johnny ur

Update - Sunday February 22nd, Drained Edition

I'm moving much slower today, two days after having an external drain placed into my gallbladder leading to a bag strapped to my leg. The Amazing Adventures of BagMan!! have begun. I've long dreaded the day I'd have to wear an external bag to drain my internal fluids. I've had ulcerative colitis since 1996 and the possibility always existed that someday my large intestine would have to be removed and I might have to wear a pouch to collect fluids. But truth be told, it's really not as bad as I expected it would be... yet. It's only been two days. Talk to me in a month. And by then, we might be able to remove it, since this is not a permanent solution.

But I'm getting ahead of myself... Let's back up one week.

While trying to relax in Florida, I woke one night with sharp pains in my right abdomen - the region of the gallbladder and liver for those not keeping score - and went to the hospital the next day. One CT scan later, they told me I have an inflamed gallbladder (geniuses, these doctors, I'll tell you). That's unfair, I guess - if I was going to be there permanently, they'd probably do something to help me. But since I was scheduled for the a flight back to NJ the next day, they just gave me some percosets and wished me luck getting on the plane and getting home.

Fast forward to a few days ago and Dr. Ben-Menachem scheduled me for another ERCP procedure in conjunction with an Interventional Radiologist who would drain my gallbladder externally and then hopefully lead Dr. Ben-Menachem's stent through the cystic duct. Unfortunately, the cystic duct is still too occluded and according to Dr. Ben-Menachem, there was way too much "junk" in the gallbladder which was causing all the pain - stuff that would have easily have caused a serious infection had it gone untreated.

So now, pain from the gallbladder is gone. Temporary pain has taken its place at the site of the incision. I feel inhibited from using my abdominal muscles as any quick contraction (coughing, laughing, squeezing) causes a sharp pain. This should relent in a few days (with the help of the percosets) and life will return somewhat back to normal (sans showers which are now off-limits to avoid getting my incision dressing wet).

Future? Not sure. Gallbladder could be removed (many complications associated with that right now). A stent in the cystic duct is a possibility if chemo helps shrink the tumor cells around it. For the time being, I'm learning to live with this bag and trying to cope with my girlfriend going away for a few weeks to visit her friends and family - leaving me completely high and dry as far as taking care of myself. The nerve of some people, right? Eh, I'll just take some more percosets.

RPLCE my ERCP, PLSE

Ok, I lied. I don't have an ERCP. ERCP is a name of a procedure which stands for Erase Records Control Protocol. It's a secret government program to brainwash all of it's citizens. OK, that's not true either. ERCP really stands for Endoscopic Retrograde Cholangiopancreatography which might as well mean brainwashing for all I know. OK, that's strike 3. Endoscopic in my layman's terms is sticking a videoscope down through the mouth and the Cholangiopancreatography means the doc is going to look at the bile ducts (cholangio-) and/or the pancreas. I don't know why the word Retrograde is in there - personally, I'd feel better if they went Professional Grade or something like that. But what's done is done.

So the first time I had an ERCP was back on Christmas Eve to place a stent in the cystic duct to drain my gallbladder. Though leaving me with a slightly irritated throat, it was relatively painless and relieved the majority of my discomfort. 6 weeks after that first procedure, I needed to get the stent replaced. Since it is a plastic and not metal stent, it is slightly weaker but more easily removed.

I was knocked out by the Happy Juice on Thursday morning and when I woke the doctor had both good and bad news for me. The bad news was that he could not replace the stent, he could only remove it because the cystic duct has become completely occluded (closed off) from cancer cells - which he was quick to note, could be living or dead.

This is not a horrible thing. First, the body can survive without the gall bladder which serves as a reservoir for extra bile produced by the liver. The gall bladder can also live on without pushing bile through the cystic duct. Second, because the duct i closed off, nothing can enter nor escape so theoretically, it should not swell anymore. If it does, there are other drainage options available to me before it needs to be removed. We'll wait and see how things develop.

Doc (Dr. Tamir Ben-Menachem) was able to put a stent into my bile duct that leads into the liver which in many ways is more important because I was showing the very beginning stages of jaundice - slight yellowing of the eyes, a bit of itching in my feet. Too much of that would lead to poisoning of my blood because of bile back up. So, all in all, not a bad trade off.

However, the procedure may have left me with a bit of an infection. They gave me an antibiotic to fight it off but I was still running a fever over the past few days. Luckily they upped the dosage and it's been under control mostly, not rising over 101 - which would have triggered a return trip to the hospital for IV antibiotics.

I'm hoping that everything remains under control for the next few days. I'm going to escape the winter blues on Wednesday for a few days with a trip to see my aunt and uncle in sunny Florida. I'm sure sun and fresh air will be great for my health and morale. Even today's 50 degree weather was a welcome respite. Keep it coming, sun, keep it coming.

Update Feb 1

The past 3 days have been a complete turnaround from Tuesday and Wednesday's hole of depression. A friend of ours has a hot tub that they allowed me to use. On Thursday, I went and sat in the hot water and it felt ok, but my body and mind were so battered and tired - I really only enjoyed it superficially. The very next day, we went back and something in me snapped me around and I was able to smile at the blue skies and the sunshine - things that I physically was unable to do the day before.

Over the weekend, I had friends visiting and although if asked, I would have said I was too tired to see them, when they were actually there it was like a shot of rejuvenating energy. It was very helpful. As I do every night, I hope the trend continues upward and every day is better than the previous.

Now, if someone could just tell the sun that we're done with winter here and we need some heat...

Also, Bruce Springsteen rocked the Super Bowl. Anyone who disagrees is no longer my friend. Seriously.