Infant pyloric stenosis – and its possible long-term effects

For several years since 2010 I posted weekly about infant pyloric stenosis (“PS”) and since then I have been writing updates and the occasional new post.

I am so grateful to the readers who have written in with something of their story, Others have given me the valued feedback that they appreciate my solid research and lucid and careful writing.

WordPress (which hosts this blogsite) also gives me feedback, and it’s not surprising that the top number of searches here have been for information about the long-term effects of PS and the surgery for it – about 15% of nearly 200,000!  Using the Search box (top right on this page) will allow you to read all my blogs on this subject.

But here is an overview of this material…

The long-term effects of severe PS

Studies have shown that the severe malnutrition of a baby (which is far too common before PS is diagnosed and treated) can affect his or her memory and the development of the child’s motor skills and coordination.  A link with autism and similar conditions has also been demonstrated.

Remember that these long-term effects must be coupled with the condition rather than its treatment.

Long-term effects of PS treated medically only

One of the facts about PS is a well-kept secret in the English-speaking world!

Some 80 – 90 % of babies with infant pyloric stenosis can be successfully treated without surgery, as has been proved by many trials and reports over many years in several European, North American and Asian countries.  It takes several weeks of careful feeding together with medication to reduce the enlargement of the pyloric muscle.  A 2005 Indian report concludes:

Home treatment with oral atropine appears to be a simple, effective, cheap and more acceptable treatment of IHPS… Treatment cost with oral atropine is almost negligible in comparison to IV treatment and surgical correction.

Newborns and small babies are normally considered too frail to risk medical treatment, as it may take up to a week to show whether or not it will be effective. In addition, 10 – 20% of babies who are put on medical therapy will need to have surgery after all.

I have not been able to find medical reports on the long-term outcome for PS babies who were treated medically.  This probably indicates that this choice of treatment has no significant unfavourable results.  Anecdotally, I have known several people who had PS as babies but escaped surgery – without any negative consequences of which I am aware.

However, there are also several personal accounts (such as this anonymous one) of people who seem to have had mild PS in infancy, grew up battling increasing PS-type problems, and consequently needed surgery in their adult life that was far more severe than an infant pyloromyotomy.

From everything I have read, it may not be easy for most “Western” parents of PS infants to find a paediatrician who will support them in choosing medical treatment as their first option. The “Western” medical world (esp. in English speaking countries) is “rusted on” to surgery in all but the mildest PS cases: the training, work-skills, professional control, medical protocols, and understandable fear of (1) stepping out of line and (2) the ever-present risk of complications and legal action – these all stack up against what is quite safe and routine in many other countries.

If successful, parents of a PS seeking medical treatment will need to remember (1) that there is a fairly small chance their baby will still need surgery and (2) that their choice will not affect the safety and recovery of their baby.  Most cases treated with medication will result in the parents and baby avoiding the trauma of surgery – and also the fairly high chance that their baby will have to deal with any of a list of short- and long-term complications.

Long-term effects of PS treated surgically

As I have pointed out above and in other posts, surgeons in most developed countries like to push the parents of a PS baby towards surgery.  The procedure today is quickly done, not difficult for experienced hands, and its immediate results are usually excellent: the usual result is much relieved and very thankful parents who will sing the doctor’s praises!

The short-term risks of PS surgery will be routinely listed at the parents’ consultation with the surgeon: complications with the anesthetic (very rare), complications with wound healing, infection and herniation of the wound or scar (more common but less than 10% in most hospitals), an acccidental breach of the pyloric inner lining (fairly common but usually dealt with immediately), an inadequate pyloromyotomy with the return of forceful vomiting and requiring repeat surgery or alternatives (1-5%), short-term vomiting (very common) and long-term reflux and other feeding challenges (treated medically or batted away as “unrelated”).

Many medical journal articles have acknowledged a raft of long-term symptoms that also seem to be linked with PS surgery.  Some articles report on specific studies of these symptoms: I have sometimes been bemused by a report which lists many clearly related symptoms and then declares that these do not constitute “significance”.  I think that would only be true for the doctors who repeat what is taught in med school: that PS has no after-effects.

Adhesions seem to be the least disputed and most common long-term risks associated with PS surgery – and any abdominal “procedure”.  So much so that there are organisations and extensive websites like for the many who suffer with post-operative adhesions.  A significant part of the emails and feedback I have received in response to my posts have concerned this problem.  The good news is that although almost all surgery (especially to the abdomen) results in adhesions, the large majority of patients (including yours truly) do not find these to be a great problem. But the simple facts (common to many PS survivors) that my PS scar is sunken (and so more disfiguring) and that as a schoolboy I was easily winded in a stoush are both probably caused by adhesions.

Somewhat more seriously, adhesions can cause problems for dancers, models and bodybuilders, and still more seriously for not a few, chronic nagging or stabbing pain, organ dysfunction, and blockages in the abdomen.  Many women have reported significant discomfort or pain during pregnancy as it affects their scar or adhesions. While none of these long-term effect of PS surgery are deadly they can certainly have some very unpleasant and even restrictive effects.

Many of us who have had PS surgery have what we might in general term “a weak stomach”.  There might be continuing problems like GERD or reflux, involving the stomach and esophagus.  IBS or extreme sensitivity to certain foods (often those high in acid) is also a common complaint.  Gagging, frequent nausea or vomiting, sometimes several times a day or at the slightest provocation – even from tickling) is another group of symptoms fairly clearly linked with the pylorus.

Other abdominal problems commonly mentioned in posts and on forums include overeating and obesity, hunger and a fast metabolism, scar and stomach sensitivity and pain, abdominal muscle spasms, and occasionally the troubling “dumping syndrome” and/or gastroparesis.  Some of these seem more likely connected with our inherited build and metabolism, but others clearly not so.  Some sufferers have conjectured with some plausibility that their poor dietary practices could be due to their “on-off” switch for both hungry and full having been tampered with!

The final group of long-term effects relate to psychology and the emotions, and as these have also been dealt with in other posts we will mention them only briefly now.

It has been demonstrated that the body can recollect pain and separation from the time before our brain started to remember experiences: we call this our somatic (bdy) or pre-verbal memory.  This has affected people who had early surgery involving less than general anesthesia and also a lengthy separation from their mother, both of which were widely acceptable medical standards until the later 20th century.  While many sense no effects from what they experienced, others can link life-disrupting emotional and physical problems with the recognised signs of PTSD.

Today we can be grateful that the medical sciences have made great progress during the past century and more.  At the same time, it must be recognised that those of today’s older generations who had early surgery may have been left with after-effects that are only now being recognised and better understood and managed.

Perhaps because I am a fairly sensitive soul, perhaps because of the severity of what I experienced, I have a painful although fairly private chapter in my life which I have been “re-reading and editing” in recent years.  I have been much helped by the ready availability of medical and psychological information which has only come to light in recent years, and by the support of others who are travelling on on the same pathway.  This is why I keep saying: Thank God for the internet!

  • Note: Some readers will be interested to read Alison Cormack’s Comment below posted on 27 July 2016 about her son’s stomach cancer in young adulthood after infant PS.
  • An exhaustive post listing the known and possible long-term effects of infant PS (the condition) and its surgical repair may be found here.

85 thoughts on “Infant pyloric stenosis – and its possible long-term effects

  1. Wendy

    Another fabulous post! Thank you. Is it possible to get a free copy of the article “Early developmental outcome of infants with infantile hypertrophic pyloric stenosis”? Another thing. You state that “many sense no effects from what they have experienced,” but new findings in brain research suggest that some of these folks may have a “blockage in narrative integration.” I have been reading Dr. Daniel Siegel’s book Mindsight. Siegel is a researcher at the University of California, Los Angeles and a therapist. The research is too complicated to explain well in a comment, but he is basically saying that often the autobiographical details available in the right hemisphere of the brain are sometimes not available to the left hemisphere that “mediates the factual form of explicit memory.” Someone might say, ‘that experience did not affect me,’ but the narrative one tells oneself and others is not always reflective of what is. I do not mean to dismiss these people’s stories. I am suggesting that there may be more information to consider of which they are unaware.

  2. Fred Vanderbom Post author

    Thanks for your kind words!
    Sadly the link I included to the article to which you refer only gives access to the free abstract of this article; because it is fairly recent, the full version is only available to subscribers and people willing to pay fairly big dollars. I remain grateful that so much informative and enlightening material is freely available, some of it currently published.
    Thank you especially for your mention of what you have gleaned from Dr Daniel Siegel’s book. Having learnt some of what is being discovered and written about the right and left brain and body and mind memories, I am inclined to believe that we do quite likely hold in us a lot more experiences and their effects than we are aware of.

  3. markiesha

    My son at three weeks was diagnosed with pyloric stenosis and got the surgery the very next day; now he’s 6 weeks old and still is having projectile vomiting and can’t keep nothing down… he had a GI scan which showed his pylorus was still tight and no food is passing through… the surgeon said he is not doing another surgery because it is not “fruitful”.
    Since my son was 3 weeks we’ve been in the hospital and were discharged for 2 days and ended back in the hospital because my son had blood in his stool… then they kept him and now a week and 2 days later they released him from the hospital and prescribed him atropine he take .5 dose every 3 hours. When we got home he threw up 2 days’ worth of feedings… the hospital released him saying he’s holding down food – but not to me if he threw it up the day he got home. Now today I’m back in the hospital because he hasn’t urinated since 6 am this morning and also hasn’t had a bowel movement with the help from a suppository he was prescribed from the doctor because he hasn’t had a bowel movement on his own for a week and 3 days… What should I do? I’m stressed…

  4. Fred Vanderbom Post author

    Markiesha, I’m afraid it seems to me you are not being treated with proper skill and respect by the hospital. It sounds like his pylorus has shut again and this needs treatment. As your son is older than 3 weeks, medicine can “do the trick” almost as surely as surgery, and with less trauma, but it will take a few days to do its work, so you need to make sure he survives this time lag.
    Has the hospital weighed your son and given you the results so you can check how he’s been going since his birth? If not, insist they weigh him and compare the result with his birth weight. Has your son lost so much weight he is now below his birth weight?
    If not, his problem can be managed with medicine and keeping a check on his weight to make sure he’s gaining.
    If he has fallen below his birth weight, and is continuing not to wet or soil his diapers/nappies, he’ll start to get drowsy and very sick looking – this is a very bad sign… danger… get a friend to come with you to the hospital a.s.a.p, and insist they admit him until his system is producing the goods and his weight is gaining.
    Don’t handle this on your own – get your friend to know the story and speak for you. Stay at the hospital until you get your son onto the road to recovery.
    Please let us here know how you get on with your dear little one. Best wishes!

  5. Titch

    our son had surgery for pyloric stenosis when he was 5 weeks old, he was left undiagnosed up to 2 weeks prior to this, we were robbed off several times. We were accused of over feeding him. He had projectile vomiting more times I dare to remember. He is now 10 years old, and every time he eats, his food goes straight through him. He never has firm stools, they are always really runny and very pungent. Can anyone relate to this? I don’t know if he needs to see a Dr or not, I am worried for his long term health 😦

    1. Fred Vanderbom Post author

      Your question cries out for an answer from somebody with more knowledge and experience than I have, and I hope some of our readers respond soon. Meantime, why not ask or just listen in to the forum discussions on sites like Topix, MedHelp, PatientUK, and Facebook’s PS groups, or post your question on Yahoo’s Answers.
      In any case, I would urge you to help your son to see a gastro-enterologist. Btw, the sloppy diagnosis and symptoms since that you mention are sad and both all too typical before and after PS surgery (although not universal).
      Although my motions are usually normal it only takes a little stress or acidic food and I have the runs, and I’ve been a beanpole and still am despite some age-related bulk. It’s as if hobbling that pyloric muscle sometimes does lasting damage, although studies suggest the area looks normal a few weeks after the surgery. The GE will be able to tell you whether your son is being damaged by too rapid processing of his food intake; I suspect I was damaged by the starvation and circumstances around the surgery rather than what happened since, if my growth and general health are taken as the key indicators. The 2 factors should guide you too and are among the questions a doctor will ask.

    2. kelly

      Our son had the surgery at 4 weeks; now he is three and I am noticing speech, motor skill problems, and after he was potty trained he is now experiencing the same problem your son is he eats and it goes right through him. Not watery loose but always loose and pungent too. Being new to being potty trained he is having issues making it and always seems hungry but never eats a lot. Although he does talk I have thought gees maybe he has slight autism. But now I am wondering if the surgery has caused him more harm. His dad and I are very stressed due to the bathroom issues and how easily he becomes emotional. He is my third child and I am very concerned. Why this hospital never said there was any other treatment but surgery and why we were told there were no long term problems; because believe me, I asked. They told me it was so routine they do a few of them a week. Ugh. Does anyone know of other literature on the subject?

      1. Fred Vanderbom Post author

        I hope you get some feedback or even answers from other readers.
        But believe me, many years of scanning internet material on PS has not made me much wiser than when I wrote this post 18 months ago now. Though the assurances (“no more problems”) seem to be becoming a little more guarded and less bland, on this issue the research reports are sadly just as scarce, unhelpful and often trivial (e.g., dealing with tiny samples or miniscule issues), as my posts keep pointing out.
        Because malnourishment with PS can affect the brain long-term, and because PS comes with other physical and/or psychological conditions far more often than the stats for non-PS people, you need to keep this in mind as you work to understand, treat and manage your son’s problems. But you also need to remember that what I’ve just mentioned here can be the result of or come with PS itself, regardless of whether your son had surgery or medical treatment.
        Bathroom issues are different, especially when such problems are not “in the family”, and a common complaint among PS-surgeried people. No doubt you have tried diet changes, medication, and seeking advice from a pediatrician or GI specialist? I get angry inside when I read stories like yours. Most children’s hospital staff and ped surgeons seem not to get to hear about the problems that arise after their patient is done with after-care: shame! Or (and I suspect this is a big part of the problem) the medical industry is geared to quick fixes, having quickly learnt to “move on” people with less than easy-to-remedy probelms, and closes its ears, mind and study-interest to people with long-term issues.
        All we can do about this is to keep telling our story. Could I urge you to so so on forums like those on Facebook, MedHelp, and Topix? Even then, you’ll get more agreement than answers, I’m afraid.
        Best wishes! And if you are willing, keep us informed of your family’s continuing journey with this.

      2. Asantewaa Aggrey

        My son also had a projectile vomit when he was just 5 weeks for 10 days. Anything that goes into him comes out after some time. So I went to see a peadiatrician and he was diagnosed infantile hypertrophic pyloric stenosis, and had to be corrected with a surgury. They studied him every hour and inserted a catheter in the nostril to drain every intake before the surgery was done after 2 days. And after 3 days he was discharged.
        We went for review couple of times, and were asked not to come again, only when there was a problem. And since 2013 November up till now by the grace of God he’s fine physically, but I’ve noticed that his temperament is not good at all, and not considerate, when I compare him to the rest of the boys. He’s the fourth boy. And that makes me search for answers. Pls I need answers to his behavior, can that be side effects of PS? Thank you.
        My name is Asantewaa and I’m from Ghana.

        NB – His PS surgery was done by removing his navel, and no scar nothing…

      3. Fred Vanderbom Post author

        Hello Asantewaa, thank you for writing here about your son’s problem. It is never easy to work out what to do when our children need extra care.
        First, he is a lucky boy to have had a skilled surgeon whose technique was up to date. Sadly, that does not always happen.
        About your son’s behaviour, the fact that you have 3 well-behaved sons tells everyone that your son’s misbehaviour is probably something to do with your son and not your parenting skills.
        Here are some possible reasons for his behaviour.
        You wrote that he was sick for 10 days. If (apart from vomiting a lot) he became very weak before his operation (less crying, less interested in drinking, not opening his eyes) and if his skin showed he was dried out (wrinkly and losing its firmness), then he was badly under-nourished and dehydrated, and this brings with it brain damage. To help him with this you will need a pediatric psychologist to help you – or use advice from books and/or from people whose parenting wisdom you and others admire.
        Pyloric stenosis, the operation and the anesthetic should not affect him anymore after more than 3 years: this has never been reported.
        Another possibility is that his character is the problem: is there somebody in your or your husband’s family who often behaves badly? If so, handle him as my next line advises you!
        Still another possibility is that because of his sickness and the fear you had for his life, you have been too patient with his bad behaviour – after the surgery and still now (and every child will test your tolerance and skills!) If this may be true, make sure you handle him exactly as you handled your other children at his age, and let him suffer the same consequences when he behaves badly.
        If it is difficult for you to work out which of these possibilities is true, or perhaps a bit of several of this list, then (again) ask a wise family member or friend to help you.
        Let me know if there is more you need to know, and how it works out for you and your naughty son.

    3. adam

      [In reply to “Titch” who posted 5 May 2013]
      Hope this isn’t useless to ya. I was born in 1987 with extreme pyloric stenosis: my projectile vomiting apparently reached as far as 6-7 meters away. The doctors assumed my mum was a ‘paranoid’ first time mother, and misdiagnosed me several times. It took my mum to feed me just before a doctor’s appointment – and I was then sick all over the nice doctor’s suit. I was admitted to hospital that day, also had my operation in the paper at the time. I’m 27 now and have only recently put on weight. I was never more than 10 stone prior to this, no matter what i ate. And i can eat like a starved horse. I now weigh 15.2 stone. Which i seemed to gain in a few months. Have never had consistent stools, as in i still have ‘accidents’ at my age. Not often at all – every 9-12 months. Still not nice, it happens all of a sudden, there is actually no way in stopping it when it happens. I haven’t been diagnosed with ibs ever but have always had a dodgy stomach. Hope this helps!

      1. Fred Vanderbom Post author

        Thanks very much Adam for telling us some of your story. It’s certainly worth sharing around. I loved the humor of what it took the doctor to take your problem seriously. Your poor mother though – so many mums get that kind of talk, as if mothers can’t tell the difference between a baby’s normal sicking up and the fountain you and I must have been. The under-weight and over-weight issues are all-too-common also – that’s worth mentioning as you did. One of the benefits of sharing is that we feel less of a freak, and realise there are many others who have a similar past and also the day-to-day issues. Have you thought of having the ibs checked out? But often if we’ve lived with it for a good while we know it’s not fatal, that doctors and tests cost, and that usually there’s not much choice but to live with the way our system works (or doesn’t).

      2. Anne Craig

        My son was born with pyloric stenosis. My doctor says it was my milk that caused vomiting and to put him on rice cereal with formula. He immediately had projectile vomiting after a meal. No bowel movement since I brought him home from hospital. I called the Doctor and was told that I had new mother worries, in other words, I was being paranoid. It took him constantly vomiting and getting aspirated pneumonia, for which he was finally admitted into hospital. He was two months old by then. While he was being treated for pneumonia it was discovered that he had pyloric stenosis. They could not do surgery until they treated his pneumonia. He was in the hospital for nearly a month. He is now 36 years old and rarely gets sick.

      3. Fred Vanderbom Post author

        Thank you Anne for telling something of the awful story of the first month of your son’s life. How sad but common this kind of story is. Those who follow this site will be grateful that although it seems that so many parents and PS infants are not given much attention until the baby is almost dead from malnutrition and dehydration, almost all survive and do well. I’m so glad your son has done well!
        The main reason for this blog is the trauma and damage that are done to parents and their PS children by lack of PS awareness and sloppy diagnosis. True, new mothers will probably be anxious, but they also have an inborn sense of their child’s needs – and the medical world is all-too-often far from diligent in its care of parent and child.

  6. Dean

    Fred …how can I say this …This one of the most interesting and disturbing articles I’ve read since I read the article that children were routinely “not” given anesthetics while being operated on for PS just a short few weeks ago. I have several of the symptoms that you talked about above and there are two in particular that I would like to comment on here and now. The body’s somatic memory is one that i have struggled with and wondered about for years and years. As i write this at 4:23 am after being awoken by, all i can say is a particularly anxiety-invoking dream at around 3 am that i have awoken with for DECADES. I find it almost impossible to go back to sleep, my stomach is very acidic (to the point that I have to eat tums or my particularly bad habit of ice cream and bagels) and i am hyper anxious (in mind and body). Although my parents are now deceased i remember a particular talk about my operation and remember them telling me it was very early in the morning (as many operations are) but i am beginning to believe that these anxiety filled mornings are the result of Somatic Memory of the event that i was forever traumatized by being cut on with no anesthetics 55 years ago. I was thinking about locating my records of the operation but i recently read on your Blog that the majority of these records have been destroyed (great… thank you over-population). And now i am considering hypnosis as the only way to see if these are connected – this is my only hope. What do you think?
    The second topic is the adhesion topic and… Do you know how much data is there regarding whether this adhesion scar can cause obesity (i so dislike that word)? I ballooned out when i was a young child and was left alone by my parents (around the age of 10) who were off trying to earn 2 incomes when it sheik or necessary to do so. My mother left me alone with a stocked freezer of hamburgers and pizzas and i became a paper boy outside of two pharmacies who gladly sold me all the candy and comics that i could afford. The thing that really bothers me is that i may have unwittingly committed this same offense on my lovely daughter whom i have left alone with a credit card to buy what she needs and likes to eat and she is now struggling with obesity although she is an active child of 19 and was one of the top dancers in her high school. Although she had anesthesia (I hope!) when her operation was done in 1993, i am very concerned that she has an adhesion scar that does not send the message that her stomach is full and never will. How much data is there supporting this that you know of? All i know is that it has been a life long struggle for me to train myself to stop myself from eating too much. Is the pyloric area and the surrounding tissues linked that send the “i’m full or satisfied” message to the brain to stop eating?
    There are a couple of other subjects i would like to discuss but i know my message is already long… the editor is acting weird and i want to send it now and “try” to get back to sleep. Your new friend and ally ..Dean.

    1. E

      Surgery saved my life at six weeks, but I have battled a weight problem ever since. I didn’t feel full at meals until after eating seconds, more than my older brother ever ate…even having an active, athletic childhood didn’t change my body. I only recently linked the post-surgical penchant for eating a lot (duh) to that lack of satiety. I am in my 40’s and despite being careful about my diet and exercising regularly, I am really having an especially hard time with weight– and the life-long low self esteem from being overweight is becoming harder and harder to manage. My family have never had a problem with weight, and my father makes it clear (as he always has in one subtle way or another) that I am not very attractive. At least the five inch scar never bothered me, but no one ever saw it anyway because I was always too fat for a bikini.
      Is there any certain kind of weight-loss approach (something besides gastric surgery of any kind) that really works for those of us who have this satiety issue (and the long-term, extremely stubborn overweight) from childhood pyloric stenosis surgery- and without any insurance to help cover seeing a psychologist? Can laser or lipo or cold/thermal therapy help get rid of at least the strange protruding lower belly I have always had? Does anyone else have a belly that sticks out below the bellybutton, goes in at the waist, then sticks out again above the waist? And the lower part protrudes farther than the upper, no matter what. Even when I was in really great shape rowing crew, this belly would not go away. Thanks for your replies.

      1. Fred Vanderbom Post author

        I really feel for you and so many in your position after PS. It remains a mystery why the PS survivor community seems to be divided between those who cannot stay slim and those who cannot add even a little extra bulk. Often, as you have found, they are the only one in their family with this weight issue, so it’s probably not simply a matter of genes.
        The web is silent on this subject, and in my blog I have gleaned about as much as I have been able to find and learn. And in 17 years of scouring the web almost daily I have never read a comment from anybody on how they overcame this problem, which in many people like you is very emotionally upsetting. Insensitive comments, especially from family members, makes the pain worse.
        I have learnt and experienced that diets, counselling, and even surgery cannot be relied on to bring long-term change. Tough as it may seem, I believe that the problem you represent is more damaging than mine (being a chronic beanpole until my 60s), and that if you can manage it the best solution (and it’s more reliable than surgery) is self-knowledge and self-discipline.
        The various kinds of weight reduction surgery (WRS) may help, but all too often it seems the patient negates this by continuing without the two “selfs” I mentioned. Add to that that some surgeons advise against WRS when there is a scar in the region from an earlier operation (that’s a subject on its own).
        So if you can manage it, read up on how much and what kind of food a person of your build, age, and work might need, work out a healthy intake pattern, learn about and put in place whatever is needed to encourage and support you and keep you accountable, and go for it. Don’t go by feeling full but by your chart: I have fixed amounts for breakfast, lunch and dinner, with no or just small snacks in between; I’d find it hard to enjoy a day without just one small piece of cake and a glass of wine! I weigh myself first thing every morning and adjust my intake depending on what the scales said that morning!
        But yes, I’ve only had to do this for the last few years, and I find it quite easy, and know not everybody does. One of my daughters has found the 5-2 diet suits her family, and they all follow it together – and it’s working. But what I have suggested to you would be more accurate – if you can manage it.
        Best wishes, and let me know if I can help further – and how you get on.

      2. Barbara

        I so sympathise with you! This could be my story although I have had periods of leanness – but I had to starve to get there, so imagine what this did to my already out-of-kilter hunger mechanism.
        I had my op in 1952.
        Believe in yourself and go back to your love of dance even for twenty minutes a day just to reconnect to the little girl who had no control over the outcomes of PS, and believe in the beautiful spirit that you are – and let your Father’s ignorance wash away from you.

      3. Fred Vanderbom Post author

        Thank you, Barbara, for your response. You have certainly been deeply affected by your early-type PS surgery, and you are right: we must do whatever is possible to ensure this does not determine our life and relationships. I am thankful that most of us affected have managed to keep much of their pain private. There is so much in life to celebrate! I just wish I could dance!

    2. Fred Vanderbom Post author

      Hello Dean, on editing and updating this old post I came across your 2013 Comment – and noticed I have never responded. I ask you to accept my apology for this and will do my best to reply, recognising that quite some water has flowed under every bridge since 2013. I just hope that I wrote to you by email at the time – perhaps?
      Hypnosis is a recognised therapy for dealing with troublesome somatic memories and related PTSD. Counselling and many other therapies are also available, especially in the USA. I do hope you can find some release. I hope also that you have discovered that the Search and Categories boxes enable readers to find my posts on this subject area.
      Your other question was about a link between adhesions and weight gain. In general the answer is no: I have not found any mention of this online, and there is a lot of information available about both subjects. But you’d know that the misery some suffer due to adhesions could easily cause depression and love hunger that can be to some extent satisfied by eating (or other “self-help” remedies). Besides this, our body build and our hunger switches are both constitutional, so your daughter would have the same battles you have, just as some of my children have my build and some of the symptoms I have in the more distant past thought were PS or surgery-related. Another factor you mention is broadly ;labelled ënvironmental: you and your daughter, put in similar situations, reacted in similar ways.
      Considering the above and much else – our body and life stories are inextricably intertwined and will always include some mysteries. And our PS and surgery will be to some extent at least part of that list of mysteries.
      Best wishes!

  7. Fred Vanderbom Post author

    Dean, I am so sad that my post has disturbed you so much. I too tend to have a broken night after I’ve had contact with somebody who has a new and harrowing story to tell.
    Be assured that with the pain of discovery and outrage come a better understanding of what our bodies have been feeling and saying all our lives. And recognizing this damage does lead to healing, probably slowly and haltingly, but healing is what does happen.
    About hypnosis, I would ask around about its value. I have no experience of this and the references to its use in reconnecting with our body’s memory is very little. Read through Wendy’s and my posts on recovering from the long-term effects of infant surgery, or ask Wendy or a hypnotist you know and trust.
    Sadly in a way, I’m afraid I have come across any references to a strong link between adhesions and weight gain. From all I have read, weight gain after PS and its surgery is caused by our metabolism and how much we consume. This tough on people like you and your daughter who are it seems strongly disadvantaged by your make-up. Most but far from all complain of what I have: a faster rate of metabolism, which means my food seems to go straight through.
    I have written a couple of emails to you about these subjects.

  8. Jennifer

    Hi I’m a 22 year old woman who had PS as an infant. I was operated on not long after being born and have a scar around the top of my tummy button where the incision was.
    I have searched the internet for months and been to numerous doctors about symptoms I have had on and off for as long as I can remember.

    – feeling sick (sometimes to the point where I cannot eat)
    – bloating & cramping
    – pain in and around the scar (more of a pulling sensation especially when knocked, caught or eaten a larger meal than normal)
    – pain when exercising
    – acid reflux
    – a lump like feeling in my throat
    – a feeling of being ‘full’ after only a few bites of a meal (normally on a morning)

    I have always been a ‘poorly’ child and My mum has taken me to many doctors as a child/teenager asking them if these symptoms are anything to do with this. To which they have said no.

    When I was 19 these symptoms were so bad (the pain and sickness) I was taken into hospital with suspected appendicitis. After surgery I was told my appendix was fine and they couldn’t understand what it was. They did however find a green fluidly substance around my stomach area and took it for testing. All tests came back negative and I was told it was ‘one of life’s little mysteries’. Which neither myself or my mother were happy about.

    Since then my symptoms are considerably worse and have been told by my GP that I have IBS.
    I was browsing the internet last night and read a lot of PS patients have grown up with all the symptoms I have and have been told they suffer from IBS.
    Someone also said something about having to have the scar tissue removed because of the pulling sensation they feel.

    I’d just like to know if anyone knows if all the symptoms I have are related to having PS as an infant or it is something else?
    I have an appointment with my GP next week to explain what I’ve wrote here to try and find some sort of answer because there is not a day goes by that I do not feel unwell.

    Hope to hear from someone soon.

  9. Fred Vanderbom Post author

    Thanks for sharing something of your story here, Jennifer. Those of us who have had PS followed by these kinds of “mystery” symptoms are sure there must be a link, and the few published (smallish) studies of this have come up as affirmative. But the medical profession seems to be at a loss to explain the links that you and others report.
    It is important that we share about our issues as well as seeing our GPs. I suggest you do what others have done and post also on any of Topix, Patient UK, MedHelp (which all seem to have a wide readership) and on a Facebook PS Group (if you like). I’m sure you’ll get some feedback, though probably little extra light, sadly.
    I wish you well and really hope you get some new insight and solution soon!..

  10. Mandy Skelton

    I had this operation when I was two weeks old in 1965; the operation was carried out at Great Ormond Street Hospital in London. My parents were not allowed to even come to the hospital as I was whisked away in an incubator into an ambulance and rushed up to London. I remember having to go for regular check ups at Great Ormond Street until I was 12. My younger years were awful, mum hating me going to parties as I would always end up vomiting!!! A trip to the dentist was a nightmare as I would always scream the place down, I remember one occasion when I had to be held down because the dentist wanted to put a gas mask over my face which totally freaked me out (memories from surgery?) I hated undressing into PE kit at school as the other kids would comment on that “thing” on my tummy. Secondary school was no better as the PE Teacher insisted that we had to public shower! I never knew which bits to cover up as I didn’t have enough hands. Pregnancy was tedious: every check up I would be asked by a doctor/nurse what my scar was. My second pregnancy was very difficult and I had to make regular visits to Kings College Hospital in London; I vividly remember a head professor looking at my stomach and saying what on earth is that scar, I explained what is was and he asked whether the surgeon was a butcher as he said it looked like he had just sliced me open, very embarrassing in front of student doctors!!! I’ve never had the guts to wear a bikini and still feel uncomfortable around my husband and children, I tend to go out for a meal and end up feeling sick and having to lie down in bed with cold sweats and that vomiting feeling. But on the bright side, I’m alive. Your article has been so interesting as it’s hard to find people that understand. Thank you and keep up the hard work.

  11. Fred Vanderbom Post author

    Thank you very much for sharing something of your story here, Mandy. I didn’t realise that even 20 years after I had my ps operation and at Britain’s best-known (and I’d like to think best) hospital parents and babies still had to endure such “earlier times” surgery and “hospital care”.
    And then the struggles you had and still have because of your damaged body and emotions: reading some of the stories and comments of this blogsite shows that what you write here is so typical. I have found that sharing this pain with others can be quite therapeutic: it breaks us out of that feeling that we are alone and weird in our feeling self-conscious and worse. It also “objectifies” our story and our feelings: knowing that what we write will be read by others who understand and share this helps us to read, hear and see what others read, hear and see. And always, always those who know and love us will accept us, our inner pain, scar and story without any of what we struggle with in ourselves. This has helped me greatly and I hope it does the same for you.
    You are so right in feeling embarrassed and angry at the insensitive ways doctors can sometimes respond to our body’s story when we have to consult them, usually about an unrelated issue. I’d like to think they feel just as embarrassed about their colleagues’ work as we feel!

  12. Ron Fernberg

    I had surgery as a baby, 3 1/2 months old, given only brandy for the pain as I was quite malnourished and they could not put me under; my scar is quite ragged as I was squirming around on the operating table, I was told!

    I was lucky I had the surgery at the Boston General in Mass, back in 1941! I was told it was an old family doctor who figured out what was wrong with me, I was very close to dying, he save my life, none of the so-called expert Doctors knew what was wrong. I have had terrible GERD at times, but not much else! But, now I am having mild to moderate stomach spasms lately, but, I also have diabetes, which may be the reason too! Anyway, just my two cents worth, I am still here as of this comment, ha, ha,

    1. Fred Vanderbom Post author

      So good to hear from you, Ron, thank you for sharing something of your story, and I’m glad that like me you have benefited for so many years from what sounds like it was rather ugly surgery, certainly by today’s standards. But this is how it was in those times. I’m also glad that you seem to have heard some of the details of what happened to you. My reading about the techniques, practices and beliefs of those times has filled in a lot of what my parents never dared tell me!
      It’s true that the longer we live, the harder it becomes to know with any certainty what is the result of what. The GERD/reflux is a pretty common complaint and has found to have a link with the p s surgery. I haven’t come across much mention of stomach spasms – but who knows? Maybe we’ll get another story about this? Here’s hoping.
      Best wishes and keep well!

  13. Tina

    I had the surgery in 1968 at only two weeks old. I’ve always been told that the doctor gave me brandy instead of anesthesia and thought it was a joke…. I’ve had stomach issues most of my life but just learned to live with it. I’ve had two children and no complications there at all. 4 years ago my stomach issues were really bothering me and the doctor said it was my gall bladder and that it needed to be removed which I agreed to. Since that time the issues have gotten worse. I recently had some test done and had some blood in my stool. I was sent to a GI specialist and I am having a colonoscopy tomorrow. I just have to wonder if this is all related.

    1. Fred Vanderbom Post author

      I feel so sorry this has all happened to you, Tina. Of course I cannot give you personal professional advice, but I can encourage you to be aware of what others have found and some of this is passed on in my blog.
      1. Many people have had their gall bladder removed only to be told that their problem was not the gall bladder but adhesions from their PS surgery. It is not hard then to suspect that this was true of many others but not reported – doctors like all of us tend to protect their mates.
      2. Adhesions are the result of most if not all abdominal surgery; I have often blogged about this hazard.
      3. Adhesions are often trouble-free but also cause the kind of symptoms you mention, esp. when they are continuing and not caused by other disease (as may be in your case).
      4. Blood in the stools is a warning sign that should be investigated; a colonoscopy may not be needed unless you have a family or personal history of such problems; I’ve had this symptom but it was temporary and was cleared after a series of stool tests.
      5. If you are cleared of more serious problems, be aware that many doctors deny or are ignorant of the possible long-term effects of PS surgery on the abdomen. You may also find a helpful and forthcoming GI specialist.
      6. Often there is little that can be done about adhesion and other GI troubles (reflux, irregularity, IBS etc) other than to learn how your system copes best. Again, I’ve given some of what I’ve learnt and also some links to offers of help (which seem to work for some but not others) on this blogsite.
      Like you my PS was early (another thing many GP’s and pediatricians initially deny is possible). Glad that like you my children have not suffered, and that PS is now treated very differently.
      Best wishes on your learning exercise… Please consider an update here, and let me know if I can suggest more help.

  14. Lexi

    I am sooooo glad I found this! I’ve been searching for the past year for possible long term effects of PS. Here’s some of my back story:
    At 2 weeks old my son started having projectile vomiting occasionally. I took him to his doctor who said that he was probably dairy sensitive and switched him to soy formula (I unfortunately couldn’t breastfeed due to some medical issues). That worked for about a day and a half, I’m assuming because the soy was thinner than the dairy formula. I decided to take him to Children’s Hospital that evening (which I think was a Thursday), they said it was just reflux and sent us home with a new feeding schedule (less formula, more feedings). That worked until Saturday morning. At that point I took him back to Children’s where a nurse walked in right after I fed him and saw him vomiting: she told the doctor and they began testing. They did blood work and took urine, found nothing, so they did a spinal and x-ray and transferred us to Cincinnati Children’s Hospital while waiting for the results. Those results didn’t show anything and by this time it was Sunday morning; still no answers. My son who was 7lbs 13oz at birth was now under 5lbs and screaming for food that he couldn’t digest. My step mom who is a pediatric RN went home and checked her medical books, she called me on Monday and told me to tell them to do an ultrasound on his stomach for PS. They did and confirmed that it was PS but they couldn’t do the surgery until Tuesday at 6 am (another night of not feeding a starving infant).

    Now, my son is 6 years old and LITERALLY out-eating his father, who is a body builder and eats A LOT. My son has a VERY high metabolism and is still very skinny. But his eating really concerns me as I’m worried that he’s not digesting his food properly and so not getting the nutrition from it. I know children will need to eat almost 24/7, but that’s not the problem. The problem is, for example, I’ll make a large pot of spaghetti and my son will eat AT LEAST 4-5 ADULT sized servings in one sitting, then 5-10 minutes later say he’s hungry again. People keep asking me if he has diarrhea but seeing as he’s 6 I don’t go to the bathroom with him anymore so I don’t know. I’ve had my suspicion that it was because of the PS but the doctor has basically blown me off when I’ve mentioned it. I can’t keep up with his eating habits and it concerns me that he may not be getting the proper nutrition from it. I’m going to try and bring it up to the doctor again. Thank you so much for writing this!

    1. Fred Vanderbom Post author

      Thank you for sharing this story with our readers here.
      The shoddy diagnosis is I’m afraid all too common: despite PS being the most common life-threatening condition of infancy that is often remedied with surgery, many doctors and even ER staff don’t seem to be alert to its symptoms and how to test for it. Thank God for your step-mom!
      You also mention the metabolism of a PSer… yes, this is the usual pattern although for some this has the opposite effect of giving an obesity problem.
      PS is caused by high gastric (stomach and duodenum) acidity which also over-stimulates the system – and as a result we feel hungry. The operation opens the swollen muscle so the baby can take food again, but it doesn’t stop the inborn tendency to high acidity. Hunger stimulates the appetite and we eat, and the more we eat the more the gastric acid release will cause what we call “a fast metabolism”: food passes through our system very rapidly, probably helped by having a shorter intestine than others. I take only 24 hours to pass food and have frequent trouble with diarrhea when I don’t watch my diet: I share what your son has but probably not quite as severely. In contrast, my wife eats very little, can hold food for up to a week, and struggles with constipation – is that a longer intestine, lower acidity, or what? Who knows, but the difference is clear. Until my 60’s I was a bean-pole who was the butt of camp and conference jokes: I’d always line up for 2nds and 3rd helpings!
      As part of a high acid constitution there is also a higher risk of gastric ulcers.
      I can understand that if I had a long intestine (more absorption of food) or slower metabolism then my high food intake would give me a big obesity issue!
      You might consider doing some more reading or consulting on your son’s diet. Pasta is rapidly digested and leaves me hungry too after an hour or so. Certain foods give me the runs: I love high acid, roughage, and greens but more than a small amount will cause me discomfort and the runs!
      If your son is happy, healthy and growing, don’t worry about his eating ways too much. If there are serious worries see a GI doctor. In any case try to understand his constitution and what he needs for the best outcome.
      Please let me know if I can help with further info or explanations.

      1. Lexi

        I am sooooo thankful for your information! That is very helpful to know since I’ve been searching for about 2 years now with no luck for information on long term effects. I just don’t want him feeling hungry after eating a full meal. I would love to be able to give him what will help his body more just had no idea where to start. He’s always hungry and it can be hard for him to wait sometimes if we’re out running errands or something. It also worried me because sometimes he still gets vomiting spells or he’ll eat until he throws up. It’s like he’s not processing that he’s full. So the information you have provided is so very helpful!

  15. Fred Vanderbom Post author

    Thanks again for the feedback, Lexi. I hope that trying some diet experimentation will help your son and your family. While we know that we each have our own metabolism it is hard to see our child not as well as we’d like them to be and hope they could be. I’ve certainly learnt a lot over the years about what works best for me.

  16. Adrian Whittaker

    Hello. Thought I’d share my PS survival story. After being operated on at 4 months back in 1981, I went on to live a very active childhood. Scar is ok and although not ideal, doesn’t look half as bad as some google image searches, so I count my self as quite lucky. Struggled to gain any weight and at 21 YO, I was 180cm and weighed less than 60kg. So rather slender. I decided to do something about it and with excessive weight training and supplementation, I am now 88kg (32 YO) and happy with the way I look. Probably still have a little bit of a slender look compared to my mates at the same weight but hitting the gym clearly worked. My issue is I have recently become severely intolerant to both spices (I love curries) and alcohol, particularly beer. Spices – can eat them fine, but it is when said spices pass into the small intestine then the pain arises. Alcohol – I get drunk very very quickly after a couple of drinks which was nothing like I was in my 20s. I am concerned that PS issues are coming back on these two issues?

    1. Fred Vanderbom Post author

      Thanks for telling us something of your story with PS. Every story gets me thinking and comparing, so allow me…
      The surgery damage should continue to reduce, although I’ve seen that with the passing years and a bit of excess weight some of the ops done by keyhole (minimal access) surgery come to leave three very deep pits like our navel – not a good look either. I’ve come to terms with my caterpillar scar which I hated with a passion for many years.
      With many others I share your weight issue. Maybe if I’d had interest, time and money for the gym many years ago I would have looked more like you do now – who knows? Now in my late 60s I’ve got a bit more bulk, but not where I’d like it. In my case I think my beanpole look was part genes and part the high acid levels and the op speeding up my throughput of food.
      And I also share your sensitivity to “hot” foods: these are acidic and add to the inborn high acidity level or tendency that gave us our PS in the first place. I enjoy hot foods too and am willing to suffer a bit for this, though I keep a check on quantity. Alcohol (incl. beer) doesn’t worry me, I’m glad. You could get that checked but it may not be worth the trouble and tests. My thinking is that it’s not unrelated to the fast throughput of your intake and your food canal’s blood supply picking up the alcohol faster than “normal” (but what is normal about our system?).

  17. Lee Higginbotham


    Thank you for this vast amount of information as well as all the readers of this article’s input. My son, too has PS. At 6 weeks, (almost 9 years ago) he too had surgery. I know for a fact that he did receive anesthesia as I spoke to the anesthesiologist prior to my son’s surgery. So, post surgery was wonderful! No more projectile vomiting and he ate normally. Life was wonderful!

    Now, we are seeing that he gets full very quickly and has difficulty with bowel movements. The doctor has him on a regimen of Miralax, which has helped. But as recently as within the last month, he has started having stomach aches and nausea every couple of days. So, it hit me and my Mother-in-law at the same time just two days ago that it might be long term effects of his PS, which started my quest for information which led me to this website. Again, thank you!!!

    My wife and I will schedule an appointment with our doctor first thing Monday morning as they are closed on the weekend. I will post back how we proceed, so that anyone else may gain insight from our experience as I have with your information as well as all the parents that have posted about their children.


    1. Fred Vanderbom Post author

      Thank you Lee for your appreciative and informative response to my blogging here. I know from the stats that many readers “visit” this site, and especially a few of the “pages” including this one, and it’s really good and really constructive to get actual feedback: this multiplies to benefits of the actual post many times.
      Thanks also for your kindness in promising to give the many readers here a report after your doctor-visit. I trust this will be very helpful.
      However, be prepared: I’ve just been reading one such report on one of the Facebook sites for PS-related issues, and sadly, the typical experience is not happy reading. Denial and/or referral seem to be the usual results, with very few doctors able or willing to work towards a clear diagnosis and effective treatment.
      But as with slow or sloppy diagnosis, it will help if you yourself are as well-informed as possible, and are supported by your partner or somebody else who is somewhat “up to speed”.
      Be very aware that many doctors react very strongly to a searching question… If you feel game, mention that someone who has followed PS-related matters via the web since 1997 has not found one major research report on PS’s long-term effects, and that the very few few small studies that have been reported on all state (with varying details, as we’d expect from small samples) that there can indeed be ongoing and/or long-term effects on the stomach and its functioning.
      Most doctors are taught in school and then repeatedly hear simply that the surgery (once mastered) is very quick and easy, and highly successful, with very low mortality and “morbidity” (immediate complications). “End of story” – but is it?
      Best wishes!


    I was so ill just after I was born that I was christened in hospital as it was thought I might not survive. I was projectile vomiting every time my mother fed me but I did not have an operation as, spontaneously, I recovered and was allowed to go home. Everything was fine until I was nine years old when I became ill with severe stomach pains and sickness. After two weeks of feeling very miserable, I was admitted to hospital, presumably because of weight loss and dehydration. The doctors were mystified as their tests were inconclusive. The doctor in charge of my treatment then decided that because they couldn’t find out why I was ill, it must be because I was a spoilt child who was contriving to vomit across the room several times a day because I was seeking attention. My parents did ask if it could be related to how ill I had been as a baby but their suggestion was dismissed. It was then decided that I needed to be taught a lesson so I was scolded by both nursing staff and my parents when I was sick and forced to get out of bed to join in with other children’s activities on the hospital ward and eat at the communal table, even though I could hardly manage to eat anything. I was so miserable that one night I tried to run away but had to turn back when I found I could not reach up high enough to open the door. When I got back to my bed, the height of it and the pain I was in made it impossible for me to climb back in so I hid underneath it until I was discovered. I was put on a drip and had a nasal tube inserted, the drip location had to be changed on several occasions because my veins kept swelling up ( I have two horizontal scars across my ankles from the insertions and I still have little round scars on my wrists). I do not know how long this would have continued but one night, in too much pain to sleep, I was trying to write a letter to a school friend. A doctor I had not seen before came in and chatted to me. He asked if he could read the letter I was writing, which struck me as odd, and when he finished, I asked him if it was okay and he said, of course, you are a very lovely little girl, which also seemed odd. He must have persuaded the doctor in charge of my case that I was actually ill because it was then decided that I had appendicitis. My appendix was fine however so finally I was given a barium meal and x-rays which revealed the blockage. I was successfully operated on and finally left hospital five months after I first became ill.
    I have not had any problems which I can directly relate to PS. I have always had problems with bloating, food intolerances and ibs type symptoms but my mother also had these and so have two of my children. I did once find something interesting in an old book though, written in 1968 by a then best selling author of books on nutrition, Adelle Davies. In her book, Let’s Have Healthy Children, there is one page about PS. She had given some babies with PS B vitamins and their vomiting stopped. She suggested that if 30mg of B6 and a quarter teaspoon of magnesium oxide – supplying 250mg of magnesium – and a concentrate of all the B vitamins were allowed for at least three days, surgery might sometimes be prevented. Whether this could be effective, or not, I cannot say but all my pre-menopause years, I had crippling PMS which I found could be alleviated to some degree with magnesium and B vitamin supplements. Could magnesium and B vitamin deficiency have anything to do with PS, do you think?
    I also do not eat wheat these days, minimal sugar – even the natural kinds, lots of salad and vegetables. Fruit juice does not agree with me at all and after years of being vegetarian, I had to give up as pulses, such as lentils and beans, cause me too much discomfort. I agree that acidity is a big problem but I learned from the Hay diet to always eat something raw, like salad, with the acid forming foods such as meat and carbohydrate, it really helps. As counter-intuitive as it sounds, fresh lemon juice diluted in water is great for acidity, it turns into an alkali in the stomach. Love coffee but only have a small cup once a week – that is very hard!

    1. Fred Vanderbom Post author

      Thank you Julie for telling us here something of your PS story. Yours is certainly different from the norm and a very sorry tale. It is not unusual for mild infant PS cases to escape surgery, only to have the condition linger. But to continue to be the subject of high-handed judgment, fob-offs, and misdiagnosis… Wow! And you’re not the only one to lose your appendix (and others their gall bladder) as a result of doctors dismissing the symptoms. What a terrible time you went through as a nine year old: I expect this experience will have affected you even more than the struggle to get IV lines in and the eventual operation.
      Your experience makes me grateful that I had my op over with before my mind-memories came into play. Although at times I wish I had had the conscious experience of PS and been able to consent to the surgery. Many of us have been deeply affected by sub-conscious or somatic memories plus becoming self aware with mystery scars and stories which we could not understand or remember. Crude 1940s surgery followed by the code of silence – argh!
      I’m also grateful that you have given us a report on the diet you have found agreeable, as this subject is often a worry and source of frustration among those of us who live with continued high acidity and/or the collateral damage of the operation. Your tolerance of lemon juice resonates with me, but I’m still learning. It seems that stress rather than diet is the major cause of my IBS and reflux, although I’ve found it impossible to always draw straight lines here. So we live and learn!
      Best wishes.

  19. Jenn

    Hi –
    I believe I had PS as an infant. Unfortunately, my mother can not tell me what type of surgery I had and my father was not in the picture at that time. The only thing that leads me to believe it was PS is from what she told me my symptoms were, plus a general practitioner said it was PS.
    I am 32 years old now and a concern/problem I have had from it is not being able to vomit. I have never vomited and am worried this may be detrimental if something serious happens where I need to. I have gotten really sick in the last 6 months, twice causing me to dry heave violently but nothing else. I don’t see this being a side effect with anyone else who has PS, which leads me to believe this is not normal. I do have IBS and have always had gastrointestinal problems. But now I am curious if I had another type of surgery. I don’t know how to obtain this info as my mother is no help and father has passed. I feel lost and was hoping someone has experienced similar side effects.
    Thank you for taking the time to read this.

    1. Fred Vanderbom Post author

      Thanks for your Comment here, Jenn.
      As the symptoms your mother has given you were recognised by your GP, it’s very likely you had PS. It’s by far the most common reason babies have abdominal surgery. Your scar would also help you know: a PS scar would be fairly small (between 3 & 5″ or 6 & 12 cm) and it’d be between your navel and chest and center or right of it; it could be vertical, across or angled. Fixing other abdominal problems would have left a larger scar than this. There are many PS’ers who have posted images on one of the Facebook’s PS Groups’ “closed” pages if you need confirmation; you could also ask your question there.
      Many of the Comments on this “page” will assure you that you are far from alone regarding some of your issues – welcome to the PS Club!
      I’m afraid that PS often leaves us with IBS, reflux and other gastric follow-ons. PS is caused by high gastric acid levels, and the surgery doesn’t change that.
      The inability to vomit must be very uncomfortable and potentially dangerous for you, and that ongoing effect also is reported by some PS’ers, although its seems few; I have collected a small file of reports on this. Have you asked your doctor about what how to induce vomiting when it seems necessary?
      I have never seen any research on a link or cause, but from what I can piece together I believe it is caused by trauma or damage caused by the surgery. Your age would make that more likely: if you have explored my blog you may have read about the 1987 watershed in infant surgery (triggered by Dr KJS Anand) and Dr Louis Tinnin’s work on trauma.
      If you feel the need to explore that area, I suggest you use the Categories and Tags, and feel welcome to email me via the “About me” tab of this blogsite.
      Best wishes.

    2. Fred Vanderbom Post author

      Hi Jenn,
      I have done some more web research on your inability to vomit, and have found that this can be the result of Nissen fundoplication surgery, which is sometimes done on babies to stop severe GERD or reflux. This may come with or after pyloric stenosis (PS) and its surgery, or be an unconnected condition. It is also a remedy for a hiatal hernia (when the stomach bulges upward into the lower part of the esophagus.
      In a Nissen fundoplication the gastric fundus (upper part) of the stomach is wrapped, or plicated, around the lower end of the esophagus and stitched in place, reinforcing the closing function of the lower esophageal sphincter (muscle ring). There are diagrams of this procedure online. It is clearly more severe surgery than the PS remedy, pyloromyotomy, and is done to strengthen and tighten the muscle ring at the top of the stomach and prevent the stomach’s churning pushing food back up to the throat. If the inability to burp or vomit causes problems, another surgery can be done to partly reverse the original one. I do hope you can avoid this; although the Nissen op can now be done by keyhole surgery, this is usually not done for later surgery in the same area.
      Inability to vomit can also be an emotional or psychological response to surgery of the stomach area.
      I trust these notes help you get a fuller understanding of your issue.
      Again, best wishes!

  20. Brenda Bebbington

    Hi Fred I hope you don’t mind me calling you by your first name as I am giving you some personal info.

    I had a PS operation 67+ years ago and had an emergency op. I have always had a problem with my bowels. It has got worse as I’ve got older but I am used to this all though it can be debilitating. However in my teens I developed a major life threatening problem with my lungs.
    In my early 20s my left lung kept collapsing which hospitalised me on many occasions. My right lung started collapsing and the time between left and right then got shorter. The cause was not confirmed as I didn’t have asthma or TB. To cut a long story short the operation I had had only been tried on one person before me. They operated on my left lung not knowing my right lung had not reinflated, and I was given to the last rites.
    After reading this site I am now wondering if there is a connection. My mother and father told me about the PS op when I was 16 [and that] I might not be able to have children; I have 3 daughters and 11 grandchildren so I didn’t have a problem because of the op. I did however develop curvature of the spine, not a major problem in itself but it is impinging my breathing on my left hand side.
    Sorry for going on but has anyone else had similar problems at my age?
    Thanks Bebbo

    1. Fred Vanderbom Post author

      Thank you for writing, Bebbo, and telling us something about yourself here.
      Both your bowel and lung problems could well be connected with your PS so long ago. Of course we here cannot be sure of either link, as I’m not a doctor and even a doctor would need to have some test results and probably specialist advice to know for sure what has been causing your symptoms.
      I am thankful that you are able to manage the gastric problem. PS is essentially caused by high gastric acid levels which the operation doesn’t change; this puts PS’ers at a higher risk of gastric ulcers and other troubles, but these can be treated. Still better is to understand our system and work with it! The operation also leaves us with adhesions (I have posted articles about this) which occasionally interfere with our insides.
      I have not come across any mention of a link between PS and scoliosis, and such a link is unlikely as the two conditions are quite different. However, it is possible that the trauma your body has suffered has brought out a weakness in your spine.
      However, I do have several files about PS and lung damage from people with whom I have networked, and these may be of value to you.
      Briefly, either because of the PS or the operation, vomit could have found its way into your lungs which of course were very immature and stressed.
      If you (or other readers) think it could help you to know how others have experienced and sought treatment for this, please email me at – there is also an email link on the “About Me” page of this blogsite. Several of the Facebook PS Groups also include information on this, although finding it may take a lot of scrolling… I can then send you the information I have.
      By the way, I’m so glad you could have children, and that you have just as many grandchildren as my wife and I enjoy! None of my family came out with PS, and I hope this is also true of you.
      Best wishes!

  21. Rachel

    Hi I’m 32 I had ps at 4 weeks old, never received any appointments after, my scar was stitched so tight that I have a massive indent about 10 inches long which gets infected and sore, I have had many ops on pain for endometriosis, they have now told me it’s not the endo causing pain, I am worried it’s the ps from years ago and doctors are missing something all these years.
    I projective vomit still.
    My bowels only open a few times a week.
    I am in constant pain any advice would be great.

    1. Fred Vanderbom Post author

      Hi Rachel! I am so sorry about the nasty health and wellness trouble you have had, and yes, this could stem from your PS op so many years ago. The information you have given here does not enable me to do more than ask some questions and give some possibilities, based of course just on my years of interest and learning, but not on professional training and test results – although you have received years of the latter without much joy.
      It is very likely that your scar is indented because it’s tethered to underlying muscle bodies; it is also very long for the PS op (mine is 3½ inches, which used to be about standard). The length would have made the tethering more troublesome. As this is most likely causing you trouble, you should get advice and probably have it corrected by a plastic surgeon (which is allowed under the UK NHS I have read). This may well deal with the pain and certainly the infection.
      “Tethering” means that as your wound healed, tough scar tissue has grown out from it and acted like velcro to create a web of scars between different layers of the abdominal wall and between organs in that area: usually the stomach, intestines, liver and gall bladder. This can understandably seriously affect and even choke their working. Many PSers have lost their perfectly healthy gall bladder and even their appendix due to this! Such scar growth is usual after any abdominal operation or infection: it’s called “adhesion” development. Adhesions only sometimes caused unbearable pain and blockages – but they can.
      There are articles and illustrations of adhesions on the web. On my blog I have often written about them and the havoc they can cause.
      Doctors often suspect IBS, endometriosis or coeliac disease when scar tethering and adhesions are the real problem. They are taught that PS has no long-term effects, which this blog and the PS discussions on PatientUK, Facebook, MedHelp, and Topix very clear prove incorrect.
      Please feel free to respond with more information or questions, or to email me via the “About” tab.
      Best wishes – and I’m sure the many readers here would be interested to know how you go from here!

      1. Rachel

        Thank you for the reply. The scar went from one side of me to the other side when I was 4 weeks old, which has made it so big. You wouldn’t think my belly would be that big at that age, my mother was told the scar would virtually go as I grow, but due to it being so tight, I never have had a flat stomach, as the top under my breasts goes over the scar; it’s so ugly and makes me look like I have one big roll of fat as the indent stops my stomach being flat! Doctors have recently put me on laxatives and bladder control tablets to see if they help the pain in my stomach, but I get most of my pain a lot lower to my scar. Could it be pulling something inside?

      2. Fred Vanderbom Post author

        Your wound would not have been as long as your scar is today, Rachel, but it would have been proportionately as long, probably 3-4 inches: our abdomen grows about 3x, I’ve read. Whatever, your surgeon certainly gave himself a lot of space to work in – perhaps it was feared you had more major problems so they wanted to check for these possibilities. But such a large opening would have really exposed your internal organs to the drying air, which in itself is a hazard for the formation of the adhesions I mentioned.
        It seems from reports that doctors often tell upset parents that their baby’s scar won’t grow with them – or will virtually disappear, which is rubbish: every part of us grows with us, and usually just as well! Sadly, by the time we grow up most doctors won’t need to face the complaints! I’m glad for you that as a woman you won’t find it as hard as I did to avoid others’ stares and questions about my scar.
        You say that your pain comes from well below the scar, however. As I mentioned, adhesions can spread, but there could be something other than endometriosis or adhesions troubling you. You could insist on more scans and tests to find the cause. You’d know that some nasty problems are hard to detect early. Best wishes with that.

  22. Martha Stout

    What if any is the relationship with PS and Gerd? I have had numerous issues, gallbladder, a diverticulum, carcinoid in my appendix and IBS. This GeRd is terrible. I had an episode last nite that last for 1 1/2 hours– spitting up clear , thick mucous. I didn’t know what to do. Finally I took some baking soda and it finally subsided. Any suggestions?

    1. Fred Vanderbom Post author

      Both PS and GERD are caused by excessive gastric acid, Martha, and dealing with the PS doesn’t of course change our metabolism. Taking antacids may relieve mild GERD or reflux, but in your case you may need to see a doctor, and stronger medication or further examination may be necessary to allow a careful diagnosis and I hope relief. About 20% of PS survivors have other abdominal problems or a higher risk of them, but then, abdominal problems are common anyway and can be caused in a multitude of ways: they can be difficult to diagnose correctly and so many doctors fob off patients who seek their help… beware! Several PSers have reported having their gall bladder removed only to be told it was fine but choked by adhesions from their PS surgery’s internal damage. Did your surgeon give you a full and frank report? If this was true in your case, the adhesions could well be messing with other parts of your insides, I’m afraid. I’m no doctor, but I trust this short list of considerations helps you find relief. Best wishes!

  23. Joe

    I had PS surgery in 1989 at around 4-6 weeks old and since the age of about 10 have suffered severe reflux and stomach cramps. I too was regularly taken to doctors/hospital and had endoscopies, nasogastric tubes etc. after suspected stomach ulcers, Helicobacter Pylori and GERD, yet nothing was ever diagnosed. I also eat constantly, as a youngster I would often have dinner at home with my parents, then go to my friends and have dinner with them. I still rarely feel full and can be stomach-rumbling hungry half an hour after finishing a meal. Thank god I have a fast metabolism and appear in reasonable shape. The strange thing is I never thought nor has anyone ever suggested that it could be linked to PS.

    1. Fred Vanderbom Post author

      Joe, everything you have mentioned is typical of many of those who have had PS. The condition seems to be caused by an inherited high acid level in the gastric passage, and this continues of course, even after surgery. It speeds up metabolism, and inclines us to IBS, reflux, ulcers, and more. From photos on the blogsite you may have noticed I too have a slim build, and I can eat as much as I like and easily feel faint with hunger. Strangely, there seems to be a minority who have the opposite problem: they say they eat hardly anything but have an obesity issue. The few studies that have been done on this confirm the link between PS and gastric issues, and Facebook’s several PS Groups will give anybody interested lots of food for thought. But Fb is of course not scientific evidence! Most doctors seem ignorant of the possible long-term effects or don’t want to know about them.

  24. Alison Cormack

    My son Stuart, aged 22, died on 6th July from linitis plastica cancer. He was admitted to hospital after attending accident and emergency at the end of May on the advice of the doctor who had received the results of a blood test. The cancer had spread to the lungs and liver so treatment wasn’t possible, but he was kept comfortable and transferred to the Teenage Cancer Trust ward and then to the hospice. He never came home after attending the emergency room. Another name for linitis plastica is Leather Bottle Stomach. He had surgery for pyloric stenosis at 3 weeks, as his father had before him. It seems a coincidence at such a young age to die of stomach cancer having had stomach surgery as a baby. However other factors must surely have caused it, or a combination of genetic causes, or the knowledge would be there as pyloric stenosis is not very rare. He was 6ft 5in tall, and I read somewhere that can be a risk factor in itself. I would prefer to think that it was a random mutation or a genetic susceptibility. The young strong healthy body does not notice the early signs of change and with this particular diffuse type of cancer, endoscopy, which he had, gives a normal result, and it is so aggressive that it is fatal before symptoms show.

    1. Fred Vanderbom Post author

      Alison, I’m so sorry to read about the passing of your son Stuart, and the short time he and you all had to prepare for his life ending with a condition which it seems usually affects older people and for which there is usually no curative treatment.
      Although I have been following PS-related medical reports and personal stories for many years, I have never come across a suggestion of a link between PS and this rather rare and silent cancer, although having had PS does increase the risk of a list of gastric complaints including the more common stomach cancer. Regarding Stuart’s illness, you are quite reasonable in suspecting a link between these two stomach-related conditions. One day a fuller risk profile for PS-survivors will be established as we learn to better understand PS, the human genome, and no doubt other other factors such as tallness.
      Thank you so much for sharing your story with the readers of this blog. I have much to learn, and you have helped me significantly.

  25. Robyn O'Connor

    Good day Fred. I was the 1st baby girl to have the PS operation back in 1971 in South Africa. I have read your article with interest, as I suffer quite badly with spasms at the cut on my right side, which causes a great deal of discomfort. I have also suffered through out my life with stomach issues, especially IBS. Thought I would share

    1. Fred Vanderbom Post author

      Hello Robyn!
      Thank you for this Comment which describes an occasional (but we can be thankful, not common) problem after abdominal surgery. From what I have learnt, these spasms are likely caused either by nerves that were cut during the operation, or by adhesions (wild scar growth) that has been developing since it. This is unless it is can be related to certain foods you eat – irritable bowel syndrome. Nerve and adhesion damage are best treated by massage. There is some information about this on the web (and my blog has references) but it would be best to experiment yourself or to consult a therapist.
      I do hope you can get some relief. Best wishes!
      Just a footnote: I don’t think you’d have been the first South African baby girl to have a pyloromyotomy. Perhaps in one hospital or for one surgeon? The condition is quite common (2-5 in every 1,000 newborns), even in girl babies, and I have corresponded with at least one RSA woman who had the operation and is about my age (I had my op in 1945). Sadly, sometimes parents are told fibs by medical people wanting to reassure or impress – that’s a very human trait!

  26. Teri L Silva

    My granddaughter had PS surgery at 6 weeks. Now at 6 months, she is having feeding issues characterized by frequent spit up, gagging after feeding, watery stools, and occasional vomiting. Her formula has been thickened with rice cereal and formula has been changed multiple times (she’s currently on her 4th one which is Pregestimil). At this point, we don’t know what to do since her medical won’t pay for a 2nd GI opinion as the first GI MD is recommending an endoscopy. This poor baby has been a “trial & error” feeding nightmare since her PS surgery. The surgeon indicated that she will always have reflux. Is this true?

    1. Fred Vanderbom Post author

      My advice if asked would be to sign for an endoscopy. The problems you mention could be caused by any one or more of a small list of conditions, including GERD/reflux, an incomplete PS surgery, food sensitivities, and lower bowel problems. An endoscopy allows the medical advisor to settle on one of these or confirm symptoms of another problem. It’s not good to have a little one sedated but at least an endoscopy should not need a full anesthetic.
      About your question: yes, many or most of us who have had PS are living with reflux – often mild but always a bother. It’s caused by the high acidity that caused the PS and the surgery does not change this, it only opens up the passage.

    2. Robyn O'Connor

      Hi Teri,

      My daughter had PS surgery at 5 weeks old, and hasn’t had an issue since – and she is 13 years old now. She has never had an issue with reflux or vomiting, apart from a few normal childhood illnesses over the years. She is fit and healthy. By having the PS op, this is meant to STOP the relux vomiting.

  27. jinxisrandom

    I had surgery for PS when I was 12 weeks old (30 years ago), as it took the drs that long to figure out what was wrong with me. My urine had just started to crystallise and I was half the body weight I was when I was born.
    I has also had my test for PKU come back as not negative but also not positive, but became too sick to do another test.

    I was brought up on a PKU diet, have always been active, and never over eaten. However I am severely overweight. The drs cannot explain why… so reading this post made a lot of sense to me…
    I was diagnosed with IIH in 2013, and it just adds to the normal nausea and vomiting I sometimes get.

    I am booked in for bariatric surgery this year for a gastric sleeve, however they leave the intestines and pylorus alone for it. I’m now starting to rethink that I should be going for a bypass so that I can get passed it completely…

    Thanks for your post, given me lost to think about!

    1. Fred Vanderbom Post author

      Thank you for your post which gives us readers here yet another take on the trauma parents far too often live through to get their newly born pride-and-joy diagnosed and treated before too much collateral damage is done to them. And it seems that the nightmare has not yet ended for you. Best wishes as you seek medical advice that is well-founded and the most likely to help you with your ongoing challenges! Bariatric surgery is enough of a jungle with uncertain outcomes, let alone for someone with your legacy.
      I’d like to commend to you Facebook’s “Pyloric Stenosis Support Group” (“closed”, meaning not readable unless you’ve joined) which has brought together people with all kinds of PS experiences, including about 30 who’ve had or are considering weight control surgery of various kinds.

  28. Irene Nardone

    I thought you might be interested to hear my story.

    I am an identical twin, I had a pyloric stenosis operation in December 1963 at the age of 3 months. My sister didn’t have PS but my brother born in June 1967 did, he had his op at the age of 6 weeks.

    We both have a vertical scar.

    I went on to have 3 children and only thing that I suffer from that I could possibly associate with PS is heartburn.

    We don’t know of any other relatives who have had PS and between my brother, sister and I we have 8 children none of whom have been affected.

    1. Fred Vanderbom Post author

      Thanks for posting your story, Irene. I’m sure I’m not alone among our readers in finding your tale intriguing!
      What a confused trail PS left for your parents and two of their children… suggestive of a genetic cause but leaving no known traces of this before or since! From this we might well wonder if there were “environmental” factors at work: my mother’s stress was quite likely what triggered my PS, aided by the high acidity in my family which bothered my mother and continues to bother me and some of my children. Your heartburn would point to that in your case too, perhaps?
      The vertical scars (midline or right of it) were far more common before the later 20th century, when the transverse and then umbilical and keyhole surgery access took over. However, several parents on Facebook have reported their children also carry the vertical scar. I’d be interested to know in which country you and your brother had their surgery, as the USA moved away from the vertical access from the 1930s on.

  29. Duíbhír Ui Maólmmhuaídh

    Our son was born relatively large (10lb 6 oz), unsure if his size was relevant. By day 13 he started vomiting, took him to family doc, was fobbed off… so took him to ER where he was diagnosed as having ps. They had him under observation for 2 days, on the 3rd day he had surgery… small 2 inch scar… was eating normally within 3-4 days… our son is now 20 yrs old in college.
    Ill effects? …he cannot stand to be tickled on or near the scar as he finds it painful… acid reflux is a daily problem… I am glad he has had such a good outcome to his surgery, as I had my own ps surgery 50 years ago… the outcome was not as good, and the scarring, from pubis to sternum, did adhere to my organs.

    1. Fred Vanderbom Post author

      Thank you Duibhir for posting something of your experience of PS here!
      You have certainly had a close encounter with it, and with the steady improvement in the knowledge and skills of surgeons. But it’s also true that it’s often a matter of good luck whether we are troubled by the adhesions that are almost inevitable after bowel surgery.
      You were unlucky to have such a large operation for your PS 50 years ago: it should not have been necessary to open your whole abdomen to correct PS. It is possible that something more serious was diagnosed, but it’s surely normal to start with a small opening? I had my operation in 1945, and although the scar is untidy and ugly (as all infant surgery was in those times) it is only 4 inches long and 2 wide – this was about the the best possible then and the length is still the standard for open PS surgery today.
      It is not a surprise that (as I understand) you have a serious problem with adhesions affecting your digestion and comfort, and sadly there is not much that will give certain help in this. Adhesions must be one of the most unpleasant side-effects of having had PS. My digestive problems are minimal in comparison!
      My best wishes to you and your son.

  30. abigail flanders

    My son has had two operations for pyloric stenosis and has acid reflux since the age of 3 weeks old. He is now 4 and still is vomiting projectile, he gets a lot of winds just like a baby again. He has asthma as well. His tummy is always swollen and his always complaining of pain. I have had him by many DRs and still no help what should I do should I be worried. I had him at the dr yesterday and she refered me to the specialist. is there any help as to wat I can do.
    please help.

    1. Fred Vanderbom Post author

      My apologies for the tardy response, Abigail: I’ve been on mobile-only for a few days, and this doesn’t give me full internet and blog access.
      The things you mention here (two operations followed by various gastro issues since) would all add up to a pointer to adhesions. Your doctor(s) have been fobbing you off, as many children present with a list of tummy problems, many of which are passing, and there’s even a medical term for undiagnoseable but harmless GI symptoms.
      It’s clearly high time for someone more specialised to try to help your son, just in case there is something either nasty in the long-term or (we’d hope) treatable that’s causing his misery.
      Adhesions are a diagnosis nobody wants but after 2 operations and with the symptoms you mention they’re quite possible. I encourage you to learn what you can from the web to inform you about their origin, effects and treatment options – if you’ve not already done this. I’ve also written a few posts about this subject on this blogsite.
      I do hope that the medical people can help your son and you to reach the end of this story soon. Best wishes.

  31. Anna

    I want to thank you for writing this article. I had pyloric stenosis surgery 3 months after my premature birth. I have never had any major problems into adulthood other than I cry when I vomit, I have to take probiotics to not get the stomach bug and I do have a scar. However, I am so tired and have been my whole life. I have wondered if it is because of this past condition. I heard that vitamin b 12 is hard to absorb in the tummy if one has had surgery in this area. I have gone to docs to discuss the exhaustion and this has never been discussed as a possible reason. It would be interesting to know though. Thank you for posting this article.

    1. Robyn

      HI Anna,

      I had the op in 1971, and have always suffered with my stomach, IBS etc. I am gluten intolerant, wheat etc. I also developed several autoimmune diseases… was hospitilized around 8 years old – for a week and Doctors could not find out what was wrong with me.

    2. Fred Vanderbom Post author

      Thank you posting something of your story here, Anna. It adds to the record here of many and varied experiences with this rather common but little understood condition.
      In my study of PS-related matters for this blog and several social forum sites, I have not found anything like what you raise here, although I certainly know about it in my own case! Let me explain how I’ve come to link tiredness with having had PS and you can draw your own conclusions… and of course I’d value knowing what you think.
      I remember that as a kid in my first years at school my mother used to keep me home sometimes “because you get so tired”. Lack of energy has continued to affect me through my 72 years, but not to the extent that I could not function within the normal range of limits or often felt utterly exhausted: I just don’t have the energy of some and usually run out of steam well before the end of the day!
      My mother was stress-prone, which is a well-known PS-trigger, and I’m sure that this is most likely triggered my PS. I am also very stress-prone, and I’m sure that stress affects our energy level. It is also a trigger for a high gastric acid level (reflux, IBS etc) and a high metabolic (food throughput) rate, which are also definitely PS related. A high metabolic rate would of course affect the body’s ability to pick up trace elements, so vitamin deficiencies must be linked with this.
      Btw, premature birth is also one of the PS risk factors!
      Most doctors sadly but understandably don’t have the time or detailed knowledge to explore PS related issues. They should check with you what other factors could cause your tiredness: e.g., diet, weight, stress, age, medication, known or health issues, etc.
      Life can in some ways be a puzzle, but for me understanding the possible and likely ramifications of my first 10 days has clarified a lot. I hope you also can also make some connections.
      Best wishes!

      1. Robyn

        Hi Fred,
        My daughter was born in 2003 – premature baby – and had PS diagnosed at 4 weeks old – I had PS diagnosed 4 weeks after my birth in 1971. PS is hereditary.

  32. Keryn Filer

    I’m so glad I found your blog and got to read all the comments. Finally things are starting to make sense. My ps story – I was born 1991 and was diagnosed with ps at about 4 weeks. My poor mother went through many accusations from so-called medical professionals trying to tell her that it was her fault that I was constantly vomiting and that she must just be a nervous mother and wasn’t feeding me properly even though she was a very experienced nurse and I was her third child. It took my dad searching medical dictionaries to find out what was wrong with me and then me projectile vomiting all over the doctor’s suit for them to take my parents seriously. It wasn’t till recently that I thought my dietary habits/issues were side-effects of the ps. I am overweight even though I play very active sports and eat healthy; I have always been overweight and have never been able to shift the weight. I also get really bad reflux whenever I eat anything. Also, when I was 18 I ended up in hospital with severe pain and vomiting and none of the doctors could find anything wrong with me. Now from reading all the different comments and your blog it’s really making me think that ps is the cause. I was wondering: is there anything I can do to relieve the symptoms?

    1. Fred Vanderbom Post author

      Keryn, the links between PS and what you’ve had to put up with seem very clear, although most medical people don’t want to acknowledge this. Not only the information in and comments on my blogposts bear this out: Facebook has several very large “closed” (registered members only) groups devoted to PS issues, and the possible and likely long-term effects are the main subject after some even more pressing baby-related issues.
      You are among the PSers who struggle with overweight, and there are many others who struggle to add to their weight. Both seem related to (1) the body build we inherited, and (2) our digestive problems who seem to us to be linked to what gave us the PS or what the surgery did to mess the digestive process up.
      What to do?
      Most doctors we ask are not interested and will fob us off. So don’t expect medication or helpful advice! Some naturapaths may give more help.
      Self-knowledge and self-management are what I’ve found many of us do – as best we can. If necessary keep a diary of diet and results, learn from this what works best and what to avoid. This will likely be somewhat different for everyone. Stress, acidic foods, and some roughage foods are what I try to avoid, but as I can’t expect to live well without some stress, and without any citrus/berry foods and healthy greens like cabbage, spinach and kale, I live with my irritable bowels’ protests quite often. All the information online tells me I can grow old despite irritable bowels! I also keep my intake of red meat very low as it makes me feel bloated (white meat like chicken and fish are fine).
      I also find it helpful to stay tuned to the main PS discussion forums on Facebook and Patient.
      Best wishes!

  33. Trixie

    Hi, my son was misdiagnosed with pyloric stenosis at eight weeks old and was eventually rushed to hospital by ambulance where he was put on a drip for several days before the operation could be performed. I remember hearing someone at the hospital say his body had begun attacking itself due to malnourishment? He is now nearly eleven and has dysgraphia and fine motor skill weakness. Could these be connected to what he went through all those years ago?

    1. Fred L Vanderbom

      I have copies, Trixie, of several medical reports linking severe and/or early malnutrition (as you mention and as happens all too often when PS is poorly recognised and treated) with brain damage, esp. in the motor skills, coordination, and intelligence parts of the fast-developing brain. Lots of doctors and parents will tell you of all the Py babies who grew up to be geniuses – but most PS infants are helped before damage occurs! I have lived well and happily for 70+ years but lag well behind my 4 siblings in these ways!

  34. Sue Stuart

    I had pyloric stenosis undiagnosed, until l was 8 months old. My Mother entered Tricillian due to my constant projectile vomiting where the doctors recognised it was PS. I was operated on, immediately. My weight at one year old was equivalent to a six month old. I am now 68 years old and have had four babies and no side effects from PS.

    1. Fred Vanderbom Post author

      Reality and good news for those who find and read this post! Thanks for sharing it, Sue. Due to my special interest in this subject, you also help me remember that the great majority of Py-babies are it seems quite easily able to put behind them their rough start in this life. Your first 8 months as you outline them were unusual, but many PS parents find the often grossly extended diagnosis period extremely frustrating if not traumatic for the rest of their lives. Let’s hope that the good century of infant PS being effectively treatable has also seen growing awareness of PS’ various symptoms.

  35. Joanna

    Hello Fred, I luckily came across your page after an Internet search. My son just turned 6 yrs old and has had ps surgery at 4 months old. He has been diagnosed with autism and every time that he has to have a bowel movement he’s in pain. This has been a constant struggle for him and our family since he was in diapers. I can’t remember at what age exactly this started happening. He will have a bowel movement maybe twice a week, sometimes even just once a week. He cries and complains that his tummy hurts really bad, he’ll sit on the potty for a while just trying to release his stool with no luck. It’s very heatbreaking as a parent to see him go through this all the time. His 2 year old brother will go everyday with no problem and he tells me, Mom, it’s not fair he can go to the bathroom and it doesn’t hurt him, why does it hurt me so bad? I have no answer to that unfortunately. We’ve tried everything the doctors tell us: that he is just holding his bowels and he’ll grow out of it. I’ve tried different medications and home remedies: none have seem to help. Tried knocking off food that seems to constipate him and still the same thing. I have just changed his doctor for another opinion. It’s a struggle for our family and I’ve always wondered if his ps surgery has had anything to do with this. I’ve mentioned it to a specialist in the past who said it has nothing to do with it. I just can’t seem to think different. His struggle has been a constant battle and is starting to affect school now. This can’t be normal & I’m desperate for an answer. Any suggestions or comments from anyone would be greatly appreciated.

    Thank you!

    1. Fred Vanderbom Post author

      Hi Joanna,
      My heart and the sympathy of many of our readers of your Comment are with you, be assured of that. But that doesn’t even help overcome the sad and complex trouble your son and you all are in. Let me make a few comments, and I very much hope other readers with something to help you do the same.
      1. Autism and PS are not directly related, but autism happens slightly more often to Py-children, as do any of a fair list of malformations and conditions. It is believed possible that either faulty genes and/or faulty development can cause this. Nothing we can do about that, but I encourage you to talk about the facts with your son in an age-appropriate way and by anwering his questions as openly and honestly as you can (something some parents find hard, as I know from mine).
      2. PS and the surgery to remedy it can each affect the working of the gastro-intestinal (GI) passage. I have blogged about this, and have the medical documentation to support it, but many doctors simply repeat the mantra they learnt in Med School: “Apart from the several always possible post-op complications, PS has no longer-term effects”. They don’t have the time or memory to spend more time on this.
      3. Doctors recognise a label known as “Functional Abdominal Pain Syndrome” which covers a long list of GI symptoms which tests, drugs, diets, and lifestyle changes do not seem to explain or remedy. The GI tract is recognised as the most complex and unstable part of our body. We should be thankful this sydrome is not fatal, and will just have to live with it.
      4. From what you mention, you have tried diet and medications. Two more possibilities in case you have not tried these: 1) learning keeping a careful diary of all food and drink intake and your son’s bowel output, and 2) alternative medicine: a naturopath recommended by somebody with experience whom you trust (because some are much more “successful” than most), and/or a chat with your local friendly food health store staff.
      5. If it is possible (sensitive and helpful), help your son to see “the big picture” – it is estimated 40% of people in Western countries have GI issues including various kinds of IBS and (worse) GI malformations and IBD. At his age many children find it hard to care about anything beyond their own troubles. I had serious psychological issues due to my PS and it took me near half my life to really take to heart that 1) I’m a survivor, 2) I’m not alone in having problems, and 3) hearing stories of others with more serious problems makes me thankful despite the painful areas of my life and story.
      6. I don’t think your son’s symptoms suggest adhesions, but read up about them online or my blog just in case. Adhesions result from most abdominal surgery and in a minority of people bring big trouble, but usually more at the upper end than at the end of the food train.
      7. If you are a Facebooker, join the “P S Support Group” and post your son’s story: there’s a bigger PS community there than anywhere else I know.
      I trust some of these perpectives help you and your 6 year old. Best wishes!

  36. Joanna

    Thank you very much! My husband and I really appreciate the time you took out of your day to give us all your suggestions and information regarding the issues we are facing. I’ll be sure to comment in the near future with how things are going for us 🙂


    Hi. I posted on here a few years ago about my own experience of pyloric stenosis – I was very ill with it directly after I was born but at around the age of six weeks, I suddenly got better without any surgery. Then the disease recurred when I was nine and to cut a long story short, it took months before the doctors finally confirmed what my parents had said all long, it was PS again. So I had the operation and got better and went on to have three children and always considered myself fairly healthy. I have always been interested in nutrition and cooking, especially once I had children, and have always eaten well, I thought. From my late thirties, though, I began to have various immune system problems, which I managed by carefully eliminating things from my diet which triggered problems (coffee was a major culprit and sadly, one of the things I loved most!). In the last few years, I have been diagnosed with gastro-oesophageal reflux disease – GORD or GERD, depending on where you live – and it has been an absolute pain, in more ways than one. I have tried lots of things – cider vinegar, HCL tablets, probiotics and more. None of them helped in any greatly noticeable way and my diet was exemplary, if I had eaten any more green stuff my ears would have grown long and fluffy and I rarely ate anything sweet like cake or desserts, or even that much fruit. Anyway, to finally get to the point, I then discovered the website of Norman Robillard, I will include a link. Dr Robillard is a research microbiologist who has investigated digestive problems like IBS and acid reflux and on his website, you can see his conclusions and recommendations. I have followed his instructions and it is working, my acid reflux has diminished to occasional instead of a constant daily presence, and only if I forget and don’t follow Dr Robillard’s advice. Within three days of following his Fast Tract diet, there was already a hugely noticeable improvement and lessening of the acid reflux and that encouraged me to continue, because that first two weeks diet is fairly austere! You can relax that a little, and by trial and error, after the first two weeks, but revert to austerity again if symptoms worsen because you have overdone it. If you despair of your acid reflux symptoms ever stopping, it might be worth a try. We are all different so perhaps not all things work for everyone but if you can keep the diet up for the first few days, a lot of people seem to quickly notice an improvement. Here is the link:

    1. Fred Vanderbom Post author

      Hi Julie,
      I have been away on holidays so a belated response – and my apology for my tardiness.
      Thank you for remembering this blog resource and giving us an update on your journey.
      Thank you also for the recommendation of the Fast Tract Diet: I am sure other readers will be interested to check it out, and I’m also going to do that, as my IBS troubles (in common with many others’) have only increased in recent years.

  38. Pingback: Can Pyloric Stenosis come with long-term effects? | Stories from the Survivors of early Surgery

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