Billy Boloby's Cyberlibrary

Surgery Part 8: No Place Like Home

Posted on August 12, 2013 by boloby

You gotta be kidding me — this can’t be happening. OK, so maybe it can, but I’m accepting it only with great reluctance. After four days of feeling relatively normal following the paracentesis, my insides were acting up on the morning I was set to be discharged. It was my final day. I was supposed to be in the best shape since my operation, yet it was 8 a.m. and I was back to feeling bloated and trying to muster the energy to get up. And though my arms were mostly back to their normal, scrawny size, my legs and feet (and my long-suffering man parts) were still pretty swollen.

When I finally did get on my feet, I didn’t feel as limber as in previous days. Now, I was OK with having a little discomfort; after all I’d been through, my tolerance for pain had definitely increased. What worried me was that I started feeling queasy, the same way I felt before that horrible incident on Thursday.

This was the absolute worst time for that to happen. Continue reading →

Posted in Crohn's Disease, General Disease, Primary Sclerosing Cholangitis, surgery | 1 Comment

Surgery Part 7: ‘Just Gas’ My Ass!

Posted on August 8, 2013 by boloby

“Omigod, omigod, omigod … No … stop!”

Yep, that was me again, in a scene similar to the first bed transfer hours after my operation. It was Thursday afternoon, a week and a half later, and I was in the imaging lab about to undergo an MRCP (scan) so the doctors could look at my bile ducts. They wanted to see if the surgery had caused any problems, which had been a concern going in. But first, I had to get onto the MRI bed — a flat, rock-hard slab of back-breaking torture.

I was cursing and screaming at the poor lab techs, who were desperately trying to Continue reading →

Posted in General Disease, Primary Sclerosing Cholangitis, surgery | 3 Comments

Surgery Part 6: Ouch, Again

Posted on August 6, 2013 by boloby

At the very beginning of this story I described waking up on the morning of my surgery: “I was frozen. Stuck. The pain wouldn’t let me move.” That episode lasted about 10 minutes, but it felt like an hour. Well, the same thing happened when I woke from a deep sleep at 4 a.m. Sunday, six days later. OK, so it wasn’t exactly the same; instead of 10 minutes, it lasted about three hours — and the pain was much worse.

It felt like the usual gas pain but a million times worse, like a porcupine was inside me and its quills were continuously expanding, poking into my guts. I really can’t stress enough the paralysis I felt. I thought about calling the nurse, but Continue reading →

Posted in General Disease, surgery, Uncategorized | 1 Comment

Surgery Part 5: Movin’ On Up? Not Quite

Posted on August 4, 2013 by boloby

Getting weighed before leaving the ICU. “It’s all water weight!”

Things were looking good on Saturday. I was told I’d be moving to a proper room later in the day, and the doctors were very happy with the rate of my recovery. They didn’t tell me this, though. I just had to assume it was the case considering the giant tray full of food they ordered for me.
Continue reading →

Posted in Crohn's Disease, General Disease, surgery | Leave a comment

Surgery Part 4: Eye See You

Posted on August 1, 2013 by boloby

Hamming it up during my stroll around “the block.”

“Nurrrssse! … Nurrrssse! … Nurrrssse!”

I woke up Thursday morning to the sound of silence, finally enjoying having my very own room in ICU. The door was closed, and I was flipping through channels on the television, something I didn’t have in the recovery unit. Then the nurse came by, and I forgot to ask her to close the door when she left. That’s when I first heard Melissa.

“Nurrrssse! … Nurrrssse! … Nurrrssse!”

This was her refrain, which she repeated every couple of hours, not stopping until someone answered her call. At first, I felt really bad for her, assuming she was an elderly woman in a very frail state, judging by the sound of her voice. But after maybe the fifth or sixth time, I realized there was something else wrong with her.
Continue reading →

Posted in Crohn's Disease, General Disease, surgery | 1 Comment

Surgery Part 3: Wednesday, Hump Day

Posted on July 25, 2013 by boloby

Finally, I managed to get out of the bed and walk to the chair (albeit with lots of help).

Finally, I managed to get out of the bed and walk to the chair. I needed a lot of help, but it was a big step forward for me. (Click image for larger version.)

Wednesday, so-called “hump day” — the middle of the workweek. At the time, it seemed like I might be making it over the hump. The day started off a bit better than the two previous days. I wasn’t in as much pain as I was Tuesday, and for once my interaction with the hospital staff wasn’t limited to me complaining.

“What are those things on my legs called?” I asked the nurse, Monica. “They really help and actually feel kind of nice, like they’re massaging my calves.”

“They’re called SCDs — sequential compression devices,” she answered.

“Hmm… I’d rather just call them ‘those leg things.'”

For the first time, I felt well enough to have an actual conversation. Continue reading →

Posted in Crohn's Disease, General Disease, surgery | Leave a comment

Surgery Part 2: Ouch — That Hurts!

Posted on July 25, 2013 by boloby

I had to exhale as hard as I could 30 times into this mask. (Click image for larger version.)

I was lying on the gurney, awaiting surgery, and then nothing — everything went black. Next thing I knew, I was in the recovery room, surrounded by nurses and other hospital people. They saw my eyes open and asked me how I was doing. I did a quick assessment and realized I had a nasogastric (NG) tube coming out of my nose (through which stomach contents are expelled), a catheter for urinating, and an assortment of IVs and other things attached to my arms and hands (in addition to my PICC line).

But what I was most aware of was the pain. I was in more pain than I thought possible. Somehow I communicated this to the nurses, between grunts and groans, and they explained to me how the morphine pump works; I could get a dose once every 10 minutes. Over the next 30 minutes, I got three doses, and I felt absolutely nothing from it. Just more pain.

It was at this point I realized my worst fear had come true: All those doctors lied to me. It turns out they didn’t know what they were talking about and just wanted me to shut up and stop doubting them. If they thought my polite questioning was annoying, well, I’d show them exactly how annoying I can be. But only after they put me through the ringer.
Continue reading →

Posted in Crohn's Disease, surgery | 1 Comment

Surgery Part 1: The Day Before/The Day Of

Posted on July 22, 2013 by boloby

For years I’ve been battling Crohn’s disease as well as a rare liver disease, and currently am on the liver transplant list. On June 24, 2013, I underwent surgery for a total colectomy, in which my entire colon was removed and a temporary ileostomy was created. The surgery itself went well, but my post-op recovery had complications and was the most painful and challenging 15 days of my life. I recounted my “misadventure” in a series of blog posts, starting with the one below.

I was frozen. Stuck. The pain wouldn’t let me move. I had just woken after falling asleep lying on my left side instead of on my back, which I normally do. All that time asleep had stiffened my lower back, and the moment I tried to roll over, a lightning bolt of pain struck and I let out a gasp. My back had been giving me problems for several months at this point, but this was worse than ever. In fact, I couldn’t remember the last time I was in so much pain. However, this was like a pin prick compared to what I was about to go through in just a few hours. Continue reading →

Posted in Crohn's Disease, surgery | 1 Comment

Forming

Posted on July 20, 2013 by boloby

(Note: This is another piece I wrote before my colectomy. It’s long, but that’s because it’s a comprehensive look at the origins and purpose of the Boloby character.)

How I Became An Alter Egomaniac

By Jason Budjinski

Some people cope with chronic illness by relying on others, and I’m no exception. My “other” just happens to be an alter ego I created named Billy Boloby.

The denim-clad rocker types in the front pogoed up and down, drunkenly toasting champagne and splashing it all over the front of the stage. Some got on my white suede shoes, but I didn’t mind. The entire place was electric, and I was too busy feeding off that energy to worry about minor annoyances.

It was Dec. 31, 2003, and my band, Billy Boloby, was headlining the annual New Year’s Eve party at Palm Beach County’s premier alternative nightclub, Respectable Street. As the band’s frontman, I tried to make every performance as engaging as possible — a mix of dancing, pratfalls and general spontaneity.

That’s what Billy Boloby was known for, and Billy Boloby was what I was known for — and known as. People expected to see me fall off the stage and roll around. It was one of Boloby’s more salient characteristics, and something the local press always mentioned when writing about the band.

That was all many years ago.

When the phrase “fall precaution” was most recently written in reference to me, it wasn’t in a newspaper’s A&E section filed under “music.” Rather, it was on a hospital room dry-erase board, under “safety alerts/special needs.” And the name read “Jason Budjinski.” Because at that point, Billy Boloby was gone. Whether he was dead or on life support, I wasn’t sure. I just assumed the worst.
Continue reading →

Posted in Crohn's Disease, General Disease, Music, Primary Sclerosing Cholangitis | Leave a comment

Idiot’s Guide to Chronic Illness

Posted on July 19, 2013 by boloby

(Note: I wrote this before my colectomy, which I underwent on June 24. I’ll post pictures and thoughts on my experience soon enough. But I wrote this before I had any idea of how difficult my post-op recovery in the hospital would be. I can’t stress enough how much pain I went through, and how difficult it was to do everything the nurses and doctors wanted me to do, given my condition. [In a nutshell: they didn’t know enough, and I paid for it with 11 days of agony.] Anyway, during my bleakest moments, I thought of my “Idiot’s Guide” and realized it wasn’t any help for that situation. So I will just note that it’s a guide for everyday life, not for when you’re in the hospital.)

Idiot’s Guide to Chronic Illness

By Jason Budjinski

It’s no coincidence why the word “patient” has two meanings. Just ask anyone with a chronic illness: It takes long-term patience to be a long-term patient. Besides the frustration of having an illness without a readymade cure, there’s all the other stuff you have to deal with: hurdles (financial), hassles (doctor’s office, hospital, pharmacy), headaches (insurance) and hardships (physical and mental). Welcome to the “Four H Club.”

I’ve learned a lot about being a “patient patient” over the past 14 years. In 1999 I was diagnosed with two chronic illnesses: primary sclerosing cholangitis (PSC), an autoimmune disease of the bile ducts that eventually leads to liver failure, and the gastrointestinal hell known as Crohn’s disease. Both conditions have put me on track for surgery, with a liver transplant and colectomy currently on my medical to-do list.

As a long-term patient (a “lifer,” as it were), I’ve learned how to make daily existence less about coping and more about living — the way things should be. Even though my Four H Club membership is for life, it’s not all my life is about. So for anyone new to the club, I offer my “Idiot’s Guide to Chronic Illness”:
Continue reading →

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