used to run 6 miles a day. BUT I also know how difficult it can be. Right now, with just getting rid of the feeding tube a few weeks ago and barely able to eat, I couldn't even walk from my bedroom to the kitchen without having to sit down for 15 minutes to get my strength back again. I'd sleep on the bathroom floor sometimes because between the vomiting, diarrhea, and pain, I couldn't even get from bed to the bathroom fast enough.
I also know that I felt very hurt the past couple of months in regards to comments my husband would make. I spent a lot of 2011 on prednisone and put on quite a bit of weight (about
20 pounds, again, huge difference with how short I am) in addition to the moon face. I finally weaned off of it and felt good to run, and lost a lot for my wedding. But then going back on prednisone made me put it back on, and then the feeding tube made me lose more than I ever had since high school before puberty. My husband would tell me how fantastic I looked, which was nice but at the same time really, really hurt. I was afraid that he wouldn't be attracted to me anymore when I was able to start eating again. I knew I'd be back on prednisone (which I have been for three weeks now) and that my metabolism was so shot from eating so little that as soon as I could eat again, it would make me shoot up. And I was right - in the two weeks I've been eating, plus prednisone, I've put on about
10 pounds. I feel really insecure about
Luckily, though, my husband has been fantastic. It took a lot of courage to finally tell him how I felt each time he made comments about
how good I looked, and he was horrified that I had been feeling that way. I need a lot of reassurance that he still loves me and still finds me attractive.
Anyway, I'm really sorry, I'm not trying to make this all about
me at all. I don't know your wife, but I wonder if she's feeling some of these feelings. Also, even though I've started feeling better, I still get super worn out just trying to go to Walmart for 20 minutes to run an errand. The idea of trying to exercise like I used to makes me feel exhausted and hurt just thinking about
I am not saying this to say you're wrong in your ideas! But rather, I wonder if your approach is making it hard. I would reassure her that you love her, no matter what. I know you wish someone would have told you about
it when you were heavy, but girls are different than boys!
She needs reassurance. And very small, slow suggestions. Celebrate little accomplishments. My husband gets excited for me when I tell him that I was able to stand up long enough to wash dishes. It's such a simple thing, but to me it was a big deal that I could do that. Tomorrow I plan to try to walk around the block. So dumb, but it's all I can do, you know? If she's exhausted, and she really probably is, ask her what she thinks she can do....and then celebrate it with her. Go on a walk with her, or make a deal that you will do a chore that she needs while she goes on the walk herself (wash dishes, vacuum, help kids with homework, etc.). And maybe just every other day to start? Then build up from there. And cheer her on. I liked @kazbern's idea of cooking healthier meals for her. Maybe on Sundays make a week's worth of food so lunches aren't too hard with the kids?
And @datawraith's suggestion of getting blood levels checked is an excellent idea. My vitamin D levels get low, as do my iron levels. That makes it hard to have energy and feel positive. Even just a general supplement like One-A-Day might help.
Ok, I'm done rambling now, I'm sorry I just went on and on.
This just kind of hit home for me and I wanted to help. For what it's worth, I think it's wonderful that you came here to ask for help and that you care about
her that much. Please just make sure you tell her that and show it. I know every day I feel like failure as a person, like I'm dragging my husband down and ruining his life, and I'm terrified that he'll resent me for it. I need his reassurances more than ever, and I think your wife might too. But please let us know how things good! My thoughts and prayers will be with you and your family.
CD 2010, Fistula, Pancreatitis
Prednisone, Imuran, Asacol, and Remicade
"These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world." John 16:33