Tag Archives: adhesions

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/


Is there a link between infant PS and later abdominal trouble?

Most General Practitioners (GPs) will reject any link out of hand.  Some GPs have even been known to ask their patient (or client) what “PS” (pyloric stenosis) is.

We can be sure that every medical textbook and training includes at least a page or part of a lecture on PS, which is the most common reason for non-elective surgery on infants in their first months and years.  But who can blame a medical student for not remembering everything they are told and read over six or more packed years?

However, the almost universal denial of a link between PS and later abdominal trouble is more than a nuisance.  It may be “textbook” but it misleads and misinforms the parents of a PS baby and most will continue with this false assurance until they discover the truth – usually only after much frustration.  As for PS survivors, they are the immediate and personal subjects of the widespread ignorance and misinformation about the possible long-term gastric and other problems that can come with PS and/or its surgery.

113This kind of trouble does not seem to afflict the majority of PS survivors, and may only affect a small minority.  But considering PS affects between 2 and 5 in every 1,000 babies, that is still a lot of people!  I have on file hundreds of stories just from those who have told something of their story on Facebook’s several PS Group pages – and elsewhere!  There are several other social forum sites carrying the stories of worried or unhappy PSers.

The pattern is typically like this:

  • The “survivors” endure some years of increasingly nagging (though not mortal) discomfort, pain and frustration with real but unidentified gastric and/or other abdominal symptoms (tightness, pain, bloating, irritable bowels, dietary misbehaviour, vomiting, etc.
  • Their doctors seem loathe to acknowledge these symptoms, giving their patients medication or dietary advice.
  • There is outright rejection of PS possibly having long-term consequences – the high acidity of PS, damage to the gastric passage and even the lungs (from ingested vomit), post-surgical adhesions, and trauma after old-style infant surgery and hospitalization are just some of the hazards which should be considered.  All of these possible conditions have been documented and reported in medical literature.
  • It seems that often the “survivor” discovers the link between their malady and their PS past only when they stumble onto an online forum where they find they are not alone.

Sadly, because PS-related problems are low on the medical world’s radar for several reasons, there is virtually no interest in researching them.  Hence the medical juggernaut rolls on in rejection and ignorance.  However, there have been a few small studies and (from what I have found) just one very large study that have confirmed that infant PS is not always free of long-term consequences.

If the reader is interested to trawl through enough pages of stories on this blog and on the screens of the largest three of Facebook’s PS Groups, they will also find reports that several GI specialists have (usually after many, many consultations) admitted to a connection, agreed on tests, and arrived at better advice treatment.

In 2014 a pediatric surgeon friend and I published a small book, in which he explained what many still regard as the elusive cause of PS and I outlined my personal experience of this condition.

Pain01Lay reading of medical journals and even a basic understanding of how our gut and PS work tell us there certainly can be a link.  More specifically, the high acid that causes PS continues with the patient, raising the risk of related issues including reflux, irritable bowels, esophageal damage, and gastric ulcers and cancer.  Reduced gastric emptying could well be caused by damage to the vagus nerve or adhesions from the operation constricting the working of the stomach and gall bladder, whilst the throat / voice problems are likely caused by erosion / scarring of the esophagus caused by reflux, high acid, or lack of care with the breathing tube during surgery.

Of course anyone with any such symptoms would need a proper diagnosis but it’s not hard for even lay people to understand the links.  With countless numbers from my Facebook networks, I plead with the medical profession, parents, patients and the family and friends of PS survivors to recognise and help spread the awareness of this quite common condition and its possible ramifications.

And if what you the reader has learnt here “rings a bell” … I sincerely hope that you have been greatly encouraged to pursue your problem and get it sorted out.

Networking after pyloric stenosis (2): blockages and pain

The previous post looked at some of the benefits of the internet age enabling us to network with people worldwide about issues of common interest.  I gave links to some of the websites I have found very useful for people with infant pyloric stenosis (“PS”), whether they be parents or survivors now in their adult years.

This post starts a series in which we listen to what people from all over have shared about the hassles they have experienced before and more often after PS surgery.  True, we can be grateful that the problems mentioned seem to occur to only a minority, and there is probably a “silent majority” who find they can easily put their PS nightmare behind them and “move on”, never or hardly ever thinking about it again.

However, that does not make the problems about which so many take the trouble to write any less real and troublesome.  The medical world’s ignorance about PS is widespread and reprehensible, as the many online forums and this blog have often demonstrated and stated – but in 17 years of following this subject area I have never yet seen a single research report on the frequent and serious grievances about shoddy diagnosis of this rather common condition!

The fact that ongoing problems occur as often as they do after PS flies in the face of the bland assurance of too many of those doctors who know anything much about PS: the common mantra is that “PS is quickly and easily fixed, with only rare post-operative problems and no long-term hazards”.  Ahem, what was that again?

Adhesions can form without an obvious cause, but usually result from damage to tissue and organs caused by surgery, such as those shown in this diagram caused by an appendectomy.

Adhesions can form without an obvious cause, but usually result from damage to tissue and organs caused by surgery, such as those shown in this diagram caused by an appendectomy.

In this and the following posts I pass on some of the comments from six PS survivor networks on Facebook.  This selection of comments is about adhesions and related conditions following PS surgery.  This blog has devoted several posts to the post-operative adhesions which can cause bowel blockages and pain: readers can find these posts by using the Categories box near the top right of this page.

KD was born in 1949 and wrote:
I am a 64 year old survivor.  Have over the past 2 years had a lot of problems with partial small bowel obstructions that are apparently caused by adhesions very probably from my PS surgery all those years ago.  I am also lactose intolerant and have IBS, and often have pains at the top of my scar!  I have bowel adhesions caused by scar tissue my surgeons say from that P S op all those years ago… in between i am ok, plus years of having pain at the scar site,
Electric Heating pads, hot baths and lots of either swimming or exercise are really good to keep things moving.  Strong pain killers are a whole other issue, and you have problems from them too, so I try and avoid them but sometimes u have to.  Every time you have abdominal surgery you run the risks of more adhesions so be careful about that too.  I get small bowel obstructions with my scar tissue, not nice.
I had it done at 12 weeks.  Huge vertical with big dots horizontally…  It is amazing to see how far surgery has advanced.  Have been embarrassed by my scar all my life and never wore a bikini.  I have suffered so many digestive problems.
now I have partial bowel obstructions caused by adhesions which surgeons say probably came from my ps op all those years ago, as I haven’t had any other abdo surgery.  I still feel pain at the top of the scar from time to time.  Weird!!

TF, 1977
I had surgery for this in 1977.  I have a ton of scar tissue and adhesions everywhere because of it.  Also my small intestines are stuck to my abdominal wall because of all this.  Been painful for the last year, so I’m going to have to have surgery soon to fix all this.  Just have been going through all the tests to be sure that is the problem and ruling anything else out.

LH, 1980
I have an almost 5 inch scar that has is bulky and is such a mass that it has attached itself to my diaphragm.  I am going to a general surgeon in a couple of weeks to get it checked out and possibly reduced a bit.
I was just diagnosed anemic and put on iron pills after lots of testing and a colonoscopy.  It’s great to know that the iron might be a part of the ps stuff.
Mine bothers me when I exercise because I breathe heavily, so my diaphragm moves a lot then it stretches the scar tissue and tears.  Once I have been exercising for a while as long as I keep it up regularly it doesn’t shrink again and I’m good.  But if I stop it shrinks and hurts like hell when I start up exercising again.
How do I know it’s attached?  I was just told by a doctor years ago… I explained the pain and after an ultrasound they confirmed it.

JM, 1986
I get bad pains like a stitch but worse.

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

AB, 1992
I have acid reflux and gastritis as well, they are side effects from the surgery.
I had PS as well and surgery when I was a month old.  I’ve always had pain with my scar too.  It gets hard at time and sinks in very nasty.  I’ve had ultrasound scans, even cat scans, mri scans and xrays.  My doctor told me that my scar didn’t heal properly internally and as a result I have scar fibers extending to my ribs and even to my liver.  All the doctors say that I have nothing to worry about because in time they will tear on their own.
I have a hard time bouncing back [after a stomach bug attack].  Leaves me weak for weeks… sometimes months.  My doctor says it’s because my stomach went through such a major change when I was a baby.

RR, 1987
I had pyloric stenosis surgery at 10 days old.  I went to the E.R yesterday because I was having bad pain in my rib / back like someone had punched me a few times.  I was given an ultrasound scan but nothing was found.  I was told it could be a muscle strain or scar tissue issue from my surgery… Never did I think of my surgery from that long ago: I had always overlooked it.

Next time:  poor diagnostic work

Pyloric stenosis and adhesions

One of the most frequent long-term causes of grief after surgery for infant pyloric stenosis (“PS”) is adhesions.  This subject has been 3rd on the list of the most frequent of the 50,000+ visits to this blog, which is some indication that adhesions are not an insignificant matter.  So much for the assurance to parents when they submit their baby for an operation to remedy PS:  “This surgery never (or hardly ever) has any long-term effects”.

There are many informative websites devoted to the pain and other distress caused by adhesions, such as the one on the Better Health Channel of the Victorian Government in Australia.  I have often posted on this subject, as the “Categories” and “Search” boxes on the upper right of this page will show.

What are adhesions?

AdhesionWhen the body tries to repair the damage inevitably caused by surgery, scar tissue develops not only in the incision but also around it or from the cut tissue.  After PS surgery this means: around and spreading from the incision and the pylorus.  Adhesions can also grow between the inside of the abdominal wall and abdominal organs near the surgery’s work area (the bowels, liver, spleen, etc.).  This tissue can be as fine as plastic wrap or hard and fibrous like a web of string, in which case it is also inelastic and firm (like the skin surface of the scar).

Adhesions develop in more than an estimated 90% of people who have an invasive abdominal event such as surgery, injury, infection, radiation therapy, or a condition like endometriosis.  However, only a percentage of those with adhesions will be affected by pain or discomfort.  Most of us with them can be thankful that our adhesions are “just there”.

But this is far from true for everybody with a PS past.

Why won’t my doctor do anything about my adhesions problem?

What you read above really explains why doctors are reluctant to advise those of us who suffer with adhesions to get them removed: every time the body is opened it is likely that more adhesions will form from ever greater damaged areas.  There are ways of reducing the likelihood of adhesions forming, but prevention is better than a rather chancey remedy!

What can I do about adhesions?

Father compassion01eParents of a baby with PS should do their best to be good advocates for their baby, considering his or her long-term welfare and need for information about issues that they won’t be aware of.

Parents should also try to avoid surgery as the sexy “quick fix” for PS that most surgeons love, unfortunately without much care for the possible longer-term consequences.  There are less hazardous and less traumatic alternatives to the knife available – which only some doctors seem willing (or able, due to the rigidity of the usual training regime) to discuss and consider.

Mild cases of PS (where there is no weight loss) can be “toughed out” with or without the help of medication like Ranitidine which I have discussed elsewhere.

PS infants older than 3-4 weeks can also be treated medically – as they are in several non-English speaking but developed countries.  In these countries it is recognized that most babies recover without surgery, and those 10-25% that do not respond well enough to the medical therapy are sent to surgery; the mortality rate after PS is no different in these countries than in the Anglo-world!

Adults with a PS surgery past will probably begin to come across the word “adhesions” soon after they start having problems including –
– ongoing or intermittent abdominal discomfort, cramping or pain,
– what seems like gall bladder disease,
– bowel obstruction or blockages,  and sometimes even
– dyspareunia (painful intercourse) and infertility.

Adhesions can sometimes range far and wide from the pyloric (upper abdominal) region, especially if the surgery was rough and/or if the location of our internals is not textbook (as happens).  In my years of researching this subject area I have come across quite a number of people who had a healthy gall-bladder removed and were only then told their problem was caused by adhesions from their PS operation.

constipationIf you have any of these or a similar problem, insist that your doctor or specialist consider checking you for adhesions before you sign for anything major!  More surgery will usually make the discomfort and pain worse – although usually only after some more years have rolled by.  A few of my correspondents and friends have had adhesion surgery several times over a lifetime: this may well be the best course for some.

Several therapies other than surgery to break up or help live with adhesions have been mentioned on this blog, such as here, and here – and there are more on the web.  Most of these helps have been praised by some and found a waste of time and money by others.  One of my Facebook Friends wrote to me:
I used to belong to another group where they discussed in depth [a] physio clinic in the US and a lot of people felt they had been made worse with it.  It involves a lot of hours of intense therapy and the manipulations left them [with] worse pain and no relief from their adhesions.

Hmmm… “Taste and see”, if you have the need.

The possible effects of infant pyloric stenosis

Doctor01The most common mistake and the biggest lie told about infant pyloric stenosis (“PS”) and the surgery to remedy it are the simplistic notion that neither has after-effects:  “After the quick little operation you’ll have a new baby, and you and your child will never think about PS again!”

Sadly, that mantra is all-too-often “too good to be true”.  All-too-often it just adds disappointment, insult and feelings of betrayal to the nightmare: of many parents in the weeks, months and often years after their child’s surgery, and of survivors every time they are told that their chronic troubles cannot be explained but have nothing to do with the scar on their belly.

The prevalence of this rather too promising assurance is why in 2012 I devoted a lengthy post about this on this blogsite.  It has been the 2nd most read post on this site.  I will revisit this subject more briefly here, and urge interested readers to use the link to read what I wrote there, and to use the Categories and Search/Tags boxes at the upper left of this page to find related material.

Because PS is relatively common (between one and five babies in 1,000 will suffer with it in developed countries – that is a lot of people!), we must conclude that the widespread belief about there being no ongoing or side effects although false and misleading is nevertheless generally true. I suspect that if (say) half the millions of PS survivors had troublesome adhesions, obvious PTSD or chronic reflux, we would know about it.

It is also true that some of the reported ongoing effects of PS and the surgery to deal with it cannot be linked with the condition with any certainty.

Obesity02For example, obesity or minimal body mass in later life are common complaints among survivors and could indeed be the result of the pylorus’ being slit and behaving somewhat differently – and some small studies have recognised this.  Yet from my self-knowledge and interaction with others affected it seems to me that our genes and eating choices are mainly responsible for how we process our food intake.  As an uncle used to tell my parents, “Every pound passes through the mouth”.

The vexed matter of GERD, GORD, or reflux is another common complaint that is often suspect but hard to pin on PS or its surgery.  I have written about the challenge that chronic abdominal pain is for many people: patients, parents, and physicians.  Long-ago abdominal surgery is all-too-often on the list of suspects for persistent undiagnosed pain, but a PS link is far from always established, although this may be because so many busy doctors fail to “engage” with patients who consult them about a list of hard-to-diagnose abdominal complaints.  If a quick prescription or a referral to a surgeon will help you, fine, but otherwise…

Having noted all this, it is sad but true that PS and its operation cause much, much more grief than the medical world seems willing or able to recognize, if the thousands of medical articles and personal stories available online are considered.  Again: the problems listed below will not affect everyone after PS and surgery for it, but they affect many.

Here is an incomplete and dot-point list; it summarises many other posts to this blogsite.

Some immediate and ongoing after-effects of PS (regardless of surgery)

  • Malnutrition of the brain (incl. lasting effects on memory, coordination and motor development)
  • Hernia formation
  • Risk of children inheriting PS
  • Increased risk of later gastric ulcers

Some effects of medical or “watch and wait” treatment of mild PS

  • Need for surgical treatment in infancy or later life

Some immediate after-effects of Pyloromyotomy (PS surgery)

  • Complications of surgery – a list incl. breach of the pyloric passage, incomplete pyloromyotomy, infection, bleeding, wound rupture, anesthetic problems, hernia formation
  • Disturbance of gastric function (continued although milder vomiting, GERD/reflux, slower or faster processing)
  • Emotional effects of surgical trauma and maternal separation

Some long-term after-effects of Pyloromyotomy

  • Disturbance of gastric function (abnormal vomiting, GERD/reflux, irritable bowel syndrome, slower or faster processing)
  • Abdominal adhesions
  • Post Traumatic Stress Disorder – various results of retained somatic (body) memories and transfer of parental trauma
  • Significant discomfort for women during pregnancy
  • Scar disfigurement – self-image
a PS baby showing malnourishment

a PS baby showing malnourishment

Against all the above possible causes of PS puzzles and problems, ranging from minor irritants to significant and life-affecting afflictions (all-too-often dismissed by the family doctor), we must remember one thing.  Whereas PS a century ago meant the terrible death of almost every affected baby, today it is a negligible cause of infant mortality, thanks to the steady progress of Western medical science during the past 125 or so years, when Dr Harold Hirschsprung first described PS in detail.

This blogsite is committed to seeing a better integration of the science and the humanity of managing PS.  In several areas there remains some room for improvement.

Adhesions and pregnancy

Like many who had surgery as a baby, I’ve been left with a few issues as a result.  Abdominal surgery at any age often leaves a bit of collateral damage, and when the surgery happens in infancy, this damage can grow with us.  The harm may be physical, cosmetic, or even emotional.

When I was just 10 days old I had surgery, caused by a stomach blockage, pyloric stenosis.  Discovering that I am not unique in having some “issues” as a result of this, and being in a position to do something about it, I started blogging here just over three years ago.

Adhesions 01One of the most common problems after abdominal surgery is the growth of adhesions, web-like inelastic scar tissue that can develop wherever the surgery went.  Adhesions may connect the abdominal wall to abdominal organs, link one abdominal organ to another, and sometimes obstruct them from working as they should.

Many of us have adhesions without being aware of them.  Virtually everyone who has had abdominal surgery will have adhesions, although in the great majority of people these will also remain unnoticed.  But a minority of former patients will be troubled by adhesions, some to the extent of choosing to have further surgery to get relief, all-too-often only temporary.

Such adhesions will be a special worry for those women who wonder how their already annoying or uncomfortable adhesions will behave when they are carrying a baby.

Will the abdominal surgery I had stop me from having a baby?

Most unlikely if the surgery had something to do with the gastric or food passage.  The scar and/or the adhesions may cause extra grief during a pregnancy, but they won’t stop it or damage the baby.

Will the surgery I had affect my pregnancy?

There is a small chance that adhesions will add to the discomfort and pain that are an expected part of most pregnancies.

The good news:
Good news bad news11)  From the published material it seems that only a small minority find that their surgical scar and/or the adhesions under it become more of an issue during their pregnancy, and those who do have found (as is usual) that every pregnancy is different also in this way.
2)  Although there may be unpleasant but understandable itching, stretching and tearing pain at or under the surgical scar, and some have reported a little bleeding, nothing more serious has been reported.  A mature scar is stronger than the surrounding abdominal wall and won’t tear open.  The stretching and bleeding will heal.
The bad news:
1)  If any of this happens to you it is hardly pleasant and it’s an unwelcome extra challenge during the long months of waiting and wondering.
2)  Count yourself privileged if you have a doctor or obstetrician who pays attention to this aspect of your pregnancy.  Because there is no easy “fix” for adhesion pain most medical people won’t want to hear or say much about it.  Be prepared for a brush-off.  Be content with some pain relief.

What can I do to reduce the discomfort caused by my earlier surgery?

As mentioned, most doctors believe it’s best accepted.  Creams and massaging are worth a try.  There are more costly and specialised therapies advertised online which some have found very good but others not.

Considering mild pain relief as recommended by your doctor, exercising and keeping weight gain to a safe minimum are sensible options.

 *         *        *

Two and a half years ago I wrote a more detailed post about this subject with some fear and trepidation for reasons that will be quite understandable.  How many males untrained in medical science would take it upon themselves to write a post on the effect of abdominal adhesions on a pregnancy?

boy writing1Yet this 2011 post has become by far the most read one of the 160 I have written about some of the issues that can arise from infant surgery later in life.  WordPress, the host of my blog, has encouraged me to revisit the subjects of my most read posts, so with a new year, I offer the above points as a summary and a lead-in.  I have not repeated most of what I wrote in the 2011 post on adhesions and pregnancy.

The 2011 post was the 4th of a series dealing with the problems adhesions can sometimes cause after abdominal surgery.  If this is an “issue” for you (the reader), I suggest you follow the link (click on the highlighted words) above and read all 4 posts and other readers’ valuable first-hand Comments on their subjects.  The “Categories” and “Tags” boxes on the right of this page will help you locate other posts that may be of help.

Communication04Many have found this blogsite to be a good place for getting information about a list of possible issues around infant surgery – especially the treatment and possible effects of infant pyloric stenosis, the most common reason for life-saving infant surgery.

You won’t get personal professional advice about your particular medical problem here, of course.  But this blog wants to continue to give well-informed, responsible, and practical facts and experience-based advice about infant surgery and its possible effects.  I have brought this together from the writing and reports of thousands of not only medical professionals, but also from parents and the survivors of infant surgery who have posted their experiences and stories on the web.

2013’s most visited infant surgery (SIS) posts

This last post for 2013 on the “Surviving Infant Surgery” (SIS) site was written away from home and after a very busy but delightful, Christian, and family Christmas.  I thought if might be of interest to list the most visited posts of this blogsite during the past year.

It is with continual surprise and gratitude that after three years I continue to see the interest in the SIS blog rise each year, so that the total “hits” now number almost 50,000.  Even more gratifying is the feedback from many readers, online and by email.  The message of your comments is, “Thank you, you’re helping people like me (or us) so much with your honesty, careful writing, shared experiences, and by helping me / us to realize that my / our experience is far from a lone or odd one.  Do keep up the good work.”

The post that drew the most interest by quite a margin was about the possible long-term effects of infant pyloric stenosis (“PS”) and the surgery that often follows it, Ramstedt’s pyloromyotomy.

ponderAdhesions after a pyloromyotomy were a frequent and often troublesome concern among those who used this blog during 2013.  Two of the top 10 discussed this, the posts # 2 and # 6.  The 2nd most visited post dealt with the effect of the surgical scar and internal adhesions on a pregnancy, and the subject of #6 was the adhesions that can be expected after any abdominal surgery – with special reference to the trouble adhesions have been found to cause to people after an infant pyloromyotomy.  Sadly, this is one of the subjects raised by PS and its surgical “remedy” that most doctors brush off with a vengeance: there is no prescription, no surgery, and no other easy way of dealing with abdominal adhesions.

The subject that had the next (3rd) most readers’ interest was related to this also: Does an abdominal scar cause trouble during pregnancy?  The short answer is that it can – but usually if any, it is a relatively minor discomfort.

The post with the 4th highest number of “hits” discussed a deep fear and occasional reality: Can PS raise its horrible head again after a pyloromyotomy?   Continued vomiting, although of a less violent form, is quite common, even to be expected, after a pyloromyotomy, although usually only for a short time.  It is very understandable that parents who have just been through the harrowing experience (indeed, traumatic for many) of infant PS will be more than anxious about this possibility.  While most doctors and hospital staff are reported to be very supportive in this situation, many parents are unsettled (to say the least) by the earlier bland and simplistic assurances that “surgery fixes PS immediately, permanently, and without any after-effects”.

Self-exam1The post that came 5th in popularity in 2013 reflects another area of anxiety and emotional pain that has come with the surgery for PS: while some care nothing about their scar, others can tell tall stories about it, and some hardly think about it, there are many “py babies” who grow up to hate their scar with deeply felt hatred and embarrassment and would dearly love to be rid of it.  So one of my posts on scar reduction plastic surgery rated #5 in interest.

Symptoms of post-traumatic stress sometimes result from the anxiety, surgery, and maternal separation that PS can bring, especially from the way the condition and its surgery were handled up to the late 20th century.  This subject was also discussed in many posts, but the one that rated # 8 in 2013 made the top 10.

By using the “Categories” search box (top right of the page) or searching for keywords or “tags”, readers will usually be able to find a number of posts on each of these and other subjects.

The “My Story” page (with its tab at the head of every page) has also rated very well.  Thank you for your interest, encouragement and support!

At the end of another productive year of SIS, I want to thank all my readers and especially those who have given feedback online or by email.