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Feeling Ostomistic
Saturday, February 20 2016

For those who have been following my facebook page would know of my struggle the past several months involving a rather aggressive and fast growing Desmoid tumour that was causing me issues and making me sick.

I haven't blogged much about my tumour and experience, just been mirco blogging on my facebook page. But today, I am wanting to write about my most recent experience which involved having the tumour removed and having  a new stoma created.

According to the Desmoid Tumour Research Foundation a definition of a Desmoid Tumour is that these "... are tumors that arise from cells called fibroblasts. Fibroblasts are found throughout our body and their main function is to provide structural support and protection to the vital organs such as lung, liver, blood vessels, heart, kidneys, skin, intestines etc. and they also play a critical role in wound healing. When fibroblast cells undergo mutations they can become cancerous and become desmoid tumors (also known as "aggressive fibromatosis")..."

These tumours can be slow growing or extremely aggressive (which mine are) and can become life threatening when they locally invade or restrict on structures, organs or blood vessels.

I had two tumours (now I have one) both in my mesentery and one is also deep in my abdomen compressing on my kidney and also presses on my stomach and back often causing me pain when I walk short periods or am standing for a few minutes. Hell, even having a shower can quickly become rather painful and tiring! For those at home wondering how big this beast is, it is the size of a watermelon... but this one won't be surgically removed (too risky) and is the one that I have been told will eventually kill me over the next few years and the aim of the chemo is to try and shrink it or stop it from growing before it causes too much damage.

The tumour that was removed last week was the size of a rockmelon (see image below of side on view of my stomach) and has since left me with not only a huge cave-in of my stomach but a new stoma which I am trying to adapt to but it is proving to be a challenge.

Surgeons are usually reluctant to remove these tumours due to their aggressive recurrence and because the more surgery you have the more chances for more tumours to appear, especially when you have a genetic pre-disposition to these tumours caused by FAP.

But, the reason my tumour was removed was because it was dying inside (turning necrotic) and was causing infections, ulcers and fevers and it was decided that it was best to remove the tumour now in hopes of preventing further issues and to make me better enough to FINALLY resume chemo to work on the other beast.

So I have been in hospital since New Years Day back home in Coffs Harbour with the exception of a week where I got to go home, but then I was readmitted there for 10 days while I waited for a transfer to Sydney to have surgery. So I got to Sydney via air ambulance on Tuesday the 9th of Feb and had my surgery on the 15th of Feb.


Me the day after surgery with my trusty Redkite blanket

The surgery went well and I was up walking the next day and had impressed the doctors so much (and myself for that matter) with how well I was doing that they were ready to send me home last Thursday. But my swelling went down on my stomach, and my stoma changed too and my bags no longer were sticking and getting a good seal so it kept leaking.... and leaking... and bloody leaking!

In a 24 hour period from Thursday to Friday I had experienced about 8-10 bag changes, I lost count, and my poor skin was so raw and sore it was quite uncomfortable. Then Friday to Saturday I had almost 24 hours without a leak, then the last 24 hours have experienced about 6 bag leaks and my skin is so sore I just want to cry!

It is so hard adapting to this new stoma, especially when it is so different comparitatively in size. My old stoma I miss so much as it worked and very rarely leaked, where as this one is so small and it is now sitting in a crease in my stomach where I never had a crease before the surgery, but worst of all it has become retracted and is under my skin.

As I said, I am REALLY missing my old stoma and struggling to like or adapt or feel confident with this new one. I know I needed my tumour removed and I know long term it should prove beneficial, but I am struggling to see the ostomisticness right now... which I feel like such a fraud as my blog is called 'optimism with a stoma'... 

I know I have gone through this before, it was 8 weeks of constant leaks before I found the bags that worked for me and then I fell in love with my stoma and the new life and freedom it gave me... but I miss that freedom and confidence and just hope I can perservere and one day will fall in love with this new stoma too.

It was almost three years that I had my first stoma, it had become such a huge part of me and who I am and I know this will sound strange but I do feel a little bit of grief and loss over my stoma. I am not only grieving for my stoma but my independence, dignity, confidence and freedom.

If my tumour hadn't attached itself to my small bowel and stoma I wouldn't have lost such a HUGE chunk of small bowel, and they would have had more bowel to work with to create this new stoma rather than opening me up to dig more bowel out and opening me up for more risks of tumours and complications.

I know it is a process of trial and error, I just have to get through this next bit to fully accept my new stoma.

Posted by: Talya AT 08:41 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   talya@feelingostomistic.com.au  |  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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