Story about Ostomy .

F.A.P.

Jul 19, 2016

By: Amanda


I was diagnosed with a condition called familiar Adenomatous Polyposis in 2005 after having genetic testing it turned out I never inherited it from my parents, I am the first in my family to have this terrible disease.

I had hundreds of polyps in my Colon so had to have it removed in 2006, I decided to have an operation to remove the diseased bowel as I was advised if I didn't I would get bowel cancer at some point in my life, I had Ileoanal anastomosis (ileoa Anal pouch, or j-pouch it can be called) .

The operation was suppose to be in 2 stages. first stage a stoma then once pouch and sutra's had healed then they would do reversal, however I couldn't have a stoma and it led to complications I was in hospital 9 weeks after it had healed I was discharged and the next 2 years were like eating food as a child again.  Introducing food gradually into my diet avoiding certain foods like sweetcorn, tomatoes etc because they caused me lots of pain discomfort or even a blockage.

At first every 2 years I would go back to hospital for camera down into stomach and small bowel to check progress of polyps and up to 2012 they were ok, then in 2012 I was told that polpys had increased and we're quite big so they were removed by APC a form of lazer that burns of the polpys at blood supply, now I'm going back every year now for camera down and the disease is progressing into small bowel.

I also have auto amune disease, chronic anemia with vitamin D and B12 deficiency,  pyoderma gangranosum and Ankylosing Spondylitis now which the Rheumatoid consultant say these are assossciated with the bowel disease amongst other conditions like Asthma and eczema, ulcerated Colitis and Chrons disease.

This has changed my life dramatically and not enough is known about the disease F.A.P here in the UK.  the doctors at my practice and other practices need to know more so they can understand what it's like for us the patience and then can keep on top of test etc. 

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