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."

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.

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!)

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.

Healing, Part Two (In 55 Easy Steps)

On October 31st I had a fistula repair performed. In the bad news category, it was my third attempted fistula repair. In the good news category, it turned out to be a new fistula, which means the two repairs on my original fistula worked. In the bad news category, this means I have a new fistula. In the further bad news category, the fistula drainage didn't stop enough to allow proper healing to the repair site, so on November 22nd I had another temporary stoma (my fourth) installed. In the good news category, the surgery went very well and there were no adhesions involved, so the surgeon is extremely hopeful about the outcome.

Refer to #31 and see how many you can identify.

Life is full of poop. Sometimes it's more, sometimes it's less, but the fact is that all of us have to deal with a certain level of both metaphorical and literal poop. And the sooner we learn to do that without whining or running away or collapsing, the better off we are.

I apologize in advance for any unpleasant imagery this post puts in your head. On the other hand, hey, you're here under your own volition! Gross or not, this is my reality. And if your sense of humour is slightly twisted, it is kind of funny...  Afterwards. So, for those of you silly bored reckless brave enough to continue, I offer you:

How to Change a Stoma Appliance in 55 Easy Steps

1. Wake up repeatedly during the night and check the base of the stoma bag to make sure it is still securely fastened to your skin.
2. Finally fall asleep soundly around 4:30.
3. Awake with a start at 7:05 to find that yes, you have sprung a leak.
4. Cuss.
5. Get out of bed. As you are still only 10 days post-op and cannot sit up normally, this involves rolling onto your right side, causing more leakage, and pushing yourself up to a sitting position.
6. Bite your lip and sigh. Pledge that you will not cuss your way through this entire procedure.
7. Stand up. Check bedding and execute small happy dance at the knowledge that you caught the leak before it soaked through all the bedding & the waterproof pad you now sleep on, which means you do not have to strip the bed at this immediate moment.
8. Realize that your little happy dance caused the stoma to become active. ("Become active" is a euphemism for "spew poop".)
9. Cuss as you grab a pile of compresses to cover the leak. Grab robe.
10. Run (well, okay, shuffle-jog) to the bathroom.
11. Empty the clean laundry out of the washing machine. Take off your pajamas, one-handed (remember the other is holding bandages to the leak), and throw them straight into the washing machine.
12. Sit on toilet. Empty stoma bag into toilet. Ask yourself again why you ate so many green onions at supper the day before??!? Gingerly peel the wax base of the stoma appliance off your skin and stitches/steri-strips.
13. Cover stoma with toilet paper to prevent further leakage incidents. Throw everything in the garbage can. Make mental note that garbage must be emptied ASAP.
14. Hop in shower.
15. Begin washing.
16. Begin relaxing in the warm water.
17. Watch in amazement as your stoma becomes active (see #8 above) and does a very admirable imitation of a sprinkler head. Specifically, the impact rotor type.
18. Cuss.
19. Wash shower walls and tub.
20. Finish showering.
21. Dry off.
22. Grab toilet paper to cover stoma 2 seconds too late.
23. Grumble and moan, remembering previous pledge not to cuss through the entire exercise.
24. Clean up. Place bathmat in washing machine.
25. Throw on robe.
26. Debate where to put on new appliance. In bathroom? Feel too weak to stand for another possible 20 minutes and rule out lying on cold floor. In your bedroom? Not ideal, as DH is still sleeping and you'd rather not wake him up for a variety of reasons, including embarrassment/frustration about the leak.
27. Peek out bathroom door, spy that Little Toot is up and her bed is free. Score!
28. Shuffle to bedroom, holding TP on stoma and robe (more or less) secure with one hand. Gather up as many supplies as can in the other. Shuffle to Little Toot's bedroom and dump supplies.
29. Repeat.
30. Repeat.
31. Lay out supplies on bed: two towels covering bed, compresses, adhesive-remover wipes, stoma appliance base, appliance paste, stoma powder, medical scissors, half-moon plasters, stoma appliance bag, small medical waste bag, and hairdryer all within reach.
32. Feel around blindly under Little Toot's bed for the extension cord you know is there. Wonder what else is under there. Make mental note to have Little Toot clean out from under her bed ASAP.
33. Find power strip, plug in hairdryer.
34. Lie down.
35. Using medical scissors, cut a 30-mm hole in the wax stoma appliance base and place base under your bum to warm up and become more pliable. Wonder who first used this technique.
36. Wipe stoma area down using adhesive-remover wipes. Wonder why they are made so thin. Discard used wipes.
37. Slowly dry stitches/steri-strips and stoma area with hairdryer on low setting. Wonder how many of your friends and acquaintances are going to blow-dry their abdomens today.
38. Grab compresses to mop up small squirt. Re-blow-dry area. Proactively place pile of compresses on top of stoma.
39. Congratulate self for not cussing over squirt incident. Make mental note to add squirted-upon robe to the load in the washing machine.
40. Grope around and find stoma powder; sprinkle a liberal layer around base of stoma; wipe off excess. Discard used compresses.
41. Pray fervently for no more activity from the $%#@! stoma.
42. Retrieve appliance base. Apply stoma paste around edge of hold in the middle.
43. Begin to peel off the base backing so base can be placed on skin; realize that you have applied the paste to the wrong side of the hole.
44. Cuss.
45. Clean off base as best you can. Apply paste to the proper side. Discard used compresses. Apply base to skin, fitting base hole snuggly around stoma. Wonder who spends their time designing stoma appliances.
46. Find stoma appliance bag; snap securely to base and press ring to make sure the seal is tight.
47. Place hand over stoma/bag/base to continue keeping the area warm and ensure flexible and strong adhesion.
48. Check clock. Note time is 8:18. Relax back on pillows, glad to have the process mostly done. Still time to eat and brush teeth before the home care nurse arrives at 9:00.
49. Decide that maybe the 10 minutes of lying quietly and heating the stoma appliance with your hand could be used for some prayer and reflection.
50. Hear the doorbell ring and Bubba bark at 8:20. Listen frantically as Boo answers the door; stink, the nurse is here 40 minutes early!
51. Cuss. But only a little.
52. Spend 10 minutes with the nurse, who inspects the change job closely. Try not to breathe in her face (see #48).
53. Express gratitude as the nurse helps apply the half-moon plaster, which you had forgotten about. Wonder how many people had to deal with improper base placement over stitches before they were invented.
54. Bid adieu to the nurse, get up, get dressed, clean up supplies. Empty garbage in bathroom. Toss robe in laundry and start load. Cook & eat breakfast. Deliberate upon an appropriate penance for the all the cussing. Con Resident Domestic Goddess (aka Mom) into changing and laundering sheets after DH gets up.
55. Begin obsessively checking for leaks every hour on the hour....

The hard work of healing is not for the faint of heart. Or for those lacking a Junior High level sense of humour.

"becoming active"

Your turn: what physical or metaphorical steps do you need to take to slog through the poop in your life at the moment?

Tiny Feisty

This is Baby.

To be more precise, this is Baby holding her Daddy's finger. Baby was born in October with a heart condition which required open heart surgery within the first 5 hours of her life. Since then she has been through a myriad of smaller treatments, a collapsed lung, and too many ups and downs to be counted. Very recently a clip installed in her heart during the initial surgery broke, requiring an emergency surgery. Baby's parents were told she wouldn't survive. With much prayer and hope they sent her off to the surgery, whispering to her, "Prove them wrong."

She did. She proved them amazingly, beautifully, phenomenally, feistily wrong.

The latest update is that she is doing better than anyone expected; she may be able to go home at the turn of the year or soon after.

Baby's father is a baseball fan; in a moment of sleep-deprived silliness at the hospital, Baby's Momma grabbed his ball cap, punched it inside out, and slapped it on his head as a Rally Cap. A picture on Facebook was all it took to start a landslide of "Rally Cap for Baby" photos being sent in, with assurances of prayer and support from all over the globe.

All Saints Maastricht Uni Group (& Bubba) Rally for Baby

Baby's Daddy has been printing the pictures out, hanging them by her bassinet in the NICU. The nurses are blown away by the amount of support Baby is receiving; the surgeon and the anaesthesiologist are dumbfounded at Baby's strength through all of this. Baby's Momma and Daddy keep praying, keep hoping, keep loving. What can I say? They believe in prayer; they believe in hope; they believe in love.

I know Baby's Grandma; she's a pretty feisty lady. I know Baby's Daddy (he once interned for me while I was preggers -- every 20-year-old guy's dream job!) and he's a pretty feisty guy. I "know" Baby's sister and Momma through Facebook; they look to me to be the very picture of feisty gorgeousness. And Baby is proving herself every day to be more feisty than the rest of us put together.

So Baby, as dubious an honour as it may be, I pronounce you a Tiny Feisty Broad. Your Momma says you were a kicker in the womb. Keep kicking, Baby; keep kicking!

"Nothing is impossible. The word itself says, 'I'm possible.'"

(A favourite quote of Baby's family, from Audrey Hepburn.)

Your turn: if you would like to support Baby in prayer, send me a picture
of you & your Rally Cap.

I promise I'll get it to Baby's family.

If at first you don't succeed....

...try, try again.

Not that I am particularly good at that. Actually, I'm pretty miserable at it. But here I am, deciding that I need the practice, deciding that I will not let stinky news get me down. With all the poop in my life, after all, I'm pretty used to stinky things.

Surgery number 10 is coming up. I asked for dancing girls or a solid gold bed -- some sort of compensation -- but they apparently won't be forthcoming. What will be forthcoming is another mesh repair for my #@!%&^ fistula. A rectovaginal fistula, which you can read more about here. (Be forewarned, it's gross.) This will be my third attempt at a repair, and my last chance with a "simple" repair; the next step is a muscle graft which, for a variety of reasons, is NOT what I want to do.

Essential tool for trying again.

To be frank, I'm scared. Not of the surgery itself, which I have already been through once, and not about the skill level of the people performing the surgery, because I know them and trust them. Just, because. Because fistulas are notoriously difficult to repair, because I've already had three surgeries associated with this fistula and it is still here, because no surgery is ever a walk in the park. Because I am so damn tired of all of this.

And yet...

And yet, the minute I stop trying is the minute I might as well cash it all in and I am assuredly NOT ready to do that. Not in the least. Besides, who would listen to all of Jasper's bad jokes? Who would ride Little Toot and Boo about chores? Who would make sure that Bubba has a fresh supply of rubber duckies?

So I'm trying again. In so many different areas, I'm trying again.

And, just because we can all use more thrash Praise & Worship in our lives:

TRY AGAIN

© 1989 LIMB RECORDS/LOST AND FOUND, BOX 305 LEWISTON, NY, 14092. ALL RIGHTS RESERVED.

YOU MAKE ME WANT TO TRY AGAIN.

I THINK IT'S SOMETHING I CAN FINALLY UNDERSTAND. YOUR LOVE IS LIKE THE OCEAN, TURN MY PAIN INTO THE SAND.

I THINK IT'S SOMETHING THAT I CAN KNOW. YOUR LOVE IS LIKE THE SUNSHINE AND MY TROUBLE'S LIKE THE SNOW.

I THINK IT'S SOMETHING FINALLY TAKING A HOLD. OH YOUR LOVE IS LIKE THE FIRE AND MY HURT IS LIKE THE COLD.

I THINK IT'S SOMETHING FINALLY LEAVING A MARK. OH YOUR LOVE IS LIKE THE LIGHTNESS AND MY HEART IS LIKE THE DARK.