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.

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.

Hey thats my spot!

With ulcerative colitis the need to run to the bathroom every few hours at night is a given. It starts with a dream of needing to go to the bathroom and being trapped in an elevator with a Philipina nanny who is pushing all the wrong floor buttons accidentally and I'm splitting at the seams as the door opens and closes to reveal empty floors.... and she never leaves as she just wanted to go to the basement anyways... and then suddenly I awaken with wicked cramps and the feeling that I need to bolt to the can in 2 seconds or end up creating a chocolately not-so-Willy-Wonka-esque waterbed.

Anyways, after doing the toilet based fecal deeds which I am too shy to elaborate upon, I return to my bed ready to sleep and find this thief in my spot.

With some coaxing using liver bits and a tender growl from me she leaves my bed and goes back to her custom bed which is about 2 feet away (and might I add very comfortable too). And then 30 minutes later, I have to run to the can again and donate some more blood to the municipal water works as usual... When I return to my bed, guess who has taken it over again?