New life lesson: One day at a time.

When I think about having an ostomy for life, my mind immediately races to calculate how many times I'll have to change the flange and clean the ostomy site/stoma (60x/year?). I get depressed thinking about this change routine becoming necessary on a long term basis.

And when I think about all the little adjustments I have to make, I get a bit depressed. Eg, I can't put hot plates in my lap anymore while I snack/watch TV. I have to be careful about how I bend or about anything touching and ripping the bag. The fart noises the stoma makes will be a challenge when I am in boardroom meetings. I'll always have to have supplies ready and carry an emergency kit with me. In comparison to my old disease, it's really so much better that I can't even compare though I still manage to be daunted.

A fellow patient in the hospital who was going through much worse than me (his bowel cancer excision resulted in a nearly amputated leg) said the only thing he could do to manage the psychological weight of his condition was to "take one day at a time". He managed to stay upbeat and strong despite a myriad of complications. And he was only 23 years old.

I used to think that most problems need to be viewed in the larger context of life as in saying "in the long term this problem is really small". Now I see that chronic health issues require us to not think too much, to not overload the mind but to take one day at a time and block out the rest. Compartmentalization. And to just make each day count.

Too much looking ahead may actually be harmful.

Just got a surgery date.

After almost 3 years of pain from wicked flaring indeterminate colitis... I decided to give in and have surgery. The decision was made about a month ago.

The hospital was non commital on the surgery date until today. It's been about a month of extra pain that no medicine has been able to control and I finally have a date. Too bad its 5 weeks away but at least a date is set. The reason for the delay? An assistant surgeon was needed. I think he's still a student and due to him "having to be there" to assist, things were pushed off the extra 3 weeks. I am not happy about this because the hospital could have other assistants with better credentials. Why this guy?

So on we go. Minute by minute battling two fronts: One is pain relief, the obvious one. The other which may be a larger front is the emotional. It's too easy to self pity, to get angry or depressed. What things can we put in place for the next 5 weeks to get *some* pleasure out of life while waiting? Don't get me wrong, surgery scares me to no end, as does wearing a bag, but I think just about anything is better than this level of refractory colitis which the drugs don't control. So, the surgery and bag will be my second chance at life.

So other than ordering a bunch of magazines and audiobooks to distract me, and cutting out all carbs temporarily to alleviate symptoms to some degree, what can I, we, do to make this next 5 weeks more fun? The list of things we can't do is enormous but perhaps we can find a cabin with a private toilet nearby and a warm bed and a nice view and bring our pup with us and enjoy that for a while. Even 30 minutes a day on pain meds where I can see something beautiful would make it worthwhile.

Back home, perhaps we can get more comedies on DVD and continue to laugh at night in between pain episodes. Perhaps my good friends will continue to take the time to visit me at home. Perhaps we can create some sort of art or music or study a new skill though that's a bit tough when you are this weak. Believe it or not, perhaps I can even temporarily get well enough to just go to work and distract myself from all this navel gazing, productive as it may seem.

From this dis-ease I believe I've reached a fork in the road. I either choose the first route which is self pity and despair (after all, lets face it, nothing really cures the disease) or somehow, despite it all, stay hopeful and fight on and on until something better happens. And then when that something better is taken away or begins to fail as it always has over the last 3 years, fight on even more and try new things, new approaches. Where the hope comes from I don't know but I know I must nurture it and keep fighting. The alternative route of despair looks far worse. It's a precedent that l believe becomes a very shaky foundation for any future self growth and happiness.