Gut Feelings: Adhesions Suck

In the past, I've written a series of blog posts about 'gut feelings' - specifically, topics relevant to intestinal issues, whether it's my own experience or books I've read that I felt would be good for others to read.  You can read any of my posts on this blog by searching through the gut feelings topic (or clicking on this link).

Typically, I stay upbeat in my posts.  But I'm feeling the need to write this post as a matter of personal therapy and document a new emotional struggle that has knocked me down hard.  Reality dictates that we can't be positive all the time.  I know I'm not alone in this process, so it's best to share.

Recently on Saturday, April 18, 2015, I woke up in the morning with some abdominal cramps that felt regrettably like the symptoms of a bowel obstruction.  I was supposed to head out that day for a long weekend vacation to Maine, but alas that was not to be.  As the day progressed, I became increasingly nauseated and vomited several times.  I drank some water in an attempt to stay hydrated but it wouldn't stay in my system and came back up within an hour.  I realized I was getting dehydrated.  

And I thought, "Screw this.  I don't want to go to the hospital."  I sat around in my apartment, tired from the pain, and tried to take a nap.  "Maybe it'll go away on its own."  It wasn't.  Through some convincing from my uncle and mother over the phone, I finally got in my car and drove to the hospital about twenty minutes away.

I was grateful that I had a short wait in the emergency room, and within two hours I already had seen a doctor and received painkillers and anti-nausea medication.  I've learned from past experience to immediately explain to the ER staff that I have a history of bowel obstructions because it's better to rule it out promptly (or more likely, rule it as the problem) instead of wasting time considering other causes.

The doctor ordered a CT scan, and the scan revealed some back-up and considerable distension in my intestines.  The likely suspect this time: small bowel obstruction caused by adhesions (to be defined momentarily).  They admitted me into the hospital and I stayed for three nights.  I got the standard treatment: IV fluids, and no eating or drinking for at least a day.  An NG tube (nasogastric tube) that is inserted through the nose into the stomach was not required this time around, which was a small victory.  I've always needed it in the past but this time I didn't.  Throughout the hospital stay, I gradually upgraded to a clear liquids diet, then to a "low-residue diet," which is similar to a low fiber diet with some additional stipulations.  No surgery required.  On the morning of Tuesday, April 21, I was released from the hospital.  It will take me a few days to physically recover.

This was my third hospital stay since 2000 for bowel obstructions, not including two other stays for diverticulitis and pancreatitis in the past four years.  I thought I figured out the foods to avoid and the right diet to ward off obstructions.  This time around, I couldn't pinpoint a reason that I had control over that caused this obstruction.  

Though I knew it intellectually, I guess I never really grasped the concept that bowel obstructions caused by abdominal adhesions cannot be prevented with a certain diet or exercise.  Adhesions are essentially scars formed due to any number of reasons (past surgeries, inflammation, and other medical conditions).  According to a 1990 study, 93% of people who previously had abdominal surgery later developed adhesions.  Adhesions may generally be harmless, but they can also wrap around the intestines or adhere the intestines to other organs or the abdominal wall.  When this happens, it can result in an obstruction -- which almost always requires medical intervention (sometimes surgery, sometimes not).  While treatments have been under development to deter adhesions from forming after surgery (such as chemical sprays), there's no way to definitively stop them from occurring for the time being (hopefully one day, there will be).

This all leads to my main point of this blog post: Adhesions suck.  Royally.  Because you can't do a damn thing about them.  Doctors can surgically remove them, but then that surgery will leave more adhesions in its wake.  It's a never-ending cycle.   

After the last few days in the hospital, I have to admit that I'm physically, emotionally, and spiritually drained.  I'm resigned to the fact that I will inevitably be hospitalized again in the future for bowel obstructions -- they may even increase in occurrence over time.  Pun intended, this scares the shit out of me.  To have knowledge that you will face specific sufferings in the future and you can't do a thing about it is a heavy burden.  I feel helpless with this knowledge now, and it's going to weigh on me for a while.  It's a matter of wondering what the hell I do now.  I have to move on, face the fact that this struggle will never end, and focus on the people, activities, and things that I love.  But that's hard to do at the moment.  I'd really like to just avoid all of my responsibilities right now and just have fun -- that's not realistic, of course.

Life has punched me in the gut, knocked me to the floor, and I'm currently down.  The referee is counting to ten, and I just want to stay where I am.  I don't want to get up and face more of the punches.

Adhesions suck.  

I'm better than this, and I will rise above these feelings.  I've got to ensure that the aspects of my life that I do have control over are happy, thriving ones.  That means some major life changes to better my situation.  But this is an emotional and existential challenge that I'm going to need to deal with first.  For now, I can only send out my thoughts and feelings in this blog.

Gut Feelings: My Pancreas Pleads the Fifth

I figured I should post an update on my pancreatic adventures since early May, now that I've had all kinds of tests completed.  The simple answer is that all of the tests came up normal.  The doctors couldn't find any clear cause of the acute pancreatitis.  They call it idiopathic pancreatitis when no apparent cause can be found.

On June 12, I had an MRCP (Magnetic Resonance Cholangiopancreatography) done, which is a fancy medical term for an abdomen MRI with contrast for the area around the pancreas.  All of the results turned out to be normal, with the exception of a fatty liver, which I already knew about.  In my case, the liver has fatty deposits throughout, most likely as a result of a long-term high-carbohydrate, high-fat diet.  Luckily, a fatty liver can traditionally be reversed over time with a healthy diet.

A blood test taken while I was in the hospital for any autoimmune diseases also came back negative.

I had a conversation with my primary care physician on June 20, and while he admitted this was a highly unusual case of pancreatitis with no known cause, he felt that a poor diet leading to a high level of triglycerides in my blood (hypertriglyceridemia), the third most common cause of pancreatitis, was the most plausible cause in my case.  A couple days into my hospital stay, they had checked for this. They informed me then that while my triglycerides were high, they weren't high enough to cause pancreatitis.  My doctor on June 20, however, believes it's possible that I did have hypertriglyceridemia upon admittance at the hospital, and after fasting for 2-3 days, the triglyceride levels might have decreased significantly.

For my own sanity, I have to go with that being the likely cause of the pancreatitis.  Being on a low-fat diet and avoiding alcohol for the rest of my life should result in a healthy body and a decreased likelihood of any recurrence.  I'm also back to brisk walking again now that I'm feeling good and back to a 2000-calorie daily intake.  Exercise and diet should hopefully bring down my triglyceride levels and cholesterol.  

Out of curiosity, I asked my doctor what my lipase level was when I was admitted to the hospital.  Lipase, a pancreatic enzyme, is normally found in the blood at 11-82 units per liter (U/L).  With pancreatitis, the lipase level might be about three to six times that amount.  When I was admitted to the hospital, it was 8000+ U/L, which was WAY more than six times the normal level.  Three weeks after being released from the hospital, my lipase level was back to a normal 46 U/L.

At this point, I must close this chapter of my life and recognize that all I can do is choose a healthier lifestyle and hope for the best.  Hopefully, this is the last post that I write that has anything to do with my pancreas!    

Gut Feelings: Revenge of the Pancreas

I have no idea if my many years of an unhealthy high-fat diet contributed to my current predicament, but they certainly couldn't have helped.  In the late evening of Monday, May 6, my pancreas decided to take revenge on me by attacking itself in what was a bout of acute pancreatitis.  The pain was beyond any that I had past experienced, mainly prior bowel obstructions.  It resulted in a four-day hospital stay and what will be a change in my diet for life.  I'm using this blog post to explain what the past couple weeks have been like for me, and while much of it might sound pessimistic, I will conclude this post with some personal points of optimism and hope.

The pancreas produces important hormones like insulin, but it also creates enzymes that break down food in your intestines.  During pancreatitis, the pancreas becomes inflamed.  Pancreatic enzymes begin to destroy the pancreas itself.  As one can imagine, this is not a healthy situation.  The two most common causes of pancreatitis are 1) excessive alcohol use and 2) gallstones blocking the path of the pancreatic enzymes.

When I began getting waves of minor abdominal pains in the early evening that Monday, I thought they might be indicators of a partial bowel obstruction, which I often get, but they tend to work themselves out pretty quickly on their own.  A couple hours later, the waves of pain got much stronger.  Within a short time, the pain became constant and unyielding.  I began infrequently vomiting while trying to find the most comfortable position.  It didn't matter if I was sitting, lying down, or standing up - the pain didn't let up.  I was sweating profusely and became very pale.  Finally, after about six hours I decided I needed to go to the emergency room.  At the time, I thought it likely I had a complete bowel obstruction.  I drove myself to the hospital around one in the morning, which took about 25-30 minutes.

The wait to be seen in the ER was only a few short minutes, but from that point on, it felt like an eternity until I saw a doctor.  When a bed opened up for me, I suddenly found myself in the pediatric section of the hospital (not quite sure why, but the pain blurred my memories at that time).  Hospital staff did an abdominal X-ray on me, and they initially did think it was a bowel obstruction.  They asked me if I'd accept the dreaded nasogastric tube, and I immediately said yes.  An NG tube goes through your nose into your stomach, while you're awake.  But I knew what was coming and I took it in stride, knowing the NG tube would likely relieve some of the pressure and pain by suctioning out anything in my digestive system.  I didn't even gag this time when they inserted the NG tube!  They then did a CT scan which along with blood work revealed I had pancreatitis.  They finally gave me the painkiller Dilaudid after being in the ER for about four hours.  The Dilaudid worked incredibly well; within ten seconds a certain wave of heat came over my entire body and stopped all of the pain.  It was such a relief that I immediately fell asleep.  Doctors and nurses woke me up every now and then with questions and syringes, and eventually they told me I'd be admitted to the hospital.

Thankfully, surgery wasn't necessary as the pancreatitis was caught very early.  The only treatment was the immediate cessation of any food or liquid other than a saline IV drip to keep me hydrated.  With the Dilaudid in my system, I didn't feel much pain at all.  One of my co-workers came in to see me that Tuesday afternoon, right about the same time they gave me an ultrasound.  No pregnancy!  They did the ultrasound to check my gall bladder which came up fine.  No gallstones... and I was adamant in my statements to the doctor that I don't drink much (I drink perhaps once every couple months, and it's usually just a glass of wine or a mudslide).  They did a lot of blood work, though the only immediate results they could get from that was that my triglyceride levels were high but not high enough to cause acute pancreatitis.  They did reveal a "fatty liver," which is exactly what it sounds like - an excess of fat in the liver, often caused by too much fat in one's diet.  Thankfully, that problem is reversible over time with a healthy diet.

After a couple days of the saline IV drip, they upgraded me to a liquid diet.  Jello and broth!  Actually, I really love Jello!  After another day, I was told I could try a diet of low-fat solid food.  I was getting occasional abdominal pains after eating, but it was tolerable.  By that time, I was declining the Dilaudid most of the time.  I don't like counting on narcotics if I don't have to (but they are wonderful when you do need them!).

I was labeled an "independent" at the hospital, which I took as a joke but it seemed it was actually their way of saying I could get out of bed on my own and didn't need much assistance.  Independent is a good life description for me, though... I dislike depending on others for my needs, a lifestyle which I should probably shed a little bit.  I enjoy helping others but have a very hard time accepting it for myself.  Hence, I drove myself to the hospital instead of calling someone else... and I definitely wasn't going to pay for an ambulance!  But again... I know I do need to learn to ask for help.

Funny story.  During my last night in the hospital (Thursday night), for some reason the nursing staff turned on my bed alarm.  So when I got up around 3am for an urgent trip to the bathroom, my bed let out this high-pitch ear-piercing sound.  As I hastily walked to the bathroom, a nursing assistant came in and let out a gasp because she didn't expect to see anyone walking around in the room so quickly.  The whole scene was awful at the time, but kind of hilarious looking back.

Friday I was told I could leave the hospital.  The gastroenterologist who had been popping in to see me daily told me he'd schedule an appointment with me for a couple weeks later.  An MRCP (advanced form of MRI) will eventually be scheduled to check for any possible physical causes of the pancreatitis.  Some specialized blood work results are pending (at least one test I know is to check for an autoimmune disorder).  In the mean time, I'm left wondering what the heck caused the pancreatitis in the first place.

When I was discharged, I asked the nurse how long I'd be on a low-fat diet. "For life," she told me, in a way that also said, "Didn't you know that, silly?"  My primary care doctor who I saw the following Monday confirmed the low-fat diet would be for life.  I'm also not allowed to have alcohol again.  I can deal with the absence of alcohol... but it has certainly been an eye-opening struggle and adjustment as I've been researching how to go about having a low-fat diet.  It's not going to be easy, but I'm gradually learning what I can and cannot eat.

For the first three days after being released from the hospital, I had almost no appetite.  I'd get hungry, but whenever I'd eat, I felt full after just a few bites.  Since being admitted to the hospital, I've lost almost ten pounds - not a great way to lose weight, but hey, I'll take it!  Thankfully, my appetite is back now, though I'm still not eating enough to simply maintain weight.  That will come with time soon, I know.

I am going to miss pizza.  And hamburgers.  And anything fried.  And pretty much all kinds of foods that I love to eat that are high in fat.  Instead, I'm having fruits, vegetables, lean turkey burgers, baked fish, and chicken vegetable stir fries with brown rice (without the cooking oil, which is high in fat), and lean turkey sandwiches.  I do love fat-free Fig Newtons and fat-free yogurt.  Those are my treats for the time being.  I have a steep learning curve ahead but I know that this is for the best.  I do think that my life-long high-fat diet did contribute somehow to the pancreatitis.  Even if it didn't contribute to it, switching to a low-fat diet will be good for my heart, my pancreas, and the rest of my body.

For now I also can't have caffeine, but I'm hoping when I see the gastroenterologist next week, he'll give me his blessing to have coffee every now and then.  Let me keep something I enjoy, like mochas!  Crossing my fingers about that.  If you know me well, you know mochas are a daily staple for me.

I don't know what my journey will be ahead.  I haven't dealt well with not knowing why this happened, but I hope to know in the coming weeks.  I also don't know if this will happen again, and that's a seed of fear that has unfortunately been planted.  Some weird things have been happening, too.  I'm getting night sweats even though it's cool in my bedroom with the air conditioner.  Also, my shin splints are back with a vengeance since the pancreatitis hit me (and they clearly weren't caused by running!).

But here's what I do know.  I know that I appreciated the visits at the hospital from my co-workers and staff members, as well as the phone calls, texts, and posts on social media wishing me well.  Support from others goes a long way.  I appreciated the cards and small gifts I received.  This whole experience has also re-kindled my spiritual reflections and beliefs.  Life is so fragile and precious.  On the morning after being discharged from the hospital, I stepped out of my apartment and observed an overcast sky with a subtle drizzle of rain.  The trees and plant life were especially lush with green.  I was briefly overcome with emotion at the beauty of it all and cried a few happy tears. Sometimes we need experiences of high stress and uncertainty to remind us just how amazing life really is.

Thanks to everyone for these measures of support!

Gut Feelings: Monologues of a Pediatric Surgeon

On the page of a Facebook friend, I noticed a reference to an autobiographical book recently written by Dr. Alberto Peña, a pediatric surgeon who revolutionized the way surgery is performed to correct anorectal malformations in babies in 1982. Considering I was born with such an issue in 1979, I was very curious to hear about Dr. Peña's life and the impact he made on his patients and their families. It only took me six days to read his book, and while it provided me insight into pediatric surgery, it also corrected a misconception I had about my own surgery in 1980.

For my third "Gut Feelings" post, I feel it's important to share my thoughts on his book and also revisit my own past a bit more. I'll start with the essential bibliographical information; take note that presently his book is only available through BookMasters/AtlasBooks.

Book Details:
Peña, Alberto
Monologues of a Pediatric Surgeon
n.p.: n.p., June 2011
360 pp. $25.00
0-9846432-0-6

Chances are that you have met someone who was born with an anorectal malformation, but you likely didn't know it. About one in 5,000 children are born with such an issue. Although Dr. Peña is a pediatric surgeon in the larger sense, the work he has done with anorectal and urogenital defects has been his primary legacy.  Dr. Peña is the founding director of the Colorectal Center at Cincinnati Children's Hospital.  He has impacted many parents and their children with his surgical techniques but also with his heart.  Although I've never met the man, his book provides an extensive background behind his life's work.

Dr. Peña's book, Monologues of a Pediatric Surgeon, is roughly divided into four sections: his personal autobiography, his specific surgical contributions, stories of parents and children he has known, and his observations and personal/professional advice in medicine.  While most books have a specific target audience, Dr. Peña instead reaches out to several audiences: parents, aspiring and expert surgeons, and the general population.  It's a strategy that risks losing his audiences at certain points of his book, but overall I found his book to be enlightening and entertaining.

As Dr. Peña notes himself, his native language is not English which made it a challenge for him to write this book.  It's noticeable when reading, but it does not take away from his stories.  There is also extensive medical terminology throughout, but he helpfully defines those terms with footnotes on each page.

Dr. Peña's beginnings in pediatric surgery were profoundly affected by a family tragedy, the loss of his young son to a congenital malformation, which later provided him purpose in caring for other children and relating to the parents of his patients.  He holds faithfully to the belief that doctors should listen and empathize with patients and their families, a values system that seems to be in danger in the changing medical field that emphasizes accountability and inhibits meaningful, caring doctor-patient relationships.

I found it striking that there are still many "facts" in the medical field that are based on theory, as Dr. Peña points out.  There is allegedly a structure located within every human body called the "puborectalis sling," a term coined by Dr. Douglas Stephens, an Australian doctor who was the first to do specific work with anorectal malformations in cadavers in the 1950's.  Dr. Stephens' research emphasized the importance of maintaining the integrity of the puborectalis sling when performing surgery.  However, Dr. Peña's research indicated such a structure doesn't exist.  Intriguingly, many doctors still believe it does exist - if one searches for the term on Google, it's all over the internet.  Since I'm certainly no doctor, I don't know who is right in this matter; but it's unnerving to know that the anatomy of the human being is still not fully understood.

Dr. Peña's research into anorectal malformations led him to create a surgical procedure in 1980, now called the Peña pull through procedure.  It was a drastically different approach partly because it involved a larger incision than was standard practice.  Prior to the Peña procedure, surgery to correct anorectal malformations was done blindly; one can imagine the array of complications that could occur when the site of surgery isn't even visible!  Today, thankfully, his procedure is the standard practice.

In all likelihood, my own surgery was done blindly.  Dr. Peña's procedure was not introduced publicly until 1982, two years after my surgery.  I am lucky, however, in that there were no significant complications, as far as I am aware.

Anorectal and urogenital surgery is not a common topic among the general public.  We as human beings tend to find it unpleasant.  Dr. Peña poignantly states in his book that history has shown, "it is not an elegant subspecialty because it deals with stool, urine and sex - all relatively awkward concepts to talk about socially."  I can plainly identify with this, as shame has been a constant companion when it comes to the personal issues I experience.  When compared to others with similar conditions as my own, my physical symptoms throughout life have been better on the whole.  But it does not take away from the fact that living with "issues of the bowels" can be socially challenging.  I envy those in similar situations who can take their conditions more lightly with humor. 

If you are a parent with a child with an anorectal, urogenital, or any type of congenital malformation, I think you'll find this book to be helpful.  It provides such insight into the thoughts and feelings of a pediatric surgeon who is among the most expert in these areas.  There are some truly heartwarming stories that Dr. Peña relates about the families he has met.  It helps to know you're not alone and that there are doctors who genuinely care. 

I also recommend joining the Pull-Thru Network, an organization that advocates for and supports families who are affected by anorectal malformations and colon diseases.  This group publishes a regular newsletter and holds a national conference every two years.  Dr. Peña is also a medical advisor for the Pull-Thru Network.

Gut Feelings: Seeing it in Writing

A few weeks ago, I decided that it would be helpful to read a biographical book written by someone with some form of an intestinal condition.  I was tired of feeling alone in my condition; anything relevant with depth would hopefully meet my needs.  I came across a book called "Learning Sickness: A Year with Crohn's Disease," which I picked up at the local library.  It's a relatively short book, 187 pages, written by an English professor working at Assumption College in Worcester, MA.  The author, James M. Lang, was diagnosed with Crohn's disease in 1996 when he was a graduate student and new father.

Before I go on, I want to clarify that I personally don't have Crohn's disease.  I didn't state what condition I was born with in my previous post.  While I have no intention of describing my condition in depth at least for the time being, due to the stigma surrounding it, if you are so inclined you can read more about what I was born with (high I.A.).  It's tough to even reveal that!  But based on the positive responses I've received so far, I feel just open enough to share the link.

While Crohn's disease is very different categorically to high I.A., there are just enough similarities in symptoms, to the point that I felt a distinct connection to Jim Lang.  Crohn's disease is a chronic inflammatory bowel disease that is very painful.  The disease affects different parts of the gastrointestinal tract, and its impact varies greatly between individuals affected by it.  Crohn's tends to "come and go," in the sense that it can go into remission and flare up again for weeks, months, or years at a time.  Bowel movements are frequent and nearly uncontrollable.  There is no "cure" for Crohn's disease.  Crohn's can be treated, though, and if caught early, the lifetime impact can be lessened.

Jim Lang's book focuses mostly on one year of his life in which his disease was at its worst.  His book moves forward and backward in time, as he discusses when he was first diagnosed with Crohn's and recalls other significant times in his life that were negatively (or positively) affected.  I felt most emotionally connected to Jim's story when he discusses the bad moments and close calls of having "accidents."  Most people really have no clue of the major stigma associated with these. 

There were two major points that stuck with me from Jim Lang's book: a) patient advocacy and b) religiosity among those with chronic illnesses. 

Without a doubt, it's critical when you have a chronic illness to be your own best advocate in the medical system.  Doctors are not always right, and you will likely know your own body better than any doctor would despite the most advanced technology.  When you're in conflict with a doctor's suggestion or opinion, and you absolutely know you're right, you have to stand up for yourself.  With that said, doctors definitely have access to all of the tools and training to help you.

Jim's other point - that he believes many people with any kind of chronic illness are religious people - was intriguing to me.  Certainly, if you're dealing with a lot of pain and suffering that you know won't go away throughout your entire life, you may look to a higher power.  I myself am not religious by any means, but I consider myself a spiritual person (I'm drawn to the philosophies of Taoism and synchronicity - but that's for perhaps another post!).  I was an atheist up until the time I had my first bowel obstruction in 2000.  The combination of the trauma I experienced, along with the love that I felt from my friends and parents, made me think a lot more about what it means to be alive.  Life is truly amazing and worth cherishing and reflecting upon.

I do think that Jim Lang over-sentimentalizes some things in his book.  There are other factors that come into play in the way he deals with Crohn's disease, and those factors won't necessarily be as relateable to others with Crohn's or other intestinal disorders. 

But the major sticking point about his book is that he wrote his thoughts and feelings down about what it's like to deal with his disease.  As far as I know, there are no other biographical books about Crohn's, though there are quite a few practical and medical books on the topic.  His book hits home, and you see the humanity that overshadows the disease.

That's what is missing for people born with I.A.  No one, to my knowledge, has written a book or even a lengthy, in-depth description of what it's like to deal with the consequences of this throughout life.  Someone should do that.  Part of me would love to attempt a book, though I'm not sure if my personality lends itself well to such a long-term endeavor. 

As I begin to hear from new parents with children born with I.A. - and even from other adults like myself - it's becoming all too clear that we've got to break through the stigmas and barriers.  We're not alone.  The stories need to be shared.  Let's talk about things.  Let's see it in writing.

Gut Feelings

This is an intensely personal writing that has been a work in progress for the last few weeks, mostly tossed about in my brain, and now finally formed in this blog post.  I warn you that this is not a topic easy for me to discuss, as I have generally worked so hard to keep it hidden from most people throughout my life.  I'm swinging a steel ball through a brick wall that's been up for quite a long time.  I feel this is a risk, but there's a sense of cautious hope that I can help educate others on an emotional level of what I've encountered.  I'm not the only one like this in the world, not by any means.

The Classroom

I'm sitting in the front row in a high school lab classroom - the subject, chemistry.  Before me and four other students is a long rectangular table with a black top.  I'm sitting on a stool like the others are beside me, as the teacher writes some kind of formula on the chalkboard.  I don't particularly like this class, and I lazily jot down notes.  Something churns in my stomach, and I know I'm about to feel unwell.  Sweat begins to form upon my forehead.  A tightness grips my gut.  I've been in this situation before.  Relax... I'm fine.  I don't need to use the restroom.  Breathe in, breathe out.  I try that a few times.  No, that's not working.  Can I hold off until the bell rings?  I don't want to make a scene.  Can anyone else around me tell that I'm feeling sick?  It seems like all eyes in the room are staring at me.  No, I can't wait anymore.  My arm darts up.  Come on, teacher, look my direction.  Come on... come on... she sees me.  "Yes, Michael?"  The words stream out as quickly as I can get them out: "Can I use the restroom?"  "Yes, you may."  I jump up and speed out of the classroom as fast as my feet can take me.  Will I make it to the restroom?  God, I hope so.  My face is warm, blushing bright red, and I'm fearful I'm not going to make it.  I don't make it.  Damn it, damn it, damn it...  how am I going to deal with this?  How will I hide this?  I do whatever I can in the restroom.  It's unavoidable - everyone is going to notice.  I'm going to have to get to the school receptionist and have my mother pick me up.  I still need to go back to the classroom and pick up my books and that bookbag on the floor.  Someone sees me in the hallway on my way there.  He laughs at me.  Oh, this is so embarassing.  I feel shame.  Intense shame.

This scenario plays out multiple times throughout my life, before and after that moment in that classroom.  The shame burns itself a little more stiffly into my self-image every time this happens.  But that time in that chemistry class exemplifies the worst period of my life when it comes to issues such as this.          

Moments in Time

A Sunday.  August 19, 1979 at 12:45pm.  That was the moment I came into this world, seemingly healthy.  Two hours later, it was discovered I was not quite whole.  I required major intestinal surgery, and two days later on the 21st, a colostomy is performed.  Tubes in my body every which way.  Incisions.  Major discomfort.  Crying.  As a baby, I must have suffered a lot, though it was probably more traumatic for my parents to see their newborn child in this condition.  Good thing we don't remember things from when we were born.

April 15, 1980: Back to the hospital to finish what was started.  I gained some weight and was healthy enough for the major surgery about to be done.  At the time, it was a new varation of a form of surgery, and I was lucky to have had it.  My life could have been much tougher without it.  But again, here, there were more tubes, more incisions.  Painful for a baby, and just as much so for the parents.  Functionally, the surgery corrected my condition.  However, there would always be some difficulties and potential problems.  The doctors knew that, and they informed my parents of this.

Throughout much of my young childhood, I didn't have much control.  But if I got sick, that didn't really matter much... until I became a part of a wider social world in elementary school.  At that age, if things want awry in class, I would deny my problem.  I'd get in trouble with the nurse sometimes.  My parents would be called, and I'd have to go home.  During one instance, I became sick, did nothing about it, and managed to keep it hidden (to this day, I have no idea how I did that) until I took the bus home to the babysitter.  She noticed.  I got a severe spanking for that from the babysitter.  Looking back at that moment in time, I feel anger for that woman.  For all she did was reinforce that shame.  The seed was firmly planted.

April 6, 2000:  Junior year in college.  It had been about four days of intense pain - the worst ever in my life.  I had lost about ten pounds, and after three hospital visits and misdiagnoses of the stomach flu, the university's nurse saw me and decided something was horribly wrong, and she sent me to the hospital for a fourth time with a demand for a CAT scan.  That's when they discovered I had a bowel obstruction and would require emergency surgery.  Hospital staff were trying to get ahold of my parents, who were a six-hour drive away.  A nurse sat beside me and told me she'd have to place a tube through my nose into my stomach (an "NG" nasogastric tube) to relieve the pressure in my intestines.  Already frightened about the upcoming surgery, that experience was traumatizing and I remember being in such tears.  An NG tube, by the way, is not fun at all.  The gag reflex works incredibly too well as your body fights it.  After that was done, I remember getting on the phone with my mom as I was so scared, and she said they would be on their way.  I was actually thankful when the anesthesiologist put me under.  Anesthesia is a gift at times like this.  When I awoke, I found that I had a new friend called morphine.  More importantly though, I found I had many friends - more than I really knew I had.  Fellow college student leaders came in and visited over the next few days.  There was a lot of love in that hospital room.  Combine that with the joy to see my parents and my best friend Marcus and good friend Erika by my side for much of my hospital stay.

The doctor told me if it had been another 24-48 hours before they discovered the bowel obstruction, I would have risked death.  I knew I'd never take life for granted from that point on.  When I was discharged, my mother brought me by my room in the residence halls to pick up some of my things.  My room had been cleaned by my friends.  Another act of kindness.  After a long drive home, I recuperated with my parents' help.  That warm and safe feeling one gets when they're at home - well, that's about as strong as it gets, in my opinion.

As soon as I was permitted, I drove back to college, making multiple long stops along the way, taking it easy.  I wanted to make it for the end of the year awards banquet with my fellow residence hall student leaders.  Among them, that was my second home.  When they awarded me "Executive Board Member of the Year," my path into my career in student affairs was solidified.  That was a very happy moment in time.  Support from my peers, from professional mentors.  That's the kind of environment I wanted to be in and to give that support back to others.

And Since...

Since that time, I had another bowel obstruction in 2003, though it was caught early enough that surgery was not required (though the dreaded NG tube was a necessity).  I do get sick quite frequently, especially when I'm stressed.  Sometimes "accidents" (I hate that term) do happen.  When they do, that horrible intense feeling of shame returns.  I've been taking steps to come to terms with that shame particularly over the past year and a half.  I've found some understanding people in my life recently, and it is because of them, that I am finally feeling more confident coming forward about what I've been dealing with in life. 

I know this is at great risk, however.  I'd like for people to know what it feels like.  There's a horrible stigma, and I want to do my part to educate others and work to get rid of that stigma.  This may not be my first blog post about this topic.

Final Thought

I leave you with this thought.  A filmmaker, Roey Shmool, is working on a documentary about the experiences of people like myself.  I'm looking forward to when he releases that film.  If you can, take a moment to view the web site and the trailer for the work-in-progress at Wear It On the Outside.*  When I first saw the trailer about a little over a year ago, I cried.  It was the first time I caught a glimpse into others' lives like myself.

Now I'm choosing to do the same.

*Update as of April 21, 2012: It no longer appears that the film will be produced as the web site has been taken down.  But you can still see the video of the original trailer on YouTube on the above link.