FAP – Familial Adenomatous Polyposis

[lastupdated]

Written by: O’land Community MemberAndypig

FAP: An owner’s guide
(Well it is my body; I think I own it (apart from the bit’s now missing))

Ok where to start. I was born with a defective gene on chromosome no 5 (wasn’t there a song about it, oh. no that was mambo no 5). I got this little gift from my mum who got it from her mum etc etc. I am not bitter about this. Hey, I like life and it was there before I was. (For at least 4 generations that we can find) it makes the chance of passing on the gene a 50/50 chance. For me it was a yes, for my sister it was no.

The gene brings about excessive growth (polyps) at the onset of puberty. (cheers. As if there wasn’t enough going on then) these can be of a couple of types: large single or small numerous ones. They then spend a happy time not up to much, it isn’t until you get into early 30′s that maybe, you get a bit of a warning, something aint right, around the back. Symptoms are rectal bleeding, abdominal cramps and diarrhoea.

At this point things get to be a little dicey, your hundreds of little polyps now bored of their surroundings start turning cancerous and this is not to your benefit. Now in your 40′s its time to look over your shoulder and spot the Grim Reaper taking a great deal of interest in you. There are no 50′s 60′s or 70′s you have been short changed on your three score and ten years.

So prevention is better than the cure, in the early days you had your children in your prime when the polyps were not a problem, but then later you got ill. Oops too late.

Later on, now you know about the gene and the odds on your offspring carrying the gene? There was only a lot of thinking and soul searching, loads of “ what ifs” as well.

But nowadays there is what the papers like to call “Designer Babies” (such a Bad euphemism, but for us FAP sufferers who would like to have children without mambo no 5 we will take it).

I was born in late 1961. My sister 18 months later in mid 63. Then not a lot happened, grew up went to junior school, then high school. Then mum started to have a trouble travelling. We knew where every public toilet was within a set route. Then in December 1973, she got to see a colorectal specialist. On the 19th she was operated on and given an ileostomy with a free Barbie butt thrown in. The odds on her surviving were not good but eventually in mid January 1974 she came home (at the time of writing this, she is in her 70′s and still going strong).

It is at this point that FAP was diagnosed and the start of my journey through the NHS at the tender age of 13. In 1974 there was not the lovely quick blood check you have now. Oh no It was a full examination under anaesthetic, 3 days in hospital.

One to get ready, one for the show, (hey we were going to theatre so there has to be a show) and one to recover.

Preparation day was not going to be a favourite in anybody’s book (ok maybe in a specialist book shop). Then out came only what could be described as torture equipment. A large stainless steel trolley upon which were 2 large steel buckets, 2 or 3 tall stainless steel jugs of warm soapy water and a rubber hose with a funnel attached and if you need a description as to what and how its used I suggest you go look for the specialist book shop.

Later on it would be Glycerol suppositories. Then later again it would be Phosphate enemas, then onto modern Picolax. so if you have to take these modern osmotic laxatives don’t complain or due to cut backs (or maybe the nurse you just wound up) I am sure a rubber hose and funnel could be found.

Schooling was also slotted in. Quite novel in its way, must have been like an old village school in the 40′s one room and all ages together. As we were all kids together, broken bones mixing with appendectomies and the evenings being long and no TV, we made up our own games, bed switch (*) over and under (a race round the ward. Simple, over one bed under the next (**)) hide and go shout for a nurse and the ever-popular joke and story telling (***)

(*) We didn’t move the beds. Only the records/notes and the lockers

(**) The introduction of hydraulic beds has since got this game banned under health and safety regulations

(***) Usually on a last warning from matron behave or else you’re off to the geriatric ward. (To a 13-15 year old a pretty good deterrent)

What was a once a year visit, soon switched to twice a year for me, while my sister went the other way, once every 2 years.

Then in my 16th year, I was scheduled for a little op to remove a loop from my colon that had made any further (deeper) examination impossible so rather than the children’s ward, I got to move into the male surgical ward (did they not trust me).

I had just finished my exams (year11, (5th form)) and was due to start at (year12, (6th form)) school after the summer break.

Was signed in and off to surgery I went. Woke up feeling a little rough with a odd feeling…

Things hadn’t gone to plan when they opened me up, they found that there had been rather a lot more polyp growth than anticipated the end result was a total colectomy Ileo-rectal amastomosis (whoa! this is an owners manual not a doctors one) ok they removed all the colon and appendix and reconnected the end of the small intestine to the rectal stump where the colon used to connect. (Very much like the modern pouch systems, but without the temporary stoma.)

Then on to recovery, spent a week tied up with drips and drains slowly losing each one. The worst one was the mechanical drain. They tried a bag with a weight on, to drain fluid from my abdomen. It wasn’t working so a small vacuum pump was installed under my bed and a jar with 2 pipes one to the pump and one to me. This was fine when you’re awake but in your sleep you move about a bit. I kept lying on the pipe, the pressure would build up, the pump would wake me, I would move and get a sudden implosion as all my insides tried to get into the jar at once (ah what fun).

Then moved me out from under the sister’s office window (told you they didn’t trust me) into the recovery ward where the saying was “the further you got from the sisters office the better you were”. After 3 weeks I was home with a new body to learn. Ended back in hospital after four days due to eating too many bourbon biscuits, I think the term is a small blockage (do not do this it hurts). It was at this point I was taken into the sister’s office and given the serious talk about having children and the likelihood of them having the gene and having to go through what I had.

3 weeks later I started a new school (and why did no one mention taking some kind of medication like Imodium).

At this point I would like to say never trust a toilet to have paper.

Even izal glossy paper has a shiny and a rough side it can be made less so by rubbing and screwing it up into a ball then straightening it out again.

But the best way is to have your own.

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