And one more thing

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.

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.

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.

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.

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!

Sprout Ball?

It’s been weeks since my last hospitalization…and my last post, come to think of it. Though my metabolism seems to be out of balance still, inasmuch as I have aches in many of my joints and muscles, I’ve been feeling pretty much normal! I even spent about 6 hours putting together Lily’s new ‘big girl’ bed from IKEA the other day with no drastic consequences.

As far as food goes, still no blockages (fingers crossed). I’ve tried small amounts of all the danger foods—mushrooms, popcorn, etc. While the mushrooms and some other fibrous foods go through pretty much undiminished, chewing well seems to get the chunks small enough not to matter. Perhaps not eating a lot at once also helps. You can see the strangest output I’ve had in the photo below, taken several weeks back. I attribute these little marble-sized balls to a bunch of sprouts I had on a sandwich the day before. They passed with a sort of satisfying pressure through my stoma and were roughy the consistency of play dough. When squished inside the ostomy bag, they turned from the dark color shown here to a translucent green, hence my sprouts theory.

The only other news for now is that I’ve ordered some sample ostomy supplies from Hollister. Since Sammy’s now about as small as he’s likely to get at 1 1/8″ diameter, I’m ready to switch to a pre-cut adhesive wafer. Will try to be more diligent about postings when they arrive. Oh, and my mom gifted me a month of training at the gym up the street, so hopefully I’ll be able to get those aches and pains to disappear as the trainer pushes me to regain strength and flexibility faster.

Be Well,
Chris

A Sure Sign of Healing

Doing a little spring cleaning today, I found this under the pile of brushes and combs I keep in the medicine cabinet. And I gotta say, I really don’t miss having loads of hair fall out every time I brushed, shampooed, or just ran my fingers across my scalp!

P.S. For the anatomically curious, photos of my excised organ are finally up in this post as promised.

A Clean Start

Woohoo! No more PICC line!

I got permission yesterday to have the Peripherally Inserted Central Catheter taken out of my right bicep. To tell the truth, having that thing sitting there idle wasn’t really bothering me…except that it tended to dissuade me from taking adequately frequent showers since it’s so challenging to keep dry. It was completely painless coming out, even with a student nurse doing the pulling. I’m free!

Now excuse me while I go work on my hygiene, with maybe a heretofore forbidden* soak in the tub.

* I was actually able to take baths up until that last hospitalization when the cleaning staff absconded with my bath-compatible rubber sleeve, leaving me to make do with plastic bags and tape.

Not So Fast

On Sunday, the day after my initial discharge from the hospital, I started feeling like my pain meds weren’t helping. Theresa, bless her heart, drove all the way out to SF Kaiser to pick up a prescription for oral dilaudid, but just before she left the drama started. Having finally pushed past the pain and weakness I’d been feeling, I got out of bed, put on some pants, and went into the living room to try to be social. I’d been feeling vaguely nauseous already, so when one of the cats used the litterbox without kicking litter over their business, the smell sent me over the edge and I ran to the kitchen sink to vomit.

That was the beginning. By the time Theresa returned from SF with the new meds, I’d thrown up twice more. By the fourth time, Lily was starting to freak out and it was clear that it was Emergency Department time. (Why do these things always land on weekends?!)

In the ED, my body decided it was sick of being well hydrated and started emptying out liquid into my ostomy bag at a prodigious rate. And for some reason, I started getting hiccuping fits which by night time became uncontrollable. I tried anti-nausea drugs for the hiccups, but in the end it was Dilaudid that saved me. When I couldn’t get an injection of that opiate right away, the fits would go on endlessly…20-30 minutes in some cases.

I’m much better today, though my chest is sore from the fits. Being back on Dilaudid and clear liquids has gotten me back to a state where passing material through the stoma no longer causes sharp pains. And it’s my birthday, so I guess I’ll take this improvement as a gift.

Tadaa!

The disappearing act is complete, and I no longer have a large intestine. Details and gory photos to follow, but not now. I shouldn’t even be awake at this hour, but having been woken by the nursing staff for another in an endless string of vital signs checks, I thought I’d at least check in to say that it’s all going better than I’d hoped so far!

Not to Complain…

Is it complaining if you only say it once?

Though it might smack of pity-mongering, my actual goal for this list is to offer a glimpse into my current reality for those who might be wondering, “How could anyone gladly go into something so life-changing and irreversible as colectomy?” I’ll start with the obvious symptoms.

Welcome to life before surgery.

• All of my “solid” waste is liquid, which I guess isn’t so bad, in itself.
• I get the urge to void said liquid between 10 and 20 times per day, resulting in a very sore and, truth be told, smelly nether region.
• There’s often gas mixed in, which generally results in a temporary feeling of bloated “lower nausea,” followed by my often futile attempts to coax the gas out by slow diaphragm breathing and contorting my colon into various positions relative to gravity. The latter sometimes involves kneeling on the bathroom floor with my ass in the air, then rolling onto either side. It works! But then there’s the…
• Cramps. Half of the time (or more, when things are really inflamed), everything gets blocked in by uncontrolled squeezing. It’s the same type of squeeze you use when you’re pushing out the last of a big, real poo. Only there’s nothing to push out, so I guess the body never gets the signal to stop squeezing. Lots of weird breathing voodoo to try to control this one.
• Though I can sometimes tell when something’s coming ’round the pike minutes to hours in advance, I can’t actually choose when to eliminate. Premonitions don’t equal readiness. And when it’s ready, the advance warning system’s suddenly on the fritz, which is to say that I get between 15 seconds (when it’s really bad) and 2 minutes (when it’s super mellow) to sit with my butt exposed to some toilet water. The wages of tardiness is a big embarrassing mess.
• I wear (and soil) diapers to leave the house. I’ve read someone’s comment online about how she wasn’t about to “give in” and wear diapers, and how fortunate she felt having made a whole morning commute without an accident. Bullshit. If you have an accident on your morning commute, you’re going to be far more embarrassed than if you admit to yourself, your family, and maybe your doctor that you need max absorbency adult diapers. And go with the Walgreens brand if you can. Depend use stickers instead of velcro and are plastic all around, which gets hot and sweaty fast!
• My hair has thinned considerably. Though it’s no longer coming out in clumps since I started putting on weight again, it’s still responds to a brush with a poufy wave that would only have me proud if we were still in the 80′s. And only months ago, I had thick, enviable hair.
• I get random chills, sometimes so intense that my teeth chatter. Yet at night I get so hot that my hands feel swollen. If I manage to sleep past 8am (oh heavenly if!), I often get cold sweats such that my sheets soak through.
• Not that it bothers me on its own, but it’s worth mentioning blood loss as a cause of many of the other complaints. There’s visible blood at least half the time I visit my friend Mr. Loo, and there’s probably plenty I can’t see mixed in the rest of the time. As a result, my HGB (a measure of hemoglobin, itself a measure of the blood’s oxygen-carrying capacity) has been stuck at 9.3 or below for months. Normal is 13+.
• I’m tired, as in sleep-deprived. On a good night like last night, I’m up and on the toilet 3-4 times between falling asleep and morning. Usually it’s more than that. If it’s a lucky day, I get a nap in as a meager compensation.
• I’m tired, as in physically weak. My muscles atrophied during my rapid weight loss, and the high bathroom frequency, sleep deprivation, and joint pain (see below) all make it difficult to gain any of that back.
• I’m tired. In case I hadn’t mentioned it. It’s hard to really get this point across. Sort of like how parents of a newborn can’t really make their childless friends understand. On the surface, I look like I can function, but it’s all a ruse.
• My thinking is hazy. Not all of it. Clearly I can still write a reasonable sentence, for example. The problem areas are planning and motivation. I have difficulty starting small projects, even ones I know I can do despite how I feel. One might just say I’m being lazy or irresponsible, but I can’t accept that, because it means that Theresa’s suffering continues after I heal from surgery.
• Speaking of which, my marriage is on the rocks. T and I have had our share of difficulties, including earlier difficulties related again to my colon problems. Nonetheless, nothing has strained our relationship more than having me sitting on the couch for most hours of the day while she works almost constantly to either make money, keep the house in order, or take care of Lily. Not that I’m completely sedentary, but…well let’s segue into complaints of personality
• Another brain-related problem: I have poor concentration. My body sends signals of discomfort or alarm on a near-constant basis, which makes it difficult for me to sustain focus for long, which in turn makes me less than apt at playing with Lily, and somewhat depressing to be with for Theresa
• I appear dour. Even when I’m in an optimistic mood, I still can’t smile without thinking about it first. My face has become accustomed to internal vigilance, and thus defaults to neutral or pained. Needless to say, it’s hard for those around me not to take it personally at times.
• I smell bad. Though I’ve got a rubber sleeve that I use to cover my TPN dressing in order to shower or bathe, the sleeve is imperfect. The more I get in the water, the looser my dressing becomes, increasing my chances of an extra visit to Kaiser to get a dressing change. Plus standing in the shower is exhausting in itself. So I shower about twice a week…and I stink.
• My hands shake, which is probably a combination of anemia from blood loss and wasted muscles from weight loss. And maybe some malnutrition thrown in, to boot, although hypothetically the TPN should take care of that angle.
• I have a bright red rash on my neck which the doctors speculate is colitis related…and why not? As a fun bonus, when I cramp on the toilet, the blood swells in my neck causing the rash to feel hot and raw like a sunburn.
• Both of my arms have tennis elbow. In fact, many of my joints are currently on the fritz: both knees, the joints of my fingers, esp. thumbs, most of my vertebrae, my left hip, and both ankles. My left ankle hurts enough that much of the time I walk with a limp. This, again, is considered unsurprising given colitis.
• I dislike myself. Not in a depressed or neurotic way: please don’t worry that I’m considering suicide. Rather, I see my behavior and my aspect as others do, and it’s not what I want to see. I guess you could say that I’m not considering suicide, but rather murder: I’m going to murder my colon, which will kill the current “me” in the process, leaving a healing body from which to start anew.
• Apropos of dislikes, I dread leaving the house because it means a high likelihood of defecating standing up. Even with a diaper, it’s uncomfortable and requires lots of baby wipes to clean up. And the whole process is somehow exhausting

If you can imagine any of this, take that imagining and expand it exponentially as the sum is greater than the parts. Even without the major issues like social problems and pain, the combination of minor complaints leaves me with hundreds of missed opportunities every day. No biking. No wrestling with Lily. No hikes or swims or job interviews or home improvement projects or…the list is endless.

So if you, or someone you know, can relate to the list above…well first of all I’m sorry for what you’re going through. Bloody hell! But please, if, like me, your life is no life at all, please don’t wait as long as I did to recognize that losing your colon can be a small sacrifice in the final battle which will be colitis’ last stand.

Diarrhea, your days are numbered!

Just did a mental count, and assuming a full 16 bms/day, I’ve got less than 50 bathroom visits to go between here and the sweet bliss of general anesthesia. Things’ll be a little uncomfortable in new ways after that, but the sun will be rising.

Solid, well-formed, no cramping or blood.

No, not really. Wet, crampy, and barely-controlled, of course.

This is the final entry in my log of bm’s. It’d be more accurate if I stopped it post-surgery, since I won’t in fact have another bowel movement for months, if ever again. But I’ve settled into a pretty predictable pattern, and there doesn’t seem to be any benefit left to doing these entries. Plus there’s the math: it takes me between 2 and 5 minutes for every post, averaging about 16 bm-categorized posts per day, with 7 days remaining till surgery. That’s between 224 and 560 minutes spent not obsessing about shit…or very roughly 3-9 hours.

I remember there being something very satisfying to sitting down and, after a few minutes of relaxed waiting, completely emptying one’s bowel with the emission of a long, solid log. For awhile, I thought of it as a loss: I will never have a satisfying shit again. And isn’t that always the way? You don’t get a chance to see the last one…it’s always a memory. It’s never, “this is the last time I’ll run a mile,” or, “I’ll never see her again after today.” Time goes by, and it slowly dawns on you that, whenever the last one was, it went by without fanfare, unnoticed.

Disease sends one deep into such profound realization. Then you get yanked back to reality, where the choices are holding on to today’s misery or letting the equilibrium of “normal” settle in a different place than you remember. It may be silly to have ever mourned my last, forgotten solid poo, but it would be sillier still for me to consider holding out longer just to get it back.

Truth be told, I’m so sick of waste coming out my ass, I’m still very hesitant about trying a J-pouch. Fortunately, the end ileostomy with retained rectum will allow me as many months as I want to opt in or out of that choice.

On a different note, I realized today that, as optimistic as I may sound about the future, there’s some grieving that needs to happen about the past. Compared with the past year, the future does, indeed look bright; there’s nothing to grieve, really, unless it’s lost opportunity. Still, in order to completely embrace my differently-routed future, I’ll need to take some time to look back on what I was before this endless flare-up, and perhaps even before ulcerative colitis, shed a few gulping-for-air tears, and say goodbye.

I’ve been on the verge a few times, so it should come any day now. Sweet release.

Just to spice things up, this benign-but-ugly rash dropped in a few days ago, a patch below each ear. Haven’t had a chance for a doc to look at it in person, but based on a phone consult, it shouldn’t worry us so long as it doesn’t itch or ooze.

So i’m not worried, but somehow it seems fitting for this body to remind me one last time that it’s not happy with how things have been going. Well, boy, do I have a surprise in store for it!