Posted 9/5/2008 5:22 AM (GMT -6)
I know how you feel too!
One day I was "normal", and the next, diagnosed with rectal cancer (Stage 1, no treatment necessary). Prior to that I had rectal bleeding so technically that wasn't normal. But by normal, I mean I had one bm a day, could eat anything I wanted, I wasn't tied to a toilet, as I am now. I ended up having a 5 hour colon resection (90% of my sigmoid removed, 15 inches of my colon, gall bladder removed too because they found "hundreds" of gallstones on a CT scan, a temp ostomy, reversed 8 weeks later).....all of this 9+ years ago.
And I've never been the same since.
My surgeon said this would turn my world upside down.
He was right, it has. It has changed my life, forever.
My oldest daughter who is 21, in college and very active with clubs, socializing with friends, etc. (ie, burning the midnight oil, the candle at both ends and loving it at the same time!).........are you ready, thinks I stay home far too much. That I've just retreated from the world.
Well, in a sense she is correct.
I have said no to certain social invites. If I have had several very busy days and accepting an invite (dinner with in-laws for example) would be over the top for me, I say I have other plans or previous commitments. Even if that means sitting on my couch watching TV.
I have discovered what I need to make my situation work - a loving, understanding family (and even then, they don't always get what I'm going thru), plain food, 4 to 6 very small meals a day, a calm, quiet social calendar, etc.
My hope is that people give me the space to manage all of this the best way I know how to.
Like you, it does isolate us. I have totaled the time I'm in the bathroom, it's probably 3 hours a day on my bad days. That's like a part time job! We have paisley wallpaper in our powder room (my favorite bathroom in this house) and I have spent so much time in there, I sometimes find another "face" in the print. I know that sounds wacky. Some of the faces are obvious, people will say - does that look like a monkey's face to you? LOL I agree, yes it does but I have sat on that toilet for so many days now, I have found at least 10 faces. Once during an enema and lying almost upside down on the floor waiting for it to "cook", I found another, in an upside down position.
These are times I know I am changed. I know where all the bathrooms are located, in every store, mall or on vacation (hotels, I'm quite good at finding an off the beaten path bathroom, near an unused area of the hotel). LOL My family asks me where a good bathroom to use is found.
In my case, the flip side would be I could have had Stage IV cancer and might not have survived to see my girls graduate from HS and college. Grow up, get married, have children.
But is any of this easy - OH NO! It is a constant struggle to maintain a normal existence. In a normal colon or body world. I do envy people who can eat anything they want and then not need a bathroom for hours after eating!
I once had it so good and didn't even know it!
Vent with us anytime.....I do think the comaraderie/support we find here is very beneficial. It does help us accept our situations with patience, diligence, acceptance, and grace.
jtaurus - I wish you my very best!