Gurgle, Gurgle

While I have a Mogwai in my belly, he likes to talk too.  And he is always the loudest when it's the quietest around me.

I practice yoga twice a week or as much as possible.  My belly will be quiet through the entire class.  But when it comes time for shavasana, he wakes up.  In case your not familiar with yoga, shavasana is done at the end of class.  It is similar to a cool down and is when you return your breath to normal and relax all muscles.  I'm not sure if it's all the clenching, twisting, and scrunching done during the class or the fact that my belly just wants to be heard, but he is super loud during shavasana.

It's not just yoga that makes my belly want to speak  up.  He speaks up during the quiet times during a movie, important meetings at work, showing houses, and of course, just before I fall asleep in bed.  I don't know how he knows, but my belly knows just when to talk.

I don't worry about these outbursts.  I can't really put him in a timeout.  Instead, I move on.  Sometimes I'm offered some food which I politely decline (or take if it's something really good).  Sometimes I look around as though I'm trying to figure out where that noise is coming from.  But most times I can't help but laugh.

The Winds of Change

Beginning on Sunday I will be making some changes to my diet.  Why wait until Sunday you ask?  Well tomorrow is my birthday, and I NEED to have my giant cookie.  I'm hoping the new diet changes will help me get some control over the pouchitis.

I've made diet changes in the past.  Some have worked, and some have not.  This is what I have done thus far that's worked:
   1. Eliminated all red meat.  No beef, no lamb, no buffalo much to my husband's dismay.  I did this about 5 years ago during a flare.
   2. Eliminated most dairy.  I still eat hard cheeses and the occasional ice cream.  I did this immediately after takedown after I had my first chocolate milk.  Ugh!!!
   3. Eliminated soy products.  I  figured I'd switch from cow's milk to soy milk.  Nope!
   4. Eat fish at least once per week.  This does not include tuna in those little packets.  I'm talking fresh fish.  I buy it from the seafood counter and never frozen.
   5. During the 2 months between discharge from the hospital and my first surgery I went on a total clean diet.  No preservatives and organic foods.  After surgery I started to add convenience meals back in.  My husband was missing his Hamburger Helper and I missed the convenience of a frozen pizza.

So now I'm entering into the new phase of my diet.  I will be:
   Step 1: Reducing sugars.  I have to admit I have a sugar addiction, and it needs to go.  I'm limiting myself to one small sugary item per day.
   Step 2: Eliminating sugars (except for real special occasions).  I'm giving myself 1 month to get to this point.
   Step 3: Going Gluten free.  This is going to be a slow transition over the next month.  I'm hoping to be gluten free by the time sugar is gone.  I'm lucky and have a lot of gluten free options in my local grocery stores.
   Step 4: If I'm still having problems, I will go to a modified paleo diet.  This eliminates all starches (I will keep sweet potatoes) and dairy (I will keep yogurt & cheeses for some added protein & calcium).  I'm hoping it doesn't have to get this far.  I don't want to get too restrictive, and want to be able to enjoy going out to eat with friends & family.

I will keep updating as I go through this.  I'm excited to see what changes the new diet brings.  Cheers!

PTSD

Traumatic events can bring on post traumatic stress disorder.  It is not uncommon to experience this following j-pouch surgery.  After going through a major illness, having a organ ripped from your body, and the long recovery it is no wonder why.  I was fortunate and did not have many problems with this.

I had a few days following my surgery which I mourned the loss of my colon.  It wasn't so much the loss of the colon, but the realization that I would never be "normal" again.  As long as I had my colon I always had the hopes that I would reach remission.  I never did go into remission.  I would just have less severe flares.  Now that the colon was gone, I knew I would never have a true poop again.  There are still times I miss it.

There is one thing that still makes me anxious at just the site, even now a year later.  That is Ben Franklin standing high atop Philadelphia City Hall.

During my first two stays at Jefferson Hospital I had fabulous views of Ben.  The first stay I was admitted for a flare.  I was a little more alert mentally and could focus on the television and read.  I only looked at Ben from time to time.  But during the second stay, for the first of my two j-pouch surgeries, I was doped up on Morphine.  Not able to concentrate I would just stare for hours at Ben.  It rained a lot during this time, and I would watch the storms roll in behind him.

It was comforting to watch Ben at the time.  Now when I go to the City, Ben brings back the anxious moments.  He reminds me of how sick I felt when the ileus set in and I needed the NG tube.  He reminds me of the pain.  Most of all he reminds me of the loneliness late at night.  Hospitals are no fun at night when there are no visitors to distract you.  Ben became the focus when all was bad.  Now when I see him, all those feelings come back.  Fortunately, it's just one statue sitting high above a building in a city full of even taller buildings.

No Eating Past 7

No one told me I'd turn into a Mogwai after surgery, but that is what happened.  I cannot eat after midnight or I turn into a gremlin.  Not the whole me, just my belly.  And it's not even as late as midnight.  It can be as early as 7:00 pm depending on what it is I want to eat.

Last night I had a meeting for my homeowner's association of which I'm the Vice President.  The management company was taking us out for dinner to celebrate working together during a difficult year.  In order to get all of the business out of the way, we had to meet before dinner.  Uh-oh.  Luckily the meeting went smooth.

Off we go to meet again at a local restaurant, Ruffini's, which specializes in Italian and take-out sandwiches.  We all arrive at 8:15 pm.  My mind is racing.  It's too late to eat a dinner.  I search the menu for anything light that will be tummy friendly.  It's impossible.  Who has heard of light Italian?  As everyone orders lasagna, stuffed tilipia, chicken parm, I order a grilled cheese sandwich.  What?!  Boy the looks I got, but I thought, "Hey cheese slows me down, bread slows me down.  Bingo!".  I threw in a Key Lime Martini to help reduce motility.  I'm supposed to be celebrating remember.

By 9:00 pm when the dinner arrives I'm famished.  I eat it all without thinking.  I soon have regrets realizing what I've done.

10:00 pm I arrive home.  I'm beat, but it's time to clean up for bed.  I've got to help slow my stomach down as well.  I take some pepto and some GasX.  I'm ready for bed by 11:00 pm, and I hop on in.  By midnight I feel the first rumblings.  It's time to get up.  Off to the bathroom I go.  A few minutes later it's back to bed.  1:00 am I'm up again.  So that's how my night goes.  I'm up every hour.  Why is it that your stomach can be so active even when you're not eating?  This I will never understand.

So try as I might to be a regular old Joe, I have my limitations.  The surgeon transplanted a gremlin in my belly.

Butt Burn

Since I'm having a difficult day and suffering from butt burn, I thought I'd describe this to those that have been lucky to never have to experience it.  Since I do not have a colon any longer, I have nothing to absorb the stomach acids (and water) back into my body.  When I poop all these stomach acids come out.  The more often I poop, the more stomach acids come out.  Add patting with toilet paper continuously to the acid and you get butt burn.  Below is a picture of diaper rash, but it is one and the same.

For me, butt burn can range anywhere from just some redness to bleeding blisters.  The best way to treat butt burn is  not yo get it in the first place.  Bidets are another way to help prevent butt burn.  Bidets eliminate the need to wipe with toilet paper reducing any friction against your rear.  I do not have a bidet, so toilet paper it is with me.  The type of toilet paper can make a big difference.  I prefer Charmin Ultra Strong.  I try to avoid the one-ply sandpaper they try to pass as toilet paper in public bathrooms at all costs.

Though I try to prevent butt burn as much as possible, it always rears its ugly head.  So now for the treatment.  I start with a bath in shallow water with epsom salts.  This is a GREAT relief until I get out.  Since it's not ideal that I spend my whole day in the tub, I need something else.  I prefer to use Calmoseptine.  This is a cream made from calamine, zinc oxide and menthol.  I apply it over the burned area and leave it on overnight.  Sometimes I need to apply a few times before the burn is gone.  Calmoseptine is my pink heaven.  It is cooling and soothing.  Think of putting Vick's Vapor Rub on your tush.

Now it's time to take some more pink stuff called Pepto Bismol.

Girls Just Wanna Have Suds

The event actually happened last week, but it was a big step for me.  My friend and I went to Victory Brewing Company for their girl's night out called Girls Just Wanna Have Suds.  It was a beer and chocolate pairing.  What could be more fun than that?

Well for those with Ulcerative Colitis or a J-pouch beer and chocolate spell trouble.  Typically alcohol will slow my frequency down, but beer poses the problem of carbonation leading to gas.  Chocolate is filled with sugar which can cause increased frequency.  This was going to be a big test for the pouch.

So off I go to meet my friend.  When we arrive they give us a glass of pilsner.  We took our time sipping on the beer until snacks.  We munched a bit until it was time for the pairings.  Four beers to go with four chocolates.  A girl's dream come true.  The pairings were great.  One of my favorites is below.  It was the most unique with Dark Intrigue (a stout beer aged in bourbon barrels) and Fortunato No. 4 Traditional Truffle (made from a newly discovered cocoa plant).

The night was a great.  I had fun with all the girls and a great time helping my friend plan her baby's first birthday party.  I only had to use the bathroom twice.  Part of that had to do with testing out so many beers.  As you can see there was a lot to test.

I was worried the overnight hours would be a disaster.  It was a Monday night, and this could ruin my whole week.  When I came home I had some Gas-X and some Pepto to calm the gurgles.  It was a restless night without much of a deep sleep.  I was up often.  I think more out of the fear of possible leakage than anything else.  Besides being a little dehydrated the next morning and awfully tired, the night was a success.  One night of beer and chocolate for dinner did not prove to be too much for my pouch.

A Typical Day

Before I can really let you know day to day events, I should let you know what a typical day is like for me.  I'm choosing to use a weekday because they are more structured, so here goes:
5:20a - The alarm goes off.  I generally have to use the bathroom to pee, but of course a little poop always comes out.
6:30a - I eat breakfast.  It typically involves plain oatmeal with hot water or Kashi 7-grain waffle with fruit spread, egg white,  chocolate almond milk with VSL#3 DS (a prescription probiotic to help with the pouchitis), and a chewable multi-vitamin.  I can't drink cow's milk or soy milk, so I choose almond milk because I like the flavor.
7:00a - My first poop urge of the day, so I go before I leave for work.
8:00a - I arrive at work and eat a Viactive and Luna mini bar.  Sometimes I have some coffee or tea.
9:00a - Another trip to the bathroom to poop.
11:00a - Bathroom trip again to poop.
12:00n - Time for lunch.  My favorite is Ellio's Pizza (my pouch loves pizza), a fruit squeeze (baby food in a pouch), and tapioca pudding.  Sometimes I'll throw in a piece of chocolate.  I follow this with my Cipro (antibiotic) and a digestive enzyme.
12:30p - In the bathroom again with mostly gas, but always a little poop too.
3:30 or 4:00p - Time to go poop again!
5:30 or 6:30p - Gas starts setting in.  I'm uncomfortable and need to go to the bathroom because it's never just gas.
6:30p - Dinner time!  Dinner is always different, but I like to eat healthy.  Followed with a digestive enzyme.
7:00p - Another potty trip for some loud gas and poop.
7:15p - Almond milk smoothie with some fruit and VSL#3 DS.  Sometimes I also have a cookie, beacuase I love sweets!
8:00p - Chew some Pepto Bismal if needed.  Go to the bathroom; another poop.  Take a shower or bath depending on how burned up my bum is.  Then some Gas-X to combat any overnight gas.
11:00p - Poop before bed.
1:00a - First overnight poop.
3:00a - Second overnight poop.

All told I go to the bathroom or poop 12 times a day.  This is an average, so some days are more and some days are less.  My goal is to get down to 6-8 times a day.