Living a life
with...
by Kathleen

STORMS MAKE TREES TAKE DEEPER ROOTS || PART 2 OF MY F.A.P STORY



*The following post was mostly written prior surgery, in the month of March*


As if the last few years haven't been stressful enough, it was about to only get worse.
Having gone through two colonoscopies and a sigmoidoscopy, I thought that that they would be only the first of many more. During my appointment with Professor Dunlop on February 26th 2016, I was told that they're are now over 100 polyps and that he seen no point of going for a colonoscopy this year - it was beyond that. 

Though I still found it a shock, I was prepared for what he next had to say. Deep down I was ready for it. I knew that I wouldn't be able to go through the prep of another colonoscopy so I guess this was a form of music to my ears. That being surgery. Though some people that have this condition can hold off till their early 20s, I was told that it would be risky for me and by the time I reach 22, 23 or even 24 it could be too late for me.

Though I know it’s the right time, no 18 year old should be faced with this. Surgery is the only answer to cure and remove these polyps as it takes only one of these polyps to turn cancerous before it would be too late.

I had been considering getting the surgery since my last colonoscopy in 2014 but the only thing that terrified me was the idea of needing a colostomy bag, even if it was to be a temporary one. I even turned around to my mum and said I’d rather live as long as I can without surgery if it meant that I wouldn't have to have a colostomy bag. I know that sounds terrible of me as they're worst things in life, but for me that was going to be a life I wasn't really prepared to live. Luckily for me however, I was told that I wouldn't need one, not even a temporary one which I am thankful and very grateful for as I know many people that go through this end up with one. 

I left the appointment on Friday 26th February '16 having been told I was needing to go for a scan to check for desmoid tumours to be safe and that I was going to be booked in for colorectal surgery just after my university exams, so in May. Two months from now (from when I write this).

I went for my scan a couple of weeks after and the results came back all clear, which was almost guaranteed as my mum had none (they are usually passed down), but nothing with this condition is ever really guaranteed. This meant that there was nothing to worry as far as these rare fibrous tumours are concerned as desmoid tumours have the tendency for recurrence even after treatment, so it makes further treatment of these relatively rare fibrous tumours challenging. I am lucky in this sense to not have any.

Part of me is excited (maybe a bit of exaggeration there) to get my colon removed so I don’t have to worry about colon cancer, or having the thought of ever having to go for a colonoscopy, and just getting it done and out of the way. I am also…not scared, but nervous about after the surgery for when I wake up. Like I have explained in part 1 of my F.A.P story, I have an irrational fear of needles and having my mum go through this operation she is able to give me an idea of what to expect from a first hand point of view. IV drip, patient controlled analgesia (PCA) pump, catheter, nasogastric intubation tube, oxygen tube, and that clippy peg thing that goes on your index finger - the lot. Oh and not to mention the stitched up incision under my bellybutton. I’m going to stop there though because all this though is not doing me any good right now. Yet, it’s constantly sitting at the back of my mind and sometimes I need to look at the positive and realise, this surgery is going to save my life essentially. Though I will be in the hospital for about 10 days and with a recovery time of three months, in the end it was going to allow me to live a normal, long life unlike if I wasn't to have the surgery. Otherwise, polyps would turn cancerous and in the end I would be lucky to make it to 30 probably after a number of years in pain.

Though no matter how much I mentally prepare myself, I’m not going to be ready when the time comes. I can bet you each £100 I will get upset and worried when I’m admitted and I most certainly can’t prepare myself for the aftermath. I know what tubes to expect but that’s about it, and even still it will differ from what my mum had. But what I do know is that I am ready to face this now and I know that come August when I go back to uni, I will feel better within myself and not have the thought of needing surgery hanging over me.


NO RAIN, NO RAINBOW || PART 1 OF MY F.A.P STORY


I was diagnosed with a genetic condition called Familial Adenomatous Polyposis (F.A.P) at a very young age, but was never told I had the condition until later on. 

F.A.P is an inherited condition in which leads to the formation of hundreds of polyps within the bowel. Whilst these polyps start out small and few and not so dangerous, they increase in number and grow in size and eventually if left untreated, cancer of the colon occurs. 

From the very beginning, I can remember being about 4 or 5 and going to the doctors to get blood tests. I was so young I didn't question the reason as to why I had to go for them, but I do remember when I got back home I was given my first Build-A-Bear from my family as a “reward for doing so well”. I never understood until I found out about those tests why I was given Anastasia (the bears name). It was because those blood test were potentially going to decide upon what kind of life I was going to live.

Like said, F.A.P is known as an inherited condition that can be passed down generations, but it is not always the case. For my mum she was the first one to develop this condition within the family and found out when she was in her early 20’s. Unlike me, she found out at a late stage, after six years of pain and many Dr appointments where she was sent away. When she was eventually diagnosed with F.A.P, the polyps hadn't turned cancerous but she had to get surgery to remove her colon to prevent colon cancer developing. After that I came along (insert smily angelic face) and there was a 50/50 chance I would have the “faulty gene”.

F.A.P was - and still is - something I don’t really talk about, but I knew growing up that whether I had it or not, it was going to play a big part in my life. I have watched my mum go in and out of hospital for as long as I can remember due to “blockages”. This was not easy for me growing up seeing my mum ill in hospital and due to the absence of my father, I would have to stay at relatives houses. There was times that she was in hospital over Christmas and it was really hard for me, let alone for my mum who lay there with all these different tubes in helping her to recover. It’s not easy to see someone you love so much in such a bad state of health that they need to be hospitalised.

When I hit my teens, my mum tried to get me to visit the Dr’s and to what I thought was to get tested, but I was very reluctant at the time. Looking back, I guess I was just scared. Not scared of getting told I had F.A.P but finding out that it would almost be likely that I would need surgery in the future, which for me is a huge thing as I strongly dislike hospitals (for many reasons) and I truly suffer from trypanophobia (extreme fear of needles). After putting off going to the Dr’s again and again, my mum let it slip that she already knew I had it. It being Familial Adenomatous Polyposis.

I was angry and upset that she hide this from me since I was about 4 and that most of my family knew before me, but looking back it was very selfish of me as I now know it must have not been easy. Sometimes though I can’t help think that maybe, if I was told when my mum got the results back and was brought up knowing I had this genetic condition, I can’t help but think that maybe I would feel more confidant in myself and not feel so…faulty. However I must say that I am not blaming my mum or wanting to make her feel bad or seem like she was hiding something as I can now see that there was no right or wrong way for me to find out. She done what was best and though I may not always see it being the best way for me, I don't even know myself what the best way is to tell your child that they have a potentially life threatening condition if left untreated. 

Fast forward a few years, when I was 15 I met with specialist colorectal surgeon, Professor Dunlop who also ‘deals’ with my mum, and I was booked in for a colonoscopy (a camera that looks the inside of the colon) for the 8th August 2013 - 20 days before my 16th. I can’t remember a lot of what I was told result wise as on the day I got so wound up and in a state not over the procedure but over the fact I needed an injection of anaesthetic (needles!) but they saw what they were expecting to see - roughly 50 polyps lining the colon. They removed a few of these to send for biopsies to see if these were indeed abnormal and if any were cancerous. I was told I would have to come back every year for a colonoscopy to keep a look out. I got the results back in a consultation about 6 months later with Dunlop and although they were not cancerous, they were abnormal. 

Another 6 months passed and before I knew it August 2014 was upon us and I had another colonoscopy scheduled for the 25th - 3 days before my 17th Birthday. This time it was a whole lot harder. Not the procedure or the thought of needles as much, but the prep. I can’t express how awful I found it. Mentally, emotionally and physically.

The day before a colonoscopy it is required that you do not eat but drink two litres of a laxative they send. If there was a day that I could skip, this is it. This time it was a lot harder because I knew what to expect. The putrid smell and taste was enough to make me gag, throw up and even cry numerous times throughout the day. My mum suggested mixing it with diluting juice to make it taste better. Wrong move. Long story short, tropical flavoured diluting juice (or similar kinds) will make me throw up to this very day just with the smell. 

On the day of the procedure, again I got in a state over needles so much so the nurse told me I would be given Entonox (gas to make you more relaxed, often given to women in labour) the next time to help with the anxiety.

I never heard back after that colonoscopy and the next year (2015) I wasn't sent an appointment. THANK GOD because I said that I wouldn't be able to go through the prep again as I struggled to put the laxative past my lips never mind keep it down the last time!

This year I was sent an appointment to meet with Professor Dunlop on February 26th. I thought that this was just to see about another colonoscopy as I missed last year but to my surprise, nope! He wanted to do a sigmoidoscopy right there and then (unlike a colonoscopy, this just looks at one end of the colon and not the whole thing). ANNDDD of course I got all upset again but this time no needle was involved and it only took two minutes. Literally. So I felt silly getting so emotional over it and actually laughed it off afterwards. The laughs were short lived however as soon as I sat back down I was faced with the news which I was not wanting to hear for at least another year or two but was strangely prepared for…


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