His blog is cool because it's filled with stories that I love. Like how he got a deadly bug stuck in his bag while in Costa Rica... Wet humour about dating. And articles about how he had to convince his physician that he didn't cause his rectal problems by sticking animals up his butt. And many more. He must have graduated from the same fine educational institutions as me.
Anyways, his blog suddenly stops at the point of his surgery. No more entries. Nothing for 2 years now. Gone, AWOL. I contacted him to politely ask what happened.
His response rocks. I copied it below because I think it's a good reminder and really gets to the heart of getting a second chance:
Hi Steven,
Great to hear from you. First of all, best of luck for your surgery and recovery. I know that even with the hope that the operation brings, it's still daunting to face such major surgery and the permanent changes it brings.
It's worth it. Here's one indication of life with a bag: I'm writing to you from a hostel in Madrid, on the final day of a six-week, 10-city backpacking tour of Europe. That's not something I could have done two years ago! I stopped the Crohn's blog because, well, I had less to write about. I was also stuck inside less--I've been living life instead of blogging! Actually, I have a new blog, this one about my travels; you can read it here:
I just checked your blog and you're exactly correct: the bag is a second chance. I resisted for so long. In fact, I had a temporary colostomy after having a perforated colon during my first term of college. Reversal was an option, and I took it. But as you said, life with colitis/Crohn's becomes a house arrest. In fact, your post from Saturday rang true to my life as well. Eerily so: 100%, every single word felt familiar.
Life with a bag is good. Very good. It has its obvious drawbacks--the occasional large bulge in my side, the inability to control flatulence (Gas-X will become your friend), ornery bags that don't want to stay on. But these are nothing compared to life before.
Most of all, I can travel now. I've always wanted to be a travel writer, but until the bag, I was pretty much stuck doing of a Grand Tour of Minneapolis hospitals, which is not the sort of material that editors want you to write about. And rock climbing! I can climb again. Such a joy.
That said, here are a few things to know if you do opt for the bag as opposed to the J-pouch (about which I know nothing). Bear in mind that I have a colostomy rather than an ileostomy, which may make some things different.
-- Find a bag that's right for you, and do it early on. As your doctor or ostomy RN to help you get information about the various brands and models (in my experience, the docs have a lot of that info on file; you can also just search Google). Most will send you a sample bag or two for free. The biggest thing for me was the closure at the bottom--I hated the clip that comes with the most basic models. One more thing to break or drop in the toilet, etc. I quickly switched to Hollister's Lock-and-Roll models, which have a sort of super-Velcro closure.
-- For travel or intense athletic activity, I like MicroSkin (http://cymedostomy.com/). Unfortunately, they're fairly expensive, and my insurance only pays a portion of the costs. Otherwise I'd use them all the time. You can get a free sample on their web site.
-- Stool from a bag smells even worse than regular stool. It can be ... pretty foul. You can get drops that you put in your bag, but I found a cheaper, better solution: Listerine Strips. They're intended to freshen your breath, but they work like a charm in the bag. Just drop one or two in there and you're set. Unlike the drops, they're available everywhere (drug stores, gas stations) and if you happen to drop them, no one sees a label reading "ostomy bag odor-fighting drops."
-- Know that even when you've established a routine, it can change. I had been keeping my bags on for 5-6 days, but in the last few months, they've only been staying on for two days, maybe three. Also, my stoma size has increased a fair amount (luckily, my bags are cut-to-fit). It's frustrating to have such a drastic change, especially while I'm traveling. But oh well.
-- Hydration is key. I don't think this is much of a problem for those with ileostomies (from what I've heard), but constipation is a huge issue for me. It can be pretty miserable, unless I stay VERY well hydrated.
-- Have a sense of humor about it all. It seems like you already have that, so I know I don't need to tell you. But it really does make it so much easier. Develop a few lines to defuse potentially awkward moments when the subject of illness comes up with colleagues or acquaintences. Like: "Yeah, I can make balloon animals with my bag! Do you want a dog or a giraffe?"
-- Finally, understand that, alas, a bag is not **necessarily** a permanent cure. My Crohn's came back, though mildly, after just one year. I've heard that's a very short time frame, and many people don't ever have symptoms again. But it can happen.
All best,
Doug
HA HA HA ,HA
ReplyDeleteYOU GIVE MOST OF YOUR FOOD TO BOGAR(BLACK PULLY)LYING UNDERNEATH YOUR CHAIR. OR YOU WOULD HIDE THE FOOD INSIDE THE KITCHEN CUPBOARD,WHICH I FOULD FIND UPON CLEANING THE KITCHEN.DURING THE WEEK.
EXCEPT FOR COUNT CHOCULA, WHICH YOU WOULD CHASE ME AROUND THE HOUSE FOR IT, NO WAS NOT ACCEPTABLE, MUST HAVE IT. GIVE ME MY COUNT CHOCULA.
STEVEN'S MOM.