Tag Archives: medical research

Can Pyloric Stenosis come with long-term effects?

Ask your General Practice doctor or a pediatric surgeon about the long-term effects of infant pyloric stenosis (“PS”) and you will almost certainly be told there are none.

However, the volume of questions, complaints, and feedback to online social forum sites such as BabyCenter/Centre, Facebook, MedHelp, Patient, and Topix is a clear sign that the answer to this question is not quite as clear and simple!

The issue of possible long-term gastro-intestinal (“GI”) and other complaints after PS is in fact a complex subject.  The social forum interest mentioned above shows that there is a short list of long-term effects that those affected suspect may not be unrelated to having had infant PS and/or the surgery to remedy it.

However, many of these complaints are hard for medical science to study and possibly recognise, and therefore for your doctor to treat.  So unfortunately for us, many busy doctors will brush off patients’ attempt at consultation about them as a waste of their time; others will recognise the problem but can usually offer little more than sympathy!

Besides this, GI problems in general (apart from PS) are the most common complaint we take to the doctor, so unravelling their cause and getting effective treatment is a painstaking business! In fact, a small but significant percentage of GI complaints have no verifiable cause at all – and even have a name: “Functional Abdominal Pain Syndrome”.

So… what is beyond doubt?

All surgery (even today) comes with short and long-term hazards, which are acceptable if a life is at stake.  These hazards have been minimised and some virtually eliminated in recent decades – but several remain.  The list of possible immediate and short-term hazards includes anesthetic complications, an unsuccessful procedure (so repeat surgery), wound disruption, and infection.

Those that can arise in the long(er) term include surgical adhesions, collateral damage (usually to the duodenum, stomach or vagus nerve), and emotional issues ranging from scar shame and emetophobia to pre-verbal trauma or mild PTSD.

If the baby has been significantly starved for any reason (usually poor and delayed diagnosis) there may be lifelong effects on several areas of brain function.  Emotional damage can also result from (as happened quite often in the past) the baby’s surgery being done with inadequate pain control, accompanied by significant maternal separation, or by the parents’ trauma resulting from the PS and surgery in any way being conveyed to the infant or to the growing child.

Then there is a short list of GI issues, which are common (also) among people without PS and PS surgery in their early history.  However, these problems seem to be experienced more often by survivors, and are acknowledged as possibly linked by some medical professionals and by several (mostly small) studies.  The theory that high gastrin levels (a blood hormone that controls gastric acid release in the stomach) causes PS in babies is one of the most obvious and plausible among the causes / etiology of IHPS, and this theory links strongly to GI problems in later life. It would also explain why GI problems can arise directly from the subject’s history of PS (the condition), and not the surgery.

The list of long-term GI complaints common among PS survivors includes reflux (or GERD or heartburn), several other GI development faults of infancy, high acidity causing IBS, and sometimes gastric dumping, ulcers and cancer.

There have been more than a few small studies reporting all this, and a few social forum reports of medical professionals who recognise the linkage from their own research and experience.

It may come as a surprise that so little is known (or recognised) about the possible long-term medical issues after PS.  It is because PS is so easily and usually successfully dealt with, and I suspect because the long-term problems are not life-threatening, that there have been no large studies of this subject area.  Besides, there are many more pressing medical challenges that need research time and funds.

The only large study that has stood out showed that the risk of PS is very much raised by mother or newborn using any of the macrolide family of antibiotics – which also relates to gastrin levels!

Despite all this, there has been at least one recent attempt to set up a sizable and robust study of the subject – which the PS community awaits with great interest!

In the meantime it must be realised that the medical community continues to submit to the surgeons’ love affair with PS and repeat the med school mantra that there are no long-term issues to keep in mind in relation to PS.

You can find all the above information on the web. If you need or want my evidence of the above, you’re invited to message me with your email address. I have a list of some 1700 reports and other material which can be accessed via the web.

Pyloric Stenosis’ Game-changer

The German Dr Conrad Ramstedt’s surgical remedy for infant pyloric stenosis was announced to the world at a medical conference and publication in 1912.

This event hardly affected the great majority of the human race, but it was of course rather significant for someone who underwent that surgery 33 years later to save his life just 10 days after his mother gave him birth.  And because pyloric stenosis (“PS”) affects between 3 and 5 babies in every thousand born in developed countries, and most of these are treated surgically, there are many people alive today because of Ramstedt’s discovery.

However, one only has to research the history of this condition and its treatment to realise that whilst the German doctor realised he had made a significant discovery, he was also the unwitting cause of trauma in at least some and perhaps many PS babies and their parents.  Let me explain…

In 1912, the medical treatment of PS babies was the rule but very risky, and almost half the infants died despite it.  Several surgical techniques were then being offered as an alternative for PS babies, but these were so drastic and severe on a tiny, malnourished and dehydrated baby that the great majority died of surgical shock, infection, and other related causes.  Most parents took their chances with the available medicines… and prayed.

RamstedtConrad operating

Dr Conrad Ramstedt operating

Dr Conrad Ramstedt’s accidental discovery in 1911 was published in October 1912 and represented a major breakthrough: see this post and this one.  The Ramstedt pyloromyotomy was rapidly adopted as the remedy of choice in most developed countries around the world, and in four decades after 1912, deaths from PS fell to almost nil in most countries.  However, even in the 1940s, some countries (including Great Britain) continued to report their PS mortality was still at 25%.  I have been shocked by how many mentions there are on the web of relatives dying of PS, even in the 1950s.  Despite all this, Ramstedt’s technique and better health standards in hospitals have done much to make death from PS most uncommon today.

How did the Ramstedt pyloromyotomy contribute to this?

Pic 13It made treating PS relatively easy and simple for surgeons, hospital staff, and parents. For surgeons the technique requires practice and care, but is essentially one of the simplest surgical procedures on the surgeries list.  The surgery usually ends the violent and deadly vomiting; although some continued vomiting and reflux occur quite often, it is fairly rare that an incomplete myotomy (division of the pyloric muscle) or the muscle’s redevelopment requires a repeat of the surgery.  So: anxious parents are greatly relieved, the surgeon immediately becomes a warrior-hero, and the baby quickly starts to make up for weight lost: I gather that my post-op photo is quite typical!

Apart from the great relief of all concerned, the Ramstedt pyloromyotomy saves pediatric ward staff and the bay’s parents from having to manage (or endure) weeks (and often two months) of medical treatment, with each of the sick baby’s feeds requiring medication be administered beforehand to a rigid schedule, milk having to be given slowly and carefully, daily weighing, and regular consultations with the hospital clinic or paediatrician.  Why put yourself through all that when surrendering your baby for just an hour or so to the gowned and skilled surgical staff produces what often seems like an instant fix?

Some babies are best treated surgically, and of the babies treated medically, up to 20% will not respond sufficiently well to avoid belated surgery.

Superman MD1On the other hand, almost all Ramstedt pyloromyotomies seem to be fully effective, certainly in the immediate sense.  And although the worldwide web includes many thousands of complaints and stories of a long list of troublesome ongoing effects from their PS or its surgery, it is just as clear that the vast majority of survivors and their parents are satisfied enough not to air their troubles.  The possible effects of the surgery are many and real, and sometimes severe, but many PS survivors report little or no gastric or abdominal discomfort, few or no problems with their scar or adhesions, and no trauma.  And this silence of the vast majority of PS patients has enabled most of the medical world to assure anxious and worried parents that “PS and its surgery will have no after-effects on your dear child”.

What I have written so far gives me some cause for concern, however.

Ramstedt’s discovery at once saved my life (and I’ve had more than 70 very good years so far), and it has also been responsible for the trauma I and not a few others have had to deal with (often chiefly in private) for most of our lives.

It was quite unintentional, but it is nevertheless true that Ramstedt’s surgical solution for PS effectively and inexorably moved the medical community’s interest away from perfecting the already (and still today) quite effective treatment of PS with cheap and simple medication and careful maternal nursing.  The Ramstedt pyloromyotomy is (as stated above) in itself what many surgeons call “elegant”: it is easy, quick and usually effective.  But until quite recently the surgery and what came with it could be very severe and traumatic on the baby and also on the parents, and it was associated with more (and more severe) risk factors than the medical alternative.

Thus the Ramstedt pyloromyotomy helped fuel the ascendancy of the power and prestige of the surgeon with which some of us are all too familiar today!  We must remember that specialist and high technology medical science has been very largely responsible for our rising health standards and life expectancies, but in fact PS is one of the maladies that can in most cases be brought under control by medical means and with surgery kept as a last resort.  In some developed countries, PS continues to be managed in this manner, and in many developing countries, medical treatment is far more affordable and widely available, and thus the first option.

So Ramstedt’s operation short-circuited interest in understanding and managing the causes, pathogenesis (biochemical development such as proposed by Dr Ian M Rogers) and even prevention of PS.

Whilst I am deeply grateful for the operation that saved my life and realise that in my case surgery may well have been the only responsible remedy, I have often wished that I could have been treated more gently, without a disfiguring scar, and without inflicting life-long trauma on my parents and me.

And in this wish I am not alone.

Three responses to infant surgery

Infant surgery does different things to different people.

This post introduces readers to three men whose infant surgery recently prompted them to go public, each in his own way.

yay1Dave Outred went online to express his joy and gratitude for his full and satisfying life, apparently unaffected by the rather messy start to life he had.  After developing pyloric stenosis (“PS”), he was operated on twice in a London hospital in 1955 to remedy this rather common condition when he was about 6 weeks old: when it became clear that the first “procedure” had not dealt with his stomach blockage, it was repeated a day or two later, leaving him with two rather large and untidy scars.

But, he wrote on Facebook (to a “closed” Group) –

I say, be proud of your scars because you are a survivor!  I have had a great life: played sports for my town as a school boy, enjoyed camping and an outdoor life with the scouts, been married twice [currently 31 years], followed my football [soccer] team through good years and bad, semi-retired at 48 after many years of working 6 and 7 day weeks.  Lots of friends and a full life.  Recovery from P.S. is the start of a life you may never have had.

ButchBee02aJay Jacobs’ infant surgery was to deal with volvulus, a twisting of the bowels that like PS blocks the passage of food but can also quickly cut off the blood supply, causing gangrene and death of the affected intestines.  Perhaps because he was not expected to live, perhaps because cosmetic concerns rated rather lowly in 1957, perhaps because of his earlier weight problem, he has also been left with a very large and sunken scar.

Jay Jacobs found it harder than Dave Outred to feel accepting and confident about his disfiguring scar and count his blessings… until he found his niche.  Jay Jacobs always had a weight problem but in his later adult years he succeeded in beating this: he found diets and fitness programs that worked for him, participated in the Biggest Loser program on TV, and developed and promoted his discoveries, weight-loss and new-found wellness to become a successful entrepreneur!

Quite likely because of his accomplishments, he was also persuaded to rise above his negativity about his abdominal scar.  He appeared “topless” on TV and online, and wrote about his former “shame” and new-found confidence about his torso and story.

In mid-2019 the national free-to-air TV broadcaster in Australia aired a short video created by Alexander, a young man who was born with mild pectus excavatum, a “pigeon chest”. He was troubled in his adolescence by being singled out for comment, sometimes cruel, but also reports that growing up he was determined and able to rise above this, helped by his parents and closer friends, so that he can now accept his body as different but “OK”.

Henry Fox like Dave Outred also had PS and early surgery to remedy it.

Genes baby1It left him with a lifelong passion for the importance of medical research.  Many PSers realise that up to about a century ago, the diagnosis of infant PS was almost always a death sentence: the surgical remedies then on offer were so crude and horrific and so rarely successful that most parents preferred to see their little one simply expire.

Henry Fox knew this and also that there are still many conditions of infancy that although less common than PS need research funds and workers.  He wrote –

Owing to the type of research now carried out by Action Medical Research, I was able to undergo a small operation to rectify this and am now able to make the most of my ability to digest properly…!
Since then, Action Medical Research together with its most famous sponsor, Paddington Bear, have stayed very close to my heart.  I spent several days as a young child attending Action Medical Research’s Paddington Bear tea parties, over-indulging in a fair few marmalade sandwiches to help raise funds for their life-saving research!!  This association has stayed with me and it is rumoured that (aged 27) I may still possess a Paddington Bear duvet cover.

 Henry is seeking sponsorship for his running in the 2016 London Marathon (24 miles or 40 km on 24 April) to raise funds for medical research.

Nerdy MD2For many years now I have been reading and writing about the many issues around infant PS, and seeking greater recognition of the turbulence that affects a fair number of those affected by this rather common ailment.

I have been intrigued by the unity among parents affected by PS: those who write report as one that it was their most traumatic experience ever – and that all too often it left them feeling cheated in one way or another.

On the other hand, those who themselves have had PS respond and reflect on it in many different ways, and the reports above are typical but only samples of many very different responses.

Networking after pyloric stenosis (5): Gastric grief

This post is the 5th of a series started before I took a 3 month pause while my wife and I travelled overseas.  We had a wonderful time of reconnecting with family and friends, explored scenically beautiful and historically significant town and cities as well as Christian congregations and cathedrals, richly endowed museums and art galleries, and in the process my awareness and understanding of my “roots” was deepened, something I plan to post about on my other blog, Fred’s Pages (which has had a longer recess).


112This post again presents some of the comments made on Facebook by people who started life with infant pyloric stenosis (“PS”): this time we listen to some of the people who were left with any number of frustrating eating and gastric problems.  If the line-up of people reporting here is too long, feel free to listen to just the first and last few: the stories are awfully and tellingly similar.

Many of these people report (1) these problems as being totally mysterious to them, and (2) that consulting with their doctor did not benefit them with any light or help.  Typical also of their comments: it was when they found online forums like the several PS support groups on Facebook that they realised that many other PS survivors were living with similar gastric “issues” – which prompted them to wonder if their mysterious and annoying troubles were in fact a long-term effect of the condition and / or surgery they had had early in their life.

AA (born in) 1966
I had mine [my operation to remedy PS] in 1966 (I’m 48) and have a two inch horizontal scar… I’m suffering hugely now though from digestive issues (GERD etc) and every year undergo a battery of tests to find what’s causing the issue…  I am wondering if there’s a connection with PS.  No consultant I’ve seen or asked seems to be aware of one.  My scar does hurt/pull when I exercise vigorously but not in a way that it would stop me.

SA 1952
I had PS at 3 days old.  I am now 58 and experiencing weight loss, horrible gas, indigestion.  Dr. has no idea why.  I have to wonder if it can be attributed to my PS.

KB 1987
When I was pregnant my scar would feel like it was splitting open – it was awful.  As for now I have indigestion, acid reflux and struggle to lose weight, it can’t just be a coincidence that so many others have experienced the same thing after this surgery.

LB (year of birth unknown)
…I have always had sensitive stomach issues throughout my life but when I was drinking a few weeks back I got issues with my gallbladder and was also told I may have a bit of IBS so it might be something you’ re eating or drinking that’s flaring it up.  I recovered with some meds to reduce acid and that helped.

DCS 1973
113Growing up I have always suffered with acid reflux and have a bad attitude to food.  I cannot lose weight, suffer with bad breath and over-salivating… the more I talk to people, the more I am thinking my problems are from my ops… [but] the medical sites say there are no long term effects.  To me, it inconceivable that an op on the digestive tract doesn’t then have some long-term effect… In these last few weeks I’ve discovered that I’ve been suffering side-effects all my life: food issues, acid reflux, leading to weight issues… I’ve always assumed it’s just the way I am, but reading other people’s blogs there is a noticeable link between having had PS as a baby and now having weight and digestive tract issues.

HC (re: her PS-affected children born in 2001 & 2003)
My daughter has been pretty much poorly from birth with gastro problems, she had surgery to correct a floppy larynx caused by acid reflux at 8, although she was born with that.  She suffers stomach pain regularly often ending with vomiting.  My son seems to be getting worse as he gets older, severe stomach cramps, always around his scar and he is always violently sick after the pain, usually in the middle of the night.  We have had loads of diagnosis from ibs to bowel disease, the most recent being a dairy allergy; call it mother’s intuition but I can’t help but think it’s all PS related.

HCT 1980
I can’t eat what I like, I need to lose a lot of weight which has piled on over the years.  21/5/14
I have always had bad acid reflux since I can remember, I also have to be careful with certain foods as my stomach rejects them and I’m in agony: eggs, mayo, a lot of dairy.  Eggs is horrendous but I love them, I do have ibs from a young age but I don’t think it’s related to ps as I got ps when I was born and ibs at about 13.

IC 1967
I’ve had reflux since a child… getting worse as i get older… omeprazole and peptac help a little…

KD 1950
Have over the past 2 years had a lot of probs with partial small bowel obstructions that are apparently caused by adhesions very probably from my PS surgery all those years ago.  I am also lactose intolerant and have IBS, and often have pains at the top of my scar!  Apart from that all is good, lol.

TE 1980
I had PS and have IBS, my son also had PS, he has trouble with his bowels (even worse than me), doctors say he’s too young to be diagnosed with IBS.  They also told me PS doesn’t cause stomach problems, but I’m sure there must be a connection.  We are the only two in family who had PS and have bowel trouble.

SH 1965
I have always had what I call intestinal distress and wonder if that is common.  The only other complication I have had is 5 years ago when I had emergency gall bladder surgery.  I had so much scar tissue that my gall bladder, bile ducts, etc. were basically cemented together which made the surgery last much longer than anticipated.

EK (year of birth unknown)
I needed to change my diet to stop the stomach aches and acid reflux issues.  My mom helped me figure out what I needed to change in my diet.  I rarely eat onions, garlic, intense peppers, greasy foods, raw cauliflower, beef (I can do pork fine), and some dairy products.  Prilosec seems to help the best when I have indigestion but if I eat something (raw or cooked) with a lot of onions/garlic, it could take 2-4 days for me to recover.

EM 1974
My wife is always concerned at how often I throw up, it’s hard to explain, it’s not the same as when you have the flu.  I can go out to eat and gave a salad, steak and potato and go to the bathroom and get sick and it will be just the salad dressing or just the steak, and it’s [the vomiting is] very powerful like I would imagine PS projectile would be.  The way I found this information was 2 days ago: my wife and I were out, we stopped and grabbed a couple of hot dogs for dinner, it was around 7:00 pm and I woke up around 6, went to the restroom went back to bed, then got up at 9:00, ran to the bathroom and got sick. …I’m sorry for being gross but when I got sick it was intact dinner, to me that is not normal, I get sick often.

PM 1969
Now, almost 45 years later, I am having some tenderness at the surgery site and acid issues.  Wondering about scar tissue?  Just had an endoscopy to try and figure things out.

HP c.1990
Interested to hear about not knowing when you’re full.  I’ve often wondered if my problems with that were related to PS.

JP 1978
Is it common for us to get GERD later in life?  It would make sense if the opening was bigger and letting more acid up.  I’ve had GERD for about 10 years now.

VP 1984
111Had the op at a few weeks old, just turned 30 and been having terrible stomach issues like colic.  Not acid but reflux straight after food.  Always feel stuffed to bursting when I eat.  My relationship with food / weight management has suffered all my life to control.  Finally controlling weight and stomach pains commence at this old age – lol.  Just had gastroscopy and ultrasounds but I’m apparently all well.  No issues.  Just been given anti sickness tablets to try.  Next step.  Used to be able eat 3 courses, then pain.  Now I can’t manage one course at a restaurant [without] pain.  Think I’m gonna be put in the IBS category even though the pain is high up under ribs and in my stomach, not the bowel.

HPS (year of birth unknown)
I’ve also found that I don’t ever feel full.  On holidays and at buffets, I just find that the food stops going down at some point and my stomach stretches to a painful point.  However, I also have trouble figuring out if I am hungry.  If I don’t eat on somewhat of a schedule, I just hit a point when I get a very bad headache or shaky hands, and then I know it’s time to find something, fast.  My parents say that I have been the same way ever since I had my surgery for PS, so I wouldn’t be surprised if they are related.

ARB 1992
I’m 21 now and I have a hard time bouncing back [after a stomach bug attack].  Leaves me weak for weeks… sometimes months.  My doctor says it’s because my stomach went [through] such a major change when I was a baby.

LS 1988
I get a lot of odd tummy issues, weird noises, acid reflux pain around my scar among other things.  Never really linked them until I joined the [Facebook] group and noticed others have experienced the same too.

CT 1985
I had pyloric stenosis and I had coeliac as a child and now I suffer from stomach pains, bloating and constipation. x  I’m sure it’s all linked.

HT 1993
When I burp, I still throw up a little.  Is that just a long term side effect?

kid stomach pain3CV (year of birth unknown)
I had pyloric stenosis as an infant and for as long as I can remember I’ve had a sensitive stomach.  I have started to wonder if there a tie between the pyloric stenosis/surgery and the frequent yet mild nausea.

DW 1962
I am 52 now, I have never been able to put weight on, wished I could.  I still suffer today, not with vomiting but bloating, bowel pain, excessive wind from both ends and acid indigestion.

Once again I cannot help noticing that –

  • the stories are very similar;
  • the medical world is not interested in diagnosis, research, or remedies;
  • it very much seems (at least to those most affected) that the long-term effects of PS and the Ramstedt operation for it are far from well-understood and acknowledged.

This series of posts has been based on Facebook common interest sites and bears out that the medical alternative to treating PS surgically should be considered in almost every case – as used to be the case in the UK and Europe in the 1920s and 1930s and as it still is today in several developed countries.

The medical treatment option like surgery is not always trouble-free, but it may well avoid most if not all the serious complaints and problems which fill the hundreds of PS pages of the web’s forum sites.