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!

Surgery Scheduled for November 9, but could be sooner

My surgeon, Dr. Peter Mowschenson, was busy in the OR all day today, so he wasn't available to help me get onto the OR schedule in October -- yet.  So I took the first opening I could get through his office: 1:00 PM on Tuesday, November 9.  Seems nice and far in the future, way too early to start worrying.  But not too soon to start planning!  So I need to find help with

1. Moral support & hand-holding on November 8
2. Ride to hospital on November 9
3. Someone to hold my hand before and after surgery
4. Ride home on November 10 (we hope!)
5. Friendship and camaraderie Nov. 10-17
6. Meals, chores, errands, etc., Nov. 10-17

I don't even know what I'll be able to eat during that first week.  Maybe I can find out, and make things ahead of time to keep in the freezer.  I guess I should get started, especially since the date of surgery might get moved up much sooner.

Comforting thought

Today a friend told me that when doctors speak to their patients about upcoming surgery to remove gall bladder, it's typical for them to say they plan to do it laparoscopically but that things could change mid-procedure.  I found this extremely comforting, even though I know that in my case Dr. Mowschenson could very well run into a belly full of scar tissue.

New name for the surgery

Trying to look on the bright side and be optimistic, I've invented a new name for the surgery I have to have: it's a Chutzpectomy.  You can figure out the pun.

Good news: no blockage. Bad news: Gall stones

The MRI showed that I have no bowel blockages.  Hooray!

But it also showed that I have gall stones.  Dr. Mowschenson says this is most probably the cause of the pain, and he wants to remove my gall bladder.

Yikes!  More surgery.  Big questions of whether to go through with it, when to do so, and how to schedule Hebrew classes this fall, not knowing how I'll feel or what recovery will be like.

Hopefully the surgery can be done laparoscopically, but if I have many abdominal adhesions from my complete colectomy (2003), surgery would be bigger and require longer recovery.

It's a challenge to get myself back into proper mood for big Sukkot party tomorrow.

MRI Enterography

Tomorrow I have my first MRI -- enterography, which means they'll take pictures of my guts to see whether any partial bowel blockages have built up.  If so, it would explain all the agony I've experienced in the last few weeks, almost every time I eat.  Have been on a low-fiber diet for one week; it seems to be helping (less pain), but is a bummer in the middle of harvest season and the Jewish holidays.

I had previously understood that MRIs are dangerous to people whose bodies contain metal.  My leg is still full of hardware, which has always stopped the docs from wanting to use MRI on me.  When scheduling this enterography they asked whether I had any metal in my body; of course I said Yes.  Titianium? they asked.  No, stainless steel, I answered.  Oh, that's fine.  Titanium would be fine, too.  So which is the "bad" metal?  I don't know.

I'll receive the results of the MRI enterography in a few days.  For now, feeling a bit nervous about my guts!