Wednesday, January 13, 2016

MEMORIAL HOSPITAL WEEK: H. Heilmannii & Hell at Children's

first published March 21, 2014

I first wrote this piece last year, and in that time have learned much more about Helicobacter Heilmannii gastrointestinal infections.  

60% - 80% of all dogs in the United States and 70% - 90% of all cats in the United States carry h. Heilmannii naturally in their stomachs, and most people contract the infection from their domestic companion animals. Those numbers should alarm you.  The incidence of this infection is reported as "rare" only because the United States abruptly stopped studying the bacteria after discovering it in the 1980's.  

Why are constipation issues so prevalent these days...and with endless possible causes? "Gluten allergies", "lactose intolerance", "irritable bowel", "celiac's disease", "chron's disease", "mitochondrial disease", "acid reflux",  "ulcers", "autism"..."hirschsprungs"..."undeveloped anorectal process"...I mean, come on.  They used to say that people could somehow control their "ulcers" by calming down...but studies now show that 90% of ulcers are the result of an h. Pylori infection.  I believe that even the constipation associated with fibromyalgia and cystic fibrosis is often actually the result of an undetected, untreated h. Heilmannii infection.

What's this all about, anyway?  People have been eating bread and drinking milk for thousands of years...and pooping for somewhat longer.  If you eat, you're gonna poop.  Yes, some people might actually be born with a digestive issue, or an anus that failed to develop....and it's really way too scary to think that our medical community might be experimenting on us....

Most importantly, the digestive process is autonomous -- like blinking and breathing.  Yes, you can have a staring contest...but eventually you're gonna blink...or else there's something wrong with your eyelid.  Yes, you can hold your breath for a while, maybe even until you pass out...but as soon as you're unconscious, you're gonna start breathing again....and breath-holding will not explain asthmatic breathing difficulties.   People are capable of withholding their urine and stool for only very finite periods of time.  


a few pre-emptive warnings before you start reading this post:  
i am not a doctor.  
what i share with you now is just what i know from 1st-hand experience and from online research.  Don't read this article if you are shy or uptight about poop and/or pooping.

Not to be a party pooper, cuz this picture is funny...but close contact with pigs is the number one source of non-h. pylori gastric infections in humans. .  

Our son acquired this bacteria from a stray kitten we'd taken in, and domestic companion animals are the number two source of this bacteria.

Helicobacters are spiral-shaped bacterium that occur naturally in the stomachs of many animals.  When humans catch this bacteria, its called a "zoonosis" (that is, trasmitted from animals to humans).  

Insidious and fastidious, this bacteria survives the acid bath of the stomach, and colonizes the mucosal lining of the  pyloric antrum (the bottom of the stomach).  Once it sets up camp there, it can spread to the pancreas, kidneys, gallbladder, liver, intestines, lymph nodes and will even compromise the heart, lungs, and spine. Early symptoms are commonly misdiagnosed as constipation and dyspepsia (indigestion), and the average length of time for misdiagnosis is three years.  By the time unmistakable lymphoma symptoms appear, it's stage 4 cancer and usually too late. 

* * * * * * * *

We have four children, ages 22, 18, 9 and 8...and we raised every single one the exact same way.  We potty trained them all the exact same way; they all were potty trained between 18 and 24 months, and they all "toileted" normally. 

After toileting normally for four years, our 9-year-old (who was then six, and half-way through the first grade) suddenly began soiling his pants.  We were stunned, and couldn't for the life of us figure out what was going on.  We asked him; he shook his head, not understanding himself what had changed.  

The very first thing I thought was constipation, so I went and bought some Pedialax and gave it to him.    As I recall, it stimulated a bowel movement, but that was the only time any oral laxative did.  

When the soiling continued, I started to think it might be behavioral.  "Are you too shy to raise your hand and say you need to go to the bathroom honey...?  Or maybe you're so busy watching something on T.V., or in the middle of a game or something...too busy having fun to get up and go to the bathroom??"  

But he said, "No.  I don't feel like I have to go to the bathroom...but I do feel like there's something *stuck*."

Back to the Pedialax.  No response.  I decided to try the alternate route, the suppository one....which was met with considerable trepidation and reluctance.  Resistance, actually.  But it did stimulate a bowel movement.  

"Honey...has anyone hurt you, or touched you down there," I asked him.  He looked at me with big wide puzzling eyes.  "Huh?  Why would anyone do that?"  We stood there for a moment, looking into each the other's eyes...his eyes, all green and innocent.  That wasn't it.

Time for the doctor.  We went to our family doc, and told him what we knew.  "Well, it sounds like constipation," we were told, and it was explained to us how that can sometimes just happen.  Give him some Miralax, mix it up in some water or juice, he won't even taste it.  But give it to him every day, and  you should see a change.

So we did.  Nothing.  But there was a soiling every day.  I just could not figure it out.  He started wearing pull-up pants, much to everyone's dismay.  Not only are those confounded things expensive, but he was positively *mortified*.  

"Honey, when you does it feel?  Like, all of a sudden, do you have to go?  Do you not have time to get up and go?"

"No, I don't feel like I have to go.  I never know that I've gone until I suddenly feel it against my skin."

Puzzling, I asked him, "But don't you push?"

"No," he said.  Worry amped up within me.

Back to the doctor, several times; an ultrasound showed lots of gas.  We were advised to continue with the laxatives -- it takes and time and consistency; it could take up to six months to see improvement.  

Intermittent pain in the upper right quadrant of his abdomen...sometimes it felt like stabbing, sometimes it felt like punching.  Occasional gassy episodes that would distend his stomach and cause considerable misery.  Looking back now, I guess it was around this time that he stopped passing gas; I actually can't remember the last time I heard him fart.  

 His little sister began outgrowing him, mainly in weight, but almost in height as well.  

Doctor again.  Stool samples all came back normal, which I still can't understand, because it was anything but.  Dark, muddy-looking and noxious-smelling; all I can say is that is smelled literally poisonous...

People would smell it on him, and look at me like both he and I were crazy.  It was difficult and awkward to explain, since I didn't know myself what the hell was going on.  Occasionally, kids would make fun of him, and he would endure it silently.  

The episodes of gassiness were terrifying; sometimes, it appeared he would explode, and he wouldn't be able to stand upright.  When it happened, I'd take him to urgent care, or to the emergency room.  Again and again, we were told it was constipation and sent home with directions to take laxatives, with no one paying any attention when I told them the laxatives weren't stimulating a bowel movement.

Back to the pediatric gastroenterologist specialist.  We were directed to sit him on the toilet for five minutes at a time, three times a day, the same times, every day.  Because, as the doctors have told me, it's really very common for kids who have long been potty trained to all of a sudden begin withholding their poop...retaining their poop, because one time they passed a big poop, and ever since they've been too scared to go poop, so they hold it.  Then that poop turns into like a big poop rock and stops up the whole show.  Ok...if you say so; but nothing like this happened to any of my other kids, or to me or my husband; in fact, I never personally knew of anyone with this issue.

They did tests for Cron's disease, and allergies for gluten, lactose, this that and the other.  

All of it, negative.  We were at our wit's end.

Early one morning, I went to check on him.  He was awake.  "My stomach hurts," he said.  I just didn't know what to do.  Then, he said, "Mom, what is this?"  He took my hand and placed it on his stomach.  I felt a large lump, and pulled my hand back.  We looked at each other in the darkness, and I was glad he couldn't see the fear in my eyes.

Back to the doctor.  No lump was found.

He had a gassy episode in September, and I thought he might die; he became so pale, and couldn't stand up straight.  It lasted for three days before it was over...and afterward, he and I spoke.  "Baby," I told him, "you're in the fourth grade now.  Fifth grade is next year, and then you'll be in middle school.  Kids can be really mean in middle school.   Let's make a promise to each other:  the next time it happens, we're going to the emergency room...and we're gonna stay until they figure out what's wrong.  Deal?"


So, at the end of January 2014, it happened again.  And we went to the emergency room.  They did an ultrasound, and told us there was too much stool inside of his colon to see things clearly.  "Is it possible that he's been sexually assaulted," they asked.  Absolutely not.

They sent us home with a gallon of Go-Lytely, and told us to have him drink it until he pooped.  I looked it up online to see how soon it was supposed to stimulate a bowel movement.  When he had polished off half a gallon and six hours later still hadn't pooped, we went back.

More tests...a CT scan, an MRI.  The results, I was told, were abnormal, but no one told me in what way.  He was admitted to Childrens Hospital at Memorial.  They put an iv in his right hand, and a nasogastric tube in his nose, which he immediately vomited back up.  

They put him on a clear liquid diet.  I asked if I could eat, and was told "No."  They didn't have the funds to feed not even one of the family members, not even if that family member was staying there, not even if the patient himself wasn't allowed to eat.  I complained, and they sent the hospital social worker to speak with me...a stupid little bitch named Helen Israel.  She reiterated the "we can't afford to feed you" bullshit.  I told her it was nonsense...and that I was a writer and would be writing about this.  Promise kept.

Days went by spent trying to empty out his colon, with him receiving laxatives for several days on a drip.  Nothing.  No poop, though he kept on vomiting, and his condition grew obviously worse.  I told them the laxatives weren't going to work, and it took them almost a week before they believed me.  

"Well, what has worked," they asked me.  "Milk and Molasses enema," I answered.  So they did it, and the volume of results were staggering.  At this point, they'd had him on a clear liquid diet for six days.  Finally, he was empty.  Food was reintroduced, but he still wouldn't poop.  They told me he had a giant rock of poop inside of him that needed to be manually disimpacted by a surgeon.  

"I'm scared," he whispered to me.  We both were.  I mentioned it to one of the nurses..."Pokerface" is what I called her.  "We'll send one of counselors in, they're very adept at helping kids with their anxiety."

Twenty minutes before the procedure, Helen Israel showed up with woman that looked kind of mannish.  I thought it was the anxiety counselor, but I was wrong.  She was a case worker with the Department of Human Services, and started asking me all of the questions that social workers ask right before they're about to take your kids away.  That was the moment I started tape recording all of the encounters I had with anyone while still at the hospital.  She already knew all of his medical history, which inflamed me more...moreso when she kept asking me questions she already knew the answer to.  I've already been through the DHS gauntlet before, and it was obvious they were trying to set me up for a medical neglect case.  She wouldn't go away until I promised to apprise her of his after-care and follow up plan.

After the manual disimpaction, the surgeon called me and told me that she was startled to find very little stool in his colon...and what little stool there was, it was all soft.

But they wouldn't repeat the MRI and CT scan; refused to do any of the imaging procedures they had told me were too obscured by poop to see anything clearly, not even any xrays.  He kept on vomiting with that nasogastric tube, so they decided to feed him through a transpylori tube.  But they couldn't get it down -- his pyloric sphincter was spasmed shut.  

"Stop the presses,"  I wanted to say upon hearing this.  Because we had maintained from the beginning that the issue was in his small bowel.  

But no.  They were going to get that transpylori tube down by hook or by endoscope if necessary.  But while they were down there, they didn't explore and look around.  I saw a couple of pictures that were taken, and saw that they had noted "lesions on the pyloric antrum."  Whatever that was.

We must have seen a gazillion doctors, nurses, technician, etc., and had to tell the same damn story to every single one of them.  They kept looking at my caucasian-looking kid, and then back at me, triple-checking our bracelets.  "Are you mom?"  It totally seemed like they were more interested in the black woman pretending to be this white kid's mom...and the last thing they wanted to do was pay attention to what we were telling them.

I stayed with him the entire time, and watched as he grew sicker and sicker...thinner and thinner.  He kept on vomiting, which by now was a thick green slick of bile.  He ended up throwing up the transpylori tube.  At that point, they decided he needed to receive nutrition via PICC line.  When I asked what it was for, they told me it was for long-term nutrition.  We had already been there for almost two weeks.  "How long do you anticipate he'll be here?" I asked.  "At least five more days," came the answer.

The picc line was placed with X-ray for precision, and the surgeon told me it would lead straight to his heart.  That was at 1:00 pm on Wednesday.

Early Thursday morning, around 1:30 a.m., a nurse came in to flush the line.  My son had complained of pain in his arm, and when the nurse started to flush it, he began to cry.  She rolled her eyes in bad temper.  "Does he always act this way," she asked impatiently.  "No," I answered, "But he's been through a lot, and he is anxious."  She looked at his record, and saw that he had been given Ativan previously; put in a call to the on-call doctor, and received the go-ahead to administer the Ativan.

She attached the syringe to his PICC line and started to push in the Ativan.  He began to scream that it was hurting him.  She continued on anyway, ignoring his cries, and pushing it in fast (speed shock in iv administration).   Within twenty seconds all of the Ativan was in.  My son looked at me, his eyes as big as quarters, his pupils as big as dimes...and opened his mouth to say something; a large splash of drool spilled out of his mouth, at least a cup, and he suddenly stuck both of his hands deep into his mouth.

"Oh my God," I said "You overdosed him!" I said to the nurse.

"I did not overdose him," she snapped.  "He's received this much Ativan before."  

"Yes, but that was through an iv in his right hand...this is the first time he's recieved anything through his PICC line,"  which went through his superior vena cava and straight to his heart.  I looked up "Ativan overdose" on my phone, and saw right away that he was experiencing those symptoms precisely.  

Benjamin looked at me, and said, "Mom...I've forgotten how to speak English..." and he began speaking in total gibberish, interspersed with sudden coughing attacks, and he tried to remove the PICC line from his arm.  Another nurse entered the room and put her arm around me, leading me out of the room and into the hallway.  "If you don't calm down," she said, "you will be prevented from returning to your son's room.  Please get out of the way and let us do our jobs."

"But she almost killed him,"  I said.  "I'm calm, I'm going back into the room so that if he dies, I know what happened."

Re-entering the room, he lay on his bed stock still.  The nurse who administered the Ativan walked out of the room in a huff.  Ben looked at me, and he looked just like Reagan in the Exorcist...turned his head to me super-slowly and outer-worldly.  "I hate Aleshia..." he whispered.  "Who's Aleshia," I asked him.  "The nurse; she told me that if I didn't shut up and calm down, she would have me tied down to the bed."

Since then, I've learned that Ativan is to be administered over two minutes...pushed in slowly because it's thick and hurts.  Instead of sedating Benjamin, it had the opposite effect, he was wired and awake until 6:00 a.m.  When he finally fell asleep, I began to weep quietly.  He told me later that he dreamt zombies had surrounded our house and were trying to get in.  We don't watch zombie movies or let the kids play any zombie games...and it was all just too weird.

Well, at 8:00 the on-call doctor walked in with a big old smile on her face.  "Wow, look great!  You look like you're feeling so much better!  I think you're ready to go home!"

Are you joking.  "What do you mean," I asked.  And she told me that they had determined it was all in his head and could be handled on an out-patient basis.  As soon as he stooled once, we could go home.  

" was the PICC line so necessary if he's now ready to go home?  I thought he was going to be here for at least another five days?" I asked.

In the two weeks we were at the hospital, he had one bowel movement...a small, soft light-colored turd that smelled like who-would-have-thought-it.  Smelled just like this stray kitten we had taken in three years earlier; I could never forget that smell.

And just like that we were discharged.  We left the hospital, but before close of business, I had already consulted an attorney.

We were both so glad to be home.  I mentioned to my husband that Ben's poop smelled just like our cat's first poop.

Over the weekend, I kept on researching.  "lesions in the pyloric antrum," I typed, and then hit return.  And all that came up was about h. heilmannii infection in cats.

I made an appointment to meet with our family doctor, and asked to have Ben tested for h. heilmannii. He didn't question me for a moment...and when the nurse called the next day and told me the test came back positive, I was elated.  "I've been a nurse for 20 years," the nurse told me, "and I have never even heard of this.  I had to ask the doctor how he knew to test for it, and he told me 'I didn't; his mother did."

At our appointment, I let pointed him to the hard lump in Ben's upper abdoment.  "Why, that's not stool," he said.  "It's a mass on his small bowel."  

He referred us to a pediatric surgeon in Denver, who took a real quick look at him and told me she thought it was constipation.  I wanted to deck her.  And then we went back home, making another appointment with the specialist...who also said it was constipation and prescribed laxatives.  He was the one I wrote the Dear Doctor letter to -- funny, I haven't heard back from him yet.  

Friends, when doctors don't know what the heck is wrong with you, they'll tell you it's Irritable Bowel Syndrome, Cron's disease, Celiac disease, gluten allergy, lactose intolerance, food allergy...and that will be their best guess.  But the time for guessing is long past.  If a doctor can't do more than guess, what good are they?  

Whatever you do, don't believe the "childhood fecal retention syndrome" guess.  If your kid has been pooping regularly, and then suddenly stops doing that -- it's very indicative that something major has suddenly gone wrong.  Since when do you know of anybody getting stressed out and deciding, "I'm gonna hold in my poop; that'll show my mom for making me do my homework."  Yeah, right.

if you suffer from an gastrointestinal/digestive disorder that shows no improvement with standard medical treatment, and you happen to own a cat, dog, ferret or pot-bellied pig with which you regularly snuggle, don't fall for the ibs/cron's/celiac/lactose intolerance/gluten and other food allergies basket of best-guess causations...and whatever you do, balk at the "childhood fecal retention syndrome" bullshit -- ask your doctor to blood test for h. pylori and h. heilmannii...because that could be the very real cause of your symptoms.


  1. It seems the doctors did all of the testing they thought appropriate. You yourself said that hpylori I very rare. Typically doctors start with the not so rare and then move on from there. There is definitely a way to advocate for your child when your child is ill, but that includes mutual respect being shown. Reading this I see name calling which makes me wonder how much respect was being shown to Children's staff. I have been taking my child to Children's for the last 14 years and have had nothing but respect for the facility. They have give. Great care to our son who currently is there all the time. There are bumps in the road at time, but the doctors and nurses truly care about the Children they care for. They have saved our sons life many times and many other children's too. I am so thankful to have this incredible hospital nearby.

  2. Pam, thanks for taking the time to write, and I am glad to hear about the great things Children's Hospital of Colorado has done for your son.

    My complaint is with Children's Hospital in Colorado Springs and the doctors and nurses who treated my son there.

  3. Oh, and just to clarify: I was absolutely respectful of the staff at Children's Hospital of Colorado Springs; it was only after the doctors who nearly killed my son machinated to conceal the hospital's MANY blunders by falsely reporting to the El Paso County Department of Human Services that I suffered from Munchausen's Syndrome by Proxy and perjuring themselves on the stand that my gloves finally came off.

    Luckily, the proof can be heard on the hours of audio I had the foresight to record...some of which I've already posted.

    Those who follow my blog already know that Spydra calls 'em like she sees 'em...and if it walks like a duck, and talks like a duck, and acts like a duck, IT'S A QUACK.