Sunday, August 3, 2014

Bland, Thick, & Lumpy OR Death By Low Residue

Lord, have mercy.

I do not like bland food. I mean, I really do not like bland food. My mother discovered my penchant for spicy food when I was only two and I single-handedly ate almost an entire bowl of chile con queso she had made for a party. At age five or six we were eating supper when I noticed the meat was different and asked, "What kind of meat is this?" (It was venison procured by my father.) In a fit of God-only-knows-what-he-was-thinking my father answered, "It's Bambi." According to both my parents I merely blinked my eyes once before pronouncing, "Bambi tastes good," and cleaning off my plate with relish.

When I was pregnant with Boo I ate pretty much anything and everything I wanted. The only food which regularly made me sick was plain, un-spiced chicken breast. For some reason people kept serving this to me under an assumption that I could not eat normal food while pregnant. I ended up throwing it all up every. single. time. Bland food and I do NOT get along.

Fast forward to today, three and half weeks post-op after my latest Fun-Filled Hospital Extravaganza, and I am on a low residue diet.

The makings of a typical low residue meal. Yee haw.
A low residue diet, for those of you who have never had the privilege of experiencing one, is a diet designed to both lessen the frequency and thicken the consistency of one's output. By which I mean this: thicker poop and fewer instances of messing one's self. Yes, it is definitely as fun as it sounds.

The reason I'm on this diet is because I had a pouch advancement on June 26th (they cut loose my J-pouch and pulled it down into my rectum) in order to (hopefully) deal once and for all with the @#!$% fistula I've been fighting for the past three years. This was part one of a two-surgery procedure. (For those keeping score, surgeries 12 and 13.) I then had to wait around in the hospital for two weeks, almost completely incontinent -- yes, that was as much fun as it sounds, too! -- until the second procedure on July 10th. During this procedure the ends of the pouch were trimmed and fully stitched in place. Voila! One exceedingly sore hiney and a LOT of poop to contend with.

So. Here is a list of food & beverage options I get to choose from daily: oatmeal, white rice, potato, white pasta, white bread, decaf tea, water, multi-vitamin juice (one small glass per day), Actimel (also one per day), plain meat, very small amount of cheese, banana, applesauce, and avocado. As a treat I can have a tiny bit of hummus on plain crackers, and later today I might try some beets, as I've been handling the banana, applesauce, and avocado without too many problems. Woo hoo, party time!

For extra excitement, I also get to drink a glass of water mixed with Questran-A three times a day, before each meal. This is a powdered medicine which works in the gut to cut down on the acidity of poop, hence helping to cut down on both urgency and hiney pain. (Do not be fooled: Butt Burn is no laughing matter.) This is a good thing. The yucky thing is that while the powder is completely tasteless, it makes the water thick. And lumpy. Thick, lumpy water three times a day. Yum. Boo & Little Toot have taken to counting how long I can keep from gagging after each glass; so far my record is three seconds.

This combination of bland, thick, & lumpy is slowly getting to me, folks. Fair warning: if you don't see me for a while, check the corners to see if I'm sitting in one, quietly sobbing while trying to down a glass of Questran-A enriched water. If I'm not there or, of course, in the bathroom, then I am afraid I might have wasted away. Please make sure my tombstone is engraved with the following: "Here lies Feisty. She survived Ulcerative Colitis, fistulas, 13 surgeries, and innumerable side effects but was finally finished off by Gastronomic Boredom. May she rest in peace and enjoy that Great Baked Brie in the Sky."

Thursday, April 3, 2014

A Boot in the Butt

All of us need a boot in the butt occasionally. Okay, maybe none of you do, so I'll speak for myself.

Sometimes I need a boot in the butt. Sometimes I get too down and self-absorbed and forget to do the things I know will help me feel better. Sometimes I get too busy running around trying to fix everything "while I can" and end up making myself sick. Sometimes I get lazy. At these times, it is helpful to have a boot in the butt to get things on the right track again.

Sometimes I start feeling sorry for myself and whining. Now, seriously, there's a time and a place for this, but -- after a bit -- it is time to move on. And this is when someone else needs to step in and say, "For goodness' sake woman, get a grip!"

However.

I received an email this week from an acquaintance which (I am going to assume) was meant to be helpful. Let me be clear: I have only met this person once. ONCE. He had sent an email asking my professional opinion on a matter and wondering if I could meet with his organisation. I politely declined and explained that this was due to health issues. He emailed back almost immediately, expressing sympathy, and offering this bit of wisdom:

He said that at one point in his life he had been quite ill with a persistent infection and had repeatedly seen a particular doctor about his symptoms and complaints. One day the doctor said to him, "Young man, as I learned in Auschwitz, either you get better or you die." The email author went on to state that this gave him needed perspective.

Okay. Deep breath. I think I am intelligent and flexible enough to see the bit of existential wisdom here for a given situation. Perhaps my emailer was being whiny or was a hypochondriac or expected miracles or was simply impatient about being ill. Perhaps he had been babying himself too much or not following directions. Perhaps this doctor gave him a very much needed boot in the butt, a "snap out of it!" moment of which he was in want.

Or perhaps the doctor didn't have the time of day to extend appropriate sympathy to a genuinely hurting patient.

I don't know; I wasn't there.

What I do know is this: you don't say (or write, in this case) something like this to a person you barely know, whose situation you know absolutely nothing about! As a matter of fact, probably most situations are not the appropriate vehicles for this gem.

Here's some general guidelines about giving anyone a boot in the butt: Do you know the person? No? Don't say anything. Do you know them well? No? Don't say anything. Do you have hesitations about giving them a piece of reality? Yes? Then don't say anything. Do you have no hesitation whatsoever about sharing your wisdom? No? Then for heaven's sake, please don't say anything.

If you know the person well, know her situation well, love and respect her and would value a blunt, down-to-earth piece of wisdom from her about your own life, then give it a second thought. After that, if you honestly feel it is needed, then speak kindly with your friend.

Because sometimes a boot in the butt is needed. But no one needs just another pain in the ass.

Encouragement from friends who know me well.

Sunday, March 9, 2014

Umbrellas & Butt Wipes

Here's the current lay of the land:

  • Fistula repair definitively failed; another surgery needed.
  • Must choose between a muscle graft (MAJOR surgery) and a permanent ileo (major surgery).
  • Being sent to an IBD surgical specialist for his opinion on which procedure would be better; referral letter was lost (grrrrr!!!!!!) so appointment isn't until April 15.
  • Which means surgery won't be until May. With, depending upon the procedure, a 3 to 12 month recovery period.
  • And we're moving in July.
  • In the meantime, the fistula is acting up more than it has in about a year, causing much discomfort, some pain, and a blasted evil yeast infection. (@#$!@%)
  • The stoma is now tipped flush with my abdominal wall, which means I resemble raw hamburger where it empties. If the surgery isn't until May, I will need a surgical stoma revision in the next few weeks.
  • Abdominal & stoma pain have been plaguing me for a week; the symptoms are beginning to look like adhesions... Which also require a surgical fix.
So yesterday was one of "those" days. Tears, frustration, hopelessness. I sent a whiny missive to a friend who also fights with a chronic illness and used a particularly colourful phrase to describe what I felt like I was dealing with. She responded by saying, "I'll bring the umbrella and butt wipes."

I prefer unscented flushables, but chamomile or aloe will also work!
This, my friends, is what is needed on "those" days: a friend who doesn't roll their eyes, get grossed out, tell you to "just deal with it", or smile tightly. Instead, what is needed is someone with a bit of sass, who understands, is empathetic, but doesn't let you wallow in self-pity either. It's a gift, this ability. And these friends are a HUGE blessing.

Today I feel much better, physically and mentally. Here's what I'm doing to continue to fight:
  • Writing this.
  • Doing laundry (love the fresh smell).
  • Making garlic knots. Because I want to.
  • Sitting in the sun at some point for 10-15 minutes.
  • Plowing ahead with some things I need/want to get done around the house.
  • Counting each little bit I get done as a success.
  • Writing a letter to a friend who really needs a pick-me-up.
  • Praying for those who are in so much more need than me.
  • Goofing around with Boo & Little Toot.
  • Right now, after I post this, I think I might have another cup of tea and a scone.
And maybe, just maybe, I won't need the umbrella today. (I always need the butt wipes!)

Wednesday, February 19, 2014

A Down Day

It hits out of nowhere.

Well, not really nowhere because I have PTSD and am fighting an infection which makes me tired and am facing the difficult truth that I a) did NOT develop a new fistula (which means THREE repairs have now failed) and b) I must now make a choice between a really hard surgery and a really, really hard surgery in order to move on with some semblance of life. All around me hard things are happening; deaths, illness, struggles. I feel powerless to help myself, let alone "be there" for anyone else.

So, okay, there's background.

But mostly I think I do a pretty good job of dealing with it. After the initial post-surgery fugue and the inevitable crash when the bad news is first delivered, that is. (Those are really bad days, just ask Jasper.)

After the initial shock, however, after the crying fits and the exhaustion and the utter weariness, there comes a kind of -- well, not acceptance, but sort of an even period of coping. Of just moving on. Realizing that it is what it is and nothing I can do will change it so I might as well get on with things. There comes a sort of equilibrium.

"I'm on the hunt for who I've not yet become,
but I'd settle for a little equilibrium."
-Sara Bareilles, "Hercules"

It's fragile, though, this equilibrium.

Sometimes I know what sets it off. More bad news from the doctor, a horrible news story, that feeling that no matter how hard I try I will never be the mother I want to be. (That last feeling may or may not have been set off today by one of my offspring managing to slip out of the house without brushing her teeth. Again.) Sometimes nothing really sets it off, I just wake up with a weight holding me down, an utter feeling of exhaustion, and the knowledge that today is going to be a Down Day.

In the former circumstance I can more or less deal with it, with help. I can cry and express frustration and talk with people about why I'm upset. In the second, however, I never really know what to say. How do you explain what it's like when everything just feels heavy? When you are so damn tired that even the thought of a shower exhausts you?

These are the days when, if I do make it into the shower, I stand there and cry. For no reason. For every reason. Because-- 

Just because. Because even the shower drains me, and I don't know why.

I hate it; I hate these Down Days. They suck everything into an abyss and I. Just. Can't.

Jasper and I were speaking with a friend once, in the midst of several Down Days, when the bad news just kept coming, when even those we thought understood made it clear they had no clue. We were describing what was happening all around us and to us and in us and I was frantic to be understood, practically frenetic with my need to be understood. And this friend, with infinite love and understanding, looked me straight in the eye and said, "That is really shitty. It is just completely shit."

And I thought, "Yes. Yes, it is." And I began to feel better. Because sometimes, sometimes, everyone just needs someone to acknowledge the poop.