A college guy named David has made this short video about a fictitious musical on Crohn’s disease. At least somebody knows how to have a sense of humor about this disease. [Some swearing in this video.]
If anybody ever reads the blogs on J-Pouch Life you’d be familiar with Brevin, a good-natured guy who currently lives with an ileostomy. He posted a comic that he had done this week that captures one of the more interesting aspects of living with an ileostomy.
My output used to squirt out five feet or more in the shower.
Sadly, I think Jon in this Garfield Minus Garfield comic reflects the attitude of many people with colitis. We all fear something. After seeing our health fail us so terribly we have a hard time trusting our own body.
But just because we’re afraid of failure doesn’t mean we don’t face failure. There’s no way to ever eliminate the prospect of failure. Instead, we turn towards life in spite of failure.
Yesterday a ran across a casual acquaintance I hadn’t seen in about three weeks. This man knew nothing of my medical issues, as we weren’t that close.
He asked, “Where’ve you been these last few weeks?”
“Well, I had to go through some surgery. But everything’s all better now,” I said.
“I don’t see you missing any parts so you must be alright! Glad to see you again!” he said with a smile.
If only he knew what I was missing, I chuckled to myself.
In all seriousness 2009 is here and it’s a brand new year. When I was in the thick of darkness back in my colitis days, I took comfort in the idea of newness. As we all know, we suffer many dark days trying to control our infantile bowels. And some days get very bad. So bad that giving up seems the only reasonable option, which is why I always looked forward to the night. I knew that upon waking the next morning that I would greet a new day. Not that the new days are always better. But you start with a clean slate and are given another chance by God to try this thing called life one more time.
Hey everybody, I hope things are going well for you and you’re getting ready for Christmas. I’m doing great and feeling a little better everyday. When you’re recovering from surgery, it’s important to keep your goals in mind and not focus so much on the day-to-day trials.
Yesterday’s Stool Count: 8 times during the day, 4 times during the night.
No improvement yet.
Tomorrow’s video is about some exercises that are important to do following j-pouch surgery.
And for those of you in the middle of a flare up right now, do you ever feel like poor Jon here from Garfield Minus Garfield?
Sometimes the urgency can be overwhelming, as my video from yesterday so perfectly reflects.
Hey everybody, one week from now I’ll have my next (and hopefully last surgery). As I come to this point after a long journey, I’m filled with different thoughts and emotions. I’ll discuss tomorrow my state of mind before this big transition from life with an ileostomy to life using my butt muscles again.
I also found another Garfield Minus Garfield comic that matches perfectly what many feel like when they have colitis. Not that I feel like this at this moment…haven’t felt this way in a long time.
Hey everybody, I went to CVS/pharmacy a few days ago to get some heat pads. On rare days the area around my stoma hurts, usually at the end of the day, most likely because my body’s getting tired. So heat pads help with that. And when I was in there, I was amazed at their impressive cigarette display behind the counter. I think they have more cigarettes than the grocery stores and liquor stores! Does it seem odd to anybody else that cigarettes are on one end of the store and the pharmacy is on the other?
Hey everybody, tomorrow’s video completes the two-part set of videos about pain. This may not be the last time I visit this subject.
For a little end of the week humor, I found this Garfield Minus Garfield comic that reflects what life is like living with ulcerative colitis. Check out his site for more great comics like this.
Speaking of Hollister, they are the company dominating the ostomy care product market, as far as I can tell. They’re good people and make good products. But listen to this: in their FAQ section in the Ostomy Care pages, there is a category for “Lifestyle Issues.” A whopping one question drops down in this section, which asks, “I am starting back to work soon and I am wondering about emptying my pouch in a public restroom. Any tips?” First of all, the English and grammar nut that I am doesn’t like the phrasing of “am starting back to work soon” but let’s ignore that. The real problem is the answer Hollister gives: “Being prepared is most important. There are tips to help make the process easier. Also, you may want to think about an odor eliminator if you are concerned about odor.”
I don’t know about you, but that’s the lamest answer to such a question! The questions asks for tips, and then the answer says, “There are tips to help” but doesn’t give any! If Hollister had asked me to answer this question, I would say:
“Public restrooms give you really horrible, onion skin thin paper. Take ample amounts of paper and set it aside to wipe off the ends of your pouch. Then take about ten feet (literally! I’m serious!) of toilet paper and roll it into little swabs. Do that at least two times so that you have enough toilet paper to absorb the extra stool. Go into the handicapped bathroom stall to give yourself more room to work with. And have pride in your ileostomy and don’t worry in the slightest what others think because the people you meet in the public restrooms you’ll never see again in your life.”
Maybe that’s a little wordier than their answer but I think it works just fine. The questioner wanted tips so give them tips, Hollister!
In all seriousness, when I was coming back from the hospital after my first surgery, I stopped at a gas station to empty my pouch. The gas station had one stall and a man rushes in and needs to use the toilet semibad (nothing like I or fellow UCers have experienced though, right?). So he says to me, “Hey man, are you almost done in there?” And I knew somebody was going to do this and lucky for me it was my first public restroom experience, so I said back to him, “I just had half my intestines taken out a few days ago so it’s going to take me a little while before I’m done in here.”
I was just being honest but it shut him up quick enough.