Scars that strangle (2) – Kathryn’s Story

I am grateful to Kathryn Thomas (not her actual name) who has been willing to tell something of her lifetime of trouble with what are most likely adhesions from surgery when she was very young.  Kathryn has battled in vain to date to have her discomfort and pain recognised and treated.

There are many stories like Kathryn’s.  These personal accounts reflect much pain and discomfort.  But much more, they express frustration.

Kathryn is in her mid-30s and lives in an English city where she is employed in a secondary school; she has three children, two teenagers and a pre-schooler.

She was born in 1974 and developed pyloric stenosis (a blocking enlargement of the stomach’s outlet valve) which was remedied by an operation when she was 6 weeks old.  Her mother has told her that the wound was 5 cm (2 inches) long;  it’s vertical and above and to the right of her navel, with the pockmarks left by four stitches which in more recent times would have been buried under the skin.  Today Kathryn’s scar is 12 cm (5 inches) long and its lower part has clearly become attached to her bowel, which has caused problems.  She remembers the scar’s tightness and pulling, and constipation and cramps from the age of 4.

She writes:
Throughout childhood I complained that my scar hurt but this was dismissed by several GPs as part of growing!  At 18 I had my first pregnancy, and had a dip in my stomach as it swelled, with a feeling I can only compare to being jabbed with a pin.  It wasn’t so bad with my second child a year later, although the dip was there again as my stomach grew.

Kathryn had her third pregnancy at 33 years old, and this last baby was bigger than the first two.  She collapsed with severe pain just below her right ribs in May 2008, and was rushed to hospital in an ambulance.  She was diagnosed with kidney stones, but was told to go home and drink plenty of water to flush them out.  Nine weeks later she was still in agony and was referred to a urologist who told her the stones were not big enough to cause the pain she was in, the largest being just 3 mm, smaller than a grain of rice!   Something else was causing the pain, but nobody seemed very interested in helping her to get to the reason for her trouble, let alone helping her to overcome it.

Kathryn has been shuttling between specialists since then.   A colonoscopy in December 2009 showed everything was normal.   Another scan in May 2010 showed the small kidney stones had gone – but the pain still lingers.  Kathryn’s GP suggests now the reason for her pain and discomfort might be her pyloric stenosis scar tissue, but as yet this hasn’t been looked into.   The tests that are ordered are to rule out everything else first.

In December 2010 Kathryn had an endoscopy which found she has a hiatus hernia, but that this is not connected to her problems of the last few years.   According to the specialist who did the endoscopy, it’s a ‘sliding’ hiatus hernia and higher up in the abdomen.

Kathryn comments:
I feel that they really don’t have a clue!   My scar is definitely pulling upwards towards my right ribs and I am rather unhappy that I have had to suffer for this long to get any answers!  I have been back and forwards between the specialists so many times now, as none of them could pinpoint the pain, but if I were able to ‘operate’ on myself, I am convinced I could put my finger exactly where my pain is!   The pain is at best mild, but can get worse, usually 30-45 mins after eating.  It is constant, but I have learnt to recognise offset and control with painkillers.

What a way to live!  It will be no surprise that Kathryn feels very grateful that none of her three children have inherited her pyloric stenosis or had early stomach surgery.  She is convinced that her life-time of constant stomach problems, cramps, constipation, stabbing pains, nausea, etc etc has been a result of her surgery as a baby, and wouldn’t wish it on anyone!

There are many similar questions and complaints on the web from the parents of children who have had pyloric stenosis surgery and who suffer from symptoms such as indigestion, bloating, pain and tightness after eating, nausea, vomiting and constipation – all of which typically remain unresolved after continuing consultation with GPs and pediatric specialists.  Their children are not dying but they are distressed.

Kathryn Thomas wishes good luck to all the parents who are trying to get similar troubles with their children sorted out, and urges them to insist on help if their child is continually suffering.

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One thought on “Scars that strangle (2) – Kathryn’s Story

  1. Wendy

    What a harrowing story. I had ps surgery at 3 weeks old and am so grateful that I’ve had no physical complications from this operation. What stood out to me in Kathryn’s story is that if she were to operate on herself, she could easily pinpoint the place of pain. Each of us is the expert on his/her own body and health professionals could improve their efficacy one hundred percent by simply listening and following up on WHAT IS BEING SAID by the patient. My heart goes out to her. I hope she stands by her own insights and gets relief from what she senses is the real problem.

    Reply

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