Category Archives: Survivors’ Stories

Stories from those who had surgery as babies – we hear their gratitude and can learn from their regrets

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 (4): Emotional baggage

This post continues a series in which people who started life with infant pyloric stenosis (“PS”) and were usually left with a very gnarly or sunken surgical scar tell something of the psychological damage that came with that.  The social pages of Facebook include at least seven Groups of such people and the comments below are taken from these pages.

In their most formative years many PS survivors didn’t understand the reason for the surgical scar on their belly: their parents were perhaps embarrassed or reluctant to explain it because of their own inner pain over those pages of their life story.

Even during our honeymoon this pose shows how careful I was about showing my belly to the world.

Even during our honeymoon this pose shows how careful I was about showing my belly to the world.

When PS survivors feel shame about their scar, it’s typically because their personality is not extroverted and confident, and/or because they were not helped from an early age to understand the story of their PS and to “own” and wear their scar with pride and gratitude. Let’s face it, not many of like to be “really different”, and when we’re not helped to understand and appreciate the issues involved…

Here is the record of some of the emotional struggles PS’ers feel or have felt.

T B – c. 1990
I have gone through stages where I have become depressed over the scar left, however I think I am beginning to accept it more.  I’m an avid fitness enthusiast and weightlifter.  In saying this, I try to stay in shape.  However I still feel really uncomfortable taking my shirt off in public or around people I don’t know… the internet has made it easier.  It shows that there are “others” out there… I feel the scar is something I should be proud of instead of ashamed.

D C-S  1974
My ops were both in 1974, left me with a big zip scar down my front from sternum to belly button.  Wouldn’t be without it, but it has left me affected mentally and has left me with a variety of digestive tract issues.

Panama man

When infant surgery leaves your body looking like this man’s, only the very self-confident would ever feel at all comfortable

K D 1949
Gosh all your scars still look way better than mine.  I am 64, an old girl, and had it done at 12 weeks.  Huge vertical with big dots horizontally.  I’m in Australia and it is amazing to see how far surgery has advanced.  Have been embarrassed by my scar all my life and never wore a bikini.

J H 1962
I struggled with my scar for years… especially in school, sports, etc.  Always was embarrassed to take my shirt off, kept my arms folded, etc.  Now I’m proud of it and love to show it.
Growing up I used to be so embarrassed.  It’s something I had trouble overcoming… but finally did.

FV 1945
Because I had my op long ago when lots of the issues around it were pretty basic, I’ve had some emotional baggage, probably mild ptsd, shame and obsession for many years, now still in some ways an inordinate interest, although working on the issues and age have helped me heal inwardly.  Suspect there’s also some damage from the hunger and dehydration, as I lag behind all my 4 sibs in some areas.  But I’m glad I lived and don’t have the problems some have, esp. adhesions and serious bowel issues.

WW 1952
I’m 57 and had PS surgery at 3 weeks old and my mother told me that I never crawled.  I would only pull myself along on my butt.  (This behavior, I think, is very connected to the surgery.)  I did walk late, as I recall her saying.  For me, I think transitions have always been hard.  Safety is a big issue.  All my life, I’ve been a late bloomer.  For me, it’s definitely connected to the surgery.  I lost some confidence early on and doubted the power of my body.

parent-talking-to-childIt is noteworthy that most of these kinds of Comments are from people who had their PS surgery many years ago, when the surgical techniques were fairly crude and not cosmetically sensitive, hospital care was rough and ready, and parents did not know as much about child psych as we do today.  These Facebook comments are typical of other forum sites I have read.

However, the one comment (the first one) that is from a younger PS survivor shows that “emotional” baggage after PS surgery is not simply related to whether the surgery and scar were relatively recent or not. Again, many of us just hate being different.

These Comments also show that emotional, psychological and PTSD consequences can show up in different ways.

This series based on Facebook common interest sites also bears out that the medical alternative to treating PS surgically should be considered in every case – as it is in several developed countries.  This option like surgery is not always trouble-free, but will avoid most if not all the serious complaints and problems which fill the PS pages of the web’s forum sites.

During the 3 months after this post was written my wife and I were travelling, visiting family and friends and holidaying in the U.K. and Europe. My Facebook page records some of this wonderful and special time (accessible to Facebookers who “Friend” me).

This series of posts was continued soon after my return home.

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

Networking about infant pyloric stenosis (1): links

For those who have had surgery for infant pyloric stenosis (“PS”) the online social media and discussion forums have been a Godsend.

Being a 1945 PS baby, for most of my life I was able to compare notes with only a very few others who share my PS-related joys and sorrows.  But worldwide networking has arrived and flourished since the advent of the internet in the 1990s.

Parents now compare notes on their baby’s PS, the surgery, and what followed.  Many regard it as the most traumatic experience they’ve ever had, too often made worse by the lack of awareness, sloppy diagnostic work, and even arrogance of their doctor.  Many tell their tale or join a Facebook Group hoping to increase the general awareness of PS, the most common condition of infancy which is usually dealt with surgically.

blog-writing1Survivors are typically keen to break out of their sense of aloneness.  We can now compare our feelings over the surgery and scar: we had no say and have no memory of our first crisis, but we can now meet others with the gnarly or deeply sunken scar which most of us hated, especially in our earlier years.

Many PS survivors also want to learn about a list of ongoing problems which some have and which seem to be related to their stomach operation, although doctors don’t agree or want to know about this.  After all, the paediatrician and the surgeon assured our parents that the operation was easy, quick, almost always immediately successful, and that there are no long-term problems after PS and the surgery.  “If only!”

Facebook is the most accessible and popular address and has at least six large and small PS Groups and they are actively used by both parents and PSers.  Unlike web forum sites, Facebook Groups can only be accessed by registered users; they just need to type “pyloric stenosis” into the Search box to get a list of Groups.

Forum sites like Experience Project, MedHelp, Patient UK, and Topix each have one or more discussion groups for PSers.  These four links are to each site’s most popular discussion on PS matters, and a search there will usually give you links to other discussions on that site.

Expectant and recent mothers share their experiences, concerns and questions on specialist sites including BabyCenter (in the USA), BabyCentre (in the UK), and also in other countries.

Readers interested in any of the PS-related issues are to be encouraged to “visit” some of these online locations.  Consider sharing your story and help increase the public and medical world’s rather too common ignorance of PS!

In the next few posts I want to pass on some samples of the important information that is shared on the pages of some of Facebook’s PS Groups.

Pyloric stenosis: long-term complications

Parents with a pyloric stenosis (“PS”) baby are always reassured by their paediatrician and surgeon, as they should be.  Although PS is usually a fatal condition, it can be brought under control with a small surgical procedure that is very safe, and although this operation sometimes leaves the baby with one or two immediate but treatable problems like reflux, there are no long-term effects.

Reassurances like this are the norm – but are they telling enough of the story?

“If only we had known…”

In fact, the “silent majority” of those who have had surgery for PS seem to have no or only minor complaints (usually a sensitive tummy).  However, PS and its operation are relatively common, between 1 and 5 in every 1,000 infants in most of the countries where this blog is read.  And so online there are countless complaints about significant challenges for babies, children and adults after this operation.

The “Categories” search box to the right of this page gives access to some of the data and stories I have found.

Here are two personal stories about how PS affected adult survivors.

Both are from women who shared their experience in 2013 on Real Self, a U.S. website that promotes cosmetic or reconstructive surgery after weight loss, malformation, accident or surgery.

The first story is from a woman who writes about two things with which she struggled: deep loathing and self-consciousness  about her scar, a common issue especially for many who had PS surgery before minimal access techniques became available after about 1990.

Hernias  were this woman’s second nightmare, most likely caused by the violent vomiting of PS, the surgery, a constitutionally weak abdominal wall, or all of these.

The good news is that after 60 years and many surgical repairs she is now very happy.  She posted her story on 1 April 2013 under the nom-de-plume Adreamcometrue.

Surgical scar after herniation or rupture (but not the writer's)

Surgical scar after herniation or rupture (but not the writer’s)

My tummy problems began when I was 22 days old, in 1950.  No that is not a misprint.  I was born two months premature.  At 20 days I began projectile vomiting.  After a couple of days a diagnosis was made: pyloric stenosis.  Surgery was performed.  That surgery left my midsection a mess.  As a child and teen I was cursed with a huge vertical scar surrounded by bulging flesh.  Nothing like being a teen and wearing a long line bra.  Body issues were definitely present.

My first reconstructive surgery to repair multiple hernias was in 1970.  There were other hernia surgeries in 1982, 2000, 2005, and 2007.  After the surgery in 2007 I was left with a huge bulge on the upper left quadrant of my ab region.  Three different docs told me I did not have another hernia.  Finally, as I was shopping for a gown for my daughter’s up-coming wedding,  I was becoming more and more discouraged.  Dresses in my usual size were not fitting.

In frustration, I went to Dr. Barach (a plastic surgeon).  He made an appointment with a[nother] surgeon.  They both felt I had another hernia.  So on March 22 the surgeon took care of a hernia and a wall tear next to it and Dr. B took care of the tummy tuck.  I am so thrilled.  The first time I saw my middle, 5 days post op, I cried.  I never thought my middle could look this way… I look great with my drains and swelling.

Based on the stories shared by others here, I can only imagine what I will look like 6 months from now.  I have been seen by my plastic surgeon two times since returning home and have another appointment this afternoon.  Keeping my fingers crossed that the drains will be removed.  Thank you to everyone who reports here.

This website has been very useful and comforting.  I am looking forward to returning to the gym and am continuing to eat healthy…. well… Easter doesn’t count… Does it?  Have a great day!

P.S… Insurance covered the hernia portion of surgery but not the plastic surgeon’s bill.  The use of the Operating Room was also pro-rated, and we had to pay $875 for that.

Some days later she continued –

I am now 13 days post-op.  On day 10 my drains were removed…

I hadn’t taken my own “before” pics.  I asked for a set, which they gave me.  Now I have to figure out how to scan them onto my computer so I can post them.  What a difference!  My pre-op size 6 jeans fit with no muffin top.  Yay!..

The plastic surgeon reminded me that my walking should not resemble exercise, when I complained that it took 15 minutes to walk about ¼ mile.  The plastic surgeon said I shouldn’t even consider using a treadmill for a 6 weeks.  I was in the gym 5 days a week prior to surgery.  Due to issues that make me easily develop hernias and tears, I can’t do CORE exercises.

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The second story is a powerful reminder of the real risk of complications long after PS surgery and also during and after any subsequent surgery.  These problems are often unexpected and possibly disastrous.  This woman prepared for cosmetic surgery full of both anticipation and fear.  She first posted on 1 Jan 2013 as “1hotway” and I have felt it helpful to add some comments.

First of all, I just want to thank all of you beautiful ladies for sharing your amazing stories.  This site has been a true godsend to me.  I am 38 years old with 3 beautiful boys … All of the damage to my tummy was done with my first born.  I was 20, so I never really got to enjoy my body.  I got terrible stretch marks, and needless to say a two piece was never worn again.  I have been at a pretty average weight my whole life. …

The writer's damage after carrying children and two surgeries

The writer’s damage after carrying children and two surgeries

When I was a baby I had a little stomach issue called Pyloric Stenosis.  It left about a 3″ scar on the upper right side of my abdomen.  I also had my gallbladder removed at the age of 21. [This quite often happens after the PS operation but the risk is it seems never mentioned. Ed.]  They unfortunately had to do the open surgery that left about a 7″ scar on my upper right abdomen.  Ugh!  Right?  I look like a road map!

I am sooooo ready for this. Thank goodness I have a wonderful hubby who loves me just the way I am.  One of the four plastic surgeons I saw for a consult said he didn’t think I was a good candidate for the TT [tummy tuck].  The other three said it would be fine.  Of course this makes me very nervous.  I don’t want to settle or compromise for my results.  It’s all or nothing…

A few days later she wrote –

I love looking at all of these amazing stories, but some of them aren’t so wonderful.  I guess it is good to read the good and the bad, but frankly it scares the heck out of me.  Necrosis???  [The death of tissue cut off from the blood supply by the old scar(s) and then plastic surgery. Ed.]  That is really scary stuff.  I have just read some terrifying reviews on that.  I can only PRAY that doesn’t happen to me.  One of the plastic surgeons I saw said that I am at a higher risk for this because of myprevious abdominal surgeries.  My plastic surgeon that is doing my TT isn’t concerned at all.  He is confident there shouldn’t be a problem since my surgeries were so long ago.  I am getting really nervous and excited.

2 February 2013

Paid in full. Got recliner. Pre-Op in a week. This girl is ready and nervous.

11 February 2013

Had my pre-op today.  BP was a little high.  Probably from reading & signing all of the consent forms.  Not exactly thrilled about reading all of the worst case scenarios.  Trying not to think about all the bad stuff that could happen is easier said than done right?  Any ways, got my prescriptions and doctor took my before pics.  I’m all set now.  Just have to wait for the big day…

18 Feb 2013

Well, I can’t believe it’s finally almost my turn.  I think I have everything all dialed in.  My husband is amazing.  He keeps telling me to just relax and breathe, he will take good care of me…  I wish I could just do that…

2 March 2013 – 6 days post-op

Started getting a strange pain in my right shoulder blade.  By day 7 it was traveling down the right side of my back.  It hurt to take a deep breath in.  I saw my plastic surgeon.  Had a drain removed and told him about the pain I was experiencing.  He assured me it was nothing.  4 hours later I drove myself to the ER because the pain was getting worse.  They ran labs, X-ray, and CT scan.  They confirmed Ihad a pulmonary embolism and admitted me to the hospital right away.  I now have been getting shots in my tummy to break up the clot.  I also have to be put on Coumadin for six months.  This has been the scariest thing in the world to me.  I should have never put myself at this kind of risk with 3 kids and a husband who need me.  I’m very lucky it was caught so early.  Many others aren’t so fortunate…

I’ve noticed that the risk is much greater than I thought.  This has been my biggest fear in getting this surgery.  I felt confident with all of the precautions that were taken during and after the surgery but clearly it wasn’t enough.  I tried to be mobile, I had a shot of heparin right before the surgery, they used the leg squeezers on me too.  Obviously it was just out of my control.  I will never have an elective surgery again.  The risk is just way to great…

4 April 2013

…I still won’t ever say it was worth it, considering all I have been through.  Just so happy to be alive and here with my amazing husband and beautiful boys.

12 Feb 2014

Hello, it has been almost a year since my TT.  I’m going to be honest. I probably wouldn’t go with Dr. H… if I could do it over again.  I think he is a little arrogant and I would definitely go with a doctor who takes every precaution they can.  I know that Pulmonary Embolisms are rare, but most people don’t live through them, so I would go with the safest route.  There really is no way of knowing if the clot came from my pelvis or one of my legs.  I tried to be mobile as often as I could, so just not sure.  I also have to say that I wasn’t impressed with how long it would take for the staff to respond to my messages…

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Ugly scarring, herniation, adhesions blocking the gall-bladder, necrosis and other problems related to the scar, fear of the list of hazards we have to acknowledge before submitting to surgery, complications from the surgery…

The stories of just these two women (and the previous posts in this series) make me think I’ll keep encouraging those who can to try, even press for the medical treatment option for their PS baby before they sign a consent to surgery.

Pyloric stenosis: a horror story

All surgery involves risk, but only the very desperate would sign for an operation they know has a high risk rating.  The operation to remedy infant pyloric stenosis (“PS” or “pye”) has been done worldwide for over a century now, with steadily falling mortality (death) and morbidity (complication) statistics.

Yet risks remain, and the only perils most doctors talk (and seem to know) about are the immediate ones.  The long-term hazards are in fact also quite common and unpleasant if the web forums and material I have collected on this blogsite are any indication.

This post is about a fairly recent botched PS operation in the UK.  The mother of a young lad now 4 years old shared her story on one of the Facebook “Pages” which lets PS parents and ex-patients share their experiences.  Here is her account, passed on with her consent…

SeatonHarlan age 4 Fb 140502-2Here is Harry [not his real name] aged 4 years.

He was a 29 week prem baby.  He came home at 8 weeks.  Vomiting started within the week.  (I literally didn’t dress for a week, went from one dressing gown another).

As a mum of 2 other prem babies and one plus term, I knew it wasn’t reflux.  However, I thought it could be milk.  We changed milk till blood tests revealed he was “deranged”.

A scan later revealed pye.

We were transferred to another hospital as he was oxygen dependent and 4 pounds, consent was signed and mum was reassured.  I questioned anaesthetic use on a tiny baby and was told “this operation is like pulling an adult’s tooth, it’s so easy”!

Surgery was the next day.  Post op bottle to be offered at 6 hours then he goes home.

Bottle declined, baby distressed.  This went on almost 36 hours.

Resulted in my boy arresting at the point of repair surgery.  He had e-coli poisoning, peritonitis, multi organ failure and any other complication that could happen did happen!

It transpired his duodenum had been cut and ignored.

We were told he had at the most 30 minutes and they could do no more.  He then developed abdominal compartment syndrome.

Harlan's belly will always tell the story of his fight for life.

Harry’s belly will always tell the story of his fight for life.

He however is a very stubborn boy: he showed them he was in charge!  He did require 7 lots of bowel repair surgery, and the 4th operation revealed his liver had been cut also!

He came home with a palm sized open wound that looked into his bowel.  New skin grew back!

I have cut out lots as I can’t word it appropriately!

Today he has brain “damage” and a killer scar.  But he is an amazing child.

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On the basis of the mass of information available on the web I add these comments.

The duodenum is the section of the gastric passage that follows from the stomach and pylorus.

IHPS diagr25A perforated duodenum resulting from a PS operation is rare and will usually represent what we call “a botched job” although medical journals won’t describe it that way.

Competent surgeons know (a) how to avoid opening the duodenum, and (b) what to do when it happens.  A surgeon who cuts the duodenum and doesn’t discover this immediately was probably careless or incompetent and unprofessional.  And a hospital where this happens was most likely negligent in not enforcing its policy about the checks a team needs to complete to minimise surgical mistakes.

What should have happened is quite simple.

The Ramstedt PS operation involves splitting the baby’s enlarged pyloric muscle down to the mucosa (the inner lining of the food passage) so that the ring muscle’s spasming is stopped but the passage does not leak partly digested food.

PS surgery02If the slit in the muscle is not deep or long enough, the muscle will regrow and the procedure is ineffective and will have to be repeated.  If the split is too deep the mucosa is ruptured, and if it is too long the stomach and/or the duodenum at either end of the pyloric muscle ring are perforated.  Accidental cuts are stitched, and if necessary a patch is sewn over the cut.

PS surgery04Every pyloromyotomy operation follows a protocol which includes testing for bleeding and leaks.  Bleeding is sucked or dabbed away until its origin is clear.  Before the abdominal wound is closed, or in a laparoscopic operation before the trochars (tubes) are withdrawn, air is pumped into the gastric passage and the theatre team looks for bubbles that would indicate a break in the passage.

When a perforation is only discovered after the operation it is life-threatening because the leaking gastric material will have had some time to set off peritonitis in a small baby.

When a baby like Harry is saved it is usually only after a string of further complications and the result of very excellent nursing care!

Although horror stories like this one are rare, they add to the many other non-life threatening but still significant stories about the grief that PS surgery can cause in the infant years and/or through any or all of the stages of adult life.

One of the reasons for this blog is to share information about the hazards of PS surgery and to increase the awareness of the little known but widely and safely used alternative – medical treatment.

Harry’s mother added these notes 2 weeks after the above material was posted –

Only about 2 months ago we have had a full admission of 58 counts of negligence.  They really couldn’t not admit this as Harry’s hospital notes told their own tale.  His solicitor and barrister said only they had never dealt with such a catastrophic set if mistakes.  They can’t believe what Harry fought and won!
He will receive a substantial payment but it’s on hold to see what the future holds.  The nature of his brain injury could cause significant problems so we have to see what the next few years bring.  He has a golf ball size scar on his head as well from a pressure sore.  He’s had surgery on this scar 3 times as it spreads like wildfire.  As it will make no great difference we have been advised to leave it a few more years.  I don’t want him losing anymore hair and becoming subject to bullying.
He has other problems associated with all this and these are all under investigation.
I’ve been told there will be no action against particular staff members unless they are “repeat” offenders!  I can however take civil action against individuals if I choose to.  The surgeon was a locum and he is not there.  But the main problem wasn’t the accidental damage, it was what happened afterwards in respect of poor nursing care. 

Pyloric stenosis: a good news story

Many readers visit this site (an average of some 90 per day at present), and most of these readers are looking for any information they can find about infant pyloric stenosis (“PS”).

Despite being the condition which takes more babies to surgery than any other, most people have never heard of PS – although they would know several people only because they have survived PS.

This very early and otherwise fatal condition does sometimes leave long-term and damaging consequences, however, as does the operation – even today but even more often as PS was managed in the past.

So it was like a breath of fresh air when an English reader sent me her story of PS.  I pass it on with my warm thanks to her – and an invitation to other readers!

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On a cold January night, anno 1951, I arrived on the planet in a town in the county of Staffordshire, England.  All seemed well at first as I was a “normal” birth weight and not premature; rather, said my mum, about 2 weeks late.  According to what I was later told, my age at the moment of my pyloric stenosis op. was, “about eight weeks”.  Now this seemed VERY young until I read some of the stories and comments on your blog, Fred… you yourself at the tender age of only ten days !  Making me seem positively “old”.  haha.  What does “fit like a glove” though, and is big news to me, learned from the comments on your blog/site, is the connection between Pyloric Stenosis and IBS !  This is an enormous revelation to me as no doctor has ever made that connection and I have been an IBS sufferer since the nineties.

However, dangerous as the op was back in those days, maybe being around two months old helped… because I WAS given general anaesthetic!  (Thank heavens!!)  Plus, I have not only survived to tell the tale – I realise after some of the horror stories I read on the site that I must have had a “Super Surgeon”  because my scar is neat, small, pale and has never given me a second of bother throughout my life.  And this includes two pregnancies.

The writer's right-of-midline scar from the 1951 operation to fix her PS

The writer’s right-of-midline scar from the 1951 operation to fix her pyloric stenosis

In fact, although I don’t recall what age I was when I first noticed my scar, I do remember that it was while my mum was dressing me one morning – and I’ve a feeling I could have been about six, but the memory plays many tricks so I suppose I could have been anywhere between four and seven!  And it wasn’t the scar itself that caused the memory but the fact of mum saying so calmly as she explained I’d been operated on as a baby: “You could have died.”  A sentence which, of course, has impact on any small child.

Grandma time02Looking back over the years, whereas my parents weren’t secretive and answered all my questions over the illness as best they could, I honestly don’t recall being able to put a name to the condition until the seventies when my lovely, lovely gran died.  A strong memory I DO have is of her once telling me that as a baby the scar seemed to reach from my neck right down my upper body!  But that it duly shrank as I grew.  However, it was at the refreshments after her burial that I came into conversation with her G.P. who immediately proclaimed, “Oh, that’s Pyloric Stenosis”.

Now my parents (both sadly passed now) were intelligent, well-educated people for the times, but I honestly do believe that in the fifties all parents/people were told very little from medical staff.  Doctors were put on pedestals and tended, sometimes, to talk down to people.  No internet meant one was dependant on encyclopedias (which we always had in the house) but they didn’t list everything and were out of date within a few years.  Either way, I can see from the blog that it wasn’t just me that wasn’t told many details… the forties and fifties were indeed an era of “get on with it”; that’s what we were told and that’s what we did!  Other memories I have are being told, “you are lucky to be alive”, “you must have a strong constitution” (which I have!), “it’s a condition that occurs mostly in boys… very unusual for girls” and mom saying: “I used to spread newspapers all around before I fed you, in preparation for the fountain “!

Yes, I was bottle fed, though that is a story in itself… my mother had tried to breast feed me (in fact was forced to in the prison-like hospitals of the fifties!) but due to inverted nipples she was not very successful and suffered much pain trying.  She did once tell me she was sometimes brought to tears by a most awful ward-sister who refused to allow her to bottle feed me!  Therefore, she could not wait to get home (they kept women in for a whole week in those days!) and use formula.  Now, an ancient memory has just come to me while writing that last sentence!!!  The formula she used was the brand called “Cow and Gate” … I can even remember the shiny red tins !!!!  Obviously this is not a memory from my babyhood but four years later when my sister was born and I would be “helping” mum prepare her bottle.  Amazing!  I can almost smell the lovely creamy milk powder!

But to get back on track… it’s only now, in retrospect, that I can link things up, as throughout my life I’d never met anyone, or spoken to anyone, who has had this condition. Luckily neither of my children (one daughter, one son) inherited P.S.  I’d been told it was rare, and that is certainly what it seemed to be until I read your site, Fred.  I was amazed and enthralled and spent hours reading everything… and absolutely shocked to learn that some babies were (still are?) operated on without general anaesthetic !!  This is barbaric… surely if I was safely anaesthetized in early 1951 there is no reason to shun it with all of today’s technology!  Remembering too, that I was not in a fancy London hospital but in one in Stoke on Trent – I only wish I could remember which one!  However, writing this has inspired me to try and find out… who knows if the records go back that far but it will be fun finding out!

What does resonate of course, in retrospect, is that it is little wonder that our parents couldn’t help or tell us more when they themselves were probably told next to nothing, as was the norm in those days.  As it was also the norm to “get over it”, “put it to the back of your mind” – what we would call nowadays, “Blocking it Out”.  In that era they would not have been allowed to be traumatized (was that word even in the dictionary back then?) as even veterans from WW2 weren’t treated for such a condition.  It was simply still unknown!  Therefore, I can’t help but wonder whether there would have been a kind of stigma attached to “bearing an unhealthy child” or certainly a guilt complex, mainly to be carried by the mother : did she do “something wrong” during pregnancy, during the birth, or even afterwards?  They probably did feel that there was a “finger pointing at them” whereas that wouldn’t be the case nowadays.  Well, not in most of Western Europe anyway.

I can’t help but realise now, as a mother myself, (albeit of 2 healthy adults) how worried, upset, stressed and devastated my mum must have felt with things going so badly with her firstborn.  She was, after all, only 21 years of age at the time!  Yes, she had the support of my father and her own mother, but it cannot have been easy.  It probably needs to be said here that she went on to have three more healthy children, my sister and then my two brothers. Hence, they did not have P.S.

Woman happy01Let me end with a big thank you to the unknown surgeon who not only kindly had me not only anaesthetized but “properly sewn up” so that I never had a problem or complex about my scar.  Of course, the difference being also Fred, that being a girl my swimming gear would always cover my scar as a child (I was sorry to read how much trouble yours caused you) and by the time I got to “bikini age” (around 16/17) it was hardly noticeable and almost forgotten!

Yes, I was Lucky !