Living a life
with...
by Kathleen

NEEDING SURGERY?! || PART 2 OF MY F.A.P STORY



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 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 me 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 music to my ears in some form. 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 to wait till I am 22, 23 or even 24 as it could be too late.

I know it’s the right time as it takes only one of polyp to turn cancerous before it would be too late, so surgery is the only answer to stop it. But I can't help but feel like no 18 year old should be faced with this.

I had been considering getting the surgery since my last colonoscopy in 2014 but the thing that terrified me most was the idea of needing a stoma bag, even if it was to only be temporary. The thought of my life changing to that extent worried me. However, for me, at one of my consultations I was told that I wouldn't need one, not even a temporary one as Dunlop was going to do the surgery all in one stage. To which I am thankful and very lucky for as I know many people that go through this end up with one as it isn’t as common for it to be able to do it all in one stage. 

I left the appointment on Friday 26th February 2016 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 after my university exams, in the summer - five months from now when I write this (March '16).

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 about as far as these rare fibrous tumours are concerned. Desmoid tumours have the tendency for recurrence even after removal, so it makes further treatment of these relatively rare fibrous tumours challenging. It is another weight off my chest 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 to go through another colonoscopy. I feel like it's time to just get it done and out of the way. I am also…not scared, but nervous about after the surgery for when I wake up. 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 tubes, blood pressure thing, 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 this 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. Though I will be in the hospital for about a week and with a recovery time of anywhere from three months, in the end it was going to allow me to live the life I was supposed to live. Without the surgery, polyps would turn cancerous and spread to other parts of my body such as the stomach and in the end I would be lucky to make it to 30.

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. I have no idea what to expect, what pain I might feel or what it will be like to be stuck in a bed all day and all night. But what I do know is that I am ready to face this now and I know that come September when I go back to university, I will be in a much better place, living the life God planned for me.





(This post was mostly written in March, prior surgery)

COULD IT BE CANCEROUS? || 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, few in numbers and not so dangerous, they grow in both size and number. Eventually if left untreated, all it takes is one polyp to turn cancerous leading to colon cancer.

From the very beginning, I can remember being about 4 or 5 and going to the doctors to get blood tests done. 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, Anastasia, from my Aunty and a couple of pixel-chix’s from my mum to add to my collection as a “reward for doing so well”. For years I never understood why I was given gifts for having those blood tests done, as it wasn’t the first time I had blood work done, yet it was the first time there was a fuss surrounding it. Little did I know at the time it was because those blood test were potentially going to decide upon what kind of life I was going to live.

Like I 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 doctor appointments where she was sent away. When she was eventually diagnosed with F.A.P, the polyps hadn't yet turned cancerous but she had to get surgery to remove her colon to prevent colon cancer developing. After that I came along (😇) 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 since my father hasn’t been part of my life, 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 doctors 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 and I truly suffer from trypanophobia (extreme fear of needles). After putting off going to the doctors again and again, in a heated conversation I had with her, I said something along the lines of her already knowing as I felt she was pressuring me more and more into going. And right enough she already knew I had it. That I have 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. Though sometimes 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 not feel so…faulty.  I would feel like my life is about to change majorly. 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, especially as you watch your mum go in and out of hostile and have to receive numerous surgeries for the same condition. 

Fast forward a couple of 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 at the inside of the colon) for the 8th August 2013 - 20 days before my 16th. 

I don’t really want to talk about the procedure itself as it still brings on emotional distress and I prefer to avoid things that remind me of it… including talking about it, but I may cover it in a later post.

I can’t remember a lot of what I was told result wise after 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 they were abnormal or even cancerous. I was also told I would have to come back every year for a colonoscopy to keep an eye on things. 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 (this was something I struggled A LOT with the year before), but the prep. I can’t express how awful I found it. Mentally, emotionally and physically - again I might go into it at another stage.

I never heard back after that colonoscopy so presumed there was nothing to worry about and the next year (2015) I wasn't sent an appointment for another - yearly - colonoscopy. THANK GOD because I swore 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! I even recall straight up saying then I rather just get the surgery because it was going to have get done at some point anyways.

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 because it was just so out of the blue, but this time no needles were involved and it only took two minutes. Literally. Afterwards I felt silly getting so emotional over it and actually laughed it off in the end. 

The laughs were short lived however as soon as I sat back down I was faced with the news which I was not expecting to hear for at least another year or two, but was oddly prepared for….



UPDATE: Part Two is now up! Go and check it out here




(This post was originally written in March)
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