Tag Archives: treatment options

Pyloric stenosis can be for adults too

Infant pyloric stenosis (“PS”) is not well-known in the general community.  Many of those who have been affected by it had never heard of it before.  But today far, far fewer people know anything about the adult form of PS.  As I will explain below, this is (in large part) a measure of the tremendous progress that medical science has been made in this area.

The stories of adult PSers vary even more than those about the infant form of the condition.  Some may find that hard to believe but it’s true!

When did problems start?
What happened?
What did the doctor say and do?
Did it work?
What happened then?
What choices did you face?
How are you doing now?

Think about it:  for adults there are many more variables than a baby might have: diet, wellness, lifestyle, age and stage of life…

However, the basic cause of all PS seems to be the same: high gastric acidity.  And one of the symptoms is usually the same: vomiting that is often severe and possibly (especially in infants) life-threatening.  But unlike babies with PS, adults usually find that with the loss of weight and wellness come pain, bloating, food intolerances, and reflux.  These are usually not a problem for the hungry but (at first) happy infant PS spitter.

In the infant disease, the high gastric acid level over-stimulates the pylorus (the circular muscle valve at the stomach’s exit), causing it to thicken, toughen and choke the muscle’s ability to relax and pass food.

Adult PS is also caused by high acidity, and often also by a virus, Helicobacter pylori, which has the nasty habit of stimulating acid secretion.  The acid erodes the stomach lining and creates conditions which enable the virus to trigger the eruption of gastric ulcers, which then scar as they heal, so thickening the walls of the stomach and pylorus, ultimately narrowing and blocking the stomach outlet.  If left untreated these ulcers can also give rise to stomach cancer.

These differences do not affect the name of the condition: “pyloric stenosis” means a “narrowing” of the pylorus (which means “gate”).  The term “hypertrophic” means “enlargement” and is only used of the infant form.  The effect of PS, whether in its infant or adult form, is also the same: the narrowing of the stomach’s exit ring muscle, causing vomiting and a reduction of food throughput, and thus starvation.

The difference in the development of the two forms of PS explains why the relatively simple “fixes” for infant PS (medication or surgery to relax the pyloric ring) do not relieve the adult form.  The PS baby’s problem is the thickening of the pyloric passage’s muscular outer layers, whereas the adult’s scarring, narrowing and blockage occur inside the pylorus or at the antrum, the tapered (narrowing) part of the stomach closest to the pylorus.

Adult PSers suffer from a range of symptoms including vomiting, reflux, pain, lack of appetite, and inability to maintain body weight.  The adult patients’ general practice doctors and GI specialists will try various treatments, starting with drugs to kill the virus infection and reduce acidity, and then relaxant medication and repeated stretching (“dilation”) to widen the pylorus.  Dilation is often repeated several times but is hardly ever successful as a long-term remedy. Sooner or later the patient usually decides to continue to one or more of a short list of surgical remedies, all of which are more severe and often less effective than the rather simple pyloromyotomy which is the usual surgery of choice for infants.

Pyloromyotomy

The simplest surgical remedy is pyloroplasty, a technique that was modified to become the pyloromyotomy which has usually remedied infant PS since Ramstedt’s accidental discovery in 1912.  Ramstedt discovered that it was not necessary to stitch the cut pylorus after he’d split it to relieve the enlarged muscle. He left the gaping pylorus wound to heal by itself in time.

[Select an image to enlarge it if you wish.]

Pyloroplasty

Pyloroplasty

But very sometimes the infant pylorus will not stay open for various reasons, and then a surgeon may return to the pyloroplasty: here the pylorus is split down to the mucosa or inner lining lengthwise (as in a pyloromyotomy); in a pyloroplasty the split muscle is then stitched closed across the pylorus, thus forcing it to stay open.  But because the adult pylorus is often scarred (thickened and hardened) by ulceration, it is often not in a fit condition to be modified.

Gastroenterostomy

The second option is commonly adopted: gastroenterostomy is a bypass of the pylorus by joining the duodenum to the stomach.  This removes the pyloric “gate” between the two which understandably has an effect on digestion.  Dietary changes and smaller, more frequent meals are necessary and often the “dumping syndrome” becomes part of daily living, as the body struggles to maintain a regular and appropriate source of energy.  Gastroparesis is a fairly common problem after gastric surgery: damage and interference cause the nerves and muscles of the region to stop working as they should.

So adult PS is more complex in its causes, symptoms, and available treatments.  And all these several treatment options are far from assured of success, as our gastric passage is easily unsettled and has a mind of its own: it is part of a complex network of different and linked organs and chemical input and processes.  Moreover, like any worker our abdominal organs can protest against being handled with less than good skill by working more slowly or sometimes a complete stop-work.  Medication and especially surgery can be quite successful or can result in unwanted and significant continuing physical side-effects.  Some “survivors” are pleased with the results of their choice, and others find they have to “adjust”, sometimes struggling to do so.

“Major adjustment” is thankfully something that is needed by only a very small minority of infant PS survivors.

Scared_DoctorDespite the dismissive words and comforting promises of pediatric surgeons, infant PSers also run a risk of a short list of abdominal and other complaints, some of them after their early surgery and then possibly also in later life.  Remember that the pyloromyotomy does not deal with the baby’s high gastric acidity.  One of the long-term risks is reflux and developing gastric ulcers – and as a result the adult form of PS.  Deja-vu!

But there’s also good news.  Today, thanks to effective and modern surgery, deaths from infant PS are almost nil.  And adults will find that with antibiotic treatment, H. pylori infection is usually quite easily dealt with, and so gastric ulcers and related surgery peaked in the 1970s and are now far less common.

Some personal observations are indicative despite being anecdotal rather than based on a careful study.  Adult gastric ulcers and PS used to be quite common but the only person I have ever known with it in 70+ years was one of my uncles – possibly a family linkage there?

Contrast this with the 8 or so infant PS patients and survivors I have known of or met.

The reader may discover similar figures!

Another measure is Facebook: following its PS Groups for 10 or so years I have logged 1,020 infant PS survivors but “just” 56 adults struggling with the condition of adulthood (several of tham after having survived infant PS).

The medical journal The Gut published an article in 2011 titled, The scars of time: the disappearance of surgery for pyloric stenosis – referring to the virtual disappearance of the adult form of PS, usually caused by peptic ulcer disease.

If medical science had made similar progress in reducing the incidence of infant PS, many parents and survivors would really party!

For readers who have stories or questions about adult (or infant) PS and its treatment and who use Facebook, I can recommend its “closed” Pyloric Stenosis Support Group which includes more than 50 members who have experienced and have posted (in great variety) about their adult form of PS.  (Any Facebook subscriber can find a “closed” Facebook Group, but it cannot be opened and read only by those who have joined that Group.)

At last! A book(let) about pyloric stenosis!

Child in library1When I started high school I also began to visit my school library.  I was hungry not so much for novels or books on cars or dinosaurs, but I had become desperate for any information I could find about pyloric stenosis (“PS”).  All I knew about PS at age 12 was that the discomforting scar down my belly was the result of being afflicted by this condition in the days after my birth.  Sadly, as often happened even in the best families in those times, my parents had stonewalled my questions.

At school I drew a blank.  So I started scanning bookshop shelves and used what I’d learnt about catalogues at high school to search the local library… and later the university and State libraries.  By this time I had found that Dr Spock’s compact medical encyclopedia (which was in many homes in the 1960s) had a brief but useful section on PS.  And I have mentioned in another post that one of the homes where I sometimes did some babysitting had a red-covered paperback on 30 or so of the most common surgeries – including a chapter about a PS baby.

I still have never found a whole book on infant PS.  Only in recent times have I gathered that if there are such books they are part of medical school libraries and inaccessible to the public.  I am grateful that there are many journal articles and medical reports on PS, and these (as well as the stories posted online by parents and survivors) have given me the kind of schooling I actually needed as I was growing up.

The above will explain why my wife, a few friends and I were more than excited when Dr Ian Rogers invited me last year to co-author a modest book that would present each of our PS stories.  Ian has worked on the causes of this condition for much of his professional life as a surgeon and professor of medicine, and has written several academic articles presenting and arguing what he has learnt.

His thesis (stated simply) is that the over-production of the hormone gastrin (due both to the baby’s constitution and its earliest development) sets up a process that stimulates the pylorus muscle to over-grow and ultimately block the passage of food.  He also shows that this process can usually be stopped with medication and without surgery.

Dr Ian has decided to add the book form to his articles about his work’s conclusions, and it means so much to me that after reading “My Story” on this blogsite (find it on the banner above here) he chose to include the thrust of this in his book.  The title reflects our combined interest: The consequence and cause of pyloric stenosis of infancy: two personal stories.

PS book coverThe book was published late in February, and Dr Ian added a note about it to my previous post (last week’s).

Interested readers can find more and order the book by clicking on the above link.  I do hope that some of our readers of this blog will decide to get a copy.  I had hoped that the book could be published in a way that makes it freely available to everyone interested, but because an academic publisher is needed to give the book its “wings” and because its main market will be the medical world, there is a €24 charge.  I will donate any royalties in full to a medical research body that works on improving our understanding of PS.

The book is richly illustrated, although sadly the colour of our illustrations and charts has been removed.  It is also indexed, includes references, and comes to a modest 80 pages, of which the first 20 are my story, edited with a view to the book’s intended readers.

Readers can look out for another post about Ian Rogers’ “message” in the book soon.

Pyloric stenosis – surgery or medical therapy? (1)

Several posts on this site have pointed out that doctors and surgeons form a powerful and often an overpowering elite.  And often this is not a problem: in many cases “doctor knows best”.

surgeonHowever, the worldwide web is peppered with angry and frustrated stories from the parents of an infant pyloric stenosis (“PS”) baby who were totally unable to get their family doctor or paediatrician to carefully diagnosis their baby’s problem – even when the family history and/or the symptoms made their little child’s condition very clear.  Often these parents will tell us they gave up on their doctor and went to the local hospital’s accident and emergency department, only to be told their baby was near death.  Such stories are numerous.

This is not good!

A somewhat similar power-problem is all too often evident when parents are told that their baby needs a pyloromyotomy, the standard surgery for PS.  It seems that the alternative to surgery, a course of medical treatment, is very rarely mentioned – and almost never recommended and followed.  Of the many stories which parents have posted about their experience with a PS baby I can only remember one that mentions being told about and using the alternative to surgery.

Altough medical websites do often mention the “medical alternative” to a pyloromyotomy, every information page I have seen still dismisses it.

What is the truth about these two ways of treating PS?

1946-01 FLVI have posted about why many surgeons have made the pyloromyotomy their favourite surgery: it is quick, uncomplicated in the hands of an experienced surgeon, requires only a few days in hospital nowadays, and is often immediately effective.  It’s not hard to imagine the satisfaction and kudos all this gives to a surgeon!  My parents must have loved a photo taken a few months after my op which shows me as a very flourishing bub!  This “over-compensation” seems to be very common: PS babies typically do very well once they can process their food!

Superman MD1There is a second reason why the pyloromyotomy is so strongly loved.  Medical developments have made surgery (in itself) minimally traumatic for a baby.  Pediatric anesthesia and pain relief are now quite standard and sophisticated compared with just 30 years ago.  Before the late 1980s many babies were given no or minimal pain relief, many in especially the US medical world passed on the fiction that “babies don’t feel or remember pain”, and surgery could leave infants and their parents deeply traumatised, some for life.

Besides this, improved surgical equipment and techniques have greatly reduced the scarring and disfiguring effects of surgery, so that many babies who need surgery now are left with scars that are relatively small despite their having grown with the years.  However, I fear that any scarring remains “uncomfortable” for a shy, self-conscious and introspective child or an image-conscious and introspective teenager.

The fact is that most PS surgery is avoidable.  So for me the question remains: why is the medical treatment option with the drug atropine so generally dismissed?

My recent research has uncovered several clues.

In recent months I have found and visited PS websites in the main European languages.  I thought it was interesting that –

  • there are many more such sites in non-English languages than in English; and
  • despite the “medical treatment” option being commonly and successfully used in many countries (incl. Denmark, Germany, India, Japan, Serbia, Taiwan and Turkey) in the earlier 20th century, and widely used throughout Europe and the English-speaking world at that time, most of the documents did not even mention an alternative to surgical treatment.  Almost all the documents seemed to assume that surgery is the only way to treat PS unless a case is so mild that a “watch and wait” strategy can be followed.

There were just two exceptions.  These documents gave data about the medical treatment option (using the muscle relaxant drug atropine sulphate) which I found representative of other reports I have read in recent years.

One was a Powerpoint presentation by the Italian Prof. Antonio Dessanti entitled, Hypertrofic Pyloric Stenosis: Pyloromiotomy versus Conservative Treatment [sic].  He oversaw 22 PS cases treated surgically and 15 by medication, 4 of which eventually needed surgery.  All cases were treated successfully and it was found that the pylorus returned to a normal size 2-3 months after the onset of symptoms.  There was no further comment on this.

Atropine01PLM Lap 53 CO2 off2A Pediatrics International report published online in June 2013 gave more detailed and what I also consider quite representative data.  It was based on a Japanese study of 397 infants treated surgically and 188 treated with atropine, 8 given orally and 180 intravenously, 38 of whom later went to surgery.  The success rate of atropine treatment alone was thus above 80%, and surgery was 100% effective despite almost 3% having severe complications.  The medical treatment needed 13.5 days in hospital and surgery 8 days.  There was no mention of deaths from either course: this again agrees with what I have read in many much earlier reports.

What did surprise me greatly was a recent undated and anonymous report entitled Spezielle Kinderchirurgie (Specialised Infant Surgery) reputed to come from the Surgery Clinic at Hamburg University in Germany.  It dismissed atropine (medical) treatment with the following statistics: it requires 40 days in hospital versus 3-5 for surgical cases, mortality was 5% compared with nil for pyloromyotomy babies, and morbidity (complications) were reported as 17% having atropine intoxication versus 5% for surgical patients (including mucosal perforations, infection, and other setbacks).  These figures would be enough to make any parent sign up for surgery – but they are not at all representative.  I have posted about how medical treatment can be followed on an out-patient basis and with minimal or no mortality and without undue other risks.

Question: why would a web-based document report such and disturbing and totally unrepresentative statistics?

The fourth source I found recently was a German forum site where parents of PS babies could discuss medical versus surgical treatment – and two advised against it.  This is the only such material I have ever come across, but it did give me reason to think!  Here are the comments (in translation), the first from Andrea –

Cedric had projectile vomiting, diagnosed when he was 4 weeks old.  It still annoys me today that we agreed to medical treatment; he still vomits, only sometimes but today even.  My doctor even believes it could be because he had atropine.  My youngest nephew had the operation – without any after-effects.

I would like Andrea to know that continued intermittent vomiting is quite common after PS, whichever way it is dealt with.  “Joey’s Mommy” responded to Andrea –

I can tell you that from all I have experienced with PS I would also prefer surgery for my child to the medical treatment.  The atropine treatment is lengthy, nerve-wracking and often not really effective.  Despite the risks associated with surgery I would choose this course.

I must recognize however, that the number of infants I have experienced having this problem is too small to be really representative.  There would certainly be families who have done well in the long run with medical treatment.  Despite this I feel confirmed in my impression by your portrayal.

My comment on these two posts?  Neither seems well-informed and thus they are unconvincing.

Heredity & environment02The benefits and difficulties that can follow from both surgery and medication to remedy PS are very real from what we can learn.  In the light of the above, I now understand somewhat better the complexity of some medical choices, but none of what I have read and passed on here has been at all conclusive for me. The whole subject should be more thoroughly (and honestly) researched by the medical professions.  And the choices should be more openly and fairly raised, explained and discussed.

Do you agree?  If you were the parent of a baby dying with PS, what would you ask, choose and why?

Infant surgery without anesthesia (3): choices have had consequences

The previous two posts have explained the three ways in which surgery has been done on babies during the past century.  In brief, babies were worked on using general or local anesthesia – and also using no pain control at all.

The effect of infant surgery without any anesthesia on those patients in later life can be severe, lifelong, and even life threatening: the evidence of this is all over this blogsite – by way of readers’ Comments and links to academic reports.

The work and report of Drs K J S Anand and P R Hickey (1987) were crucial in making this terrible practice and resultant damage abundantly clear.  These men’s findings started a major (and still continuing) change in public attitudes to infant surgery without anesthesia, ranging from circumcisions to cardio-thoracic procedures.

The medical professions concerned have also changed their policies and attitudes, sometimes (it seems) under duress.  The available literature suggests that the practice of pediatric surgery in the USA may have been at the forefront and most influential in promoting the convenient and wishful fantasy that “babies do not feel or remember pain”.

How much have practices around infant “procedures” and surgery actually changed?

As stated, here has been significant change at the formal, official level.  Online we can find many reports and postings reflecting hospitals and associations of anesthetic and pediatric specialists that have revised their protocols, policies and (one hopes) their procedures.

Old Doctor1However, also online are far too many mentions of the old attitudes and ways continuing.  It may be that it’s only the “dinosaurs” of the medical profession who are guilty of this: doctors well past retirement age, unwilling or unable to update their methods, but in blind love with their life’s work and/or buoyed up by naively grateful patients.  I have heard and read too many stories about such people.
(I write this as one who during my professional life strove to keep my work “state of the art”, and then “moved aside” on my 65th birthday because I believed my work responsibilities required this.)

It seems also that many of the surgeons persisting with outdated practices are being “sheltered” by small local hospitals – of which there are many.  There can be a clear co-dependency among those interested in their financial and professional well-being rather than referring their youngest patients to more expert and specialist centres.

This blog is dedicated to informing, networking and reassuring those patients and parents who have been troubled by infant surgery.  My own experience with the effects of a 1945 pyloric stenosis operation (which was a lifesaver, but…) has motivated me to compare notes with others who have experienced something quite or exactly similar to what I have.

Below are some of the quite recent and deeply troubling comments about the present practice of infant surgery which I have gleaned from the web.  Read them and judge for yourself.

Hospital small1Dr Rae Brown wrote 21 August 2009 –
The surgical treatment of patients with pyloric stenosis is straight forward; the anesthetic management is not.  Infants still die in the United States because of attempts to manage cases in medical centers that have little to no experience with newborns.  This is usually because a surgeon feels that they can take care of a child but doesn’t consider the other health care professionals involved in the babies management.  This case should only be done in centers that have substantial experience with babies and especially anesthesiologists that take care of infants as a regular part of their practice.

Dr Jeffrey T Jung wrote in December 2010 –
Many hospitals still do circumcisions without local anesthesia, instead tying down the baby’s limbs and cutting with a scissors — or worse, strangulating off the offending tissue with a piece of string (ouch!).  Babies needing surgery for pyloric stenosis are often intubated ‘awake’ – which anyone who understands intubation knows is not a pleasant experience.  Until a couple of decades ago, babies underwent surgery on the heart–including splitting the sternum or breaking ribs – with only a paralyzing agent, for fear that babies wouldn’t tolerate narcotics or anesthesia.

A 1988 report on infant PS operations in the UK stated –
One patient underwent operation under local anaesthesia for religious reasons, but the remainder had general anaesthesia with endotracheal intubation.
Infants were extubated when fully awake.  Opiate analgesics were not prescribed because infants of less than 46 weeks’ gestational age (full term plus six weeks) have an appreciable risk of postoperative apnoea…
A modification of Robertson’s gridiron incision was used in all but the infant having the operation under local anaesthesia.

Finally, a note to the parents of babies who need surgery.

baby trusting1Often the surgery that is advised is life-saving – but not always.  Most pyloric stenosis (“PS”) operations today are done competently – but they may also be unnecessary.  Check the “Categories” box to the right if you’d like to know more about the alternative medical treatment.

But whatever you decide, consider your baby’s future emotional wellbeing by informing yourself of the options – and the possibility of your own child being treated without general anesthesia.