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!

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.

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

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

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.

My new-found ability to leave the house on a moment’s notice without worrying about whether or not I’ll shit my pants should have me elated. I’m grateful for the change, but somehow it’s left me feeling only neutral. Still, that’s an improvement over the fear I used to feel.

The moments of near-joy I have felt—while walking past flowered gardens on a sunny day, say—tend to quickly morph into a choked-up, teary feeling that, these days, seems just below the surface most of the time. Just looking at my daughter* asleep in bed is enough to bring me to tears. I think it’s partly a deep and overwhelming sense of relief, but also regret for what I’ve put my family through, fear of not being able to become the husband and/or father that Theresa and Lily need, and an overall confusion of self identity.

Though the flare-up that led to surgery started only (!) one year ago, my loss of self has been nearly 8 years in the making. In 2001, I started flaring during Theresa and my honeymoon. When I returned, I finally agreed to try sulfasalazine, a common maintenance drug for ulcerative colitis. Instead of helping, the drug caused a massive attack of vomiting and diarrhea that lasted for hours and landed me in the emergency department. There, Theresa got to witness one terrifying moment after another: me getting covered in diarrhea on a gurney; me passing out—eyes rolled back till only the whites showed—when a botched attempt to start an IV created a bright red pool covering the snow white pillow under my arm.

After a 1-week stay, I was released, only to return to ED with an intense, crouch-inducing pain in my left lung. Eventual diagnosis: spontaneous pneumothorax, or air around the lungs, i.e., collapsed lung for no clear reason. Again, terror (and guilt) for Theresa, including my morphine-addled cries of, “I don’t know why this is happening,” after Theresa had given permission to the doctor to punch a hole in my chest with a one-way valve that he hoped would get the air out without the need for surgery. Ow. And poor Theresa had had to make the call since the pain and morphine made me unable to understand the situation. Oh, and the icing on the cake, hospitalization through September 11.

Ten more days, and I was released, this time with 3 days at home before once again returning to emergency. Though Theresa and I suspected a drug reaction, the GI doc disagreed, and so I took his advice and, on that third day, tried another dose of sulfasalazine. Three more days in the hospital, for a total of 3 weeks. The cost, which was fortunately covered by insurance, came out to well over $10,000! But that was just the financial cost. It was also the beginning of my loss of self.

It’s painful to realize how long Theresa has had to watch me lose myself. In a sense, me and my disease caused the honeymoon to be over before it even began, and our relationship has been increasingly strained ever since. The big D word has even come up, though I hope that the possibility of divorce is now receding into the past.

I think what’s most difficult now, what keeps me on the brink of tears, is that it took nearly three decades to build me into the cheerful, energetic person I was when Theresa met me; how long will it take to build a reasonable equivalent from scratch?

This week I plan on visiting at least one or two of the various Buddhist institutions in town. I think I need to steep myself in compassion, and that’s something that, on my own, hasn’t been coming easy.

* “…beauty is the ache of mortality…” —Kim Stanley Robinson in A Short Sharp Shock. And so the eventual, inevitable loss of my daughter fills me with the ache of her beauty.

Yes, Sammy is his name. Though it’s hard to tell through the plastic, this little guy looks strikingly similar to a retracted sea anemone…the kind you’d find in a Pacific tidepool. This is actually more reassuring than you might think as it helps me avoid thinking that my insides are out. Instead, I like to think of Sammy as a benign (albeit messy) space creature that’s decided to hitch himself on for the ride.

As you can see from the shot with my fingers in it for comparison, Sammy’s about 3cm across and about half that tall. The last photo gives a very rough idea of where the incisions were made: since these photos are from the day after surgery, the big bandages are still on, hiding the details.

Oh, and two more things: first, I decided not to include pics of the urinary catheter. Hope you don’t mind. For the record, incidentally, having a catheter inserted is totally not a big deal, it just sounds painful and wrong. Second, my ostomy nurse says that surgical residents tend to go overboard in protecting the skin around a new stoma. So don’t get grossed out by what looks like thick mucus surrounding Sammy, it’s just skin barrier paste.

Update: I was mortified to review this post and find that one of the shots actually showed my junk. Must not have noticed that on the smaller iPhone screen from which I posted the original. Anyway, sorry if anyone was offended. The pic’s down now.

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.

They’re not pretty. Caveat lector.

He went a step further, actually, and took pictures of the colon both immediately after excision and after slicing it open to show the diseased interior. The results speak heavily in favor of this final decision to have the colectomy: what a mess!

Update: here they are. The top two pics are of the colon intact; the gross-looking stuff is just fat. Glare from the lighting makes it difficult to clearly discern the subtler signs of colitis in the bottom pair of photos, but those black spots are definitely worth a shudder.

Good riddance, Joe the Colon! (That’s what I called him back when he was making me go to the bathroom 20+ times a day. A true pain in the ass.)