Steph

Info

  • City
  • Sex Female
  • Company Polypeople
  • Contribution 10 Causes, 7 Events

Bio

* Onset of symptoms age 16 with up to 13 toilet visits a day!

* Social life, e.g. sleepovers/trips affected as I worried about the loo.

* Various prescriptions for IBS!

* Couldn’t continue trying to live with this. Referred for more tests.

* 1990 Will never forget seeing consultant with mum for results.

* Age 18 – FAP diagnosis. Told that I needed surgery or 99.99% risk of bowel cancer by 40.

* Really shocked – I burst into tears and ran out followed by Mum, also in tears. We just hugged in the car park.

* Fortunately, had contact with local lady who had recently had the same surgery, which was invaluable, as I was feeling scared and vulnerable.

* Two weeks later – single stage restorative proctocolectomy

* GP visited to apologise. I wonder if he had even heard of FAP!

* On the whole I lead a normal, healthy life and eat well.

* Alarmed in 2004 when told my follow-up could be relatively conservative and could possibly be stopped altogether! So…

* 2007 transferred to St Mark’s safe hands for annual follow ups!

* Taken part in three research projects. One of particular benefit to me and has led to a new prescribed product called Glucodrate, (restores my salt and water balance to normal).

* Involved with PolyPeople since 2009. Being able to talk to someone who is living with the condition can be so helpful.

* If I could change one thing related to FAP this would have to be getting rid of the windy and malodorous toilet episodes!

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