Surprised at the Culprit

Doing a bit better by 3 PM. After several hours of intense heating-pad application, drinking small amounts of very hot tea, and a lot of cramps and painful gurgling down below, jpouch finally began dumping the offending substance: coconut macaroons.

I had narrowed my guessing down to this culprit mainly because everything else I ate in the past 48 hours was familiar safe stuff. It's surprising to find out that my jpouch absolutely could not deal with the macaroons. I know I ate them last year without problem. Is it just due to a different brand? The high fat content? I can't imagine either of these being the cause -- how different could these be? And although I generally avoid huge portions of fat, these were no worse than some other things I eat safely (cheese, occasional potato chips, etc.) I didn't even eat very many! It's a mystery.

My view on shredded coconut has just done a 180: as of Friday coconut was nothing I'd worry about, it seemed perfectly innocuous. As of today I will not be touching it with a 10-foot pole, no matter if it's the only non-chocolate dessert in evidence for the whole of Passover! (Which starts tomorrow night and lasts for eight days.)

Meanwhile, I've lost a whole night and day. I had a million tasks and chores to get done today, in these final intense hours before the holiday begins. I'm too weak and tired to accomplish much of my To-Do list. I hate when this happens!

I guess I should just be grateful that it's been FIVE MONTHS since the last time this happened. And I've succeeded in eluding the ER and its dreaded NG-tube yet again.

More immediately, I'm grateful that the excruciating pain has mostly subsided. I'm now dealing with extreme dehydration instead. As long as I drink a few gallons of liquid over the next few hours I think I'll probably be okay.

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.

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.

Jpouch Feels Much Better; So Do I

My jpouch definitely feels better having had the exploratory surgery last Wednesday.  I measure this by pain (gone!), urgency (greatly diminished), and frequency (way, way down).  In fact these were all true starting one day after the procedure.  I attribute this to the antibiotics, which I'm still taking.  I've been using the steroid suppositories twice a day for several days now, which must also be helping a lot.

Less pain means, of course, less pain.  I finally stopped taking the serious pain killers, and have even reduced the amount of Advil I need.  Less urgency means greater peace of mind, less running pell-mell through the house risking stubbed toes, upturned furniture, and the like.  And lower frequency means more sleep!

I can actually begin a project, or an email, or a conversation, or dinner, and feel confident that it won't be interrupted every 20 minutes.

And when my jpouch feels better, I feel better!

Post Op Report: Jpouch pain overshadowed by anaesthesia screw-up

Well, I survived yesterday's procedure. The worst part was getting beaten up by the anaesthesiologist. At least that's what it feels like. He actually called me on the phone today to apologize! And tried to explain what happened, 'though not to my satisfaction. So, for the moment, any jpouch discomfort I might have is hugely overshadowed by pain in my throat, neck, shoulders, wrists, hips, and knees. It's rather scary, even though these symptoms will supposedly ease up within a few days.

As for my jpouch, it has pouchitis. So I'm taking antibiotics (Cipro). Dr. Mowschenson also found a lot of inflammation, which we're going to "hit hard with steroid suppositories." Starting when I receive them in the mail, within next few days. Then I report back to his office in two weeks to see if it worked. That's always the part I dread most -- the office visit and its rectal exam.

Jpouch Surgery Tomorrow

It's been many moons since I wrote here; since then I moved to Lincoln, MA, plus many other changes. Lots of stress in the last few months, taking its toll especially on my jpouch. Often too scared to eat, I've lost about ten pounds since last summer. Life in the bathroom is too long and too painful; I finally contacted Dr. Peter Mowschenson, and tomorrow he operates on me. It's "exploratory," but I'm pretty sure I know what's wrong: too much stress! Will be interesting to find out what his diagnosis is. Mowschenson is the surgeon who originally removed my entire colon back in November 2003 -- he saved my life! He's also the creator of my jpouch. I consider him the expert, will try to do whatever he recommends. But if he agrees with me and tells me the main thing is to make my life less stressful, I will need suggestions about how to do that!

Meanwhile, I have discovered that I can swim an Ironman-length swim very easily! It's 2.4 miles (that's 170 lengths of my 25-yard pool) -- first time I tried it was about two weeks ago. Coach Bill says my time (1:23:39) was "very respectable." I didn't even train for this, it was a sudden inspiration. Last week I suddenly felt inspired to do it again, and it was just as easy as the first time. And my time on the 2.4 miles was only 25 seconds longer, which barely counts.

If I could find the time to swim more often, even just the plain ol' mile I used to do, I'd probably be less stressed. But here in Lincoln I'm further away from my pool, find I'm going less often. There are pools in Concord I could join; I should probably look into it. But I like the social aspect of the Mount Auburn Club, where I've been swimming for ten years and know a lot of people. With all the other changes in my life I'm dealing with, I'm not ready to change pools.

I'm very scared about being in the hospital again, under full anaesthesia, with results yet unknown. Even though I've been through this before, and it's a lot less serious than losing my colon was, just being in that environment triggers many awful and painful memories.

I hope Dr. Mowschenson can find an easy solution so that I can resume eating enough to gain back some of the weight, feel healthy, sleep better (fewer trips to bathroom during the night), and get back to enjoying a leg that's much less painful than a year ago. (It's still not quite healed, but that's a story for another post.)