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

Bone Density

Surprisingly, recent studies show that bone density is not necessarily linked to increased exercise activity or even weight training.  What apparently matters more is impact on bones.  Sources of impact that may be helpful are jumping, skipping, etc where a forceful load is placed on the bone but not with too much speed.  

I've added those to my repertoire of healing activities.    It will be nice to build back up so a slip or fall doesn't cause my bones to shatter as I've heard can happen to those who are on prednisone for too long.


I recommend anyone on prednisone for long get a bone mineral density scan when they start their course of pred.  This way they can have a baseline to compare to, after the prednisone tapers off.    In my case I will be able to directly measure the effect on my bones when I get the results this week.

From enemy to friend

A year ago when I had a severe flare up of ulcerative colitis, I took Imodium so that I could go to work without trouble. Little did I know that the Imodium nearly would kill me. I bloated up continually but the Imodium had paralyzed my digestive tract from passing any gas. Within 12 hours I nearly burst. It would have been very ugly. The clinical name for the burst is toxic megacolon when your colon is so inflamed that it bursts, spewing feces into body cavities and blood. I recall vaguely that there is a 20+% chance of death and the surgery to fix me would have been ugly, if it would work at all. Thankfully a burst never happened. My body eventually responded to the horrible Imodium ingestion by eventually causing concurrent diarrhea and vomitting. This was not fun and Imodium became my enemy.

Now with an ostomy and my colitis "cured" I feel that Imodium rocks. I took one tablet last night and it made it far easier to sleep as my bag stopped filling up every 2 hours. It also made changing my adhesive barrier much easier and cleaner. And moreover, it slows things down so that I absorb more water than before. Remember that the colon's job is to re-absorb water and electrolytes. I don't have a colon anymore. Until my small intestine learns how to absorb water better I am losing water at a much higher rate than before. Any way to ensure hydration is welcome. Imodium is definitely my new friend!

A mongoose in heat

(Benadryl + Codeine Tylenol + Clonazepam)/Prednisone = still not ready to sleep... What else must I take? I hate taking drugs of any sort but I need to sleep somehow.

Oh yes, and fear of going to the can is another thing going on now. After yesterday's marathon session of 36 BMs in 24 hours my butt is pleading to be left alone...forever. And to top it off I know it's going to get worse because I'm starting to catch a cold or flu now too. And in my case that usually means another few marathon days on the can because as my immune system ramps up to fight the virus it also throws a few extra killer cells towards my intestines for good measure.

Sometimes the pain is so bad that I sometimes can't help but yelp while in the bathroom. I sound like a mongoose in heat desperately trying to beckon a suitor. With all the crying pains coming from the bathroom I often wonder what the neighbours think we are doing in here.

Who's Boring?

Who's boring? I'm boring! (At least to my fellow humans like Fairweather Rob and Diapers Dave and Yo-Yo Yo. )

There's so little to talk/blog about when you sleep 18 hours a day.
What do you share? When you got up? When you went back to bed? What audiobooks you listen to? How many thread count your cheap linens are made of? Yawn. Boring.

I think Mousey the bulldog thinks I'm boring too.

The only one who loves all the sleeping and "boringness" is Baby Bird because she gets to hang out with me more.
It doesn't matter to her whether I'm awake or asleep as long as she can see me. Sometimes she'll talk to me and scream my name or "I LOVE YOU!" out of nowhere. And she'll stay with me for hours on end before heading back to her main perch for some grub. Of course if I didn't leave good food for her I'll be called a Mother-#*($# first. But that's understandable. Overall, what a great supporter! I now have to figure out how to sneak her into the hospital to stay beside me for 7 days.

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.