Yesterday, Jason managed to sit up for a short while. The night before, he'd managed to sleep in the bed. Since his surgery, he's been somewhere inbetween. Kinda reclined, stacked with pillows so he's neither sat up or lay down.
When we got home from the hospital on Wednesday, the bed was impossible. In order for the surgeon to get to the bowels, the tummy muscles have to be sliced through. I have to say, the surgeon did a remarkable job. He used laparoscopic surgery, with hand assist. That's where they use little robot thingies through small incisions, and then make a larger incision just big enough for the hand to remove what needs to be taken out. The tiny incisions are negligible really, and the larger one is about three inches vertically under the belly button, sealed with eight shiny silver staples. It is incredibly neat and tidy beyond belief. But it hurts when it scrunches up to sit forward, and hurts again when it is stretched to lean back.
It's funny how our comprehension of things is simple when dealing what we can see. When Jason sits up, I can see the skin around his wound wrinkling, and scrunching together... it must hurt. When he lays down, I can see the stretch of everything as it lengthens to accommodate the body's full recline. Again, ouch! But behind the scenes, something else is going on that I can't see. In order to sit up, or lay back the tummy muscles have to be employed... and Jason's tummy muscles have been sliced. It's gonna be a good few months before he'll be back to normal. Strange. He's had bowel surgery, and his bowels are working fine now. No pain with that. Who'd have thought.
Crohn's disease is like that. It's an inflammatory bowel disease. It's classed along with IBS, ulcerative colitis, and other "tummy" troubles. It's often mistaken for IBS, because of what you can see... heartburn, tummy pain, diarrhea. But it's what you can't see that diagnoses it as Crohn's. And by the time you get to know what's really happening behind the scenes... it's too late.
Many with Crohn's relate it to food. They find that certain foods put them in a flare. Many others relate it to stress. They find that when they're stressed, they end up in a flare. A flare is the term used for an episode of typical Crohn's symptoms. Extreme tummy pain, incredible cramps, bleeding, vomiting, weight loss, high temperature... and the need to take a sleeping bag into the bathroom, because the diarrhea you experience has you in there all day long. Or night. And that's just what you can see. What you can't see is what's really going on behind the scenes.
Crohn's isn't just any ordinary inflammatory bowel disease. (If there is an ordinary one, that is. ) It's one of those weird auto-immune things. What's really happening is that the body recognizes food as an invader, and goes into attack mode. It also recognizes bacteria as an invader, and launches an assault. All this causes white blood cells to accumulate in the lining of the intestines, producing chronic inflammation, which leads to ulcerations and bowel injury. Unlike other ulcerative bowel conditions, the Crohn's ulcers don't just form on the top layer of the intestinal lining... all layers are often involved, and treatment is difficult to say the least. Sometimes, the ulcers are so invasive that they tunnel their way through to other parts of the body. These tunnels are called "fistulas", and are a non-too-pretty complication of the condition.
There is no cure for Crohn's. Basically the body's system doesn't work properly. It doesn't like food, and it doesn't like bacteria. Both are essential to the workings of the human body. As the disease progresses, the normal anti-inflammatory meds are no longer enough, and the GI guys have to break out the serious stuff... the steroids to attack the inflammation, and the immune suppressants to put the immune system to sleep. Meanwhile, the ulcers have scarred the bowels so badly, that various sections are rendered damaged beyond repair. These sections narrow under the inflammation, and the first that many Crohn's sufferer's know about their true condition is emergency surgery for a blockage.
Jason was fortunate to have his Crohn's diagnosed by a brilliant GI doctor right here in Springfield, MA. At the time, we had no idea just how on the ball this guy really is. Although Jason's probably had Crohn's since childhood, it was only diagnosed six years ago. He's spent most of his life in pain... eating like a sparrow, avoiding events where food was to be had. Avoiding traveling in anyone's car other than his own, because he can find the rest room when he needs it... not when the driver decides it's time to get off the highway. And sadly, ducking and diving the slings and arrows, cheap shots, and sarcasm from those ignorant of what was really going on behind the scenes of the life known as Jason.
It's funny how we have comprehension for what we can see. Jason's had bowel surgery, so there must be something wrong. For Jason though, he's had this something wrong for most of his life. And the symptoms were there for all to see. But now, he's had major surgery, and that can be comprehended. It lends validation to his condition. Now it's okay if he doesn't want to eat. Now, it's okay if he declines an invitation to an event. Now, it's understandable. He has Crohn's.
Hello? He's always had Crohn's.