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. 

Yesterday's MRCP wasn't too bad.  It was the same friendly young fellow as when I went for the MRI enterography a few weeks ago; I really appreciate his casual, direct manner.  I had to sip some awful stuff through a straw again -- different awful stuff from last time.  This one is apparently worse to most people, but I found it less offensive, simply like a really gross creamsicle.  And there was no painful shot to the shoulder muscle this time.

This MRI -- of my gallbladder and pancreas -- took a long time.  Part of it involved time-lapse photography: the radiologist slowly injected something into me via the IV in my left arm, and the MRI guy snapped a picture exactly every 30 seconds.  This way they can follow the progress of the injected stuff as it moves through the bile ducts.  The technology never ceases to amaze me. 

It was very uncomfortable holding my arms above my head, even horizontally as I lay on the "stretcher," for such a long time, especially in that cold room.  My left shoulder and also my neck and back are still sore.  But I'm a very good breath-holder, so they got good, well focused "slices" of everything they wanted to see.

I ended up fasting much longer than necessary or intended.  When I finally got out of the radiology department, I went to visit a good friend recovering from her own colon surgery.  She wasn't interested in all the brighly colored low-residue things they were trying to get her to eat, so I ate them for her -- I was starving!  Though the calories were the "empty" kind, I must report that my empty system found them very comfortable and gentle.  I even slept for almost eight hours straight without being awoken by my jpouch!  This happens maybe twice a year if I'm lucky.  If only it were possible to live on nothing but jello and popsicles...

The MRCP results should get to my GI doctor by tomorrow; I don't know when I will find out what they reveal.  In some ways I hope they show nothing at all -- which would leave me without a medical explanation for all the pain in my gut, but at least would rule out various scary possibilities.  On the other hand I might be sort of relieved to find out, for example, that it's definitely my gallstones causing the pain -- the solution to that is clear and simple: surgical removal of the gallbladder.

Meanwhile, the pain has changed dramatically over the past week or three.  I can't figure out what causes it, or how to avoid it other than by fasting.  I can feel the food as it travels through my system, because it seems to hurt at each point along the way.  It's hard to imagine this is all caused just by "stomach acid."  The pain does seem to settle in on the right side for the longest, which might implicate the gallstones.  Hurts there right now.  But if it's anything like the past week, the pain will slowly move south, wake me up a few times during the night, then finally be gone by morning -- when I'll have to start eating all over again.

I'm scheduled for an endoscopy -- or "gastroscopy," according to the instructions that arrived in the mail -- this coming Tuesday, November 2.  I'm actually looking forward to the required pre-test fasting and low-residue eating.  I even stocked up on popsicles.   Also settled the question of rides that day -- thank you in advance to Bill S. for the ride to the hospital and to David G. for the ride home. 

Soon I'll start making preparations for post-test recovery at home.

MRCP tomorrow

Tomorrow afternoon I go to the hospital for an MRCP -- a specialized MRI that looks specifically at my gallbladder and pancreas.   The goal, as I understand it, is to rule out possible scary causes of the frequent gut pain I've been experiencing.

I have to fast for four hours beforehand, including no liquids; would be easier if it weren't in the middle of the day, but I'm no stranger to  spontaneous fasting, so I'm not too worried about that part.  Besides, it only hurts when I eat.

Next Tuesday I go back in for the endoscopy, for looking at other body parts.  Since heavy sedation is involved, I'll need rides to and from the hospital.  Still looking.

Jpouch People on Facebook

A few months ago I finally discovered other people who have lived with a jpouch for many years -- on Facebook, of course.  I don't know why I didn't think of looking there sooner, given that I'd been searching in vain for a couple of years.  Actually there are a few different Facebook discussion lists for people with jpouches; I joined the largest one.  Finally, people who have the same problems that I have; and some of them even have solutions!

I'm especially encouraged to "meet" people who have had their jpouches as long as I've had mine (almost seven years), and even longer in some cases.  For lack of a better term, we're calling ourselves "long-timers."  A few people in the long-timer group have replied to my inquiry about their experiences with gallstones and gallbladder surgery.  Unanimously they report positively regarding the surgery, i.e., that removing their gallbladder solved a lot of pain.

This week I'm hoping to compare symptoms with them, to establish whether my pain profile is similar to theirs.

Surgery cancelled for now, more tests instead

Dr. Mowschenson backed off on the gallbladder-surgery plan and decided I should consult with a gastrointestinal specialist first.  No surgery scheduled as of this writing!  And although Mowschenson says he doesn't believe in diet as being a big factor in any of these gut things, he nevertheless advised me to cut way back on fiber, especially in vegetables.  I am currently a vegetarian who doesn't eat vegetables.  I especially miss the beets and Brussels sprouts, but they were among the biggest offenders.  Mostly I have been feeling better, but read on...

As of Tuesday this week I now I have a new GI doctor, Sunil Sheth.  The appointment was for 5 PM at Beth Israel in Boston.  5:00 PM!  Never mind rush hour, that's a horrible time of day for a GI appointment, especially for someone with a jpouch.  I was very surprised at the scheduling, tempted to reschedule, but it was his first available so I took it, despite feelings of trepidation.

Good news:
- I didn't have to wait as long as I feared at that time of day.
- Dr. Sheth and his fellow Dr. Sepe seemed very smart and knowledgeable and kind.
- Dr. Sheth specializes in pancreas stuff, which might be relevant to my case.
- Dr. Sheth works with Dr. Mowschenson regularly -- which is a huge plus, as I have total confidence in Mowschenson.
- My gallbladder is not in urgent need of surgical removal.
- Despite the horrible diet I am now eating (that's my opinion; it's still not as bad as the average American's), my vital signs were all perfect.  I credit swimming laps.

Information:
- It's possible to have gallstones (which I do, as the MRI enterography revealed last month) without their causing pain.
- I definitely have pain, but not according to typical gallstone pain.
- Not clear whether my pain is caused by bowel blockage, either, since the MRI showed none of this.

Plain News:
- On October 27 I'm scheduled for an MRCP, which is a specialized MRI of the gallbladder and pancreas. 
- On November 2 I'm scheduled for an endoscopy.  "Like a colonoscopy but without the prep" is what the doctor actually said.  Having had way more than my share of colonoscopies in the past, I found that funny.   But I still feel anxious about it. 

On November 2 I need to find a ride there at 12:30 and a ride home at 4:00.  Anybody available?

- Dr. Sheth prescribed a new (to me) medication to address the possibility of stomach acid being the cause of my pain; apparently lots of Americans take this one.

Bad news:
- On the way to the Tuesday appointment I felt something bad happening in my gut.  Seemed sort of like what I have been assuming were partial bowel blockages for the last couple of years, and what Mowschenson thought, since the last MRI, might be gallbladder attacks.  I mentioned, during the appointment, that I was having some of the pain typical of the last few months right at that moment, and that it seemed to be growing steadily worse.
- On the drive home the "attack" got worse and worse till I almost couldn't drive.  I somehow made it home to Lincoln, went straight to bed with electric heating pad and hot tea.  But the acute abdominal pain was horrific, like a devil trying to cut himself out of me with knives.  After a supportive phone conversation and a few hours had passed, I started to feel minimally better, and thus decided not to go to the ER.  But lost most of Tuesday night and therefore most of Wednesday as well.
  Was this coincidence?  Psychosomatic? Stress about the 5 PM appointment?  I don't know.  But I regret eating all that freshly baked hallah on the way!