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Feeling Ostomistic
Monday, April 08 2013

Today should be day 1 of post op but there was a change at the last minute as the hospital realised they weren't equipped for the adequate after surgical and ICU care I required. Was such an emotional time and it all became real as they were wheeling me off to theatre.

Lots of tears were cried by not only me but my family and my husband and it broke my heart. I was upset because I was so scared and relieved at the same time that finally things will be better. I was more scared about afterwards I didn't know what to expect.

So off to theatre I went and they were about to put me under when the aneathesist said she couldnt do it knowing the lack of appropriate ICU care. 

So I am still having the surgery (wishing still that I weren't) but just on the waiting list for the public hospital now so should have a date in approx 4-6 weeks.

It will all be over soon!!

However I will be sharing some amazing items that I have purchased for my surgery and recovery period with you over the coming weeks. As a massive supporter of handmade I am so excited for the amazing items coming my way. Which can all be customised to suit you too!!

Until next time 
Talya xo


Posted by: Talya AT 05:49 pm   |  Permalink   |  0 Comments  |  Email
Wednesday, April 03 2013

When you hear the word support, what instantly springs to mind? Most people will relate support to that of family or friends. But it doesn't just have to be your family and friends and I am not talking about telling the whole world about what is going on the feel supported. But it is important you understand and know what support is available to you.

For me personally, I am learning more and more about what support I have and realising I am in fact not alone. I am very stoic and was raised to never ask for help and to never rely on others. To me this how I always understood what support was and from an understanding that it mostly involved money.

In fact support is anything object or assistance that can help better your current situation. Could be through family and friends, online friendships, support from communities or networks you are involved in, access or help from counsellors or psycologists, support from different health professionals and so on.

For me I am quite blessed to have an amazing support network around me. I have my family who are coming to visit and support me and my husband the day of the surgery and visit during and after my hospital stay. I have some beautiful friends who are planning on visiting me at hospital to keep me company while Russ is busy working. Diferent health professionals are also very supportive to seek advice from this could be the stoma nurse, your GP, your surgeon, dieticians, counsellors and the list goes on.

Being apart of the Australian handmade community is amazing- most of my closest friendships have been formed from networking, collaborations and from supporting each other. I find handmaidens are truly lovely and the best friends to have. I am so greatful for their support and friendships. Where would I be without you guys?!!

It is normal to feel anxious or scared but it is important to know what support you have should you need to.

But remember, You will always have support here! x

Posted by: Talya AT 05:51 pm   |  Permalink   |  0 Comments  |  Email
Tuesday, April 02 2013

You might be wondering what an ostomy is, and I will try my best to describe from my knowledge and research. Often you will hear or read ostomy and stoma that are used but have very different meanings. Most commonly you would have heard before 'colostomy'. Until my surgery I assumed an ileostomy was a colestomy. So I found it great to know the difference.

An ostomy refers to the surgically created opening in the body for the body's natural waste to be eliminated.

stoma refers to the actual end of the small bowel or large bowel or ureter that can be seen protruding through the abdominal wall.

I live with a permanent ileostomy. This means the end of my small bowel (ileum) is brought to the surface of my abdomen to form a stoma, I had all of my colon removed.

There are also other ostomies that you could have relevent to your circumstance and case. Such as a:

  • Colestomy which refers to a surgically created opening (stoma) of the large bowel/large intestine/colon. A colestomy is created when a portion of the colon or rectum is moved and the remaining colon is brought to the abdominal wall. 
  • Urostomy a surgical proceedure that diverts urine away from the defective or diseased bladder.

I hope that this helps you to understand the difference between a ostomy and stoma and the different preceedures requiring the use of an ostomy and a stoma.

Posted by: Talya Goding AT 09:53 am   |  Permalink   |  0 Comments  |  Email
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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Talya Goding - Feeling Ostomistic  |  0447 426 860

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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