Giving Thanks for Surviving Thanksgiving + RIDE REQUEST for Thursday Dec. 2

I was exceedingly careful at Thanksgiving dinner.  I barely ate any of my own contributions to the holiday meal -- Blue Hubbard squash stuffed with roasted Brussels sprouts and chestnuts, plus my Very Seedy Hallah -- but the hosts and 15 guests all loved them, so I felt satisfied.  I barely ate anything else that was served, either, just a few bites of sweet potato, pumpkin muffin, and, with great trepidation, a stalk of well steamed broccoli.  Basically I ate very little, went home hungry.  Who goes home hungry from Thanksgiving dinner?  Oh, well, it matters not.  The main thing is that my strategy proved successful: nothing untoward happened, not even serious gut pain, so I felt -- and continue to feel -- extremely grateful.  And I keep drinking gallons of water.

Next medical test -- ERCP -- scheduled for this Thursday, December 2. Thanks in advance to David G. for the post-anaesthesia ride home from Beth Israel. 

Anybody out there available to drive me to the hospital this Thursday morning?  I have to be there at 11.  We could sing together in the car...

Good news re pain + ER plan + rides needed on Dec. 2

1. Good news on the pain front: It seems that if I keep the water-to-food ratio extremely high, especially while eating, the gut pain stays at a faint distance and sometimes even disappears.  It's a challenge to keep filling my water glasses/bottles so many times during the day, but the potential avoidance of pain is quite motivating.  I try to start drinking water immediately upon waking up in the morning, all day long, and all evening, too.   Resultant frequent trips to the bathroom to pee are a bit inconvenient, but again, more than worth it to avoid pain.

2. My landlord-the-doctor, who specializes in emergency medicine, has offered to take me to the Beth Israel ER for my next gut attack, if she is at home when it happens.  In her professional opinion I should go there instead of the closer Emerson Hospital because at BIDMC they already have all my medical info and images in their computer system.  These would be particularly important to have in case of emergency surgery.  She said I should call on her even if it's 3:00 AM!  Meanwhile, her take on my situation is that it probably is gallbadder attacks that I'm suffering, and that my experiment in super-hydration is probably diluting dietary fat into distant particles separated by water molecules, which is less challenging to my gallbladder.  An interesting theory, which I will pass by Dr. Sheth next time we talk.

3. My next test ordered by Dr. Sheth is called ERCP, scheduled for Thursday December 2.  It's an ultrasound of my digestive system, requiring full anaesthetization.  IF YOU CAN DRIVE ME TO THE HOSPITAL AT 11:00am OR TAKE ME HOME AROUND 5:00pm, PLEASE LET ME KNOW.

And: Thank you!

Gotta go refill my water glasses now.

Very Painful Episode

One day after my previous post I suffered one of the worst gut attacks in recent memory.  It started around midday, after I'd swum a very invigorating mile in the pool.  I do my best to drink extra fluids after swimming, knowing that I'm at highest risk of dehydration and its discontents for several hours post-exercise.

Monday was not a successful eating day from the start (mistake #1), so I was quite hungry after swimming.  Against my own better judgment, I bought a Snickers bar at the vending machine and ate it (mistake #2) in the car on the way home.  Almost immediately it seemed to explode in my stomach.  Yet I was still hungry, so I ate the only thing I had in the car (mistake #3), which was a (rather stale) "Sweet & Salty Almond" Odwalla bar.  Last one in the box I keep in the car.  I've eaten tons of these in the past with not-too-terrible results.  But this time it just fuelled the explosion.  I drank a little more water.  This was mistake #4 -- I think I should have drunk a gallon more water!

Got home, pain kept getting worse, but I had to prepare to teach a Biblical Hebrew class in the evening.  And I was still hungry!  Figuring I had to eat something, and get it done a few hours before class so I wouldn't explode while teaching, I decided to whip up some matzah-ball soup.  Thinking it would be pretty safe, i.e., not too high in fat or fiber, I unthinkingly threw a large handful of wild rice into the pot, to make the soup more interesting and crunchy.  (My love of crunchy food is a big challenge to my jpouch.)

With my gut pain growing ever more acute, I ate a modest portion of soup -- enough to power me through my class without adding too much more to the fire in my belly.  Yes, the rice could have been cooked longer, but honestly I don't think I made things worse with this tiny meal.

I somehow managed to teach the class, 'though I could barely stand up straight due to the pain.  As I left the synagogue the pain was huge, which is very unusual.  Normally teaching Hebrew distracts me so delightfully that all pain goes away.  But not this time.

Back at home, it felt like I'd swallowed a giant chef's knife which was now slicing me up from the inside.  Eventually I couldn't move, couldn't walk, couldn't get to my phone in the bag where I'd dumped it near my front door.  My screaming and crying couldn't be heard by my landlords because all the windows were closed.  I lay there on my bed trying to decide whether this was a true emergency or not, and if yes, would it be too dangerous to try to drive myself to the hospital (located just across the way from where I'd been teaching, I realize now).

I couldn't bear the thought of choosing between driving dangerously vs. crawling to phone and calling landlord; then spending hours in the ER, for what would most likely be inconclusive results; and then being a basket case all day on Tuesday.  If my smart surgeon and GI docs can't figure it out, even after all the tests so far, why should I expect better from the ER?

Plus, I had a tutoring session scheduled for the next morning, and then a furniture-moving event in the evening that had taken me weeks to arrange, coordinating the schedules of four busy people.  I couldn't stand the idea of calling everyone expecting to see me and cancelling everything.  I've had to do that so many times these last few years!  It's almost the worst part of the whole ordeal.

The second-to-worst part is not knowing what the problem is or when it might strike, feeling so unclear about what I should or shouldn't do to avoid it.  Mistakes #1-4 above are things I often do on separate occasions, with no ill effects; basically I'm just guessing that the combination added up to this episode.  Since my pain profile is not obviously derived from the gallstones or from bowel obstruction, the treatment is non-obvious, too.  Makes me feel a bit jittery -- who knows when the knife in my gut will attack next?  How can I plan anything??

I made a guess based on experience that I would probably feel better after enough hours passed, by the time my student was due to arrive in the morning, and cried myself to sleep. 

Thank goodness I was right.  I woke up feeling almost normal, had a good tutoring session, moved lots of furniture around, drank lots of water, didn't cancel any plans, ate some more matzah balls with wild rice, and lived to tell the tale.

Today I was nearly pain-free, but didn't eat right again, so I was too scared of repeating the experience to go swimming again.  I think maybe I will go to the ER next time.

Eating bravely and carefully

Happy to report that later on Thursday (when I saw the nutritionist and became very grouchy) I was directed by an online jpouch acquaintance to an online discussion about diet and jpouches that completely improved my thinking about the whole challenge.  

Am bravely trying to conduct slightly more scientifically controlled eating experiments, such as drinking more water/electrolytes when I eat (in addition to the 70+ ounces I drink in between eating), eating bread along with higher-fat-content food, adding tiny amounts of well cooked veggies to my mainly carb/dairy meals, eating certain foods isolated from others and paying attention to any cause/effect I can detect.

Negative experience with nutritionist

After months -- nay, years -- of procrastinating, I finally met with a nutritionist today.  Although I haven't discussed it much (yet) on this blog, the whole business of food has become rather a torture for me.  I haven't been comfortable eating in the presence of other people for at least a year, mainly because most food has become so scary for me, and I make disastrous eating errors when distracted by social situations.  I only feel safe eating when I'm alone.  This is the short version.

Anyway, today I was extremely disappointed and quite surprised by the nutritionist's zealous discussion of "supplements" with minimal focus on actual food.  Zero mention of hydration, exercise, or sleep as important parts of anyone's diet.  Repetitious advice on how to handle a jpouch symptom that I don't currently have -- from someone who, it turned out, didn't even know what a jpouch is -- was a huge turn-off.  I wasn't impressed by being asked the same yes/no questions repeatedly.  And definitely not inspired by the focus on computer printouts as opposed to my actual human situation.  I can Google general diet suggestions myself! 

This person came highly recommended to me, in a practice that prides itself on progressive and holistic approaches to health, and charges a very high fee (not covered by my insurance), which I was prepared to pay for solid-gold consulting. The biggest deal-breaker for me was when this "professional" informed me -- in stark contrast to every extant bit of jpouch advice, not to mention received wisdom regarding mind/body health in general -- "You can't go by how you feel." 

I beg to differ!

Endoscopy Accomplished! More Tests to Come, Next Time with Anaesthesia

Endoscopy accomplished!   The procedure wasn't so awful, not least because it was mercifully short: less than ten minutes.  The worst part, which I avoided thinking about until right before it happened, was the "swallowing" of the instrument with the camera.  Unfortunately there was quite a bit of choking and gagging on my part, which is mainly what I was afraid of.  Now I have a slightly sore throat, which shouldn't last long.

Endoscopies are performed with the same sedative "cocktail" as colonoscopies.   Based on plenty of past experience with said latter procedure, I warned today's doctor in advance that I have a ridiculously high tolerance to sedatives, narcotics, and painkillers of all kinds.  "Feel free to give me a horse-sized dose," I suggested.  Thus they shouldn't have been surprised that I remained mostly aware and alert during the entire procedure.  When it was over, the nice doctor administering the sedatives remarked that she ended up giving me the very biggest dose they could manage short of complete anaesthetization.  I have heard that one before.

Diagnosis is still elusive.  There is inflammation of the pancreas, just as was shown in last week's MRCP.  This "pancreatitis" may or may not require treatment.  Biopsy results from today will be available in one to three weeks.  During that time I'll continue taking omeprazole, since I haven't been on it long enough to determine whether it's helping. 

Dr. Sheth doesn't think I need immediate surgery, which is a big relief.  On the other hand he does want me to undergo a few more tests, which *will* involve full anaesthesia.  These will probably get scheduled sometime in the next month or so.

I feel very grateful to Bill S., who picked me up at home, drove me to hospital, stayed with me the whole time and then drove me home.  His calm and steady presence made the experience much easier.

Since I didn't experience heavy sedation, it wore off very fast.  By the end of the drive home I felt 99% back to normal (such as it is).

I must also add that the young medical assistant in Dr. Sheth's office who drew my blood before today's exam did it in the most expert fashion.  I'm pretty squeamish about needles so I don't say this lightly: it was the most pain-free blood drawing experience I can remember in years.  And I've had a lot of them.  I must get his name next time to let his superiors know what a great job he did.

Endoscopy on Tuesday Afternoon

I stopped eating solid food at midnight, per instructions.  Liquids can continue until four hours before the procedure; after that, nothing at all, not even for taking meds.  I'll be okay, I did this last week before the MRCP.

In about twelve hours I'll be at Beth Israel for blood work, then prep at 1:00, endoscopy at 2:00, ride home at 4:00.  I've never had this procedure before, not sure what to expect, especially afterwards.