Wife's entry, 4 months after 1 step Jpouch surgery

Hello All,

It's been a long time since either one of us has contributed to the blog and for good reasons, Steven is doing really well! We have been too busy living life again and it feels great to be able to take things for granted. Let me tell you what has changed as a result of Steven's last surgery. 

First of all no more bag changes. This bi-weekly ritual of careful timing and anxiety is behind us. The agony of taking tape off an open wound is a thing of the past. 

Second, there is no more need to conceal a balloon under Steven's shirt. The balloon would expand according to Steven's diet and in general takes a bit of fashion planning during business meetings.

Third, and possible the biggest news of all is that Steven is weight lifting again!. I remember when we used to see other people's blogs about how much they can weightlift now that they have a j-pouch. We of course thought they were lying and Steven has resolved that weightlifting would be a thing of his past but not his future. Well, not only is he weightlifting again, but he is cutting the grass, traveling and in general doing much better. While he still lacks the energy he once had, his waking hours are much more productive.  

I just wanted to thank everyone who has been staying connected during Steven's journey. I know your support has meant so much to both of us. I think we really need to have witnesses during our life challenges so we have a sense of reality when the bad times go away.


Love,
the wife

Shaving, Swine Flu and Being Kosher/Halal

I never had such a hairy body before but all the Prednisone steroids have me so hairy that even Bigfoot would tremble if he saw me. Today I started shaving my Rhesus monkey-like hairy belly so that the skin gets used to it. I'm actually a bit relieved that I didn't need to hire a landscaping crew and lay in the yard while they go at me with weed whackers. A simple blade and some elbow grease worked fine.

The idea is that shaving my stomach is going to be a normal day to day activity whichever surgery I get so perhaps my skin can get used to the process now and rash up less. Apparently without a rashless, clean-shaven belly I can't properly wear "the bag".

Speaking of getting prepared, the next question is this. What to do about Swine Flu? Should I get the shot before surgery? Also, I wonder what do devout Jews and Muslims do about the Swine Flu shot? Do they just call it H1N1 and be done with it?

While I'm asking all these questions, is there a way to turn this frontal cortex thing off? I'd like to be not able to think for a month or more. Any comments or suggestions would be great.

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.