Steph, Volunteer
Steph, Volunteer
  • Diagnosis: FAP, Restorative Proctocolectomy with J-Pouch
  • Steph was diagnosed in 1990 when she was 18
  • She was fortunate to find someone local to her who could give her advice on what to expect from her surgery
  • Leads a normal and healthy lifestyle post surgery
  • Takes part in studies for St Mark’s
  • Involved with PolyPeople since 2008

Steph’s Story

I was diagnosed with Familial Adenomatous Polyposis (FAP) in 1990. I was 18 years old and I have no other family members with the condition. I remember having the onset of symptoms when I was about 16.  I had to go to the toilet about 13 times a day which compromised my social life, e.g. staying at friends’ houses or going away on trips, as I was worried about the toilet situation.  I went to my family GP several times and was prescribed various things, including Fybogel, to try and control my loose and frequent bowel action.  I was told that I had irritable bowel syndrome (IBS) which was quite common.  It was in 1990 that I went back to the GP and said that however common IBS was I couldn’t continue trying to live with this. It was only at this point, after two years, and when I was also experiencing bleeding from the back passage, that my GP decided to refer me for further tests.

I was seen at Hinchingbrooke Hospital in Cambridgeshire for a barium enema.  I will never forget the day I saw the consultant with mum to get the results. He told me as gently as he could that I had FAP and that I needed surgery to remove my colon and that if I didn’t have the surgery it was 99.99% certain that by the time I was 40 I would have bowel cancer.  This was a real shock when I thought I had IBS and had an otherwise clean medical history. I remember going to the toilets with mum after the appointment where I burst into tears and ran out of the toilets and the hospital.  Mum followed in quick pursuit, also in tears, and we just hugged in the car park.

“I was really fortunate to be put in contact with a lady who lived locally and who had recently had the same surgery.”

I found it invaluable being able to meet and talk to her, as I was feeling scared and vulnerable.  She also came to visit me in hospital after my operation by which I was really touched.

Two weeks later Addenbrookes hospital in Cambridge called and said that they had a cancellation and could I come in. I had my single stage restorative proctocolectomy performed by Mr Everett and was in hospital for a total of three weeks.  Because everything happened so quickly from diagnosis to major surgery I didn’t really have a chance to come to terms with the enormity of what had happened until sometime after.  When I went to the GP saying that I couldn’t cope living with IBS I think I was expecting that further investigations would be carried out, treatment prescribed and I would be cured. What in actual fact happened was that I was diagnosed with an incurable and multifaceted condition.  I remember my GP coming to visit me at home following my discharge from hospital.  He bent down next to me whilst I was sat on the settee and said how sorry he was but that he never suspected the diagnosis I was given.  He said I always looked a picture of health.  I wonder if he had even heard of the condition!  When my mum saw the consultant who gave me my diagnosis years later he asked after me and commented on still remembering the day he had to give me the news.

I have had a couple of complications since my original surgery, mainly to do with pelvic cysts which have required further surgery, but on the whole I have been able to get on with leading a normal, healthy life.  I found that a few months post-surgery, once my new pouch had settled down, I didn’t really have any restrictions on what I could eat and never have.

In 2003 my follow up care transferred from Addenbrookes to Bristol, following my move to that area in 2000.  Up until this point I had had annual and latterly biannual gastroscopies.  I was most alarmed when it was initially suggested in 2004 that my follow-up could be relatively conservative and could possibly be stopped altogether!  I did have a gastroscopy and my first pouchoscopy in 2005 and was due to be seen again in 2007.  During this time I was becoming increasingly anxious about my follow up and learned of St Marks, which is an international centre of excellence. In 2007 I asked my GP to refer me to St Marks and I now have annual follow ups and feel that I am in safe hands.

Over the last four years I have agreed to take part in three studies run at St Marks.  One of those, ‘Sodium loss following colonic resection’, has been of particular benefit to me personally.  Following the success of this study there was a product called Glucodrate, which was available on prescription for a short time.  Taking this to restore my salt and water balance to normal control levels has had a positive impact on my health and wellbeing.  Unfortunately this product has now been withdrawn, as the manufacturer stated that it was not being clinically monitored as it should be.  The alternative is the St Marks E-mix recipe

I have been involved with PolyPeople since its inception in 2009, as I want to be able to offer support to others.  As already mentioned I found the support from someone in a similar situation to me to be of great benefit.  In addition to clinical care, being able to talk to someone who is actually living with the condition can also be helpful.

“One final comment: I think if I could change one thing related to FAP this would have to be getting rid of the windy and malodorous toilet episodes!”