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Living with A Chronic IBD Spouse

By November 11, 2013 - 1:10pm

My fiance was diagnosed with ulcerative colitis a year ago. His condition is an autoimmune IBD which has not been managed well on the variety of medicines he has been put on. He has significant weight loss (180 to 135lbs) and in the past year has only had a 4 week period where he was not experiencing a flare. He suffers from intense pain, urgency, sleep deprivation, dehydration, etc, and have had to go to the hospital as well to get his symptoms under control.
We have been together for six years, and he is the love of my life. Our relationship has definitely changed over the years and especially in the past year, and we are still figuring out how to best manage his condition together. In some ways, our communication is better, but in other ways our relationship is worse. Our intimacy has definitely decreased, not only in the bedroom but in regards to other "couple-y" activities. Some days he is afraid to leave the house and stays home from work because of his flares, and those days are the hardest. Like many other posters, I have felt like the primary caretaker of the home and some days feel more like a nurse than a partner.
I also feel guilty for even feeling like this, because he is a wonderful man, but not all of my needs are being met. We've discussed some of the issues, but it is difficult because he just feels guilty and more depressed about the overall state of his health. He is a private person, and hasn't shared his condition with many people, so I was encouraged when he sought out a support group, because I don't think it is healthy if I am his one and only person he is completely honest about with his condition.

I have a lot of feelings of guilt and resentment that I have had to face in the past year, along with anxiety, worry, and soul searching if I am strong enough and unselfish enough to go on this journey with him. I don't resent him- I resent the illness, the way it has changed our lives and our relationship, and the fact that there are some days when I wish it was just easier, that I was with someone without the disease and wouldn't have some of the worries that I face every day. I feel guilty about having those selfish thoughts, even though I am not and would not leave him. He is my best friend,my partner and the love of my life, and I know he hates that I get stressed out, depressed, etc due to his condition.
We have a dog together, and the care of him falls primarily on me (walks, park trips, etc) which I don't mind, but I do worry once we have children, will I feel like a single parent if his condition is still not in remission or in a more managed state?

Thanks for reading, and any feedback is appreciated...talking about this with women who have had similar experiences is very helpful.

Group Leader

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