After my discharge from Beth Israel hospital in New York City this past Monday, I quickly flew back to California to rest and recover. The parting words from the doctor went something like:

You will probably have some pain for the next few days, but as long as it progressively gets better you will be alright. Within a week, you should probably be feeling back to normal.

With that advice, I resumed a semi-normal life back in San Francisco. For some reason, though, yesterday I started to feel almost worse than I had in several days. Throughout most of the day while I was working from the confines of my comfy bed, I noticed that my pain level was increasing. Additionally, I was pretty much in constant pain all day long — no matter what I did.

Fearing the worst, around 5pm I realized that it was best to go back to the hopsital to ensure that I hadn’t had another flare-up. Considering that the flare-up last Friday came out of the blue, I’ve been concerned that it could suddenly get worse without much warning. My thought process was to go to the hospital, get my lipase levels checked, and make sure that I am not having a relapse. If I was, I’d have plenty of time to recover in the hospital prior to my trip next weekend.

The hospital was insane. I spent approximately 2 hours in the waiting room, but fortunately my Kindle helped me pass the time. In all honesty, I thought I was going to be admitted — so much in fact that I had packed an “overnight bag” with all my essentials and called a cab.

In the past 5 months, I’ve now been to four different hospitals in three cities. That said, I feel as though I have become somewhat of a connoisseur. After my visit to UCSF last night, I was thoroughly impressed not only with the staff but also the facilities. While they didn’t have the futuristic “swipe your forehead and behind the ear” thermometers that Beth Israel has, but it was pretty nice. Very private ER rooms with high tech equipment.

With the exception of my surprisingly low heart rate that I’ve had for the past week, there was nothing found to be wrong with me. The doctor explained that it was natural to feel concerned and explained to me the signs that I should look for as indications that my symptoms are getting worse. Those are primarily: Fever, Vomiting, Nausea, and significantly increased abdominal pain.

What slightly concerned me, I suppose, was that I had none of these symptoms last Friday when I was admitted to Beth Israel. The pain I was having was similar to what I was experiencing yesterday, though it came out of the blue. By 2:00 AM, I was discharged from my second hospital in three days.

Surprisingly, today, I feel fantastic. Maybe it’s that I’m mentally aware that my body is healing or maybe yesterday was the “farewell” pancreatitis pain that my body was coping with. I’ve had some mild pain here and there, but for the most part this is the best I’ve felt since last Thursday.

My plan is to take it easy for the next few days in hopes of maybe going back to the gym on Saturday. I am missing out on the Latke Ball tonight in San Francisco (the largest young Jewish party of the year) — but so it goes. If missing tonight prevents me from missing the largest music festival on the high seas —  well, I’ll make that sacrifice.

I saw my attending physician an hour ago and she was very happy with my progression. She ordered me a clear liquid dinner which went down really really well and that means that I get a real breakfast and lunch tomorrow.

If I can tolerate them with mild pain, I will be able to be discharged tomorrow afternoon. She expects me to still be in pain when I eat for the next week, but I am already 75-80% better and am out of the danger zone.

Looks like I’ll be staying in NYC tomorrow night at a hotel. Good news!

After talking to the resident doctor today, my lipase levels are around 1100 and are still elevated. She insisited that I shouldn’t pay too much attention to the levels, though as long as they are going down — it’s more important to see how I feel. Pancreatitis is treated clincally rather than through tests (and I’ve heard that before).

That said, I have felt pretty good today. I got up and walked around a bit, cleaned myself up and shaved. After all that was done I was pretty much pain free, which is a great sign. It’s laying in bed that, for some reason, makes me in a little more discomfort.

The doctors (and the GI that the resident spoke to) follow the same school of thought as all of the other doctors I’ve talked to about pancreatitis in that I should start on clear liquids as soon as I am feeling hungry as that will not impact my recovery. Unfortunately, I am so tainted by my first case of this, and I really felt I was rushed too quickly to eat — and that may or may not have contributed to my lengthy recovery.

So, I asked her if anyone else came in here with pancreatitis if they would start me on clear liquids by now — and she said most likely, depending on how I felt. So, I might try some broth and jello for dinner tonight and see how I feel. I want to give myself a little more time to rest before I rush to eat, but I am definitely starting to get more and more hungry.

The fact that my first recovery took so long and I had such a bad case has really tainted my view of this condition and makes me extremely skeptical of everything.

On the roommate front, the guy next to me has some serious ulcers on his feet. He is extraordinarily overweight and the doctors flat out told him today that he’s more or less on a death sentence if he doesn’t clean up his act. He has 3 holes in his feet that are leaking (and smell absolutely disgusting) and the doctor said it’s not going to get any better unless he starts today to never “eat anything that tastes good again.” Regardless, he doesn’t seem to be paying much attention as he ordered two of every dessert when the nurse came to take his menu tomorrow. He’s definitely a character.

Here I am again. In the hospital with Pancreatitis. Less than 12 hours before I went to the ER, I was at my company holiday party telling co-workers that I hadn’t seen in months just how much better I was feeling and how much healthier my lifestyle has been since my recovery.

I have been consistenly exercising 5 days a week, eating a very healthy diet and I have not had any alcohol since July.

But yet, somehow, yesterday morning while packing my clothes and getting ready for my weekend in NYC and my Sunday flight back to SFO, I started experiencing some pain in my abdomen. I headed to work for a few hours and quickly realized that I should probably go to the ER.

Turns out my lipase levels were up around 6,000 again (when a normal level is ~100), which is an immediate sign of pancreatitis. On the bright side, my pain is much much more tolerable this time around and I am hoping that this is a sign that it is a much milder case.

My bloodwork this morning showed an elevated lipase level, still, but it was coming down. I have a strong feeling that I will not be on my flight out to SFO tomorrow — but I am hoping to be headed back sometime this week, in full health.

The first time, this was traumatic. This time it’s a fucking pain in the ass.

After a chaotic morning of having to truck down to Mountain View to get some blood work done for my pancreas specialist appointment on Monday, I had to come back up to San Francisco for my appointment with Dr. Tan at the Noe Valley clinic to get a second opinion on my pancreatic woes.

I reviewed my case with the doctor and went through my existing records and he felt that everything that could be done is being done — and that he’s in agreement with everyone else about my condition. He is not a pancreas specialist, but rather a naturopathic doctor that specializes in digestive and enzyme issues. Without a concrete diagnosis, he is unable to provide any necessary treatment.

He did, however, provide me with some ideas of what might be going on. For example, the fact that I still experience pain when I eat (mild pain for something like chicken broth, severe pain for something like rice) that my pancreas has not in fact healed. That there is still something wrong with it, which is likely why my GI doctor escalated my issue immediately when he heard that I had trouble eating rice and scheduled an emergency appointment with the pancreas specialist for Monday (rather than next Friday).

There are really only a few possible things that he believes could  still be causing the pancreas irritation, though each of these may have already been ruled out by a GI or Pancreas Specialist early on in the diagnosis.

These are:
1) A Obstruction in my pancreatic duct which is causing pain when any enzymes are secreted, especially enzymes for digestion.
2) Auto-immune Pancreatitis, whereby my body is attacking the pancreas because it thinks it’s a foreign object.
3) Cystic-Fibrosis, which can be ruled out  because I would’ve had this from the day I was born.

For a pancreatic obstruction, something like a gallstone still blocking the duct would’ve been visible on the endoscopic ultrasound, but there are sometimes obstructions caused by swelling and irritation of the pancreatic duct. Which basically constricts the duct in size and thus is painful when anything passes through it. This cannot typically be found through ultrasounds. This could be resolved with a surgical procedure to clear and clean the ducts.

The blood test I had this morning was to check my enzyme levels as well as a screening for auto-immune pancreatitis. If this is the case, it’s not a particularly good diagnosis as there is no clear treatment for this condition.

That said, he is eager to hear what the outcome of my appointment will be with the specialist on Monday and that his role will be much clearer once a clear diagnosis is made and he will be able to help with my recovery and rehabilitation. All in all, I felt the appointment was still productive, even though there is no clear outcome. He thinks seeing the specialist on Monday is the best idea and to update him as it goes.

I had my latest doctor’s appointment this morning, and it didn’t go nearly as planned. Going into it, I had expected one of two outcomes:
a) I’d be put on enzyme therapy, my feeding tube would be removed, and I’d be free to start eating food again.
b) I’d be put on enzyme therapy, my feeding tube would NOT be removed, but I’d have a follow-up appointment scheduled for another week or so if all goes well.

I wasn’t expecting a third possible outcome: none of the above. More specifically, or vaguely if you prefer, the outcome was:
c) I don’t know what’s wrong, but let’s just wait 2 more weeks and see if it goes away.

If this was the first time I’ve heard this, I’d be ok with it. Instead, I’ve heard this same line pretty much every time I’ve seen this doctor for the past two months. I probably could’ve had my endoscopy scheduled for a month ago and the same result mild scarring would’ve been found. At that point, waiting two weeks to see if I got better would be an acceptable and viable option. At this stage, however, I am not going to continue to just idly wait while nothing seems to be improving. Especially if the only thing wrong with me is that I have scar tissue on my pancreas that is causing the discomfort — when was the last time you saw a scar heal itself in two weeks?

In addition to this recommendation, I’ve been given a lower dose of pain medication and instructions on how to switch from the dilaudid to this new medication. Additionally, I’ve been given two enzyme pills which are to be taken during meals which are “not expected to help, but it can’t hurt.” I was also told to continue to try to eat regularly throughout the day and try out different bland & soft foods to test out my stomach.

My doctor’s fear (and I’d agree that it is a concern) is that i’ll be taken off the feeding tube and my weight will drop dramatically as I won’t be able to eat enough nutrients and calories to sustain myself. That said, I would’ve liked some kind of encouragement or concrete understanding of what my next steps are. Instead, I got a confused look and a “let’s give this a try. See you in two weeks.”

That said, I’ve decided to go on my own. I’ve found a new doctor in my neighborhood that is requesting my medical records tomorrow and will be scheduling an appointment with me shortly after they receive them to discuss my options as a second opinion. I’ve also went out and purchased a variety of more exciting foods that should encourage me to eat (baby food, apple sauce, rice, etc.) and once I get my enzymes, I’m gonna cook me up a “nice” dinner.

So, this is where things stand. We’ll see how the enzymes work along with this new food. I’ve turned down my feeding tube by 10 mls to help make me hungrier (and I’ve been hungry all day, let me tell you). So, wish me luck. I’m sick of sitting around waiting for something to happen and I’m going to make something happen (for better or worse, I guess).

This past Wednesday, I trucked into El Camino Hospital to get an endoscopy to find out what the heck is going on down there in my pancreatic region. The procedure was quicker and more painless than I had remembered from the last time I had one of these (10+ years ago) and I’m scheduled for an appointment on Wednesday to discuss what the results mean.

Basically, they found that there is some permanent damage to my pancreas. This likely means some pretty dramatic lifestyle changes from here on out, which is to be expected. I think the biggest question that comes to mind, however, is how long I may have had pancreatic issues.

I’ve been struggling with digestive problems (lactose intolerance among other things) for over 10 years. I remember back in Boston just after I graduated college, that I had spent several months going to a gastroenterologist going through various tests (colonoscopies, endoscopies, barium swallows, and other fun things) to try to identify the cause of these issues.

Nothing was conclusive, and the doctor said it was likely just a bad case of GERD (acid reflux) and we’ve left it at that. The daily doses of Protonix have helped keep the stomach pain to a minimum over the years, but this case of pancreatitis very well may have been the last straw.

I’m obviously speculating here. What surprises me the most about this condition is that it’s most likely linked to alcohol. In my case, over the last 10 years, I rarely drank over the medical recommendation for alcohol drinks for a male (14 drinks/week). This does not necessarily mean that the alcohol could not have impacted this. If I had a pre-existing condition, even small amounts of alcohol may have made this worse. This in combination with my high cholesterol could very well have led to gallbladder issues and other digestive problems.

That said, regardless of what got me here — it looks like I’m going to be managing this condition for the rest of my life. I will most certainly know more once I talk to the doctor on Wednesday. I’m just hoping for some kind of path to short term resolution of the immediate symptoms (ie. NOT EATING) and being able to get back to work and my life. I miss being around people and this entire situation is wearing on my patience.