“You look like a skeleton,” I said. He is on the couch, shirtless, reclining on one elbow, as usual. It’s the only position that eases him. He has been trying to get dressed, but he has only made it as far as his trousers and socks. Every bone in his upper body is visible. I can almost read the brand name of the defibrillator/pacemaker implant under the skin below his left collarbone. He’s lost ten pounds in the past couple of weeks. He doesn’t eat. We both think it’s the pain pills that have ruined his digestion and hurt his stomach, but without the pain pills he can hardly stand.
However, he assures me it doesn’t seem to be getting worse, either. I think he’s just at the end of his rope. More than two months without relief has made him pretty wimpy. Since the steroids haven’t helped, last Monday the GI doc gave him the choice of trying one more new medicine (an immune suppressant. Crohn’s is an autoimmune disorder), or going ahead and having the diseased piece of intestine chopped out. He opted for the meds. So he has been undergoing tests last week and this week to make sure he doesn’t have some heretofore undiscovered dread disease that will blossom once he goes on the immune suppressant.
Yesterday, we went to the gastroenterologist’s office so the nurse could check the results of his TB skin test (negative), and while we were there he felt so bad he had to sit down. The nurse decided to call the doctor at the hospital on his rounds, and the doc wanted him to come to the hospital for an operation RIGHT NOW if he felt that bad. He immediately decided he didn’t feel that bad. So we left and as previously planned I took him by an imaging clinic for an X-ray.
Today is the blood test. He’s supposed to go to the lab and get his blood drawn at 1:45. He puts on one piece of clothing at a time, then sits down for a minute until the pain abates.
“You look like a skeleton,” I said, and he laughed. “How many times over the years have we been here?” he asked.
We’ve been married thirty-seven years, and this is not our first bout with the Crohn’s, though it may be the worst. “I should have known what I was getting into,” I agreed.
“You should write a book called Crohn’s Wife,” he said.
Maybe I will.