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 a form of music to my ears. 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 likely be too late.

Though I know it’s the right time, no 18 year old should be faced with this. As it takes only one of polyp to turn cancerous before it would be too late, surgery is the only answer to stop it.

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. Luckily for me however, 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. 

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 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 as far as these rare fibrous tumours are concerned as desmoid tumours have the tendency for recurrence even after removal, so it makes further treatment of these relatively rare fibrous tumours challenging. I am lucky in that 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 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. 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. Though I will be in the hospital for about a week and with a recovery time of 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, what it will be like to be stuck in a bed, 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 university, I will feel better within myself and not have the thought of needing a surgery hanging over 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 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). Now I know, 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 (😇) 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 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 (for many reasons) and I truly suffer from trypanophobia (extreme fear of needles). After putting off going to the Dr’s again and again, in a heated coversation 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. 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. 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 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 they were abnormal or 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, 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 still makes me gag just thinking about it. This time I threw up and even cry numerous times throughout the day because I felt I wasn't able to do it. My body was having none of it. My mum suggested mixing it with diluting juice to make it taste better. Wrong move. Long story short, tropical flavoured diluting juice (or similar flavours) will make me throw up to this very day just with the smell, and even food or candy with similar tastes. 

On the day of the procedure, again I got in a state (especially when I was wheeled into the room where I was having the colonoscopy) so much so the nurse told me I would be given gas and air the next time to help with my anxiety. But as far as the procedure goes, it was very uncomfortable, and even painful when the endoscope scrapped around the inside as it turned the corners. However, it only lasts about 20 minutes unlike prep day which is a whole 24 hours. The best part though is once your out, you get back to the car and there is a selection of really yummy food waiting for you - or at least I always made sure I took food with me as I didn't want to wait till i got home (just FYI to anyone who's going for a colonoscopy, afterwards avoid fizzy drinks as during the procedure your colon is basically blown up like a balloon with air so they can see it all clearer and for whatever other reasons so it will take a little while just for it to leave your body, so carbonated drinks will only add to it and make it uncomfortable).

I never heard back after that colonoscopy and the next year (2015) I wasn't sent an appointment. 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 saying then I rather just get the surgery straight up instead because I was going to have to go through it 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)

HELLO


My name is Kathleen and you might know me from my lifestyle blog, KA5THLEEN. If not, then hi! It's nice to meet you!  

I have decided to start out another blog but the reason behind that is, instead of being your usual lifestyle blog it will be focusing on the hidden side of my life that I haven't shared with anyone other that my family before. 

The past couple of years I have been going through a lot but haven't shared it with anyone publicly. However, I feel that instead of feeling ashamed or faulty because of these...'issues', I would talk about them. I would like to talk about my journey and the adventures that I face in the hopes that I'll be able to help someone out there with my story, even if it's just one person.

Here's to Living a life with... 


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