Pyloric stenosis and adhesions

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

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

What are adhesions?

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

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

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

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

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

What can I do about adhesions?

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

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

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

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

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

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

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

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

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

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7 thoughts on “Pyloric stenosis and adhesions

  1. Wendy

    Great point about so-called “no-problem pyloric stenosis surgery”. The picture of the adhesions is priceless. So very clear. I’m glad that you keep reiterating that surgery can be avoided and provide references to past posts. I’m sure so very many people are being helped by your wise suggestions and explanations. Onward!

    Reply
  2. Michelle

    My daughter is one of an identical twin and at four weeks old had an operation for pyloric stenosis which was successful. She is now 9 and is suffering really badly with stomach cramps. She has had lots of tests for food allergies and stool samples taken for infection but all came back as normal. She has had an ultrasound and bloods which again normal. She has been in and out of a&e with terrible stomach pain which is getting worse by the day. Particularly after eating… does anyone think it could be adhesions? I am so worried about what to do for her.

    Reply
    1. Fred Vanderbom Post author

      So sorry to hear about the trouble your daughter has been suffering with, and the inability of the medical people to help her. To my lay understanding the cause could well be adhesions, but more tests would be needed to establish the cause. You may have read my post about the many possibilities.
      I do hope you get some feedback via this blog, but encourage you to post also where there is even more “traffic”: Patient UK has a large forum: PYloric stenosis and long term effects, and (if you area member) Facebook has several Groups: “Pyloric Stenosis Support Group” and “Äwareness of Pyloric Stenosis” are currently the busiest.
      Best wishes for some clarity and real help.

      Reply
  3. Sarah Beverly

    I had pyloric stenosis as a baby, had the surgery, now 26 years old and having a massive adhesion problem. From the looks of it it’s very common, yet can’t find any help. I’m in so much pain every and all day. It’s like these doctors never heard of such a thing. When it can’t be seen in tests and screening how can I prove it and get help?!?!

    Reply
    1. Fred Vanderbom Post author

      I’m grateful, Sarah, that although almost all abdominal operations result in the formation of adhesions, they have hardly affected me, and that they trouble only a minority. But that doesn’t help you. Sadly it’s hard to find a doctor who doesn’t brush off patients with suspected adhesions, because they’re hard to treat and are best left alone… As you’ve mentioned, they don’t show up on any tests or scans,and they’re in fact very hazardous to treat. I don’t like saying this, but if you can, learn ways of managing this problem. Surgery will most likely cause new and more adhesions, as they usually trouble people who are prone to develop them in a major way; in my files I have PSers who have had adhesions surgery before age 5, and others who’ve had it several times by the time they were age 60. Various treatments have each been found helpful (and not so, frustratingly) by different people: self massage, professional massage, ultra-sound and heat therapy, diet, and as a last resort surgery. Try to ask around for a doctor who is kind and willing to help people with difficult conditions: sadly, most GPs like to see standard condition and quick-fix patients. And be wary of the doctor who thinks without much reason that the problem is your gall bladder: many PSers have lost their GB, been told afterwards that it wasn’t necessary, and found their adhesion problem became worse in time.
      Best wishes!

      Reply

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