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Feeling Ostomistic
Monday, April 01 2013

I would like to get down and personal with you for this post as I want to share my journey so far and why it has led me to needing this proceedure.

So you all know my name is Talya and I am 22. I grew up in a small country town and area in rural NSW of Australia called Kempsey. You may know Kempsey to be many things (and some bad) but for me it is mostly good such as the new bypass (The longest bridge in the southern hemisphere). The biggest perk for me would be lots of family and friends are still there, so to me Kempsey will always be known as 'home'. (So if I refer to 'going home' I mean going to visit my family). I now reside in Coffs Harbour (which is not always so sunny) but it is where I met my husband Russell and have started to build a life for myself here.

I come from a pretty large family being the oldest of 10 children, but also have a lot of friends who are pretty close and dear to me that are known as family. Without some of these people in my life I don't know if I would be the person I have become today.

When I was 7 (1997) my family welcomed two beautiful twins Bailey (now 16) and Bridget. After they were a few months old Bridget became very ill and was rushed to Sydney Childrens Hospital in Randwick. Here she was diagnosed with a rare and aggressive cancer and was rushed straight away into surgery to operate on her tumours. The doctors gave the worst news saying she would only survive 3 more days. She was a trooper and went on to battle this disease until it beat her a week before her first birthday. It shattered my family and no one was the same since.

Years went by and I grew older and so came the various medical problems. To date I have had brain surgery (and was on a TV show called RPA), been diagnosed with FAP, irritable bowel, have had endometriosis surgery, been placed in a medically induced menopause. In a week I will be having a large bowl/colon/rectum removed with a permanent ileostomy.

Little did I know that all my problems over the years have been all caused by the FAP (inherited bowel cancer) and the production and growth of polyps.

I was 19 and had been married 1 week when we learnt that my dad was diagnosed with terminal colorectal cancer at the age of 39 and passed at the age of 41. We also learnt that the specific type of cancer was caused by FAP (1% of total colorectal cancers) and it is extremely rare but the affected person carries a 50% chance of passing it on. It was then suggested that out of the kids I be tested first for the condition, as I had already had signs and was starting investigations to work out what was going on. Then most of the kids were tested, when we learned it was only dad and myself who had this condition. But learning about what FAP means was a rather daunting and overwhelming experience and along with watching my dad go through treatment, it really made me scared for the future and what would happen to me. So talks of surgery were not for another 6 years well were supposed to be so I was okay with that.. it gave me time to process it all.

I went on to have 6 monthly colonoscopies with 12 monthly gastroscopies to just monitor and surveillance the polyps and growths. Each colonoscopy showed more and more growth each scope and also showed polyps appearing in other parts. Initially the polyps were only in the colon. Then they started to appear in the rectum, the duodenum, the stomach and the GI tract. As there were too many to remove they removed the larger ones to be sent off for testing and did biopsies of others.

It wasn't until last October that things started looking not normal. They removed a large polyp from my rectum and sent it away for testing. The results returned in November and learnt that the polyps had become villous and were starting to turn cancerous. Then began the talks of surgery and was told that I had approx 6 months to have the surgery before the cancer fully hit and spread. Was described as being a time sensitive issue.

I at first was told by my amazing colorectal specialist that the risk of the cancer forming in myself wouldnt be until I was at least 26-30, as they were going off my dads form of cancer. So I had at least 6 years before I had to have surgery and was told to have a family before the surgery. But when in November I found out this would be 6 years sooner I panicked. I couldn't make a decision then and there as I needed to confer with my husband. I had told him it was 'just a normal appointment no need to come along' so wish he had of as I went into shock and didnt remember any of the appointment other then saying "I need to think about this". So I needed time, I needed to think about my options (even though it was either have the surgery or get cancer) there was so much at stake.

Over the next 2 months I had so many appointments with specialists, dieticians, stoma nurse all trying to work out a game plan. I am really lucky and greatful for the health care access I can get here in Australia and have a great team of doctors who I trust. I had extensive chats with my GP about what to do as I did want to have kids and wanted to try and harvest eggs before hand. But as I was in a medically induced menopause (from the severe endometriosis) it was something that just couldn't be done.

I know it was selfish of me to try and push out the need for the surgery, but I know why I did.. I was in denial.. I mean DENIAL. I kept saying I don't need the surgery and that I don't see the point, I was just scared and it meant a lot of changes.

BUT then I wrote my list of CONS which repeatedly said "NO MORE PAIN" along with cancer free. Which brings me here today, less then 1 week out for my surgery, writing this blog for you all.

I am just so looking forward to not being in pain. Between the daily struggles with the endometriosis and the bowel issues it is hard to try and get through the day optimistic especially when you are in pain. Which is why I think ostomistic is great way to think! I am thinking of the positives and optimism this ostomy surgery will bring.

Mostly the endometrios started when I was 9 and got my first glimpse into becoming a women. Each month I was in a lot of pain, which was dismissed by numerous doctors even well into my 20's as being 'normal'. Until 6 months ago I learnt that it was indeed severe endometriosis (stage 4) and recto/endometriosis. Over the years the pain would get more and more intense to the point that I cannot exercise, work, study (when was at school/uni), enjoy being intimate with my husband, or naturally conceive a child. Every day it hurts so much and the next step would and will be a full hysterectomy and ovary removal. But the doctors are hopeful that this surgery should decrease my pain and hope it helps my pelvic area have more room as it is inflamed and irritated.

All in all I am looking forward to the benefits of the surgery. I will be able to leave the house instead of worrying about where toilet access is. I will be able to spend less time in the toilet of a day (remembering most days it is between 25-30 visits). The biggest will be NO MORE PAIN.

So here is to Feeling Ostomistic and hopeful for the future.

Talya x

Posted by: Talya AT 05:56 pm   |  Permalink   |  0 Comments  |  Email

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~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

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Thank you for stopping by Feeling Ostomistic. It has taken a lot of courage to share my story and I ask that you show me and my site/blog respect and courtesy. Views expressed in this blog are my own and I am not a nurse or a doctor. If you need medical advice please seek your medical practitioner.

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