Category Archives: Diagnosis

Why your doctor may delay diagnosing your baby’s Pyloric Stenosis

A member / friend in Facebook’s Pyloric Stenosis (“PS”) network messaged me:

After having a baby with PS I find it very difficult to understand why it takes so long for the doctors or specialist to diagnose it.  Just like to know your thoughts.  We were obviously extremely lucky.

Several other common problems around infant PS were raised and we’ll seek to address each of these in the following posts.

If like this parent your baby’s (or your) PS was recognised and treated promptly without ongoing problems, you are indeed lucky and will feel very grateful to all concerned.

parent painBut if you or your parents suffered to the extent of being traumatised by PS, you join a sizeable club!  Social forum sites such as BabyCenter (or –Centre), Facebook, MedHelp, Patient and Topix have allowed many thousands of parents and PSers to voice their unhappy experience of medical matters related to PS.

Well may we all wonder about the actual number of people with the problems on this parent’s mind.  For readers who are wondering, What are the problems? please read on…

Sadly not a few doctors (notably GPs and paediatricians) are arrogant and dismissive.
Parents who have done some solid homework on PS may be brushed off, those who have had a personal experience or previous baby with PS may be ignored, mothers who have nursed several earlier children are told their feeding technique is the problem, and first-time mothers with multiple PS cases in their family are told they are “nervous nellies”.

Despite key symptoms that seem to clearly confirm a PS diagnosis, doctors may well delay diagnosis, referral, and even ordering tests.  Rather they will “watch and wait” or prescribe medication and tell the parents to “come back after a week if symptoms persist”.  This sometimes continues for several weeks (yes!).

My evaluation?

  1. PS occurs in between 2 and 5 babies in every 1,000, so the several thousand stories I have read on the various online social media pages over more than 20 years are nevertheless a tiny proportion of the whole picture.  On the other hand, for every story that gets to (say) Facebook there would be several that don’t.
    A recent Danish study is the only large one I know of that’s been done to chart problems around PS, but this study only dealt with risk factors (“etiology”) and several elements narrowly related to the surgery (“morbidity”).
    I am so annoyed that nobody seems interested in doing a substantial professional study on many more of the questions involved with PS.  I’d so much like to run something with the Facebook network of several thousands but (a) it would be well-nigh impossible for a lay person to get enough participants, and (b) the results would not be statistically representative.  For useful data we’d have to have access to a less “slanted” sample based on hospital records – and then on that basis get enough participants.
  2. PS can develop very rapidly or very slowly, and some sometimes too mildly for surgery.  Many of the accounts on Facebook tell us of the operation occurring 4-6 weeks after the first signs of PS in a newborn, and that the baby was losing condition only in the last few weeks.  Others like me were diagnosed and sent to surgeon within days of birth.  Others again are diagnosed only at a dangerously late stage and after weeks of being fobbed off by medical professionals.
  3. arrogant doc5Doctors are increasingly trained in “the scientific method”.  This means that as a doctor you’ll ignore “circumstantial evidence” (like what people say and what you yourself can observe) and use only the evidence of imaging and blood tests.  And you delay serious consideration and diagnostic tests until you decide that running these tests justifies the cost, and then you wait for results.  I had my op in 1945, “the good old days” when (judging by the medical articles of the 1920s to 70s) the medical community usually and quite effectively went (a) by the physical signs which the parents gave the doctor and (b) what the doctor could observe: no soiled nappies, non-bilious projectile vomits, peristalsis, loss of weight and condition, dehydration, and “the pyloric olive”.
    Because of this trend towards being pedantically “scientific”, the cost factor, and the fear of complications and litigation, many doctors today try to avoid the op until it’s absolutely unavoidable.  The unstated attitude seems to be, “If the delayed diagnosis damages the infant, that won’t likely be evident for many years, by which time a link with the delay will be impossible to prove”.
  4. There are several organic (or organ-formation) bowel conditions of infancy that can at first be confused with PS.  This is especially so if the PS develops slowly and not many of the key signs of it have developed yet.  And then of course there are the more common non-organ-formation problems such as infection, reflux or GERD, and faulty feeding techniques.  Again, if the signs of PS are there, any delay could be damaging to the child and prolong the baby’s and the parents’ pain.
    And again: some PS never develops beyond a level mild enough to be treated with medicines, whether or not such treatment is effective in the long term.
  5. Sad to say (and judging by the evaluations by countless parents from all over the world) there must be far too many doctors who have a “god complex”.  This shows in their attitude to what the parents (and especially the mothers) report, even when they have done their homework and/or know their own and often their family history includes PS.
    Even worse, doctor friends have confirmed this to me, including one horrified parishioner who told me that on the first day of Med School (UNSW) his class was told that they now belonged to the upwardly mobile and indeed the elite of society.

Is it unreasonable to believe that much of the deep frustration and even trauma reported on Facebook is quite avoidable?  Of course not!

Mum w babeHow do troubled parents deal with this kind of situation?

  • Do your homework: google for the symptoms of PS and record the obviously significant things about your child: daily weight, input and output, indicative events, and general appearance and alertness.
  • Don’t consult your doctor alone: take your spouse, partner or other relative or friend for support, to convey your seriousness, and to remember and record what is said and done.
  • Don’t go with a preconceived idea of what you want, but don’t be snowed either.
  • Get a second opinion if necessary.
  • Go to the ER of the nearest children’s or general hospital if dissatisfied and if necessary don’t leave there until you sense it is right.

Always remember, you are your infant child’s only and best advocate.

Their future wellbeing may well be at stake.

Advertisements

Why your doctor may delay diagnosing Pyloric Stenosis

A member / friend in Facebook’s Pyloric Stenosis (“PS”) network messaged me:

After having a baby with PS I find it very difficult to understand why it takes so long for the doctors or specialist to diagnose it.  Just like to know your thoughts.  We were obviously extremely lucky.

Several other common problems around infant PS were raised and we’ll seek to address each of these in the following posts.

If like this parent your baby’s (or your) PS was recognised and treated promptly without ongoing problems, you are indeed lucky and will feel very grateful to all concerned.

M820/0092But if you or your parents suffered to the extent of being traumatised by PS, you join a sizeable club!  Social forum sites such as Facebook, BabyCenter (or –Centre), MedHelp, and Topix have allowed many thousands of parents and PSers to voice their unhappy experience of medical matters related to PS.

Well may we all wonder about the actual number of people with the problems on this parent’s mind.  For readers who are wondering, What are the problems? please read on… Continue reading

Pyloric stenosis: treasure and then trauma

How could the birth of a new life, the time of life’s greatest possible personal triumph, also come to be remembered as the greatest trauma that the same person has ever endured?

baby worriesThe birth and unexpected death of a child must surely be the most poignant possible example of that.

A close second must be the birth of a child who is damaged or imperfect in some other way. But it is surely beyond belief that the tragedy of finding that this brand new gift is damaged is sometimes made unimaginably deeper when the people we look to for advice and help are unsympathetic and dismissive of our concern and pain.

Surviving infant surgery (the theme of this blog) sometimes means for new parents, “surviving the hard and closed minds of the medical world”.

There are several Facebook Groups that offer support to those affected by infant surgery, especially infant pyloric stenosis.  PS is the condition responsible for the highest number of life-saving surgeries (operations) on babies. The great majority of “threads” (complaints, discussions and advice) on these Facebook sites relate to the unnecessarily long weeks before diagnosis, and to being treated very poorly by doctors.

Several mothers have posted about their unexpected and deeply frustrating experiences on their blog.  Jenn Cahill is a British mother whose traumatic experience in getting recognition and treatment for her son’s PS helped her to start blogging about this and other challenges of pregnancy and new motherhood.

girl-w-laptop01In a recent post, Pyloric stenosis, Jenn put on record her mother’s battle to have her (Jenn’s) PS taken seriously back in 1993, only to happen again a generation later!  Jenn post chronicles the almost unbelievable story of her 2-3 week struggle in 2015 with dismissive medical staff before her son’s PS was taken seriously; by then his vital signs had deteriorated to the extent that it took several days to resuscitate him enough to withstand a relatively simple surgical procedure.

At the same time as she posted her story (early February 2016), Jenn participated in a spirited discussion of this issue on Facebook’s Pyloric Stenosis Support Group.  (Note: this is one of several “closed Groups” dealing with issues around PS, “closed” meaning that Facebook subscribers can find each Group but not read and add their own material unless they join that Group.)

Here is the opening story to a P S Support Group thread – from a US mother, posted on 29 January 2016 –

Hello all, my son and I were struggling with feeding issues/lack of supply, so I had him checked for tongue tie.  As it turned out, he did have posterior tongue tie, and he had his frenulum snipped at 2 weeks.  His first feeding afterward, he threw up a large volume within minutes of each other.  I called our ped in a panic and was told he overfed as he was finally able to suck effectively.
This began 7 weeks of misdiagnosis hell.  He continued to throw up 1-5 times a day.  Our ped diagnosed him with reflux.  We tried different formulas, and he was put on prevacid.  His vomiting wasn’t projectile, but forceful and huge in volume.  The worst was when he was on enfamil AR – the formula was so thick that it was extremely difficult and painful when he vomited.  I was so scared watching him during these episodes.  We were at the ped nearly every day, getting nowhere.
Vomiting continued, and he was barely gaining weight.  We went to a GI specialist at 4.5 weeks.  At our first appointment, I asked if he could have PS and if we should do an ultrasound.  My concerns were brushed off.  The specialist diagnosed him with a milk protein allergy in addition to reflux – told me this was all normal baby stuff.  My son’s health continued to decline.  For an entire MONTH, we saw this doctor.  I asked at every appointment if he had PS, shouldn’t we do an ultrasound.  I was refused every time.  Finally, at our last appointment I demanded one, which confirmed my son DID IN FACT have a severe case of PS.  She fought his diagnosis all day, ordering the barium swallow test and ANOTHER ultrasound.  Both of which confirmed PS.  He had surgery the next day, after being hooked up to iv’s for 24 hours as he was extremely dehydrated.
He is now 7 months, thriving, healthy, so happy and sweet.  Yet, I can’t get over what we went through.  I can’t forget the pain and stress of it all… can’t stop punishing myself with the what ifs.  I thought I was progressing, but today I had to write a letter of hardship as we’re applying for financial assistance with his many overwhelming medical bills.  I had a total meltdown reliving that time.
Sorry for the long post.  Just looking for support from PS parents.  He is my first baby.

In a later frustrated response –

Made me question my instincts over and over.  Made me feel like an utter failure as a mother.  All the while my son’s health deteriorated with no end in sight.  I’m so glad I finally demanded that ultrasound that day… I can’t imagine how much longer he would have suffered or what would have happened to him.

Another new mother added –

Funny you should post this as I’m up at 3 am reliving our 9 weeks of hell with exactly the same story as yours.  The guilt and anger consume me at these times of night so I decided tonight that I am over the weekend going to make a formal complaint to the hospital as I want to ensure an investigation takes place so it doesn’t happen to someone else as new parents with a very ill newborn.
All I think we can do is console ourselves that we trusted our instincts eventually and we put our trust in the professionals which we should, but unfortunately their duty of care was sub-standard.
I’m glad your little one is now thriving, my little boy is also 7 months and doing really well but it has traumatised me and although it’s faded and I’m sure will more with time, I think these experiences will last with us for a long time.

And another mother wrote –

Thank you for reaching out to me – I’m sorry you also went through this.  It’s so awful.  I swear, I have PTSD.  I suffered major anxiety/panic attacks the first month or so afterward.  I felt okay for a bit, like I’d processed things and then out of nowhere, I’ll have a bad day like today.  It’s also hard not to worry that every little thing is a result of the many weeks of unnecessary vomiting or fear for future health issues.  I filed a complaint against the doctors with the Medical Board… who knows if they will be reprimanded, but at least I tried.  And, wrote scathing yelp and google reviews.  It’s sickening how negligent medical care can be.
Can we keep in touch if we ever need to talk or are having a rough day?  I don’t feel like any family or friends can truly grasp how I feel or what we went through.  The worst is the “just be thankful he’s healthy and thriving now.”  As if I’m not or I don’t know that…

And she added –

Ugh, don’t get me started on insurance.  I feel I’ve wasted half my son’s life on the phone dealing with them.  Pretty much every single nap until the last couple weeks.

And another mother’s story in brief –

My story is exactly the same as yours except I was told reflux by 8 different doctors.  And just treated like an “over anxious new mum”, told to go get some rest!  Had to film my baby having a seizure which he would have every night from the pain and the choking before I could get just one doctor to listen!  I’m still so angry.

There were many more contributions than those included here.  I end this selection with another of Jenn Cahill’s responses –

Had exactly the same story as you with the main difference being I had PS as a newborn!!!  And they still refused to diagnose him despite it being a much stronger risk if your mother has previously had it.  Absolutely ridiculous.
I struggle to have faith in Doctors now as I think they’re trying to just brush me off as a silly mother as they did when he was tiny.
He’s 6 months now and yet I still panic if he throws up a large amount.  And I’m terrified for the future as we are planning a second and I’m so scared we are going to go through it all again.

It needs to be added here that –

  • Scared_Doctordoctors are known to be busy and work long hours, usually covering a wide range of health issues: hardly a situation conducive to a sensitive listening ear;
  • many infant conditions are no doubt recognised quickly and dealt with well;
  • several of the symptoms of PS are not unique to this condition, nor does PS always present the same way:  correct diagnosis is of course essential and often takes some time; and
  • despite doctors being as imperfect as ourselves, the death rate from infant PS has fallen from the majority a century ago to very low today (less than 1%).

Nevertheless, the medical world has some well-recognised problems, including some practitioners having a serious attitude problem and the number and nature of complaints about the way people are dealt with at what should be one of the most beautifully memorable times of their lives.

Pyloric stenosis diagnosis – continuing grief

Infants who need life-saving surgery understandably cause their parents enormous anxiety.  This will of course affect all those among whom they move at a stressful time like this: doctors and nurses, E D staff, their other children, and their extended family and even close friends.

It is sad but true that the great majority of parents who post online about their infant’s surgery for pyloric stenosis (“PS”) mention at least two things –

  1. baby worriesThe diagnosis of their baby’s condition was for them a distressingly demeaning and unnecessarily extended process, not only because of the general medical practitioner(s) involved but also due to pediatric specialists and emergency department staff.  The other almost universal complaint is that
  2. this time was the most traumatic event they had ever had to endure.

This situation continues to amaze and infuriate me.

  • PS is by no means rare.
  • It occurs in between 2 and 5 babies in every 1,000 live births (in developed countries).
  • The symptoms are almost always quite clearly recognizable by the time parents seek medical help.
  • Quite often nowadays parents have done some homework and what they report about their baby can easily be verified.
  • In most cases PS can be quite quickly and accurately diagnosed starting with the classical, observable signs that have been used for a century, and without the need for lab work and imaging.

I urge our readers who work (or may work) with sick babies and their parents to read the two articles to which I have provided links.

Doctor-arrogant3One is a news item from an English newspaper which tells the story of a child with many problems, most of them rare and complex.  It is amazing that despite clear symptoms, her PS was not discovered for 18 months!  The PS cannot have been life threatening, it would have been masked by the child’s other maladies, but once again, clearly identifiable symptoms seem to have been missed for a long, long time!

The other link is to a lengthy letter from the parents of three children, each with serious medical conditions, including one with PS.  This very articulate letter addresses the substantial underlying reason for the problem I raise again in this post.

The problem is not that many doctors lack an encyclopedic knowledge of the huge list of medical conditions and their variable symptoms.  Nor is the real issue that not every medical practitioner has a special knack of diagnosing the reason for a health complaint.

not-listeningThe problem is attitude.  Unwillingness to listen.  Lack of goodwill towards, patience with and respect for patients.  Not only that, but all too often a doctor’s attitudes deeply offend and distress the parents of a very sick infant: a superior, patronising, often denigrating and dismissive manner.

The letter mentioned above expresses well the recognition that many doctors do their work with skill, sensitivity and kindness.  It also conveys that parents and their little patients are (later) deeply grateful for the restoration of normal life and health.

But why do so many of the most vulnerable and anxious “consumers” of health care keep expressing outrage and pleading for much better care from medical professionals?

The present situation must be urgently addressed by medical schools’ selection, shaping and training of their students, and also by the relevant professional bodies, and by far more effective mutual accountability and quality assurance policies and programs.

Most of us can only describe the problem and plead and challenge the medical community to work towards improvement…

Is anybody listening?

Pyloric stenosis: dealing with doctors who delay

Doctors working in a hospital or private practice should be aware of the symptoms and other characteristics of infant pyloric stenosis (“PS”).

M820/0092Sadly, many are not.  Just go online and read the horrible stories of hundreds of new parents.  Forum sites like Facebook and BabyCentre (in North America, BabyCenter) include a sorry litany of lamentations and “lip” about ignorant doctors, simplistic notions about the causes of a blocked stomach in a baby, and lack of knowledge of the basic signs of PS, not to mention the autocratic attitude of many of these doctors, all delaying a prompt and life-saving diagnosis and treatment process even further.

Yet PS is the most common reason for infant surgery that is “non-elective” – in other words, unavoidable to save a baby’s life.  And if PS is discovered soon enough and the baby is older than one month, non-surgical treatment is an option (although not often considered) that may save a mountain of trouble in later life.

Parents deserve much better than a medical professional roadblocking diagnosis and treatment: an uncontrollably sick newborn is stressful enough without being repeatedly fobbed off or put down by your doctor.

My holiday reading this month (in a balmy Aussie summer) turned up two telling internet articles that link with the above.

The first was from a British doctor who reflected on the challenges of working in a hospital emergency department (“ED”, or accident and emergency section).  He complains about the impossible hours these doctors work, to us “ordinary people” an unfathomable mystery that has been widely known for many years – and still seems to be beyond the combined skills of the most intelligent, educated and prestigious members of our community to address.

Scared_DoctorWhat this doctor also detailed was that so often ED doctors and staff have to work with the saddest and most damaged and dysfunctional people in our cities and towns: substance abusers, people without the ability or willingness to treat others with kindness and respect, and of course, the many people who have suffered the consequences of these ugly symptoms of a broken world.

Reading this doctor’s account brought home to me (yet again) that there is another side to the litany of parent complaints I mentioned above: many doctors are stressed out by Western society’s unwillingness to pay ever more for health care, by their profession’s inability to address the totally unreasonable workload of “juniors”, and by the continuing and deepening breakdown of society.

The parents of a sick baby are often the “collateral damage” of this.  Little do most of us know or care what may cause a doctor to be aloof, dismissive, or arrogant?  The parents themselves are usually too tense and preoccupied with their sick baby to consider “the big picture”.

What can the parents of a sick child do when they are faced with a doctor who upsets them even further?  Here are some suggestions:

  1. blog-writing1Make notes of your baby’s story: keep a full and detailed record of its weight, feeding intake and times, its output (both top and bottom), its general wellness and appearance, and anything else you notice.  This will enable you to give the doctor or ED staff clear facts.  It’s much harder to brush these aside.
  2. Do your homework and learn what you can from books and/or the web about your baby’s symptoms.  Stomach or feeding problems can be caused by quite a list of different medical problem conditions, and each comes with different symptoms and needs different tests to help guide diagnosis.  Many doctors will not spend precious time or order costly tests to search for or nail down a diagnosis unless there are already clear signs pointing to it, or (and this is sad but understandable) unless it becomes clear that the baby’s life is in danger (e. g. as shown by steady weight loss or dehydration).
    Sadly, if this happens, the baby may already have suffered effects on its brain development.  Parents should do what they can to make it easy for their doctor to steer a diagnosis in the right direction.
  3. writer-thumbA doctor is trained and likes to work as a scientist: they have to gather the evidence and work methodically towards a conclusion.  This means eliminating possible causes.  Allow the doctor to be the scientist and stay in the driver’s seat.  Hold yourself back from telling the doctor what you think or have already decided what the problem is, but be informed and alert enough not to let the doctor fob you off or delay a decision if the symptoms you have listed clearly point to a particular problem.
    The need for all this advice is abundantly clear.  there are countless reports of doctors ruling out PS “because your baby is a girl” or “because your baby is not your first-born”.  Other common reports are of doctors refusing to even consider testing for PS even though there are clear symptoms and one (or even both) parents had it and the condition is common among the baby’s relatives!
  4. Patient & doctor03Be firm and insistent about what you expect but stay calm, respectful and reasonable – hard as this may sometimes be.  Most of us do not handle hostility, abuse, and unreasonableness well!  Doctors are no exception.  Mind you, it seems that not a few doctors invite anger and harsh language by their lack of medical competence and/or people skills.
    If you know you risk “losing it” in some way or other over a sick infant, it would be wise to take a close, supportive and mature family member or friend along.  Some people I have advised online have (I believe) not helped their baby’s cause by their own behaviour.

My next post will look at the second article – about the selection and training of doctors.

Are Pyloric Stenosis problems history yet?

In my previous post I explored the horrible old mantra that “babies have no brain and therefore will not feel or remember pain”.

When I was just 10 days old I had my first surgical operation, for a pyloric stenosis (“PS”, a blockage at the stomach’s outlet) which occurs fairly commonly in between 2 and 5 baby boys and about one girl in every 1,000.  In 1945 (and for several decades after this) the trauma easily caused by what is today regarded as simple surgery was not understood –

  • the operation was often done without a general anesthetic, sometimes even without local pain control because of the major hazards and possible side-effects of each;
  • hospital stays after such an operation were routinely 2 weeks;
  • in hospital sick and recovering babies were routinely separated from their mother to reduce the danger of infection and they were fed on bottled milk;
  • the effects of these practices on the infant’s parents were usually discounted and masked by a code of silence, which often made them even more toxic in the long-term on parent and patient.
  • What I have outlined here has had a lifelong effect on me, and most likely also my parents, although they maintained their silence to their deaths many years ago.

Nerdy MD2One effect of this on me has been a lifelong and obsessive interest in PS and infant surgery.  In recent years what I have learnt and continue to learn has been channelled into teaching and advocacy for the a list of “issues” around these two subjects –

  • What is PS and how was it treated yesterday and is it treated today?
  • Can surgery for infant PS be avoided?
  • How can PS and its surgery affect the infant’s parents?
  • How can they affect the patient in the immediate and long-term?
  • Why is the diagnosis of PS often so frustratingly delayed and what can be done about this?
  • How can parents deal with the problems babies frequently have after the operation?
  • How can PS survivors deal with some remarkably similar problems that all-too-often arise in adult life?
  • Do babies feel and remember pain and other trauma of their pre-verbal stage of life?
  • What are the symptoms of PTSD that seem linked to early infant surgery, and what therapies and programs are available to those affected?
  • Since gaining access to the internet in 1997, I have learnt much about all the “issues” listed, from websites, blogs, social forums, and some valuable personal interactions and friendships that have resulted.

In 2015 I plan to continue sharing and interacting with the PS community via this blog, as well as on several social forums, notably the various Facebook Groups committed to offering support, sharing information and raising awareness about PS.

SeatonHarlan age 4 Fb 140502-2PS survivors and their parents on Facebook sometimes express their profound gratitude that some of the issues I have listed above are now largely becoming consigned to the historical record.

Greatly improved support for parents, good pain management, new surgical techniques that much reduce disfigurement, and short hospital stays are now standard.  Parents may also remark that there seems to be a slowly growing change in the medical professions’ awareness of PS and their attitude to PS parents: less professional paternalism, arrogance and conceit.  Changing social attitudes and better education in medical school seems to be germane to this.

However, it is also quite clear that we are far from being able to “move on” and go fishing!

Networking after pyloric stenosis (6): adult forms of PS

Pyloric stenosis (“PS”) is far more common in babies than in adults, and its cause is also easier to diagnose – despite many stories of doctors being far too slow to suspect let alone test for it.

In babies PS occurs in between 2 and 5 times in every 1,000 live births.  Adult PS is a well-recognized and documented condition, but (perhaps because there are two forms of it making it harder to diagnose) there don’t seem to be any significant (i.e., large study) statistics on its frequency.  I read in one report that there are only 200 reports of it in the English language, but this gives no helpful indication of anything much!

Two forms

  • Primary PS in adults is quite rare and most similar to PS in babies: it is marked by a thickened pyloric muscle narrowing or even blocking the stomach outlet, causing nausea, pain, vomiting and food retention with stomach enlargement. This condition is caused by hyperacidity which is caused by raised levels of gastrin, a blood hormone that triggers the release of gastric acid.  Why this should occur later in life is not well understood; it is suspected that higher levels of gastrin may have existed through life but for some reason start to cause problems only at a later age.
  • Secondary PS is also caused by higher acidity in the gastric passage, but in these cases the acidity helps give rise to stomach or duodenal ulcers and/or cancers. These or the scarring caused by healed ulcers then narrow the pylorus, causing similar symptoms.

This background will help explain why the diagnosis for adult PS is often a challenge to make and why the choice of treatment will also vary.

Both forms are linked with infant PS in that their symptoms are similar, they are caused by high acidity, there may be an obvious hereditary link, and they occur about four times more often in males.

My search of medical articles on this subject produced a 2010 report of primary adult PS in a 71 year old man that is well worth reading for the information it gives and on which I have drawn here.

This medical report is instructive, but the personal experience of sufferers of adult PS will also be valuable to readers here.  Once again in this series I also want to draw on the stories of some of these people as reported to the PS Groups on Facebook.

BNL  (born about 1990)
Did anyone get diagnosed with pyloric stenosis as an adult?  Mine is not completely closed apparently but that’s what the surgeon who did my upper GI said I have.  He prescribed Prilosec 40mg twice daily.  Does this really fix it?  Just really worried.
I would like to introduce myself and give you my story.  My name is B and my diagnosis of pyloric stenosis was just made yesterday.  It all started when I was about 15 years old.  I used to get intense abdominal pains on my right side after running in gym class.  Over the next 10 years I had gallbladder surgery in which they found nothing wrong with my gallbladder, numerous pain medications in which I’ve had bad reactions to, was put on antidepressants and being told the pain was all in my head just to have terrible reaction to that that impacted my life negatively.
It was not until I was given an upper GI yesterday to show that I had pyloric stenosis, however the doctor was able to fit the probe through and look at my duodenum however was told that I still had pyloric stenosis because it was so tight.  I have endured so many years of pain and nausea that it was depressing.  I have a 2 year old son and 1 year old boy girl twins in which my boy twin has a rare genetic disorder that causes seizures.  I have a busy stressful but amazing life that the pain makes impossible to keep up with.  I look forward to hearing your stories and also getting and giving support from everyone.  I very much appreciate being part of this group and don’t feel so alone anymore.  I have included a pic from my endoscopy to better explain what I mean sorry if it’s TMI but I have gotten a lot of questions lately about this.  Again thank you!  Any advice is appreciated!…
Please help!  I am desperate!  Is there anyone here or knows someone with pyloric stenosis?  I am being yanked back and forth being told that I do, then don’t have pyloric stenosis.  Since I posted last my symptoms are getting worse.  I am nauseous all the time, severe right upper abdominal pain that is just below my ribs and I can literally feel a ballooning feeling there, I am losing weight and am feeling very tired and fatigued all day.  Apparently my esophagus is inflamed, my stomach is hard, biopsies came back normal, nothing on CT scan except for some most likely benign cysts on my liver and some fluid in my cul-du-sac.  Sorry if this is tmi, but I am at my wits’ end.  Was sent home on Prilosec 40 mg twice daily, they refuse to give any pain meds but tramadol which I refused now because I can no longer handle the side effects.  I called my surgeon’s office and told them I need a straight answer and treatment because I can’t handle this.  They gave me some “katafate” for my chronic ulcers although I was told I didn’t have one on endoscope.  Please any advice is appreciated.  I have three kids at home, one with special needs, and I can’t function like this.  Thank you so much and sorry for such a long post.  Below is my endoscope pics again if anyone can give their input.  Thank you!…
My surgeon confirmed that I do have pyloric stenosis and wants me to see him sooner than planned since my symptoms are persisting despite being on Prilosec 40mg twice daily and carafate four times daily.  (2014)

MM  (born 1991)
I’m a 23 year old female currently undergoing treatment for adult pyloric stenosis.  I was wondering if anyone on here was the same or if the cases on here are for infant PS, as I’m finding it difficult to obtain information on the adult version as it seems extremely rare compared to that in babies.  Any information or help would be appreciated, thanks…
Yeah, I think I’m like the 1 in a million person who has it (but classic symptoms)…
I have so far had two balloon dilatations via upper endoscopy.  My surgeon doesn’t want to do keyhole surgery f it can be helped.  The problem is they don’t know what’s causing my PS,  I have extreme ulceration of the duodenum which isn’t improving with certain PPIs like omeprazole.  So he’s looking at other things like dissolvable stents etc., but yeah, they can do keyhole surgery as they do in babies.  Rather than the older method of the larger scar.  It’s a waiting game with me, haha! …
I’m just glad to get a doctor who listens to my symptoms.  He’s been so great.  The keyhole surgery performs the same surgery as with the large scars but with technology advancements they don’t need to slice anymore.  But it should be the same surgery performed…
TB wrote in response to this:  … I was diagnosed with adult p s about 10 years ago.  And there really isn’t a lot of information out there for adults with PS.  I’ve had a balloon dilation probably about 15 times.  My doctor doesn’t want to do the keyhole surgery either because it is very dangerous on adults.  I get them done every 3 to 6 months with the dilation and that seems to keep things under control…

Other adult PS experiences including these have been shared on other web forum sites –

SG (born about 1979)
hi there im a 32 year old female with pyloric stenosis. i know this is very uncommon in adults and finding it hard to find any information. i have no family history of this and had no signs of it as a child. i got diagnosed with the condition about 4 years ago. i had severe abdominal pain and could not keep solids or liquids down. this lead to kidney problems from been dehydrated. it took over a year to find out what was wrong and during the process the doctors also found crohns disease and endometreosis (no family history of these conditions either). my bowel, uterus, and pelvic wall are all fused together so symptoms of all my conditions are hard to define as they all affect each other. i have had 2 balloon dilations on my stomach to stretch the opening. i would like to know if any one has information on whether it is common with no family history or common with the other conditions. also if anyone knows any useful advice on this condition which may help me.  (posted on Healthboards 2011)

NN (age not given)
I decided to start a blog so I can update people, raise awareness, and just get out my story when I’m having a rough day.  I have had many people messaging me to ask what has been going on in the past month making me end up in the hospital and on so much medication so this is an easy way to answer everyone :).  Right now I’m just living in the present moment and taking each day at a time.  I don’t know what tomorrow will bring or when I will start feeling better, but just have to try and be positive and get through it.  Here is my story…
My story

I have lived my whole life with a nauseous stomach and constant vomiting.  When I was three my parents said I would grab my stomach and cry.  No pediatric gastroenterologist or pediatrician could figure out what was wrong.  They all just attributed my stomach problems to stress and eventually abdominal migraines.  And that I just happened to get the “stomach flu” more than anyone else.  I thought feeling really full after eating a small amount was normal. The older I got I started having horrible side pains on top of the nausea. My mom and I went to the pediatrician when I was 19 and after having tests to rule out appendicitis, told me to try some yoga. I was appalled…was I really that stressed to cause this many health problems? I had vomited every week of my life almost… on road trips, my first communion, from eating too much (or rich of foods), in stores, and on field trips.  I threw up during a final my freshman year of college and was back to finish it right after. I spent my life in emergency rooms and urgent cares for iv fluids and nausea medicine.
Finally, I had enough and needed an answer or at least give it another try.  I found a gastroenterology clinic in Lone Tree and just happened to get Dr. Patt as my GI.  I remember my mom telling me to not get my hopes up when we had my appointment during winter break of my sophomore year of college.  But Dr. Patt surprised us and has been such an amazing doctor and even inspiration since then.  I got a blood test for celiac disease (gluten intolerance)… negative.  I had a gastric emptying study (GES) which came back abnormal.  For the GES I had to eat oatmeal with radioactive substance and take pictures of my stomach every so often.  Dr. Patt also did an endoscopy (boy was I nervous!) and saw my pyloric sphincter (muscle between my stomach and small intestine) was so small and tight.  Pushing the endoscope through made it bleed… he had never seen such a case.  Of course I had to be a rarity!  My diagnosis was adult pyloric stenosis and gastroparesis.  Pyloric stenosis is almost always only seen in infants and requires emergency surgery because the pyloric sphincter is completely closed leaving the food in the stomach resulting in vomiting.  My pyloric sphincter was big enough just to let a tiny bit of food through but not nearly enough.  Gastroparesis literally means paralyzed stomach and the stomach does not move correctly to get food through.  This is why I was always so full and vomiting so frequently.
I tried reglan (a stomach motility medication) which made me worse because my stomach was trying to empty against an almost closed opening.  Dr. Patt injected botox in the summer of 2008 in my pyloric sphincter with the endoscope to relax the pyloric sphincter muscle.  Wow it made such a difference!!  I was able to eat and live normally for a few months.  But of course I started getting worse again.  Botox was injected once again in January of 2009, but no such luck that time around.  The last option was surgery to widen the pyloric sphincter.  I went to a general surgeon who had never heard of pyloric stenosis in adults.  I later learned there is only one other reported case of primary adult pyloric stenosis so no wonder no doctor had heard of it!  I had pyloromyotomy surgery which is what they do in infants.  The surgeon cut some of the layers of my muscle.  He made his incision in my abdomen and was shocked at what he saw.  My pyloric sphincter had grown so much scar tissue and was extremely inflamed from food trying to push through my whole life.  My liver and gallbladder had attached itself to the pyloric sphincter with scar tissue… scary I was living like that!  This inflammation was causing me side pain and low-grade fevers.  He described cutting the layers as trying to cut a wad of rubber bands.  He also had to cut off the liver and gallbladder.  My stomach got punctured in the process and I woke up in the hospital with an NG tube (to vent my stomach) and on a liquid diet.  I had many complications with the surgery… ileus (intestines stop working after abdominal surgery) and a gross infection.  It would all be worth it though in the end I kept telling myself.  I would be cured I thought… little did I know…  (posted 2011 as a blog)

NN (age not given, source not recorded) –
I was diagnosed with this in the beginning of February after it was revealed in an endoscopy exam.
I had the same problem in April 2008 after complaining of abdominal pain. The doctor at that time was able to dilate the pylorus using a balloon.
In November I started getting abominal pain again after eating, bloating, vomiting if I ate too much (3 meals in a day), feeling of fullness, growling and gurgling noises at all times, etc.
The endoscopy showed the pylorus was now so closed that the doctor said he was afraid to dilate it due to risk of perforation. He said that 1 or 2 dilations is ok but when it keeps shutting the only option is surgery, especially since I’m young.
I saw a surgeon and he said that he would not perform a pyloroplasty (cutting the pylorus and widening it) because he believed the area is now scar tissue. This condition is found mostly in babies and it’s rare for someone my age to get it. As a baby the tissue is still soft and will heal well, but at my age he said there is a risk for the cut to not heal properly, and then I would be dealing with a ton of other problems.
He wants to do a gastroduodenostomy and create a connection between the stomach and the small intestine to bypass the pylorus. I’ve read about the complications of this procedure and they scare the shit out of me, mainly the dumping syndrome that arises from undigested food entering the small intestine as well as the possibility that bile from the gallbladder may enter the stomach and cause irritation.
Does anyone know if the pyloroplasty can be done at my age? The complications for that are much less problematic, no dumping syndrome, no bile leakage, and it is the preferred procedure for babies.
I would much rather get a pyloroplasty done but the surgeon I spoke with does not want to take that route. As of now, if I eat really small meals, avoid thick, tough breads or foods, and make sure I chew my food, I still get a little bit of pain but I am not vomiting and I can get through the day. I would rather hold out to see if the pyloroplasty is a viable option than jump right in and get the gastroduodenostomy.
Also, if you know a forum where I could get some really good advice, I’d appreciate it. I’ve read articles regarding this procedure (yay for college library access!) and the pyloroplasty has been performed on adults in the past with success, so that is a light of hope for me.

PS (born 1984)
I’m 22 yrs old and for the most part I have had a very healthy and happy life until this past January where I started having what I call the “rotten egg burps.”  I went to my primary care dr. and was diagnosed with having ulcer like symptoms and I was put on prevacid.  Shortly after in early march I started throwing up after eating.  To make a long story short I went to the gastro dr. and convinced that I was having ulcer problems he told me throwing up was normal and I got sick every day for three months dropping 30lbs.  I was hospitalized for dehydration after passing out where after several tests it was determined that I had a gastric outlet obstruction.  I had about six endoscopes with dilatations that proved unsuccessful and the burping came back almost instantly.  I decided to have a second opinion done and found that after about six more dilatations I bled internally and the talk of surgery began.  The prognosis was pyloric stenosis which apparently is very common in children but almost unheard of in adults.  The drs. felt that I could possibly have annular pancreas after doing an MRI and scheduled an exploratory surgery that would take care of whatever was going on.  I don’t have annular pancreas.  I have pyloric stenosis and no cause for it.  The first surgeon I talked to said no to surgery unless I had gone to Boston or New York to have studies done on me because I am so rare, and yet the surgeon at the same hospital went ahead and did it anyway.  I had a pyloroplasty and the side effects are dumping syndrome and I guess sometimes anemia.  The procedure could have been done laparoscopically but because they had intended it to be annular pancreas they cut me from under my rib cage to below my belly button.  I don’t mind the scar although it upsets me that further tests were not done to know for sure and lessen the area affected with scars.  I don’t have the burps but I still have an awful taste in my mouth from something that is unexplanable.  I was also told in passing that they detected H-Pylori in me at one time or another but all biopsies were negative for Crohnes and cancer. It’s been two weeks since the surgery and I’m on an emotional roller coaster. I’m angry that I have something this rare that no one knows what to do I feel like I’m the experimental patient and honestly that’s what I am. I don’t really know what I am trying to get out of this post but I guess at this point anything will help.