Category Archives: Networking

Pyloric stenosis – untangling the emotional baggage

Another happy birthday and another poignant anniversary of my first and very early brush with death have just passed, and this cast me into a reflective mood.  This was focussed by some delightful time I recently spent with family members.

1940s surgery looked and was different from today's

1940s surgery looked and was different from today’s

As my previous post has recounted, I had pyloric stenosis (or “PS”, a blocked stomach) soon after my birth and escaped death by starvation by having an operation when I was only 10 days old.  I’m sure the trauma affected my mother, and this in turn affected me, added to by the crude way infant surgery was often done until the 1990s, plus the maternal deprivation that was part of 1940s hospital routines and infection control.

If you have had PS and are troubled by ongoing issues you suspect or know are related, you may want to reflect along with me!  A little background will help …

Only in the 1950s did some doctors begin to specialise in pediatric (infant and child) surgery, and only much later still did this and advances in medical technology see the development of anesthetics, anesthetic management and surgical techniques that are safe for infants in their tenderest first two years.  I have posted that Dr J Everett Koop in the USA was an early pioneer in this.

Only in the late 1980s did a few brave people in the U.S. medical community dare to address the commonly believed mantra that “babies don’t feel or remember pain”.  Among them, Drs K J S Anand and P R Hickey explored the facts and then available information and challenged the established beliefs and practices.  The late Dr David Chamberlain wrote articles and books about the infant mind and memory.  And the late Dr Louis Tinnin amongst others developed therapies to help survivors of crude early surgery to recognise, manage and overcome the post-traumatic stress that could result.

In recent years I have been able to connect online with many who have been affected by old-style infant surgery like I was, and I honour and thank those researchers and doctors who have done so much to give us the present safe and usually fairly damage-free ways of treating infants who need early surgery.

Thanks to the work of the above people (and others like them) I can now understand the mysterious, unsettling, embarrassing and scary inner struggles with which I’ve had to live for most of my nearly 70 years.  Only in the last ten years has the light and help given by these heroes and spread via the internet been moving me towards healing and inner emotional peace.

Here are some of the “issues” with which I struggled –

  • People02All my life I have had an overpowering and insatiable obsession with the 10 x 3 cm scar-web on my belly and the operation it represents. I recently posted about this obsession which has troubled me in a list of ways, some private and worrying, some quite public and embarrassing.
  • For the first 20 years I was afraid of hospitals and all my life I have had passive-aggressive problems with medical people and to some extent with anyone in authority.
  • Since the dawning of my self-consciousness I have had a deep “need to know”, to understand in some detail what this strange thing on my belly was and what exactly happened to put it there. When my parents fobbed me off I went to books, libraries and bookshops, and much later there was the internet.
  • I was often upset by visitors’ curiosity about my scar, my parents’ stonewalling whenever I asked them about it and my PS story – while I overheard them talking with visitors about this page in my life!
  • Certain words and seeing certain things were triggers that made my heart jump, made me blush, and funnelled my thinking to that first medical problem and procedure I had. I have posted about some of my triggers recently.
  • Digestion problems seemed to affect me more often than others in my family.
  • It became clear to me that my mind wasn’t as good as my 4 siblings’ was, that I was less well coordinated and confident than they are, and that I was regarded by my parents and others as rather sensitive and easily put on the defensive.

Most of these frustrations were obviously linked with my first illness and surgery, and I came to suspect the last two might well be too, as I found medical reports that linked PS and its surgery (pyloromyotomy) with them.  Very early starvation damages the baby’s developing brain, including intelligence and motor coordination, and PS survivors and their parents frequently report any of quite a list of abdominal complaints, including vomiting, irritable bowels and reflux, confusion over hunger or feeling full, and discomfort to severe pain often suspected as being caused by adhesions that had developed within from the scar.

Many of my posts on this blogsite discuss these matters.  Interested readers can find them by using the “Categories” search box at the upper right of this page.

How did “family time” get me thinking?

  • During a recent reunion I enjoyed with my four siblings, we discussed our gastro-intestinal behaviour – among many other things of course, but yes, we did! We found we had remarkably similar problems with diet, GI problems and necessary food cautions.
    This does not take away my gastric challenges but puts them in a wider context: it is well-known that PS is caused by high gastric acidity and quite often both these have a hereditary element, affecting more than one baby in a family.
    So my mild gastric problems caused my PS and it seems are not its result, nor that of the surgery.
  • I continue to feel confirmed in my observation that compared with what I see of my family’s gene pool, I have reason to believe that my very early days of starvation seem to have somewhat affected my brain development. However, I also recognise that PS survivors are represented on the full range of the emotional, mental and physical spectra!
  • Especially two of my grandchildren have come to remind me very much of some of my own emotional architecture. While happy to do things in public they hate with a passion situations where they feel “exposed”: having their named called out in a school assembly, being asked to pose for a photo.  They are emotionally sensitive, and clearly “people people” but can also be so focussed (or obsessed?) that we wonder if they are at the low end of the autism spectrum.
    Seeing these kids grow up shows me that some of my “issues” seem to have been caused by a combination of some of my personality traits and unhappy (even traumatic) remembered experiences that arose from my PS scar.
  • This leaves the first three items on my list as totally or largely unexplained except by the fact that some others with PS in their past have reported similar signs of trauma: obsessions, sensitivities, passive-aggressiveness especially towards authority, and “triggers”.
    The specialists in medical science, psychiatry and counselling I highlighted above, together with others who have worked on this, are able to tell us that indicators such as the ones I have mentioned are (or can be) symptoms of PTSD. PTSD has been long recognised in a relatively small group of people (usually war veterans) but was usually brushed off as “too bad, be glad, you’re a survivor”.  Only in recent years has PTSD been taken seriously, explored and much better understood, and as a result it is now better managed and treated.

QUANTUM2The coming of the internet has made it possible for people to network and share territory they have in common.  Much that was previously ignored is now shared, explored and explained.  I have learnt so much about my lifelong discomfort with aspects of myself!  I know now that my “secret inner self” is well within the bounds of what is normal after early surgery in a now hopefully bygone age.  I no longer have to worry about being weird or unique.  Others share and understand my pain and yet have lived a pretty normal life, as I have in fact!  I have been carrying the symptoms of mild ptsd, and counselling and therapy could reduce them but will never remove them.

So I can join those of a more outgoing and confident spirit and carry and show my scar with some pride: I am alive today because I’m part of the history of surgery, I’m grateful to God that I was born at a time when I could benefit from this, and I enjoy being part of the community of PS and infant surgery survivors.

And though I have missed out on certain gifts (how I sometimes long for a quick mind and body), I’m also grateful for the gift I have to explain things clearly, simply and patiently, and that in my senior years all this has come together in my blogging and online participation in the interactions of PS survivors.

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Networking after pyloric stenosis (5): Gastric grief

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


 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Once again I cannot help noticing that –

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

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

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

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.