Eating Disorder Awareness Week

To support Eating Disorder Awareness Week (Feb. 26 - March 3), I am going to share my story.  Along with UC, I have also struggled with anorexia nervosa.  I'm not sure if Ulcerative Colitis lead to my eating disorder, but it certainly had its influence.

My eating disorder started innocently enough.  After being on prednisone for a year, I began seeing some of the side effects.  One of them was weight gain.  I went to Florida for a vacation, and when the pictures came back I was horrified.  I decided I was going to go on my first ever diet to help reduce some of the weight.

I went back to Tae Kwon Do and started to eat healthier.  It was all going as planned, and I began losing weight.  People were noticing, and I was getting compliments every day.  I relished the attention.  Being the perfectionist that I am, I couldn't leave well enough alone.  I began working out 24/7 and eating less and less.  Things were spiraling out of control, though I thought I was in control.  I was in denial until my GI doctor kept hounding my about my weight loss.  I came clean to him first.  That one phone call helped me in so many ways. It also lead to a closer relationship between my doctor and I that would be so vital later in my treatment.

A year after the vacation I found myself inpatient at Friends, a mental health hospital.  Admission was the scariest moment of my life.  I went into a back holding cell with all other admissions; schizophrenics, manic depressants, and self harmers.  We were all being held together for hours.  I spent a few weeks at Friends where I never really faced my eating disorder.  Without any out-patient follow-up, it was easy to slip back into my old ways.

Again a year later I found myself facing inpatient treatment once again.  This time I chose to go to Renfrew, a center that focuses solely on women with eating disorders.  Unfortunately, I was only inpatient for a few days when I had to be discharged for another hospital stay for a gallbladder attack.  When I entered treatment again, I made the mistake of going to the second step of inpatient where I would spend the working day at Renfrew, but go home for the evening and dinner.  Once again it was easy for me to cheat and never face my eating disorder.

It wasn't until a hospital stay for Ulcerative Colitis that I began to change my thinking.  My wonderful GI doctor was not going to release me unless I checked into treatment once again.  This time I chose IOP (intensive out-patient), but I had a different mindset going in.  After a UC flare while in the throws of anorexia, I realized how fragile my body was.  My heart was ready for the change, but my mind wasn't.  I struggled a lot during this time.

It was during this time that a met a great bunch a girls in a therapy group for women 30 & up.  These girls could relate to everything I was going through with my eating disorder and life.  We supported each other and I can't say enough how they helped me face some of my biggest fears.

This final round of IOP and group therapy helped a lot, but it wasn't until I faced surgery that I finally gained control over my eating disorder.  A switch came on where I finally saw what life had to offer me, and what I had to lose.

It's been 1 1/2 years since my surgery and my eating disorder is still with me every day.  It talks to me when I'm eating telling me how fat and disgusting I am.  How much of a failure I am for giving in to the temptations of food.  The difference is today, I can talk back to my eating disorder.  Food is my medicine and it keeps me healthy.  Anorexia Nervosa will be a continuous war for me, but today I am winning the battles.

P.S.  To all my friends who are still struggling, I hope you find the switch that leads you to wellness.  It's there; keep fighting.

A Roller Coaster Ride

The past weeks have been an up and down ride.  I have a few good days followed by a few bad days.  It's all highs and lows with no middle flats.

I was having a great spell.  I was going poop 5-7 times a day (an all time low).  The grumbles were reduced.  I was having more energy.  I hoped the gluten free diet was working its wonders.  Then I had my baby blockage and my pouch utopia was up-ended.

For the past week my pouch has been all over the place.  I've gone from pure liquid every 1/2 hour to hour to struggling to empty.  My rectal cuff became inflamed and sore, and my butt was on fire.  I had the anal itch that you just cannot scratch.  It was painful to go to the bathroom, and I wanted to avoid it but I couldn't.  Also in this time my previous abscess began to ooze again.  The cyst on my tailbone has been killing me.  Needless to say, I was miserable.

My pouch seems to be turning a corner again.  Things are improving, slowly.  I don't know what causes these sudden shifts.  It is the most frustrating part about the pouch, or chronic pouchitis.  I can't say if this is normal because it's all I've ever experienced, but I've had chronic pouchitis before it was even diagnosed.  A lot of people pay good money to go to amusement parks to ride roller coasters.  I get to ride one for free every day!

Birthdays and Blockages

In the hopes of living a normal life I sometimes forget that I am not normal.  My husband and I had tickets to go to Victory Brewing Company to celebrate their Sweet 16th birthday.  I was super excited to eat some good food, try the new chocolate beer they were unveiling, and yeah, spend some time with my husband.

The dinner was a five course dinner with beer pairings for each.  Since surgery, my stomach cannot hold as much as it could before, so a large meal can have its own share of problems.  Add in beer, gluten, and dairy I knew it was going to be a long, sleepless night.  But the experience was going to make it all worth while.

The meal and beer was delicious.  Chocolate beer is awesome!  I met some great people, and my husband won the grand prize give away of 15 Victory t-shirts.  For buying the tickets he let me pick out 3 for myself.  One thing I did not do was drink any water the entire evening.  Towards the end of the night, I started to feel a bit queasy.  I chalked it up to some indigestion for eating and drinking too much.  We went home, chilled for a bit, then went to bed.  I was still a bit nauseous.  I was up and down most of the night pooping which I expected.

The next morning I got up still feeling a bit sick.  I ate a small breakfast (cereal & almond milk).  My stomach immediately started to heave & ho.  Ugh...I thought I'd be feeling better by now.  I start to feel the pain shortly after arriving at work.  The pain is just below the stoma scar, a great place for blockages.  I immediately start drinking as much water as possible to help with the dehydration and push whatever is stuck through.

I'm still pooping as normal, so I eat a light lunch.  I'm still not real hungry.  I eat some chicken, applesauce, and a cookie.  Now the waves of pain begin.  Stuck at work, there's not much I can do.  I keep chugging the water hoping that will help.  I have some gas, poop a little more and think maybe things are gone now.

By the time I get home, I have no more pain and am ready for dinner.  We're having the gourmet meal of hamburger helper (one of my husband's favorites).  This does not sit well at all.  The pain immediately comes back and I'm doubling over with each spasm.  I poop again.  Thank goodness I'm still pooping.  It's yoga night, so off I go.  Worst case scenario, I can't do the poses.  Best case, I work whatever is there loose.

I decided not to eat the rest of the night, kept pounding the water, and rested.  Though scared to eat the following morning, I was beginning to feel better.  I had another light breakfast which sat nicely.  Fortunately, this was just a baby blockage.  It is just another reminder that my plumbing is not what it used to be.  I may want to be like everyone else, but I have my limitations.  I can still go out and have fun, but I can't indulge like my younger days.

My New Tattoo

After many years of contemplating on what kind and where, I finally got my first tattoo a week ago.  It was my 34th birthday present to myself.  I decided on a tree design with the Crohn's & Colitis Awareness ribbon hanging on the left and the Eating Disorder Recovery symbol hanging on the right.  The tattoo represents the growth that I have gone through with both disorders and the strength that they gave me.  Having a chronic disease has taught me many things in the years that I have suffered.

I have learned that the body is in a delicate harmony with itself.  One little thing can lead to a series of problems that can take years to recover from.  Malnutrition has lead to the immediate effects of dry skin, lack of energy, and depression.  It has also lead to more series problems such as low blood pressure, fainting spells, osteopenia, and anemia.  On one occasion I had a leukemia scare when all my blood counts dropped.  It was believed to be a side effect of medicine I was taking for Ulcerative Colitis.  Another nasty side to chronic disease.  Today I am sure to take all medicine as prescribed, eat healthy, take vitamins, and exercise to keep the ying and yang of my body in balance.

I have learned that while the body can be weak, the mind is always strong.  If you think that you can make it through, you can and you will.  There were many nights (and days) I felt I was at the end of my rope.  It is easy to lose hope and give up.  I would like to say I never did, but I had my moments of hopelessness and helplessness.  I would lose my way, but I always was able to find it again.  I found it helpful to seek the guidance of a therapist and still see one today.  I don't see this as weakness.  I have learned the most about myself through therapy sessions.

The greatest thing Ulcerative Colitis and Anorexia Nervosa have given me is gratitude.  I am grateful for all that I have in my life.  I am grateful for my husband, cat, and family.  I am grateful for all my friends who have stuck by me in all my troubles.  I am grateful for my job, and having a great boss who is so understanding.  I am grateful for each day that I am able to get out of bed, get dressed, leave the house, and have the world at my fingertips.

This may seem like a lot of meaning for just one little tattoo.  I'm sure my next tattoo will mean absolutely nothing.

1 Week

It's been one week since I started my new diet.  I have to admit I wasn't too good at sticking to it the first couple of days, but I have been faithful since Saturday.  I had a lot of left over food in the house that I didn't just want to get rid of such as regular waffles and lots of sugary junk food.

I made one modification to my diet.  I had a CCFA (Crohn's & Colitis Foundation of America) meeting on Thursday night.  The speaker was a pediatric GI doctor from CHOP who is also doing some research at Penn.  She is also a Crohn's patient, so she has lots of experience.  I spoke to her a bit about diet since that was a big part of her lecture.  She suggested eliminating one food group at a time.  I chose gluten and am just reducing the sugar intake for now.

This is now my typical day:
Breakfast:
  Gluten free waffle w/ sugar free fruit spread
  Almond milk w/ VSL #3DS
  Egg whites
  1 chewable multi-vitamin
Snack
  Lara Bar
  Viactive
Lunch
  Organic chicken breast
  Almond milk yogurt
  Fruit pouch
  1 Girl Scout cookie (my treat for the day)
Snack
  Rice crisps
Dinner (varies)
  I like a protein with well cooked veggies
Snack
  Almond milk fruit smoothie w/ VSL#3DS

I have noticed some promising improvements.  The first and best part is no more nighttime leakage.  This is by far the most embarrassing symptom of pouchitis.  Second is a reduction in gas.  I still get gassy after a meal, but I have not had the excruciating gas pains that have been plaguing me since takedown surgery.  And just today I've noticed a thickening of my poop.

This is all still so new, so I'm not sure how much is the food and how much is just my body.  I can go days feeling good, then have a set back and I'm straight back to the beginning.  This is promise though.