Signing out

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.

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.

Blood sugar: 116.

Blood sugar: 123.

Blood sugar: 129.

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.

Blood sugar: 126.

Blood sugar: 107.

Blood sugar: 126.

Blood sugar: 132.