My wife has penned her perspective on my Crohn’s and how the SCD has impacted our little family. Perhaps your spouse can relate.
I knew Paul had Crohn’s Disease when we were dating. I really didn’t know what that would mean to our relationship and, ultimately, to the family we would have together. Part of my ignorance was due to the fact that you can’t really appreciate the seriousness of a chronic disease until you’ve actually lived with it. The other part was due to Paul’s skill at hiding his pain. Through the years of suffering with Crohn’s Disease he’d developed a host of coping mechanisms that led me to believe his disease just wasn’t a big deal.
In fact, for the first six years of our marriage, Crohn’s seemed to me more like an inconvenience than a life threatening illness. When we went out to restaurants, I learned to always have money to pay the bill and keys to the van so I wouldn’t be stuck at the table with a restless infant and a toddler while Paul was in the bathroom for a half hour or more. We budgeted bathroom time in all of our activities and I carried food and toys to entertain our daughters while we waited for Daddy outside public restrooms.
Paul never complained and never spoke of pain. One day I came home from work and he was lying on the couch. He’d been there all day. He calmly said he thought maybe he needed to go to the hospital. I called the telenurse to get pre-authorization and she asked me if he was running a temperature. Still on the phone with her, I brought the thermometer to him and realized his fever was almost 105 degrees. His first flare up in our six years of marriage.
This was the beginning of December 2004. Paul had already heard about the SCD. He’d researched it and was planning to start the diet on New Year’s Day 2005 – after the holidays and enjoying some of his favorite foods for the last time in a long time. I listened to the GI telling us how serious his case was and that he needed to be on immune suppressants and possibly have surgery. For the first time I think I realized that I could lose my husband to this disease and I was afraid. As scary as the drug’s side effects are, I asked him to reconsider going just the SCD route. But Paul had done his research and he was determined to give SCD a try. We also had something that many people contemplating SCD probably do not have – a supportive family physician. While the doctor was not familiar with the SCD, he did know Paul and encouraged him. We are now four years into our SCD foray and my gratitude to this doctor only deepens.
After he’d been on the SCD for awhile, Paul began to talk about pain — in the PAST tense. He talked about the pain he used to have but no longer did. How could I be married to someone and not realize how much of their day was spent double-upped in agony?? I’ve never exactly admitted this failing of mine to him, or asked for his forgiveness. We’re both focused on the future and trying not to spend too much time looking back. That’s the hardest thing for Paul to accept – the years of pain that maybe could have been avoided if he had known earlier about the SCD.
Now that I’ve admitted I didn’t truly understand how bad the bad time was, you may not trust my observations on how good things are going now since Paul has been on the SCD. We can take the girls on walks – long walks – no bathroom in sight. We can go to stores, movies and museums without losing a half hour or more of time to bathroom breaks. As a family, our quality of life is greatly improved and we do things together that would have been a source of anxiety just a couple of years ago.
The downside? Paul and I don’t have any romantic dinners out. Eating at a restaurant together is no fun when you have to worry whether your husband is going to get sick because some waiter didn’t really know what was on the steak. Our grocery bill is higher…have you ever seen a coupon for fresh produce? Traveling is more complicated and Paul has to plan his meals and prepare food days in advance. We usually camp on our annual vacation so that Paul can cook his own food.
So what. The money we save on restaurant meals is spent at the grocery. We love camping. My husband looks and feels great. It isn’t a diet for the half-hearted, indulgent or lazy. I am grateful to him for loving himself and us enough to stick with it.