How do your partners deal with your illness?

I am the wife of a long-term Crohn's patient, and I just don't know where to begin. We've been married five years, and he has lived with CD for 32 years. He was completely upfront and honest about his disease, but I was very naive and didn't bother doing the research. I was Superwoman - working a full-time job, going to college at night and taking care of my son as a single mom. I was invincible. I knew I could handle anything. Six months after we were married, we made several trips to the ER for abdominal pain. Five months later, he finally had to have an ileum resection. We lived a great life for the next seven months until he started having abdominal problems again. Five months after that, our gastro doctor finally determined that he had been nicked on his colon during the original surgery. It took 3 or 4 ER trips and two more surgeries to get him "straightened out". He lived for three years with no symptoms while taking Questran and Lexapro. That being said, this has been the most trying experience of my life but one that I would not take away. I took too many things in life for granted. I love my husband dearly, and I treasure all the good times we have together. There are not as many as I thought there would be, but they are great nevertheless. The toughest thing for me to deal with is when he has to take Prednisone. That drug changes his entire personality and not in a good way. He takes an antidepressant and an anti-anxiety drug to counteract the mood swings. He knows this though, and he always tries to make up for his moodiness.

We are limited at times in choosing where to travel, and I always have to make sure there will be an available restroom wherever we go. But it's not a huge issue for us because we usually drive to wherever we go for vacation, and we stay in a condo, cabin, hotel, etc. We travel as a family (hubby, me, son and daughter) and are used to making pit stops at regular intervals. It's just another part of life for us.

Now to the positive! I was a workaholic until I met my husband. I lost my mom to cancer at 55 six months before I met my husband, and I threw myself into work and school when my son was not at home. I had no life and was in serious danger of heading down a bad path of self-destruction. After meeting my husband, I began attending church again, and I started focusing more on my son. I took a part-time job and quit working full-time so I could be with my son in the afternoons. I graduated from college six months after I was married. That was during one of my husband's "good times", and he was able to stop taking Prednisone for a while. Even though the doctors all thought that my husband could never have children, I became pregnant eight months after we married - yes, that part of our life is just fine - more spontaneously actually since we can't make "plans"! :) We have a beautiful girl now, and I quit working to stay home with her. I have my own business now and work from home, and I am able to take care of all of my family without worrying about losing my job. And I'm helping to provide income for our family. Life is tough at times, but life is also very good!

Hang in there! You and your husband are going through one of the tougher times right now. It is difficult, but try as hard as you can to focus on your long-term relationship and look forward to the good times that are coming. My thoughts and prayers will be with you.

We make the most of our life everyday now after being diagnosed with crohn's. It has given me a new appreciation of everything. There are days when things are bad, but the days when things are good, they are really good. We travel as often as possible. I do admit, I don't run around with friends as much. As far as work, I now work from home, which ended up being better for everyone in my family. Sex life is wonderful, adjustments, but that's okay. Make the most of the good and not worry about the other. I do take something for depression, I feel no embarrassment in that, it's what I need and makes me enjoy life even more. Some people don't understand this disease but it's not the end of our lifes, just a beginning of a different way of living it.

Julie, I'm so sorry that your husband abandoned you when you probably needed him most. That thought has not crossed my mind - I do realize that everybody in life will go through suffering - some of us earlier in life than others, but there is no escaping suffering or death. This much I do understand. If I run away from my husband now, I'll only be postponing the inevitable at best, and at worst, resigning myself to a lifetime of loneliness (how can you trust yourself to enter another relationship, knowing that you didn't have the strength to survive the tough times previously?)

My husband seems to have a renewed vigour for life - he enjoys each day, and is happy to see the sunshine, and the blue sky, and our cat stretching lazily in the sunlight. I however, have not arrived at that point yet. My mind is still churning over all the possible scenarios, etc. Every time I see someone else, whether it's on TV or real life - what I notice most is that these people are probably not suffering from a chronic illness like crohn's (which I know is crazy).

My husband is doing better - he's still eating a very limited diet, but his bowel movements are getting better slowly, and he is not in any pain. However, I keep thinking, ok, what's going to happen when he tries to taper the pred, is the c-diff going to recur when the antibiotics are stopped, is he going to regain the movement in his left foot? I also keep thinking, ok, even if we get past all the above, what's next - when is his next flare coming? My other worry - he's on remicade now, what's next after that - it seems we're using the really big guns already - what do we do if it stops working? And to cap it all off, I'm worried about the side effects of remicade - psoriasis, lupus, lymphoma, etc. What about complications of illness itself - fistulas, abcess, . . . I just hate all of these thoughts. If I could just successfully tell myself that the present is what matters, and the future will reveal itself later, and to worry about it then, I'd be on the path to getting more happy.

I love my husband - I just don't know how to deal with all my anxiety. The therapist I called is not taking on new patients. I guess I'll hunt around for another therapist, and maybe some meds may help as well (though I want to keep this option as a last resort). I actually made it into work before 10 am, and I've actually concentrated on work a little. I am trying to be supportive of my husband, and trying to accept that our lives are going to be disrupted a little by crohn's, but I'm hopeful that he'll have a mild disease course, with few flare ups, and no surgeries. But if all my fears come true, I am hopeful that I'll have the strength of character and love to stand by my husband, and support him, and make sure he knows that I will always be grateful to have him in my life.

I love you guys. Thank you so much for all your insight. I think I'm slowly getting better, and I'm slowly learning to accept his disease. You've been so good to me - I've decided to read this board every day, and provide what support I can to folks here based on my experiences with this disease with my husband. I hope all of you have a good, pain free, and healthy day.