Colitis’ Last Stand

September 2, 2009

And one more thing

Filed under: Disease,Exercise,This Body — clozach @ 23:07

This weblog wouldn’t be complete without a little before and after. I don’t have any photos of me at my lowest weight (115lb / 52kg), but here are some from December ’08, when I was still around 123lb / 56kg.

Me in boxers, gaunt from colitis, showing my profile for posterity.

Here I’m red-faced from a hot shower, but most of the time I’d get comments from people about how pale I looked. Low blood count, you see, due to slow, constant blood loss.

Crosswords on the couch.

This second pic gives you a sense of how my increasingly skeletal frame filled out my clothes (poorly), how gaunt I was becoming, and how useless I was. I spent most of the holidays on a single couch filling out crosswords. Occasionally I had to go up and down the stairs, which would wind me immediately.

Here, by contrast, are some shots from July ’09, a little over 3 months with Sammy Stoma and roughly 145lb / 66kg.

Wading in the ocean with Lily.

Yes, my shorts are pulled a bit high to cover Sammy’s ostomy bag. This is the best I’ve got in terms of shirtless self-portraits, but hopefully it’s enough to show the return of my upper-body muscles. If not, suffice it to say that the Maui winds would have blown me down the coast if I’d tried to take the outrigger canoe out earlier this year.

Me and Lily on the canoe.

Paddling off into the sunset.

Update 9/25/09: So many activities are completely off-limits when the average time from urgency to accident is 2 minutes or less. I was reminded of this yesterday when a friend joined me for several hours at the climbing gym. I’d take a stoma over being home-bound any day…and do!

Me and Lily on the canoe.

Paddling off into the sunset.

September 1, 2009

Signing out

Filed under: Disease,Exercise,Food,Medical Treatment,Sleep — clozach @ 13:43

It used to be incomprehensible to me how life could possibly be better with a seemingly important organ completely removed. Had I not been so close to dying, would I have ever “given in” to the doctors?

Here’s the crazy thing. I now have more energy and strength than I’ve had for most of my 12 years with UC.*

For example, one of the things that I believe hastened my decline in ’07/’08 was an addiction to energy drinks. I’d be exhausted every afternoon, so in order to get through the day, I’d give myself a large-can dose of taurine, ginseng, caffeine, and vitamin B. Begin the feedback loop: dehydration and hormone imbalance -> more tired -> energy drink -> dehydration and hormone imbalance….

Before that, things weren’t much better. I’d always assumed that my afternoon slumps and my slight brain fuzziness were symptoms of my bad sleep habits. Now I think that my colon was sapping me of energy regardless of whether or not I was in remission.

Proof? OK…

  1. I’ve been regularly operating on 6 hours or less sleep, yet my energy has been consistently up.
  2. While previous attempts at consistent exercise tended to leave me feeling better briefly, but tired overall, I now do a full 30-60 minutes 1-2 times per week and feel great.
  3. Activities that used to cause me back pain somehow don’t any more.
  4. Though I hid it and denied it, I used to have long bouts of depression. I’ve been out of work for so long now that I should still be depressed, but instead I’m taking on several projects at once while still applying for several jobs a week. (Gotta love the economy!)

Anyway, I don’t expect to post here for awhile longer. I’ve got a small bit of rectum left for potential J-pouch surgery, so I still output a teaspoon or two of mucus and/or blood 3-4 times a day. That’s so minor compared with everything I’d been through, that there’s no way I’m going to be taking time to post about it any further. I’m eating whatever I want, taking 0-3 tablets of loperamide, and strong enough to hike, canoe, and throw my 4-year-old into the air despite the growth spurt.

As I understand it, autoimmune diseases drain the body of energy because it keeps the immune system going at full tilt. My choice was to give up the ability to reabsorb water at the tail end of digestion or the ability to stay alive. Not that complicated. But my earlier choice, and the one that thousands of others face, is between draining huge amounts of vital energy through their colons and getting the damn things removed. I wouldn’t go so far as to say that UC sufferers should have colectomies, but I can at least say with confidence that it’s a waste of life to wait as long as I did once the meds and diets and voodoo stop working.

So goodbye, UC, it’s been, well, a pain in the ass. And goodbye colon. It was nice while you functioned, but can’t say that I’ll miss you.

March 3, 2009

Filed under: Exercise — clozach @ 00:21

Exercise has been mainly in the form of various errands…walking around The Container Store, getting to and from BART, wandering around North Oakland looking for Theresa’s workplace. Not too bad, considering I’ve gotten in a decent walk nearly every day without trying to exercise

February 10, 2009

Filed under: Exercise — clozach @ 22:52

To & from City CarShare both yesterday & today for Kaiser appts. Plus whatever walking while out on these errands.

February 6, 2009

Filed under: Exercise,Food,This Body — clozach @ 01:23

Exercise: too much, sort of.
Food: too much, or rather, too little water.
This body: can’t handle crouching.

Here’s the deal. I rented a City CarShare for an extra 3 hours beyond what I’d need to pick up Lily from school (Nana’s at a retreat, and of course, Theresa has to work, so….) I’d worked up a backlog of 7-8 errands to do, and headed out shortly after noon. It’s not exactly exercise in the relaxing sense, but I walked all around Bed, Bath & Beyond and Pastime Hardware, then drove home to quickly drop off my purchases.

At this point, I could have been intelligent and thought to bring a water bottle in the car with me. But I figured one of the other places I’d be going would have small water bottles near checkout, so I left the big Arrowhead bottle behind.

On to Long’s Locksmith, where I finally got all of our exterior door locks keyed consistently, then on to pick up Lily. Followed by the fateful decision to take her to Home Depot (which didn’t have what I was looking for…argh!), leading me to delay hydration even further.

Sipped some water when I got home, but mostly was distracted by more doing stuff: engaging with Lily until Theresa’s arrival, making them a salad for dinner, catching up with tasks on the laptop, and finally putting Lily to sleep.

Typically, I hum or sing to a bit to Lily by her bedside, then move to the rocking chair for most of the lullabies*. Tonight, I chose to stay by her to see if rubbing her back while I hummed could get her to sleep faster. Standing hunched over to do this quickly got tiresome, so I crouched down and sat on my heels for a good 5-10 minutes straight. Again, bad idea; I’m slightly anemic, I have low blood pressure, and I’m bony as all getout so these kinds of compressed positions are sure to limit blood flow in one way or another.

Final fateful decision, I stood up, focusing mainly on my sore joints as I stretched my legs straight, then held onto the frame of Lily’s bed out of habit because I sometimes get mild dizzy spells when I stand suddenly. Then I was trying to remember what I’d been meaning to do (sit on the rocking chair, but that didn’t really come clear until my thinking came into focus enough for me to perceive, in this order:

  1. Soreness in my left cheekbone, just before the ear.
  2. That I was lying on my side.
  3. Theresa’s face hovering near me with a very worried expression.
  4. A memory of a loud knock (cheek against wood floor, n’est pas?)

As is my wont, I tried my best to reassure Theresa that I was fine, resorting quickly to having her calm down so as not to upset Lily, who had been mostly asleep at the time, and probably had no idea that I’d fallen, let alone having a concept of passing out.

I am fine, by the way: no nausea, no more dizzies, and even my cheek feels fine after a good icing. Calling the advice nurse led to further consternation, but the woman was very understanding of my reticence to disrupt bedtime with a drive to E.R., and, after extensive questioning, got permission from the doctor on call to postpone my check-in with them until morning. She got Theresa and I to promise that Theresa would follow me around in order to slow me down if I fell again, but I get up repeatedly during the night to use the toilet, so T and I later agreed that I’d instead make sure to stand leaning slightly over the bed every time I get up and wait a few moments to make sure my head’s clear.

And the reason I’m peeing so much, per the last entry in Bowel Movement, is that I’ve been downing cups-full of water and an orange juice-based electrolyte drink that Theresa made for me.

* My lullabies are sometimes off kilter, because I’ve realized that the best tunes for night time tend to be somewhat mournful. Hence realtime lyric replacement to mask the true nature of No Surprises, or singing Il n’y a pas d’amour heureux in the original French so all she hears is the gorgeous melody and the soothing sibilance of the words, and not the deep expression of loss and separation at the root of the poem.

January 31, 2009

Filed under: Exercise,Food,Sleep — clozach @ 00:51

Didn’t do any explicit exercise today, but got some walking in on an errand, and did manage to spend some time sitting in the sun. Isn’t February supposed to be cold?

Got a lot done today, and didn’t even feel a major sleepiness crash like I’ve been having. I think I might have gotten nearly seven hours of near-uninterrupted sleep!

I’ll ascribe the sleep improvement to basically reducing my enteral intake to water and small amounts of OJ. Tomorrow I’ll give the homemade chicken stock I made today a try.

Speaking of food, I took my first foray into becoming one-who-cooks by making a from-scratch marinade for the salmon the others will eat tomorrow. Hope they like it!

January 29, 2009

Filed under: Exercise — clozach @ 16:28

Walked about 18 blocks, down to and around the park and back.

Felt a bit of pullin in my hip toward the end, which suggests I need to avoid getting overconfident as my energy level seems to be increasing faster than my flexibility.

Yeah, I know, stretching would help. Guess I’ll have to overcome the sense that this IV line restricts my motion.

Filed under: Exercise — clozach @ 00:19

Didn’t explicitly get out today, but was active around the house, what with the heater breaking down and walking around the yard talking w/mom & Al about landscaping.

January 27, 2009

Filed under: Exercise,This Body — clozach @ 22:49

Despite less-than-optimal sleep, I had more energy today than I can remember having in a long time. I walked more than I thought I’d be able to this soon after the hospital, I spent several hours outside the house without a diaper (haven’t had a diaper on since admission to E.R…woohoo!), and I played with Lily for long stretches in the evening rather than huddling, weakly, on the couch.

January 23, 2009

Filed under: Exercise — clozach @ 10:40

Yesterday, some walking in place and stretching. (Lazy day.)

Today so far, 60 pairs of steps running in place.

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