What Doesn't Kill You Makes You Stronger

My tumor removal surgery still wouldn’t be my last surgery.  The summer before 10^th grade I had my fifth surgery to remove a section of obstructed small bowel.  After the previous four surgeries, I was left with a large amount of scar tissue.  People with FAP grow things excessively – polyps, tumors, and even scar tissue.  Everyone makes scar tissue from surgeries, but people with FAP make much more scar tissue then the average person.  My bowels would periodically get twisted up in the various webs of scarring in my bowels, which doesn’t allow your poo to move through the small intestines, which in turn causes severe pain, not to mention if you can’t poop, eventually you’ll die.  In 1990, I had such a bad episode of obstruction that I was back and forth a few times to the ER in severe pain, vomiting, and my bowels were distended from not moving forward.  Things would seem to free up a bit, and then I’d go back home, only to get worse again.  After a few times in the ER for several hours, my parents had to take me back.  I began to vomit shit, yes actual shit, to be quite frank.  Since it couldn’t go forward through its normal route, it decided to go backwards.  Dr. Martinez came to the hospital and said he needed to open me up and remove the obstructed section of bowel.  Again, I did fine.  At this point, it was no big deal.  What was one more surgery?

As I got older, I started to think (unrealistically) that I wouldn’t live to see at least 30.  I just felt so beat down by the FAP that I thought I’d eventually get small bowel cancer, or one of the various other cancers the disease can cause and that would be it for me.  It wasn’t realistic for me to think that way because I knew what I had, I knew the risks, and I saw several specialists to have routine testing done to screen for the cancers I am at risk for.  But in my mind, I felt defeated, like I would never grow old, surely I would never be a grandmother or get wrinkled and grey.  I was sure I wouldn’t live that long.

But I kept living and doing well, in spite of my negative attitude.  I had some ovary surgeries to remove benign growths on my ovaries (and ended up losing both of them eventually), which had nothing to do with my disease, it was just bad luck.  When I was little, I never thought I’d have children, but I did.  I got married, I had kids, and I was doing everything “normal” people do.  As my 30^th birthday approached, I realized I never thought I’d make it to that number when I was younger.  But here I was, nearly 30 and doing well.  At that point, I decided I’d probably live to 40 and beyond.  And now, I’m pretty sure I’ll live to be really grey (I’m already getting there), wrinkled, and aged.  Like a good friend of mine says, who has also survived a bad childhood illness, “I’m a weed.”  And weeds survive all kinds of horrible conditions.

The last surgery I had was my ninth one, and I’m really putting positive energy out in the universe that this is the final one.  It was over four years ago and after a yearly, routine endoscopy (a scope with a camera on the end that looks into your stomach and the first part of your small intestine – the duodenum), my gastroenterologist found a polyp in my small intestine that looked strange.  The biopsy came back as severe dysplasia, the stage before cancer.  After deciding what to do about it – whether to biopsy it again in six months to keep an eye on it or just have it surgically removed – I decided it was going to have to go eventually, so I decided to have it surgically removed sooner than later.  I’m not one to stick my head in the sand. 

I waited to have the surgery until the summer when my kids were finished with school so that it wouldn’t be as hard on them or my husband.  I thought it would just be a five day hospital stay.  No big deal, I’d done it many times before.  The surgery went fine and so did my hospital recovery.  But after I went home, I spiraled down and ended up back in the hospital a week later with incredible pain and a really bloated stomach.  The cancer causing polyp that I had was near my pancreatic bile duct, called the ampulla.  When they removed the polyp, they had to remove the area where the bile duct dumps into the duodenum, in case any cells are left behind to cause cancer later.  Sometimes moving this bile duct and handling it during surgery really pisses off the pancreas.  Sometimes it happens and sometimes it doesn’t.  It’s a crap shoot.  My pancreas got really pissed and I was sick with post-operative pancreatitis. 

I was readmitted to the hospital and not allowed to eat at all.  Pancreatitis requires no food by mouth, as eating just makes the pancreas more inflamed and angry.  I would be there for a week.  I would spend both my son and daughter’s birthdays in the hospital.  In fact, I had to be given special permission to leave the hospital for three hours so I could attend my son’s birthday party.  Luckily we had my daughter Bluma’s birthday the day before I was readmitted to the hospital.  My family brought Bluma’s presents to the hospital on her actual birthday so that I could see her open them up.  After seven days, my blood work showed my pancreas was happier, so I was allowed to eat solid food again and go home.  But it was short lived and I ended up back in the hospital a week later, still with pancreatitis.  Same routine.  No food, only clear drinks and broth.  I was bred for this.  This is what my childhood was about – surgery, hospital, pain, no eating.  Please, this is nothing. 

There I was, in bed just like I was 25 years before.  I was lonely, starving, and guess what?  I celebrated my birthday in the hospital.  But I didn’t care about it like I did when I was nine.  I was an adult now and you start to not want to have a birthday and watch another year go by.  It was déjà vu in its most literal sense.  But the only feeling that was the same was the feeling of abandonment and loneliness.  My parents had been in town for my kids’ birthdays, but they had left while I was in the hospital the 2^nd time.  When I had the surgery, some of my friends and neighbors came by, but everyone was sick of me being sick and nobody came anymore.  Marcus saw that I was in despair, so he emailed some of my friends to see if they could come by.  A couple did, which meant the world to me.  I was going to get through it no matter how deserted I felt, because I’m strong and because I’m a mom now.  My kids needed me to be home to take care of them.

I left the hospital just after my birthday, but returned that summer three more times.  I lost over 20 pounds, once again, just like 25 years before.  History has a way of repeating itself, maybe so we’ll learn something from it.  I’m not clueless.  I saw the irony and the meaning in it all.  I realized I had grown a great deal emotionally over those twenty five years.  I did live to be thirty years old and what I learned from it was that nothing can keep me down.  If I can survive that crap at nine and all the shitty stuff after it, if I can do this again at thirty four, I can do it a million times and I can do anything.  Quite simply, I can survive anything.  There is nothing you can say and do to me that will break me down.  I am one hundred percent sure I can survive anything thrown my way.  Maybe I’m full of myself or I think I’m stronger then I actually am, but I’m pretty certain I am invincible. 

Welcome to Sixth Grade

The desmoid was growing in size every day and I had to get a new surgeon, one who could get every last bit out of my body.  His name was Dr. Martinez.  He was from Paraguay and he had a funny accent that made me feel better about the whole situation, because he had a great sense of humor too.  He told my mom I couldn’t wait at all.  The mass had to come out immediately.  I was scheduled the next week.  But I was starting school in two weeks.  There was no way I’d get to go to the first day of school.  I’d probably miss most of the first week of school and I’d be lost trying to figure everything out at the new school.  My anxiety was reaching melt-down levels.

The only thing positive I could possibly see about having the tumor removed was that I saw an opportunity for Dr. Martinez to fix my ugly scars.  I asked him if he could fix them when he cut my tumor out.  He commented that he agreed with me that my colectomy surgeon Dr. Lily had certainly done a pretty poor job of giving me a clean and tidy incision.  He said he’d fix it up when he removed the tumor and he’d try to make my tummy less bumpy.  That made me feel so much better.  At least something good would come from this stupid tumor. 

My surgery had to be scheduled at St. Joseph’s hospital in Denver because they had a radiation unit in the OR.  In 1986, doctors thought radiation could help kill the tumor if they weren’t able to remove it entirely.  They thought the radiation would prevent any leftover tumor cells from growing back, but that has proved over the years to be rather useless in desmoids.  After the surgery at St. Jo’s, I would be transported by ambulance a whole three blocks to recover at Children’s Hospital in Denver.

I had the surgery thing down and of course wasn’t worried about surgery itself.  I was just hoping and praying when I woke up, the tumor would be 100% gone and I could move on with my freakish life.  When I awakened in the post-operative room at St. Joseph’s hospital, my mom told me Dr. Martinez felt confident he had removed the tumor entirely and that it probably wouldn’t ever grow back.  A weight had been lifted off my shoulders.  I was pretty tired and drugged out, so at the time, I wasn’t expressing any happiness, but I was thankful to hear I wouldn’t have to go through this again.  I was then wheeled downstairs to the ambulance bay and transported to Children’s hospital.  Luckily, this is the only time I have ever been in an ambulance and it wasn’t anything exciting.  I was high as a kite and exhausted and the ambulance was just a glorified taxi I could lay down in to get to my destination.

My recovery at Children’s was uneventful, thankfully, and I went home after about six days.  My new and improved incision looked so much better!  It was straight and a lot thinner in width.  It was going to look so much better when it healed than my previous incision.  My stomach wasn’t as bumpy now and the freakish alien head wasn’t popping out of my abdomen anymore.  That sucker was gone.  But the tumor had wreaked havoc on my stomach muscle anatomy.  The mass was on the right side of my abdominal wall.  Desmoid tumors invade muscle, fat, and connective tissue, bundling it all up in its path as it grows in size.  Removing the tumor had left a hole in my stomach muscle wall – known anatomically as the rectus abdominus.  Muscle does not grow back once removed, so I would have a hole in my stomach wall and nothing to cover my bowels, so Dr. Martinez transplanted muscle from the other side of my abdominal wall to cover the hole on the right side.  This was a great solution, however, my stomach muscles would never work properly again. To this day, I am unable to do a sit-up, I have very little stomach muscle control, and although I am very strong in my core from personal training and taking TRX exercise classes, I mostly use my back to hold myself up when doing such things as planks and pushups.  But at least I can still do them and I am thankful to have any muscle control in my abdomen.     

School was just starting as I was released from the hospital, but I’d have to stay home a few days and rest before I could go back.  I missed the first four or five days of school.  My mom walked inside with me.  I really didn’t want to go to school at all.  I knew it was going to be awful.  We met the secretary in the front office and she showed me around the school, gave me my class schedule, showed me where my classrooms were, and where my locker was.

I was already behind.  I had extra work to do to catch up.  I was a good student, so it wasn’t a big deal, but I always felt like I was playing catchup.  I felt like all I did was get knocked down, just to get back up and start running again to try to catch up with the pack, only to get knocked down again.  The whole thing felt futile.  But what else was I going to do?  I was only eleven and I had to go to school, try to fit in, and just get through it.  Growing up is tough for everyone, no matter how easy you have it.  It’s hard enough to go through puberty and becoming a teenager when your body is perfectly normal and you have everything going for you. 

Middle school was tough for me.  It was like a black hole.  A lot of it I don’t remember (thankfully), just that I was pretty lonely and I didn’t fit in well.  I didn’t go through puberty like most of the other girls.  I was significantly growth delayed from all my surgeries and subsequent health problems.  I was geeky, freaky, and completely insecure, not unlike many kids in middle school.  But I just wanted to be normal, in the sense that I didn’t have a genetic mutation making me different from everyone else I knew.  I wanted to feel like I wasn’t in “the only one club.”  I didn’t want to feel alone anymore. 

Round 2

In spite of the social problems I had post-surgery, I somehow managed to get through fourth and fifth grade and move onto middle school.  At some point during fifth grade, I started to feel a strange sensation on the right side of my abdominal area, close to my incision from my colectomy.  The feeling was a cross between a stabbing pain and the feeling of my muscle being ripped apart.  The sensation would last a minute or two and then it would go away.  I might not feel it again for several weeks, or some days it would happen two or three times.  I had no idea what it was, but I was almost eleven by then and I really didn’t care.  In my mind, I was never going to have any more issues with FAP and those three surgeries I had before fourth grade were going to be it.

As the summer before sixth grade was approaching, it became pretty obvious there was something wrong in my abdomen.  There was a freakish, protruding, round hump on the right side of my incision.  It was rather hard to the touch and it was ugly to me.  My stomach already had an unsightly cut down the middle vertically, from my pubic bone area up to my belly button.  And then I had the horizontal cut on my right side of my belly where the ileostomy was.  The muscle and fat pushed out around where I had been cut, accentuating the incisions even more.  Now I had this ugly bump, and I figured it was normal and I could add this to my list of things I hated about me and my body.

It was summer and I spent a lot of time swimming and wearing a bathing suit.  My mom began to realize that bump on my stomach probably wasn’t something normal.  It seemed to be getting bigger and uglier every day.  You could really see it through my stretchy bathing suit.  The thing looked like the head of one of those aliens (from the movie Alien) getting ready to birth itself and rip open my skin to reveal a nasty, gooey, hissing creature ready to tear anyone’s head off.  The truth is, there was a nasty, tissue eating mass growing in my abdomen and it was probably every bit as ugly as an alien. 

My mom suspected I was growing a desmoid tumor.  Desmoids are a very rare tumor that are highly associated with FAP.  They start growing only after muscle and fascia are cut during surgery or more rarely, ripped or torn for example from a sports injury.  When muscle and fascia are cut during surgery, they normally scar and grow new tissue to fill in the space that becomes the incision scar.  After there is enough tissue to keep the skin, muscle, and fascia together, the body normally stops this growth process.  But sometimes, in people who have FAP, along the incision area, underneath the skin where all the connective tissue lives, the cells keep growing even after the surgical area has completely healed.  The cells of that connective tissue keep overgrowing and nothing tells them to stop.  When that happens, you officially have a tumor.  Desmoid tumors are benign in definition because they do not grow within organs and invade the blood stream, sending the bad cells to other parts of your body.  That is what a malignant tumor does – what cancer is.  But desmoids are anything but “benign.” 

Desmoid tumors don’t stop growing, they grow at an incredibly fast rate, and they will push organs out of the way and engulf nerves and blood supply structures.  They are very tricky to remove completely because of how invasive they are.  Quite simply, they are like a weed, like bind weed to be more exact.  The only way to get them out of your body is to surgically remove them, but a surgeon must be careful to remove every single bad cell of the tumor because much like cancer, if you leave one cell, the thing will just grow again.  Unfortunately, these tumors do not seem to respond well to radiation or chemotherapy regimens.  So if you are unlucky enough to have one of these tumors that surgeons are not able to remove completely, quite simply you are pretty much shit out of luck.  Most certainly, the tumor will keep growing back and it might get to the point where surgeons cannot control it anymore, and eventually the tumor causes death.  Most patients who develop desmoids successfully have them removed permanently, after at least one surgery.  But some are not so lucky and there have been several deaths in FAP patients from these nasty tumors.

My mom was pretty sure I had one.  She should know.  She had one, and had to have it removed when she was pregnant with me.  Her desmoid was growing in her body before she was pregnant, probably as a result of her c-section surgery three years prior when she had my sister.  It was small enough that she didn’t know it was there, until the pregnancy hormones fed the tumor like a large man at an all you can eat restaurant.  Desmoid tumors love hormones and seem to grow much better when there are a lot more of them around.  So my mom’s tumor grew so fast and so enormous from her pregnancy, that the damn thing was pushing me all over the place.  It was threatening my life, so away it went a few months before I was born.

I had to go in for a CT scan, to see if the freakish thing in my abdomen was a tumor.  I had to drink the disgusting white liquid before the scan, so it would better show the contrast between the growth and normal anatomical tissues.  I had to drink this crap every 30 min for about a total of four of five hours in preparation for the test.  Back then, you had to ingest the contrast to get it into your body, but technology has progressed and now doctors inject contrast directly into your veins so there’s no more nasty stuff to drink.  Once again, I was born too early to reap the benefits of more modern technology.  After vomiting up the last bit of contrast I had to drink just before the test, I went in for another dose of healthy radiation – the CT machine. 

And the results of the test: a mass the size of a toddler’s head in my abdomen.  I had just won another trip to the OR.  It was about two weeks before my first day of 6^th grade.  How fitting.  Wouldn’t you know it, I couldn’t even start middle school off with as normal as an experience as possible.  Clearly that wasn’t how I rolled.  It was already going to be rocky without surgery complicating things.  I knew I was going to get picked on, made fun of, and bullied.  That was my life, but now I had to deal with the hospital again and recover while trying to dodge the hell of being in middle school with old and new mean girls.  I couldn’t catch a break to save my life.  From the time I was in my mother’s womb, I was suffering and here I was, still suffering, ironically from the same damn thing that threated my life eleven years ago.  How ridiculous.

Silent All These Years

I hate talking about it –the bullying I endured after my surgery and on and off throughout middle and high school.  After being silent about it for so long, I'm ready and willing to talk about the disgusting and repugnant act of bullying. 

What is bullying anyway?  The Webster dictionary formally defines it as a person who is habitually cruel or overbearing, especially to smaller or weaker people.  This is an over-simplified and dated definition if I may say.  Wikipedia (yes, the go to place for getting recon on famous people and other mundane things) defines bullying much more detailed and contemporary.  It says, Bullying is the use of force, threat, or coercion to abuse, intimidate, or isolate to impose domination over others. The behavior is often repeated and habitual. One essential prerequisite is the perception, by the bully or by others, of an imbalance of social or physical power. Behaviors used to assert such domination can include verbal harassment or threat, isolation, physical assault or coercion, and such acts may be directed repeatedly towards particular targets. Justifications and rationalizations for such behavior sometimes include differences of class, race, religion, gender, sexuality, appearance, behavior, or ability.  If bullying is done by a group, it is called mobbing.

I was most certainly a target of mobbing more than once, and bullying was commonplace for me during fourth and fifth grade.  As I moved to middle school, the bullying actually became more sporadic.  I think this might be because several elementary schools dumped into my middle school and suddenly, there were more people in my grade.  I was able to hide among the masses much better.  The bullies were able to find other things to focus on and probably, other victims to harass, hate, and isolate.  But I was still bullied and made fun of all the way through my junior year of high school.  But by then, I was becoming less and less upset by it and I was beginning to grow protective armor. 

Even as an adult, I still feel bullied sometimes.  I am particularly sensitive to it.  It happens to friends, I see it in my Jewish community, and sometimes it happens to me.  But I don’t take it anymore.  I fight back.  Now, it hasn’t always worked out well for me to fight back against it.  Sometimes the bully is so shocked that I have had the audacity to deflect their words back at them, they figuratively throw their hands up in the air pretending to be the victim.  They have no idea how to deal with it because they’re used to just being an asshole to others and getting away with it. 

To me, bullies are a baby form of a sociopath.  Sociopaths are, to put it very simply, people who feel no remorse for terrible behavior and no empathy for other’s suffering.  In order to do that, you have to be incredibly selfish and self-absorbed.  To not think about how saying something to someone like “you are so ugly, you should just die” makes them feel, is an incredibly selfish thing.  To not try it on yourself first so see how it fits and feels before making someone else wear it, well that’s the heart of the problem.  Bullies don’t stop and think once how it would feel if it were done to them.  And they rarely notice what they’re doing is even wrong.  Many bullies aren't going to notice 20 years later that they were vile to their victim and atone for it.  That just doesn’t cross a bully’s mind. 

Now, I’m not saying once a bully always a bully.  I truly believe many grow up and become decent and loving citizens.  But I believe some never change.  Sometimes I feel like I’m still in grade school or high school.  I still have incidents where I feel bullied by an acquaintance, a family member, or an in-law.  I realize everyone probably feels this way at different points of their lives, like they’re still in grade school.  It’s hard for me to see, when someone does something rather cruel to me, that it’s just mean adult behavior, and not bullying like when I was little.  It’s hard to separate those two feelings out from each other. 

The most recent event that comes to mind, where I felt picked on and had to separate out my brain’s memory of the past from current life, was just a few weeks ago.  I attended my friend’s daughter’s wedding and I was delighted to be there on such a happy occasion for the family.  I was having a fine time until during the cocktail hour when a friend of the bride’s mom saw me waiting at the bar for a glass of wine and approached me.  I’ve met her before so I said “hi, how are you doing.”  She answered with the obligatory “good.”  Then she said to me the strangest thing – “Were you in the wedding?”  Now, she is a very good friend of the family and she knew who was in the bridal party.  I said “Of course I wasn’t in the wedding.”  She said “Well you look like it with that dress you have on.”  I asked her what she meant by that.  She said “Well, the bride’s maid’s dresses are purple, as you know, and your dress looks an awful lot like the color purple.”  I was wearing a royal blue dress, nothing remotely close to purple.  And, I was wearing red shoes.  I think that’s what pissed her off so much, that I dared to wear red shoes.  I said to her “I don’t know how well you are seeing in this light, but I am wearing a blue dress and it is not purple.”  This woman said, if you can believe it “Well, it looks purple in certain light and you just shouldn’t have ever considered wearing that color.”  I looked at her, gave her the most confused, yet disgusted look, took the wine the catering staff handed me and walked away from that nasty woman. 

As I walked away, I suddenly felt really sad and attacked.  At first, when she was doing it, I just thought she was insane and crude.  But a few minutes later, I felt attacked, singled out, and quite simply, bullied.  I looked around and counted four female guests, not in the wedding, wearing purple dresses, but she wasn’t approaching them and admonishing them.  Why did she single me out?  That’s what brought back the raw feelings of bullying for me.  The feeling of being the only one, the only one targeted, the one who was isolated.  In some ways, this woman’s behavior ruined the rest of the evening for me.  I just wanted to leave.  Perhaps my friend, the mother of the bride, was mad at me too, thinking my dress was too close to purple.  And I had even went out of my way when buying a dress for the event, to not try on any dresses that were plum or purple, because I knew the bride’s colors were purple and orange and I would never want to take away from that. 

I realized the next day that I had done something at the wedding I don’t do much anymore, I gave that nasty woman all my power and emotional energy.  I let her ruin the rest of MY evening at the wedding.  I gave her the power to allow myself to feel stupid and unwanted.  She was an idiot, not me.  But I was acting foolish by letting her get to me and get inside my head.  When I walked away from her, I should have thrown her insults away too.  But I let them get to me.  That’s my fault.  People who act like this asshole woman don’t deserve our energy.  And this is the difference between adult bullying and childhood bullying.  When you grow up, you have to ignore bullying and not let it get to you.  Yes, you stand up for yourself, walk away, and move on immediately.  But that’s not how it should work for children.  They are simply too little, too fragile, and not abstract thinking enough to be told to just ignore it.  They must be defended, listened to, protected, and supported. 

However, that still doesn’t seem to be happening currently, even after countless tweens and teenagers have taken their own lives directly due to mobbing and bullying.  And the incidents of bullying seem to be on the rise due to social media websites, where bullies thrive on anonymity and cowardice hiding behind their computer.  These mini sociopaths deserve a public verbal flogging and some swift punishment from their parents, but unfortunately, many of these little bullies are the progeny of big bullies who often defend their child’s disgusting behavior. 

I would love to name each and every person who bullied me as a child, but I won’t do that.  After all, I am even facebook friends with some of them.  The reality is, I’m not angry at them anymore.  I still have pain, but I have grown up, moved on, blossomed, and forgiven them entirely.  None of them have ever asked me for forgiveness personally.  A few have expressed remorse, but none have ever said specifically that they are sorry for what they did to me.  But it’s ok, I don’t need them to.  I’ve forgiven them, for me.  It’s not for them.  It’s for me.  It’s what’s best for me to be happy and thrive.  And that’s exactly what I deserve, to thrive.  After all the bull shit I’ve been through, I’m damn proud to say, I’m thriving, against all odds.

The Devil You Know

My ileostomy take-down surgery was uneventful - besides the raw skin -  and I left the hospital after a week.  I went home to learn what a true joy having a synthetic rectum was.  Besides having diarrhea perpetually, having this new set up also caused nocturnal incontinence.  It’s a fancy medical term for crapping yourself while asleep.  It was like I was a baby again.  At first I thought (even though the doctor told me otherwise) that this would just be very temporary, not a year or two like they said.  I’d figure it out and conquer it before school started in a few weeks.  After all, I didn’t want anyone finding out at school.  There’s no way I could live that down.

But I was wrong and the surgeon was right.  School started a few weeks after I returned home from my butthole hook up surgery, and I was still incontinent at night.  I wasn’t having trouble during the day while I was awake.  The doctors told my mom that I’d probably leak in my underwear while awake for a year or two.  But I simply could not do that, so I willed myself to not let that happen.  It was a different story when I was asleep.  I had no control at all, as hard as I tried.  It was incredibly embarrassing and depressing.  There’s nothing that strips your confidence and spirit more than losing control over your body.  It seems like a basic human right to be able to hold your stool and put in a place it belongs.  It feels so dehumanizing when you can’t do that anymore. 

I wasn’t too keen to go back to school.  I wanted to stay home and be home schooled.  But I had to return, I had no choice and I knew things were not going to go well.  What would I do if I was invited to someone’s house for a sleepover?  And I certainly didn’t want to have anyone over to my house to sleep with me and find out my dirty secret.  The first day of school, I only used the toilet once.  My mother had talked to the school about letting me go to the bathroom whenever I needed.  But somehow, I thought my classmates would notice how often I used the toilet and figure out that I had a pooping problem.  So I held my bowels against all odds until I’d feel like I was going to explode.  Some days, I’d actually make myself nauseous holding it so long.  My mom kept telling me that I had to go several times while at school, but I was just so self-conscious.  And if I were in the toilet while another girl was, I was afraid to go because I made a lot of noise when I toileted.  The act of crapping when you have a small bowel pouch rectum and eternal diarrhea is not a silent one.  It sounds like an explosion going off to be quite frank.  It’s still something I am ashamed of, but then again, why should I be ashamed?  I didn’t ask to be born with this disease.

Things seemed alright at first when I returned to school.  I was playing with the girls I normally did.  They weren’t acting that different to me.  But as the weeks went on at school, things began to change.  Slowly and deliberately, the girls in my class began to isolate me from themselves.  I noticed their attitude changing around me.  They didn’t want to touch me, they didn’t want to play closely with me, and they didn’t want to include me in their conversations.  I knew what was happening right away.  I couldn’t do anything to stop it.  I tried hard to make them want to keep me in their circle of friends and see that I wasn’t a disease, that I was a nine year old girl like they were.  I tried to make them laugh and I tried to make them think I was fun and cool to be around, but it didn’t work.  I knew why they didn’t want to be around me.  They knew what was wrong with me.  They knew about my shit bag, they knew about my illness, and they knew about pooping my pants at night.

I was in a Girl Scout troupe with at least half of the fourth grade girls at my school.  Several of them had come to visit me in the hospital.  Before they came to the hospital, their mothers explained to them (from information my mom had given) why I had surgery and what was done surgically. They knew I had an ileostomy.  Great, just what I needed.  I was mad at my mother for telling them.  But what really made me mad is that in the fall of that school year after my surgery, one of my classmates had a sleepover birthday party and I was invited, along with all the other girl scouts.  I didn’t want to go because I knew I would have an accident.  I mean, I wanted to go and be with the other girls, but I knew what would happen.  My mom told me I really should go and that it would be ok, I could clean myself up discreetly.  I don’t think my mom really understood how degrading it was for me.

So I went to the sleepover and it was a nightmare.  I woke up in the middle of the night having had an accident.  Everybody else was asleep, so I cleaned myself up.  Back then, there were no “good nights” diapers for big kids.  All I had were chucks absorbent pads and they didn’t really work.  I was cleaned up and I had extra pants but my sleeping bag was a mess.  I had to try to clean it up.  After that, I went back to sleep, but I know in the morning that everyone saw and found out what had happened that night.  How could they not see that I clearly had soiled my sleeping bag? 

It was over.  The cat was out of the bag and I hated my mother for convincing me to go.  I wanted to be normal and fit in, but I couldn’t.  The kids knew my secret now and that’s when things started to change.  The isolation was slow and deliberate.  They wanted to make me suffer I guess.  But the girls in 4^th grade finished me off one day.  It was perhaps October and I was playing by myself on the black top, bouncing a ball around.  About fifteen girls got together and approached me where I was playing.  They said to me “you can play with us one more time and that’s it.  You can play with us today, or you can play with us tomorrow, but not both and that’s it.”  I remember looking at all of them with tears welling up in my eyes and I thought of the only thing that made me feel like I had any dignity and power.  I said “Well then, I don’t want to play with you either day.  I don’t want to play with you at all.”  One of the girls spoke up and said “Good, because we don’t want to see you again.”

And with that, they walked away.  I remember putting my back against the brick wall of the school building and sinking down low unto the ground, tears rolling down my face.  I sat there and said to myself “Nobody loves me anymore.”  I was sure my mom didn’t either.  I just felt like a burden to her and my family, and a plague to the rest of the world.  Nobody wanted to come near me.  And that’s when I started to hate myself and wish I had never been born.

The bullying became commonplace after that.  There were a few quiet and non-social girls not in clicks that would play with me some days, but for the most part, I played alone.  I could be on the swings and someone would yell over from another swing “Heather poops her pants.”  Some of the boys would make fun too.  But the girls were monsters.  They were repugnant.   What’s even worse than the mean things my classmates did to me - not one teacher, not one playground aid, and not one other student ever intervened to stop the abuse.  There were teacher aids on the playground always.  They saw those girls approach me and isolate me.  They saw me playing alone and they did nothing.  They ignored me.  I was invisible.  No other kids said “Hey, that’s really mean.  You made Heather cry.  That’s not nice.”  Nobody did anything.  And that’s the sad reality of bullying.  There’s always witnesses and they often do nothing.

Welcome Back

The six weeks with my new friend the ileostomy moved past me as fast as the summer had.  My summer sucked to say the least.  It wasn’t one I would want to repeat.  The time came for me to go back to the hospital to have the ileostomy taken out.  That meant I would get to use my wonderful, new small intestine rectum.  I had no idea what to expect and I was pretty clueless about what it would be like and the number of issues it would create for me over my lifetime.  I didn’t have any anxiety about going back.  I just wanted to get it over with.  I was crossing my fingers that nothing stupid happened and that I would only be in the hospital for a week or less.

I didn’t have to endure the ridiculous colon cleansing preparation like I had in the past.  Now I was colon-less.  When you don’t have a colon, food moves through you very quickly.  The colon is like a shit storage house.  After your small bowel has sucked out all the nutrients from the food, it moves the waste to your large intestine, or colon, where it removes water (to recycle back into your blood stream) and allows the food waste to sit and rot and come out at the proscribed time.  This is the most efficient way for a mammal to operate.  But when your colon is gone, your poo can't have the water removed, it becomes very loose and as such, it comes out more often whether you like it or not. 

So, I didn’t have to starve for three days this time, instead it was only one day.  However, the medical staff decided to give me an enema through my ileostomy when I got to the hospital.  That was an interesting experience and it wasn’t that effective.  They must not have realized that the food I ate was usually completely gone from my body within six hours.  There was nothing to irrigate out.  This time in the hospital, I was taken upstairs to a different floor from the one I was on during my first stay.  I was relieved that I didn’t have to be there again.  There were too many bad memories there.  I would miss the nurses I loved downstairs, but I felt good about the new surroundings. 

The time came for my surgery and I wasn’t a bit scared when I went into the OR.  I knew how everything worked.  Just before taking me to the OR, the anesthesiologist came into my room and explained to me what he would be doing.  I stopped him and said “I know how it goes.  This isn’t my first time you know.”  I remember him looking at me thinking “you little smart ass.”  He pretty much ended his spiel at that point and got down to business.  My surgery wasn’t too long, just a few hours or less.  All they had to do was release my small bowel that had been sewn to the outside of my skin, pull it out a bit, cut the small bowel where the opening was and sew the two ends together.  Then they stuff the bowels back in the hole where the ostomy was and sew you back up.  Viola.  Done.

When I woke up, I wasn’t in much pain.  I was pleasantly surprised.  I had another NG tube, but it wouldn't hang around for long.  A few days later, my bowels started to move and it was time to start drinking and eating again.  Things were progressing well and I was a little nervous to see what it would be like when all the food I was beginning to eat made its maiden voyage through my jerry-rigged rectum. 

Well, I didn’t have to wait long for the shit to start hitting the fan, almost literally.  No sooner would I eat, the poo would be flowing.  My poor, new rectum.  It was just a small bowel pre-programmed to move things along to the colon, but now it had been given a big job it wasn’t cut out for.  It didn’t like it one bit.  It was working, but I wouldn’t say it was happy about it.  Very rapidly, the skin around my anus and on my bottom became broken down and raw.  Every time I had to go number 2, which was every few hours, I would dread it touching my bottom because it felt like acid burning my butt.  My surgeon ordered for some kind of diaper rash cream, but it didn’t do jack.  It was worthless.  After a day or two of my skin feeling like it was on fire when I toileted, our neighbor came to visit me and while he was visiting I was moaning about the pain coming from my raw behind.  She explained to him what happened to my skin from my excessive bowel movements and he said “Well, you need some bag balm.”  What was that?  He had grown up on a farm and his family always used bag balm for diaper rash, skin chaffing, and lots of other skin ailments.  It’s a salve that was made for use on the teats of a nursing cow, as their utters often become extremely raw.  People figured out it works just as well on humans.

Our neighbor Fred was so kind that he left immediately and walked across the street to the pharmacy and got a jar of bag balm for me.  He returned in ten minutes with the miracle salve and within seconds I felt relief.  The bag balm was amazing and our neighbor had saved the day.  It meant so much to me that he had done this, just to help my little tush feel better.  It seems like such a small detail, but I have always remembered how kind and benevolent that simple gesture was.  A neighbor who I wasn’t even that close with saw me suffering, knew how to help, and acted on it.  There are so many wonderful and kind people all over the world who do the right thing without a second thought.  There are little things we can do every day to make someone’s life better, like something as simple as opening the door for someone just to be kind or sending something thoughtful to someone who is going through a really tough time.  Just letting people know you see them, you notice them, and you care about their feelings means so much to so many people.  But it’s not just them who feel your love, you yourself will feel the love too.

My surgeries to that point were awful for me, but there were several people – family friends, neighbors, and of course lots of nurses – who had gone out of their way to do something big or small to help me feel better.  Those people are real heroes to me.  In spite of all the negative things, the physical pain and the painful feelings that I went through that summer, what always stands out to me in my mind is the gestures of loving kindness, not the agony and despair of my disease.  As Virgil said, love conquers all.

Intermission

I had six weeks to enjoy having an ileostomy before I had my next surgery to remove it.  I explained earlier what an ileostomy is, but to rephrase it simply, an ileostomy is your small bowel brought to the outside of your abdominal area where your bowel waste then dumps into a receptacle that you can empty every three or four hours.  Having one of these takes a lot to get used to.  You have to apply a sticky backed flange to your skin around the ostomy site (the place where the small bowel comes out through your skin).  This sticky thing is called the appliance and the bag attaches to the round flange on the front of the appliance.

These can be tricky because the appliance can be finicky.  They often leak around the ostomy site or behind the appliance.  They have to be changed every three days or so and sometimes the actual bag itself leaks.  My skin was breaking down around my ostomy site, from the irritation of the appliance always being stuck to it.  I hated having to ask my mom to help me empty my poop bag.  It was a huge pain in the ass.

Things were settling down and I was sort-of returning to regular life.  I was eating lots and I had several trips out for ice cream and other special treats.  I was feeling stronger and gaining weight.  I also was wanting to play with friends.  One of my friends from school came over to play one day.  I made sure that I wouldn’t be emptying my bag while she was there, as I thought she might see it and tell all the other girls from school, and then they might make fun of it.  I wasn’t stupid.  Everything went fine during the play date but when my friend’s mother came to pick her up, she wanted to play again in a few days but this time at her house.  My mom said yes and thought it was a good idea. 

I thought it wasn’t such a good idea.  What if I needed to empty my bag there and I needed some help?  I’d have to get my friend’s mom to help me.  That would really embarrass me to have her help me.  I covered my bases and emptied the bag before my mom dropped me off.  But unfortunately, during the play date, it needed emptied.  I did some of it myself, but I needed help getting the clip of the bag back on so that the bag would be closed off.  I had to ask my friend’s mom to help me.  I stood behind the bathroom door and opened it up a crack to yell out to ask her to help me.  She came right away, but judging by the horrified look on her face when she saw the whole enchilada, I knew this was a big mistake.  She was not happy having to help me.  I could feel how disgusted she was.  She was clearly a fecal phobe, but she also was just judgmental.  The door was wide open and my friend was curious so she came in the bathroom too.  And if her mom was disgusted, what do you think her daughter thought too? 

I had no idea what would happen now when I went back to school.  This friend would probably blab her mouth to all the other girls.  I didn’t want anyone to know.  Besides, by the time school started, I wouldn’t have the bag anymore.  The play date was over soon and so was some of my agony.  But much more hurt and embarrassment would occur later when school started.  A few days later I asked my mom if the same friend could come over again.  My mother called the other mother but her daughter did not want to play.  I was heartbroken, but not surprised in a way.  I wanted to show her that I was still just me, that I wasn’t my bag, that I was still just the Heather that she was friends with.  But that’s not how nine year olds think.  She thought I was a freak and she probably didn’t want anything to do with me anymore. 

I was starting to realize a reality I had never even considered while I was in the hospital contemplating so many other things – that I could lose all my friends over this illness.  I had never thought about how people would treat me after the surgery.  I didn’t want anyone to know about the bag, because I knew they would think it was weird and funny, but I never thought about people not wanting to be friends with me anymore.  I had lost several things over the past three weeks but nothing would compare to how much I would lose and endure over the next few years because of my disease.  The aftershocks would be worse than the earthquake itself.