When I was 13 years old, in 1966, I was diagnosed with Crohn's Disease. Almost immediately, doctors began telling me to hang in there. Hang in there, Tom, because a new treatment is literally just around the corner. A new drug, a new idea, a new interpretation of the data, a new procedure...there was always something imminent that would immeasurably improve my life. They were about to discover that Crohn's was caused by a previously unknown bacterium. Once it was identified, it could be treated. No, wait, it's viral. Or fungal. In any event, there's a new drug for that, too. No, that's wrong; it's more complex than that, so if we treat you with a chemotherapeutic antibiotic treatment it'll finally be effective enough to wipe out the bugs that cause the disease. (Side note: I can't speak for the bugs, but that one almost left me blind before it almost killed me.)
So I went, year after year, enduring several episodes a year of abdominal pain that rivaled acute appendicitis. Rivaled it so closely, in fact, that ER doctors repeatedly would not treat me for the blockage that was causing the pain because they didn't want to mask the symptoms of a ruptured appendix. This meant hours -- sometimes days, honestly -- of lying there, writhing in wave after wave of acute abdominal pain, until the episode ended, usually on its own. I was never given anything for pain, just monitored for the nonexistent rupture.
I got used to it. I asked if I could have my appendix removed so that this would become a non-issue, but that, of course, is unnecessary surgery, removing a healthy appendix, and therefore was completely out of the question. Better to suffer miserably 15 days a year (in pain we wouldn't let an animal endure) than have to recover for three days from "unnecessary" appendix surgery.
Finally, I found a surgeon who was willing to remove, no, not my appendix, but my diseased tissue. Surgery is usually only a temporary fix for Crohn's because it does nothing to address the underlying causes of disease. Crohn's just crops up again somewhere else after a while. Mine did, but for a blessed few years, I was symptom-free and healthy enough to work again and even become a father. My disease didn't get bad again until my little girl was in kindergarten. Then a routine x-ray showed something fishy in my intestines that looked life threatening and I was rushed into surgery for another bowel operation. It turned out that my doctors just didn't communicate effectively with each other. What they saw was not a life-threatening embolism, it was the joint where I was "reconnected" in my previous surgery. This second operation was completely unnecessary. It was not a laparoscopic procedure. I had an incision running from my chest to my groin, and it became infected. The infection ultimately destroyed my abdominal muscles in places and I had to have more surgery to install a plastic panel. Over time, this panel failed and needed to be replaced.
But I digress. After a while, the idea that Crohn's was caused by an external organism lost popularity. The autoimmune disease theory gained popularity. Crohn's wasn't something I had caught, it was something I was born with or acquired through defective biochemistry. My own system was attacking itself. I needed to suppress the overactive immune system to control the disease and get my life back, easy peasy.
That's not the way it worked, either. I do take massive doses of immunosuppressing drugs, as though I were a kidney or heart transplant recipient, and it sort of keeps the Crohn's under limited control, but as happened recently, the disease has a way of asserting itself, especially when I catch something like a stomach flu. Which I do, often and easily, because I am suppressing my immune system and therefore I catch all kinds of things that a normal person would just shrug off. So I have to take corticosteroids to suppress the inflammation caused by the stomach flu. Corticosteroids like prednisone are great to control the disease for a short while, but being on them for any length of time starts to make me gain weight and go crazy with hyper-irritability. They are steroids, after all. They don't call it "'roid rage" for nothing.
So there are all these other autoimmune drugs out there. Most of them have pretty awful side effects. You've seen the ads on television, surely. They all tell you to ask your doctor if Humira, or Enbrel, or Remicade, or whatever "is right for you." Only in the fine print does it warn you that you might suffer neurological or other side effects. My side effects were neurological and rheumatological. I developed rheumatoid arthritis and peripheral neuropathy after the first half-dozen treatments started causing burning and aching in my joints and limbs. I stopped the treatments, but I kept the arthritis and the neuropathy. Now on good days, it feels like I'm standing up to my bottom in ice water. On bad days, the water is full of piranhas and electricity. It's also left me impotent. (Yeah, that wasn't hard to admit at all.)
Which brings me to today, when I am exhausted and done for the day by 12:30 in the afternoon. My blood count continues to fall, my Crohn's has been the same for decades, and the other illnesses associated with it in my "autoimmune package" (the latest theory) continue to wax and wane along with it. When the Crohn's is bad, everything else is, too -- joint pain, phantom coldness, anemia, etc., etc., etc.
So this is all by way of saying that I have given up hope. But I'm actually not depressed about it.
I no longer expect Crohn's to be cured or treated successfully in my lifetime. Nobody works on cures any more anyway, because you only pay for a cure once, but you pay for treatment over and over and over again. But I don't expect a good treatment, either. So to my doctors I say -- I love you all, and I appreciate your time and your intelligence and expertise more than I can say. But please stop telling me to "hang in there." Please stop telling me about the latest research or some new drug with a long name ending in "-imab" that's specifically wonderful for "people like me." Stop telling me to hope. Just help me to live out the rest of my life as comfortably as I possibly can. At this point, I want a successful treatment, if one ever is developed, to come as a pleasant surprise. This seems preferable to me to living through disappointment after disappointment after disappointment.
Thank you all, and good night.