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

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4 thoughts on “Networking after pyloric stenosis (2): blockages and pain

  1. Wendy

    Absolutely extraordinary! So much pain and suffering. Folks led to believe that the PS surgery couldn’t have created the problems. My heart goes out to each person. I am SO fortunate to have had no problems from my surgery. I can’t believe how lucky I am. For those doctors to tell parents that surgery is 100% effective and safe is criminal.

    Reply
  2. Fred Vanderbom Post author

    I follow the several strands of discussion about infant pyloric stenosis on Facebook. The main thing I am learning is that both in the months and first years after the surgery and in later life, PS surgery is all-too-often NOT problem free. I too have been spared the most common and serious physical problems such as reflux, IBD, and adhesions, although my PS story has scarred me more than physically.
    So I share the widespread and (it seems) growing anger at the bland and deceptive assurances given to (again: it seems) many parents, and the denial to patients of fairly obvious links between PS surgery and abdominal complaints… and this by both doctors and websites.
    I also share the annoyance and frustration over the lack of thorough research into these apparently rather common short- and long-term effects. Sure, I know that research funds are hard to get, that PS once neutralized is a small problem in comparison with many other conditions, and that the cause of abdominal complaints is often hard to diagnose.
    But then, how can the medical world be at once so unaware of the problems, uncommitted to research and yet blithely confident about the message it puts about?

    Reply
  3. Wendy

    Well said, my dear Fred. “Blithely confident” indeed! Is it a case of out of sight, out of mind? Once the surgeon is done, he or she is really done. Once the “PS is neutralized,” the common short and long-term effects are seen as irrelevant? The baby’s life was saved–that’s enough. Is it this type of attitude?

    Reply
  4. Fred Vanderbom

    Because of the lack of research, I don’t feel free to write about this troubling subject without a few “it seems” and “apparently’s”! On the web there are certainly a few stories from “satisfied customers”: parents who heap praise on their doctor and/or hospital, and “PS survivors” who tell concerned people like me that their illness or surgery left them without any noticeable effects.
    And we know that on a public forum like “Facebook” people will usually air their displeasure and rarely say “Thank you”.
    So without substantial research, we can only base our assessment and writing on the stories and emotions of the many who are not happy, on what we know of human behaviour, and on our own more general observation and knowledge of the medical “empire”.
    What you characterize as the prevailing attitude of medical people agrees with what I and many other have experienced.
    For medical people I understand that the often heavy workload, narrow specialization, and risk management practices would be a large part of the reason for this attitude of, “a life saved, not my responsibility, now move on”.

    Reply

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