As I write this, Earl is no longer with us. He is no more…and that’s the best news one could expect to hear about a Toxic Megacolon. Earl decided to show up as a merely diseased colon one day, then proved he could, without the presence of gamma radiation, suddenly become a threat with a name that rivals that of Godzilla or Mothra. Thankfully that threat is gone…but this is his story.
Wait…actually, this is the story of my 18 year-old daughter and her battle with Ulcerative Colitis. This is a disease in which the immune system goes into overdrive and attacks healthy tissue, in this case the lining of the large intestine. She isn’t alone - even in my own family, my wife and son also have UC. And, the Crohn’s and Colitis Foundation of America ( http://www.ccfa.org ) estimates that as many as 700,000 Americans have UC). Unfortunately for my daughter, her case was far more severe, with a lot of pain, loss of blood at times, and now her 3rd trip to the hospital in 3 1/2 years. This time, it got personal, and knives were drawn.
My daughter has been dealing with daily meds and regular infusions of rather expensive concoctions that have done a truly good job of keeping this miscreant from making himself known for a long time. But, over time even the best medications lose their strength, and one day recently a flare-up sent her back to the hospital, where she realized her pain had a name…Earl.
You see, my daughter came to the realization that it was getting close to time to part ways with a very diseased colon, and that she might as well have some fun with the process. So, she named her pain Earl, after the character who met his fate in the song “Goodbye Earl” by the Dixie Chicks. For a few days, we even made jokes about playing that song as she went off to surgery…
But then Earl had one last trick up his sleeve. He became inflamed…and inflated…and much more diseased…and became what is known as a Toxic Megacolon. This is a very dangerous condition, and it can spring up very quickly…just as Earl did here. The pain for her was indescribable, and without very quick surgical intervention she could have…well, let’s just say I wouldn’t be writing such a flippant review of the process here, okay?
So, emergency surgery is the name of the game, and the knives were drawn for the battle. Earl had really put up a fight…he perforated in a couple of places, which caused a lot of very bad stuff to get into places in the body where it shouldn’t be. And, he started falling apart on his own to make the removal even tougher. But, in the end, Earl could not survive, nor could he win this fight. Earl was done…finally.
Now, this is just Part 1 of the story. The reason is that this kind of surgery, for people to be cured of ulcerative colitis, generally comes in 2 to 3 stages…and thanks to Earl, it will be 3 stages for my daughter. Eventually she will have her small intestine hooked up where the large intestine used to end up (no pun intended here), and she will be rid of the ostomy bag she is for now going to have to use…at least for the next few months. The battle scars from Earl don’t go away quickly nor do they leave easily. But, she now has a chance at health and to once again enjoy a very active life. I’ll post more later on as this battle continues…but at least we know the likely outcome. And, we know that Earl the Toxic Megacolon wont be around to do anything else to the people we love.
If you know someone with UC, or some other similar disease, please let them know that there is hope, that there is good care, and that their lives and health are important to you. And, try to put them in touch with the resources at organizations like http://www.ccfa.org, or other support groups that provide help to those dealing with UC and Crohn’s. They will find a lot of help there. One more note - even among people with UC, Toxic Megacolon is rare. It is important to recognize and treat quickly, but Earl thankfully does not show up very often. My daughter’s case doesn’t have to be the way that your story goes…and thankfully, in her case it is far from how her story will end. She is going to be OK - Earl could not stop that.
As for me, I’ll be walking again next April in our local Take Steps Be Heard for Crohn’s and Colitis (you can find info at http://www.ccfa.org/get-involved/take-steps.html - there are local fundraisers throughout the year), to raise funds for research and treatment. More on that another time. For now, thanks…and stay tuned for Part 2, coming before too long to a blog near you!