Tag Archives: medical research

Three responses to infant surgery

Infant surgery does different things to different people.

This post introduces readers to three men whose infant surgery recently prompted them to go public, each in his own way.

yay1Dave Outred went online to express his joy and gratitude for his full and satisfying life, apparently unaffected by the rather messy start to life he had.  After developing pyloric stenosis (“PS”), he was operated on twice in a London hospital in 1955 to remedy this rather common condition when he was about 6 weeks old: when it became clear that the first “procedure” had not dealt with his stomach blockage, it was repeated a day or two later, leaving him with two rather large and untidy scars.

But, he wrote on Facebook (to a “closed” Group) –

I say, be proud of your scars because you are a survivor!  I have had a great life: played sports for my town as a school boy, enjoyed camping and an outdoor life with the scouts, been married twice [currently 31 years], followed my football [soccer] team through good years and bad, semi-retired at 48 after many years of working 6 and 7 day weeks.  Lots of friends and a full life.  Recovery from P.S. is the start of a life you may never have had.

ButchBee02aJay Jacobs’ infant surgery was to deal with volvulus, a twisting of the bowels that like PS blocks the passage of food but can also quickly cut off the blood supply, causing gangrene and death of the affected intestines.  Perhaps because he was not expected to live, perhaps because cosmetic concerns rated rather lowly in 1957, perhaps because of his earlier weight problem, he has also been left with a very large and sunken scar.

Jay Jacobs found it harder than Dave Outred to feel accepting and confident about his disfiguring scar and count his blessings… until he found his niche.  Jay Jacobs always had a weight problem but in his later adult years he succeeded in beating this: he found diets and fitness programs that worked for him, participated in the Biggest Loser program on TV, and developed and promoted his discoveries, weight-loss and new-found wellness to become a successful entrepreneur!

Quite likely because of his accomplishments, he was also persuaded to rise above his negativity about his abdominal scar.  He appeared “topless” on TV and online, and wrote about his former “shame” and new-found confidence about his torso and story.

Henry Fox like Dave Outred also had PS and early surgery to remedy it.

Genes baby1It left him with a lifelong passion for the importance of medical research.  Many PSers realise that up to about a century ago, the diagnosis of infant PS was almost always a death sentence: the surgical remedies then on offer were so crude and horrific and so rarely successful that most parents preferred to see their little one simply expire.

Henry Fox knew this and also that there are still many conditions of infancy that although less common than PS need research funds and workers.  He wrote –

Owing to the type of research now carried out by Action Medical Research, I was able to undergo a small operation to rectify this and am now able to make the most of my ability to digest properly…!
Since then, Action Medical Research together with its most famous sponsor, Paddington Bear, have stayed very close to my heart.  I spent several days as a young child attending Action Medical Research’s Paddington Bear tea parties, over-indulging in a fair few marmalade sandwiches to help raise funds for their life-saving research!!  This association has stayed with me and it is rumoured that (aged 27) I may still possess a Paddington Bear duvet cover.

 Henry is seeking sponsorship for his running in the 2016 London Marathon (24 miles or 40 km on 24 April) to raise funds for medical research.

Nerdy MD2For many years now I have been reading and writing about the many issues around infant PS, and seeking greater recognition of the turbulence that affects a fair number of those affected by this rather common ailment.

I have been intrigued by the unity among parents affected by PS: those who write report as one that it was their most traumatic experience ever – and that all too often it left them feeling cheated in one way or another.

On the other hand, those who themselves have had PS respond and reflect on it in many different ways, and the reports above are typical but only samples of many very different responses.

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.