Tag Archives: diagnosis

Pregnancy post-Pyloric Stenosis

One of the most visited posts on this blogsite deals with how having had infant Pyloric Stenosis (“PS”) affects pregnancy.

This question must be answered by looking at several aspects –

  • Will the scar hold?
  • What do I need to know about adhesions?
  • Could I pass on my PS to my baby?
  • Reliving the past – and the trauma

Will my scar hold?

The short answer is Yes!

Our skin varies, as do our stretch marks, as do our scars.  Your scar may stretch and it may change in appearance, perhaps permanently, perhaps not.  Or it may stay much the same, which will put extra stress on the surrounding skin and underlying tissue of the stretching abdominal wall.  This may create a different pattern of striae (stretch marks caused by the dermis or outer tissue tearing) from the usual.  So there are several unpredictable possibilities, but one thing does not happen: your scar will not rupture.

When a surgical wound is healing it can rupture and need repair. Inadequate repair of the underlying tissue can cause a post-operative hernia which will sometimes heal without further intervention, sometimes not.

C 16w 2010But once scar tissue has matured (losing its redness takes a year or two) it is harder and tougher than normal tissue and far less likely to rupture than the surrounding tissue.  The stretching of pregnancy may cause itching, pain, or a tearing feeling, especially in the scarred area, but this won’t affect your baby, womb, or pregnancy, and your doctor can promise you this!

This is how one mother answered this question –

My niece has similarities to your situation, here is what happened with her.

Nothing bad happened to her baby and he was able to grow just fine – your scars will not affect your bub.

As her baby grew it stretched her scars causing shooting pains, the pains were only every now and then.  They only caused her to worry because she thought it may not be the scars and maybe it was something wrong with her baby.

Her scars are right through stretching right down the middle of her stomach in a T like form: she had an operation when she was born and then again when she was 5 and her scars are attached to her muscles.  Her stomach also didn’t grow very big compared to most pregnancies, so if your belly gets bigger than hers it may cause a bit more pain than ‘every now and then’ (but that’s just a guess based on no medical knowledge).

Hope this sets your mind at ease, both you and your baby will be fine. (– anon)

What do I need to know about adhesions?

All abdominal surgery triggers the growth of adhesions, a web like formation of tough scar tissue that develops between areas that have been exposed, cut or otherwise affected by the operation.  The organs inside our abdomen don’t like the fresh air and drying that occur during open surgery, nor the gas that’s used to inflate the abdomen for keyhole surgery.

A laparoscopic image of adhesions between the right diaphragm and liver

Everybody develops adhesions after surgery: these link different abdominal organs (e.g. the stomach and gall bladder or liver) or they link one or more of these with the inside of the abdominal wall.  This is noticed in only a minority of cases, but when adhesions make their presence known it can be very troublesome, causing pain and snaring, choking or otherwise disrupting the normal working of our abdominal organs in the affected area.  Adhesions are hard to treat, as surgery to remove them in affected people will inevitably trigger the growth of more of these nasty webs. I have written about adhesions several times – use the Categories or Tags search boxes to find them or go to Dr Google!

Pregnancy may make a woman with PS in her history aware of adhesions that had not troubled her before. She may feel pain or tearing in the region of her scar as her body changes; although this is uncomfortable it is a normal process and not hazardous, and will probably be a temporary although added discomfort of pregnancy.

Because each pregnancy has its own unique character in lots of ways, the pain and tearing sensations of adhesions can come with any but not usually all of her pregnancies.

The best advice for dealing with adhesion and scar pain and itching is what is usually recommended for pregnancy anyway: lots of lotion and lots of massage – which will help some and not others. The end result of the 9 months will we trust be well worth the discomfort and pain.

This is how one mother answered this question –

I am a 36 year old female, with 3 children.  I had my pyloric stenosis operation in 1974, at 6 weeks old.  My scar is now about 5 inches long, a cm wide and has 4 ‘stitch’ marks down either side.  It sits off centre to my right side, vertically.  And without a doubt it is attached to my abdomen at the bottom of the scar!  My mum said it was just about two inches long when first done.

Throughout childhood I complained that my ‘scar’ hurt and this was dismissed by the GP as part of growing!  At 18 I had my first pregnancy, and had a dip in my stomach as it swelled, with a feeling I can only compare to being jabbed with a pin.  It wasn’t so bad with my second child a year later, although the dip was there as stomach grew.  I had my third and last pregnancy at 33 years old, and my last baby was bigger than first two.

I collapsed with severe pain in my middle of right side 2½ years ago, and initially was diagnosed with kidney stones, but the urologist did not think the stones were big enough to cause the pain I was in.  (They were smaller than grain of rice.)  I am now awaiting an endoscopy with a gastroenterologist to see if I may have adhesions.

My scar is definitely pulling upwards towards my right ribs and I am rather unhappy that I have had to suffer for this long to get any answers!  I have been back and forwards between the specialists 4 times now as neither would pin-point pain, but if I were able to ‘operate’ on myself, I am convinced I could put my finger exactly where my pain is!  The pain is at best mild, but can get worse, usually 30-45 mins after eating.  It is constant, but I have learnt to recognise, offset and control it with painkillers.

I have been lucky that none of my children inherited the pyloric stenosis.  I am convinced that my life time of constant stomach problems, cramps, constipation, stabbing pains, nausea, etc etc has been a result of this condition, and wouldn’t wish it on anyone!  Good luck to you all on getting it sorted, and insist on help if your child continues to suffer. (– Kaz)

Could I pass on my PS to my baby?

This is indeed quite possible, and because of the quirkiness of genetics a mother who has a PS history is more likely to have a Py-baby than a father.  It is well-known that 4-5 boys have PS to every girl with it, but part of this means that those girls who do have it carry stronger PS-carrying genes.  Not nice…

The risk is unpredictable, as infant PS is “multi-factorial” and can be caused by non-genetic factors – labelled “environmental” in the medical world, although PS is never caused by what most of us think of as “the environment”!  A woman who belongs to a family tree with another (possible) case of PS is at higher risk than one with “one-of” PS.  So the likelihood of a PS mother having a PS baby varies from almost nil to about 20% according to the several studies that are freely available online, and some few mothers have reported passing on their PS to most or all of their offspring – up to 4 children in a few cases I have on file!

The key thing to remember is: everyone (mother or father) who has had PS can and should be better prepared to give prompt and the best possible care for their new-born Py-baby!

This is how one website answered this question –

  • Pyloric stenosis is the most common infant surgery in the United States after circumcision.
  • Pyloric stenosis reports in the United States have shown as few as 1 case per 3,000-4,000 live births to as many as 8.2-12 cases per 1,000 live births.
  • In general, pyloric stenosis affects approximately three out of every 1,000 infants.
  • If a child with pyloric stenosis is female:
    the likelihood of having a future son with pyloric stenosis is one in five.
    the likelihood of having a future daughter with pyloric stenosis is one in 14.
  • If a child with pyloric stenosis is male:
    the likelihood of having a future son with pyloric stenosis is one in 20.
    the likelihood of having a future daughter with pyloric stenosis is one in 40-50.

Reliving the past – and the guilt and the trauma

Sadly you won’t find this information on the PS-pages of our hospitals’ and paediatricians’ websites …

But having followed what not a few new parents have reported on internet social forums such as BabyCenter, Facebook, MedHelp, Patient, and Reddit, it is abundantly clear that some who have PS in their story struggle with guilt and PTSD, although thankfully not in a life-threatening form.  How many and how severely people are affected in this way is impossible to estimate, as this matter has not been given any academic or statistical study that I have seen.

The now adult Py-baby may find during pregnancy that they (father as well as mother) are painfully reliving their own past, fearful of passing their PS on to their new baby.  It is now known that the fears and deep emotions that many parents of a PS baby experience and convey to their growing child in story and emotionally can affect the in many ways exciting months leading up to the birth of a new person.  In times past, the traumatised parents would keep their story to themselves, which will often affect their child even more.  Sensitive and wise openness is far preferable to the old-time “stiff upper lip”.

Several things will help –

While most couples awaiting parenthood have never heard of PS, those who “own” their PS story will be far, far, far better prepared.  All infant surgery runs a high risk of a chain of unhappy events, including:

  • the horror of an eagerly awaited newborn infant vomiting itself to death;
  • insensitive, even haughty doctors who dismiss the fears and homework of new parents and draw out diagnosing their infant’s problem;
  • the hazards of anesthesia and surgery, increased in the very young;
  • post-operative complications and frustrations;
  • worries about long-term effects, usually brushed off by doctors but well-founded despite this.

Having recognised and to some extent worked through most of the fears and uncertainties is a great bonus.

Parents with a PS history also need to face the possibility of misgivings and guilt feelings that won’t be justified and will be unproductive, but may be very real and therefore also need to be processed.

As well as the above reasons, PS survivor parents preparing for the birth of a baby may be stressed by the possibility of bringing another “imperfect and damaged person” into the world, and by memories of the utter powerlessness inevitably associated with submitting one’s long-awaited newborn to a medical team and their procedures.

But PS parents will also know better than other parents that despite the above, PS is recognised throughout the medical world as the least un-desirable of all the conditions of infancy that usually require surgery.  The surgery by today’s standards in minor and routine, and almost always quickly effective. Any immediate after-effects will usually clear up within weeks or months, and any long-term after-effects (although usually not acknowledged) are manageable and never life-threatening.

The bottom line: I survived, and my baby will too!

Here follow four people’s observations on this subject area –

I am not so much nervous about labor as I am about being the best mother I can be and being the mother she needs.  I have a lot going through my mind right now.  My main concern is how horrible I will feel if she inherits pyloric stenosis from me.  Because of it I had to have surgery at 3 weeks old, it caused me to be so weak from not enough nutrients that I no longer had the energy to cry.  I am terrified of having to go through what my mom went through.  I keep trying to tell myself that she will be fine and everything will work out, but I am still scared... (– Jessica)

I used to work on a children’s gastrointestinal ward in London and would often see this. It’s a small op as far as an adult is concerned, but for any mum and little quite major. Make sure any questions you have going round in your head now, you write down. Make sure you ask all you want to ask, don’t be afraid as no question is silly, and they would rather explain to you what’s happening than have you confused and worried. (– Rachel)

I almost died before I was even born.  After my mother’s water broke and she was in labor for several hours, I had a bowel movement inside the womb – gross! – and the doctor said that was sign that I was in distress and not getting any oxygen so he performed an emergency C-section.

Then after I was fed for the first time I vomited it right back up.  And I kept vomiting after every feeding. I was diagnosed with pyloric stenosis… So I had to have surgery when I was just a few days old.

So my parents almost lost me twice before I was even a week old, and it’s easy for me to see why they – my mother especially – became overprotective parents.  And they passed that overprotectiveness on to me.  Even though I don’t have or want kids of my own, whenever I’m around kids I’m hyperaware of what’s going on around them.

I grew up knowing about all of the horrible things that can happen to children – rape, kidnapping, murder, etc. And it wasn’t just “stranger danger either. ( – Holly)

I had the surgery as an infant and asked in my first pregnancy if my baby could have the same problem.  I was basically laughed at so I never thought of it again.  I was definitely agitated over that because I would have always watched out for it.  It was hard just thinking about my baby having an IV/surgery and I really broke down when we got to the children’s part of the hospital and I saw the crib/bed.  After that though I was fine.  My DH and I held him for 2 days straight – we took shifts at night.  The hospital was so thorough and made us feel like Jacob was in great hands. (– anon)

Recommended: my previous post on this subject –  https://whatwewishwedknown.wordpress.com/2017/05/15/an-abdominal-scar-and-pregnancy/

 

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Why your doctor may delay diagnosing Pyloric Stenosis

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

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

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

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

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

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

Pyloric stenosis: dealing with doctors who delay

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

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

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

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

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

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

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

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

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

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

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

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

Are Pyloric Stenosis problems history yet?

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

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

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

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

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

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

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

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

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

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

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

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

Two forms

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

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

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

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

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

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

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

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

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

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

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

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

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

Networking after pyloric stenosis (3): Diagnosis

Parents of babies afflicted by pyloric stenosis (“PS”) are routinely assured that after surgery their little treasure will be “a different (and hugely improved) baby”.  Often this is immediately true: instead of a baby vomiting him- or herself to death, PS babies often thrive and quickly reach the top of their percentile range.

But of course this is so only if the operation was –

  • without complications (like infection or a hernia), and
  • successful in opening up the pyloric passage (which it usually but certainly not always is), and
  • if the baby is not left with years of GERD (reflux) related problems, a rather common outcome.

Many with a personal experience of PS, whether as parents or survivors, do have ongoing problems –

  • during the immediate recovery period,
  • during the child’s first years and sometimes continuing lifelong, and/or
  • in adulthood.
  • These people often resent that the medical advice they received
  • denied these possibilities,
  • left them with false expectations that” all would be well”, or
  • skirted over the future  possibilities embedded in a list of “to be mentioned” items the parents had to acknowledge and sign before surgery.

And when problems did arise (sometimes within days, sometimes after some weeks or years), the typically rather obvious link with abdominal surgery was denied despite several research reports to the contrary.

Diagn palp.jpgAmong those who report having had a bad time with PS however, no group is as numerous or angry as those who experienced a diagnosis debacle, and in this post we listen to just a few of these parents, again from the several PS Groups on Facebook.

A L was born about 1985 and had a son in 2009
I was born with PS and my second child, a son, William was diagnosed with it at 4 weeks.  Luckily, having had it myself, I was well aware of the odds of my child having it, especially a son.  The pediatrician as well as the ER wasn’t extremely willing to diagnose PS until I advised them that I had also had it.  Prior to that, I got quite a bit of attitude and snubs…
It is very disturbing to me reading others’ posts that something that is so easily rectified is so easily dismissed.

E D, born 1984
It feels so nice to know I’m not the only person to have had this condition!  Even now doctors, midwives etc don’t know what PS is: awareness needs to be raised!  I was one of the unlucky ones and had my operation in 1984.  My mum had to fight with the doctors as they wouldn’t diagnose me with PS as I was a girl!  I had my operation at 3 months when my weight was lower than my birth weight – thankfully I’m here to tell the story!  Have had two little boys and thankfully neither of them have had it!

arrogant doc5L G – son born 2014
My son had PS at 5 weeks.  The doc said it was reflux, even though the health visitor said it was PS – because he was born at 36 weeks he said he couldn’t have it that young.

M G – son born 2010
My son was diagnosed at 5½ weeks old with PS in 2010.  It took doctors 5 days and numerous times of me arguing till I was sent to a new hospital to find out what he had.  My son almost died but had his surgery and soon bounced back.  I am so thankful he is better.  But I wish hospitals and doctors would check babies closer for this kind of condition instead of it being fobbed off as reflux all the time.

C L – son born 2014
My son had PS and had his operation at 5½ weeks old after me refusing to leave the doctors as they just kept prescribing gaviscon for reflux.  He had key-hole surgery and was instantly better!
Our surgeon told us our son had been left that long his body had used all its fats and was about to start using up its muscle.  Thank God he was seen when he was.

M K – daughter born 2013
self-harmMy daughter, now 10 months old, had her surgery at 5 weeks old, was misdiagnosed by 5 different doctors over a 5 day period and had 2 negative upper GIs… she weighed 6 lbs at birth and at 5 weeks old was 4lbs 10oz after no doctor would test her for PS.  We almost lost her from dehydration before I could find one that would… all because she was my second born daughter and they said [that the] odds were PS was not the cause for her projectile vomiting!
She is now experiencing bad reactions to milk.  Took her to the doctor and they had no explanation other than possible allergy symptoms from sensitive stomach MAYBE related to her having pyloric stenosis as a newborn.  But they have no clue.  I thought it was all behind us, as those few weeks back in May were the worst I’ve ever experienced.

D M – son born 2014
My son is 16 weeks old and had surgery for PS at 4 weeks after 3 days in a row of me going to the doctor, 3 days in hospital and then still saying it was a virus!!!  Long story short he had his op but still has some ongoing issues.  I have joined other groups and it is clear to see a lot more research needs to be done for PS.  The whole “normally happens in first born sons and everything returns to normal after 48 hours” is just not true in all cases!!!

F M son 2014
My poor boy has not been able to feed for over a week due to “reflux”, the hospital said.  I had doubts and have had him here 3 times (currently back in as we speak).  Finally after him losing 9 oz in 3 days, they have listened to me which I tried to get them to do the first time I brought him in – which was a week today.  I have said all along I thought he has pyloric stenosis but they brushed it off as reflux.  Brought him back today as no improvement with gaviscon and ranitidine.  They did an ultra sound and what does he have?  Pyloric stenosis like I said 1 million times.  My poor boy has been ill and sick after every feed, massive amounts and then made constipated with gaviscon and it’s not even f***ing reflux.
I am so angry it took 5 minutes to diagnose today and should have been done last week but they fobbed me off.  Now having to go to another hospital so he can have surgery a s a p to have the issue fixed.  Can’t believe they let it go on so long without listening to me and checking for this earlier, my poor boy has been through hell because they messed up and he has been made worse because they didn’t believe me.  Upset, angry, and relieved we finally have it confirmed.
Ladies, if you think something is wrong don’t give up, and keep pushing them… if I hadn’t we would have been sent away [for another week] and he would then have been treated for cow’s milk allergy, and God knows what could have happened because he hasn’t been getting anything from his feeds.
Can’t believe they wouldn’t listen to me and I knew what was wrong.

J S
arrogant doc4I had pylorics, so did my son and 16 other family members; unfortunately one did pass away but that was back in the 50’s.  And doctors are still saying it’s not hereditary.  lol  I think our family has proved them somewhat wrong. lol
Total fools!  The thing is, it was on my side and my partner’s side, as I said, 16 members, but [my son was] still diagnosed with gastro reflux for 3 months even with this history.  Total joke!
16 members across the family had PS, and we saw the symptoms straight away.  This stems over 55 years: my son is the most recent case and I was the 10th member but female, so not diagnosed as soon as usual.

L S – son born in 2007
My little boy had pyloric stenosis.  He was diagnosed at five weeks after a hideous time of not being taken seriously by the doctors.  I went back for the third time and refused to move unless they saw us again and self-diagnosed.  Finally they took me seriously.  Literally moments after his op he was a different baby.
He’s seven and a half.  Very pleased, yes.  It’s taken this long to talk about it though.

E T – son born 2014
My son is 2½ month old and 2 weeks ago we noticed small changes in his behavior.  Not as many poopy diapers, acting colicky, constantly hungry like [he was in] one really big growth spurt.  He was never a spit up baby, but a week ago he started projectile vomiting.  We went to his pediatrician twice, only to be told he had a very nasty virus.  We were told to give him clear fluids for 24 hours and the virus should work itself out of his system.  He then started vomiting blood… lots of blood-filled vomit.  We went to an after-hours clinic and they sent us to the hospital because he was dehydrated.  We went to the hospital, they did a blood panel, x-ray, administered fluids via IV, and sent us home with zofran.  The next morning he was still vomiting blood so we went back to the hospital and they took an MRI and discovered he had PS and referred us to a children’s hospital for the operation to fix it.  During the operation I cried, but I cried more after the operation since he had to wait 8 hours before he could eat anything and could only have ½ ounce and was crying uncontrollably because of hunger pains.  My heart hurt for him.  He is doing much better, being 4 days after his surgery!

Doctor woman makes a warningS Y – self born in 1985 (& father 1953)
I was born in Dec 1985 and by the second day I was projectile vomiting every time I was fed, and sometimes after my parents thought I was done I would go again for another round.  My parents both knew that something was wrong with me, my dad remembered his parents telling him what happened with him (they thought he had PS but it turned out to be a tumor bouncing up and down in his stomach)… My parents went to my pediatrician and he said that there was nothing to worry about – all babies throw up.  Then they went through 3 other doctors and they got the same story and a few even told them that the likelihood that I had PS was slim to none, this went on until I was 15 days old and my mom and dad decided to take me back to the hospital I was born at, went into the ER and found the doctor that saved my life.  He was a pediatric emergency surgeon.  I was in surgery within a few hours of being admitted so that they could get all the tests and get me prepped for surgery.  By this time I had lost 1 lb, which was huge considering I was only 6 lb 5 oz.  I was released just in time for my very first Christmas.
After my parents recuperated from my ordeal they talked to that surgeon and found out that if they were to choose to have another child that child most likely would have the same thing I had.  They talked and couldn’t go through it again.
My dad had his surgery in 1953…

The awful stories above would be understandable if PS were a rare condition.  But it is not.  The incidence varies a bit, but in developed countries ranges between 2 and 5 in every 1000.  This means most of us would know several people who carry a PS story.

It must also be recognised that PS quite often (but far from always) takes a week or more to become “full blown” and able to be clearly diagnosed by touch, x-ray and ultrasound scan.  And the health system as well as parents would not take kindly to an unnecessary surgical operation on a baby.

Yet the message is clear from the above stories and hundreds like it on the web.  It is also a simple message that should not be impossible to learn and remember, especially by the highest IQ endowed people in society.

  • Arrogant shirt1Too many parents get “attitude” from their GP and pediatrician: patronising condescension and dismissiveness, even when the parents have done their homework, have PS in their family or personal genes, and find their baby’s weight loss has become serious.
  • One would hope it is true that today’s trainee doctors are being taught more about people skills.
  • Many doctors seem to wait far too long before ordering tests, resulting in too many PS babies being near death and possibly damaged for life by hunger and dehydration.
  • From the countless available stories it seems few doctors advise seeking a second opinion or refer a baby to somebody more knowledgeable.
  • One would hope that those who are humble and self-aware do one of the above – with the result of no traumatised and angry parents writing to a forum site!

This blog has several posts on the treatment of PS by medication with atropine or Ranitidine, a non-invasive option that is 100% safe for PS babies born full-term and older than 2 weeks and is standard practice in several developed (but non-English speaking) countries.  Find these posts using the “Categories” box at the top right.

Parents who strongly suspect their newborn has PS have very good reason to insist on their doctor giving them respect, time, and clear explanations of their advice.  It may be helpful for them to take a supportive person along to the consultation.

Pyloric stenosis: Does your doctor respect you?

Doctors visit01The single most common complaint of parents who have had a baby suffer from infant pyloric stenosis (“PS”) is their doctor’s lack of respect and trust for them, usually over several days of consultations.  Just visit any of the several forums for parents of PS children.

What a very sad reflection this is on intelligent, thoroughly and professionally-trained and knowledgeable people whose work is always with people, many of whom are in the most stressful circumstances.  Most parents of PS babies remember the frightening days before diagnosis and surgery as the most traumatic they have ever experienced.

Recently one of these parents published her story and a reflection on it on a U.S. Wall Street Journal website.  It is well worthwhile passing this post on to the many readers of this blog.

Your doctor must trust and respect you

Leah Binder

Leah Binder

When my son, Henry, was just three weeks old, he suddenly couldn’t hold down his food.  We took him to the pediatrician twice over the next few days, and both times the doctor told us to stop worrying and dismissed us as paranoid new parents.

But the spitting up wouldn’t stop, and in our hearts we felt something was seriously wrong.  When the pediatrician refused to schedule a third appointment that week, my husband insisted we bring the baby in anyway.  As a big “favour” to us, the pediatrician agreed to one more examination.

She felt a tell-tale bump on the baby’s belly, a classic sign of a disorder called “pyloric stenosis,” which weirdly afflicts mostly firstborn males (like Henry).  It is a blockage between the stomach and intestines, fairly easily corrected with surgery, but life-threatening when left undiagnosed.

Luckily, we caught it in time and the baby was rushed to surgery.  Today, Henry is a healthy 15-year-old, over 6 feet tall.

Claire Fagin

Claire Fagin is a highly experienced and respected American nurse, educator, academic, and consultant.

I told this story to one of the wisest people I know, Claire Fagin, Ph.D., a leading nurse researcher and health-policy expert who was once dean of nursing and later interim president of the University of Pennsylvania.  I asked Claire what I did wrong in choosing this doctor with such “great” recommendations.  Claire gave me the best advice I’ve ever heard about picking a pediatrician, and it applies to picking primary-care providers in general:  It’s not enough to pick someone you trust.  Pick someone who trusts you.

Ultimately, the most important problem with our son’s pediatrician was not that she made an initial misdiagnosis — she’s human, and people make mistakes.  The problem was that she refused to trust us as parents, and flawed though we may be, we are our son’s most important lifeline.  So any time you pick a pediatrician or your own primary-care provider, find someone who trusts and respects you.  Have confidence.  No medical or nursing degree can substitute for what you know about your own life or that of your child.

The other take-home lesson from Claire’s example as a nurse:  Don’t limit your choices to physicians.  Nurses are also wonderful clinicians.  Studies have shown that nurse practitioners provide primary care that is every bit as high quality as care provided by primary-care physicians, so don’t rule them out in your search.

Leah Binder is president and chief executive officer of Leapfrog Group, a national organization based in Washington, D.C., in the U.S.A., representing employer purchasers of health care and calling for improvements in the safety and quality of the nation’s hospitals.