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Feeling Ostomistic
Tuesday, February 23 2016

I know having a loved one in hospital or unwell can be rather distressing, and I know more than anything just how much you want to help them get better.

I myself, have spent a lot of time in hospital and after a recent surgery with a hospital stay I thought that I might give you some ideas or suggestions on how you can support a loved one while they're in hospital. I guess these could even apply to when a loved one is at home chronically ill or unwell.

When a loved one is sick, you don't have to buy flowers to show them you support them. Here are some ideas to help you next time:

Suggestion #1. Calling them
I know that you're concerned for them and want to call them daily or every other day for updates but as much as I know you care and want to support me this actually is something that I find frustrating.

You see you might call me once a day, but so are a lot of other people all asking the same questions so I feel like I am constantly repeating myself and all the phone calls can become rather exhausting after a while, or you might just be having an 'off' day and just want to be left alone.

Also keeping in mind that when someone is in a hospital room sharing with 4 other people it can be hard to have an actual conversation without feeling like everyone in the room is listening... there just isn't privacy when you're in hospital and this makes me uncomfortable so I prefer to text or facebook message.

Solutions:
#1. Nominate one family member to call and relay the message back to those who are asking. Or if too many are upset they're not getting a turn to speak to the person in hospital create some sort of roster and take in turns of calling and relaying the message to others.
#2. Send a text message before calling and ask if now is an ok time to talk, as they might be asleep or might not be up for a chat. If they don't answer straight away then they aren't available, but they can reply when they are.
#3. Send texts instead of calling as it can be easier to reply to when they're up to it or as I mentioned above I prefer text is just more private than having a conversation in such a public room.

Suggestion #2. Flowers
I know when you're visiting or thinking of a loved one your first instinct is to buy them flowers. But flowers while they are beautiful and can make someone feel loved and smile, they also are rather expensive and will die.

Instead of buying flowers think of practical things they might need and either are unable to go buy it themselves while they are in hospital or they mightn't have the funds to purchase (especially as money can be tight when in hospital and if they have to take time off work to be there).

Solutions:
#1. If they have a laptop and are using a prepaid wireless dongle, purchase some credit or recharge for them to use
#2. If they have an iPad and enjoy reading books purchase an iTunes gift card so they can get some new books to read
#3. Make up a little care package with some comfy slippers and essential toiletries if they were in a rush and didn't get to pack these even include an eye mask and ear plugs to help them sleep a bit better
#4. If you know that they've been colouring in to keep them occupied you could buy a nice set of pencils or colouring in book in case they have used up all their book or pencils
#5. If you drive past their house and notice their lawns are looking a little neglected offer to give it a mow, or keep an eye on their pets it can be a stress they don't need to worry about

Suggestion #3. Food
Unless you're in a nice private hospital, the food in most public hospitals I have been in can at times be rather inedible leaving you rather hungry and annoyed.

I spent so much money this last admission on food as I found myself having to resort to the hospital's expensive cafe in order to get something that was half decent to eat. But sometimes you don't have the option to walk to the cafe to get food.

Solutions:
#1. Offer to bring in a nice home cooked meal for them to enjoy
#2. If there is a cafe but they're unable to walk there themselves offer to go get them something enjoyable
#3. Pick up or arrange delivery of some yummy take away and sit somewhere in the hospital and have a meal and chat

Suggestion #4. Make them feel at home/comfortable
When I am in hospital for long periods of time I quickly become homesick especially when home is so far away. For me I have some things with me that makes me feel comfortable and a bit at home which are some cushions/cuddle pillows (I can't sleep without cuddling up to these cushions) and also have my Redkite blanket with me.

These are some things that I find brings me comfort but others might find comfort in having a photo on their bedside of their family.

Solutions:
A reader suggested after reading this post, that if they have pets it can help with their recovery and feeling more at home if you brought their pets in for a visit. There might be a garden or somewhere close by that you can sit at, and if you can't walk far you might be able to be wheeled out in a wheelchair. She went on to say a visit from her fur babies really helped her in her recovery.

Suggestion #5. Respect their privacy
When you're in hospital you can feel vulnerable and often feel like you have lost dignity. But when you are visiting a loved one it is important to be mindful and respectful of how they might be feeling and to not make them feel worse.

Don't take a photo of them without their consent, and especially don't go posting that photo on social media.

Another thing you shouldn't do is share things they have told you in private or that the doctors may have said without their permission, this goes for social media. I know that your first instinct is that you want to update people on their condition but don't give out the specific and private details of the ordeal, not everyone needs to know the specifics. And if they share an image with you, don't text/send that image out to your contacts. It can be rather upsetting when they find out to know that things about their life/recovery have been shared without their permission.

Suggestion #6. Offer to do their laundry
If you are really wanting to offer support and help while they are in hospital, offering to wash their dirty clothes can be a huge help. But you need to be prepared that some of those articles of clothing might be dirty or soiled. It might be embarrassing for the patient to accept you washing their clothes especially their delicates, and it is important that you make them feel comfortable and not embarrassed about the state of their clothes, as they might be a little anxious about handing over their PJ pants that became soiled after a bag leak.

If you do end up washing their clothes, and if their clothes are rather dirty and soiled or stained, it is not your place to tell others in a gossip sort of way as it would be humiliating and tarnish any chances of the person asking/accepting help again.

While these are just a few suggestions I know the list could be longer. So if you have a suggestion that you think would help others comment below and let me know. I would love to hear your ideas of what makes you feel more supported when in hospital.

Posted by: Talya AT 05:57 pm   |  Permalink   |  0 Comments  |  Email
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
Thursday, February 04 2016

NB: Some images of my stoma and ulcer might be confronting, proceed with caution view at your own risk

For the past month I have been dealing with a new challenge in relation to my stoma.... not that changing my stoma bag isn't enough of a challenge but I have had to deal with an ulcer that had formed mere centimetres from my stoma and required a lot of attention.

I was in hospital early January (the day after New Years) with an infected portacath, and I did a bag change before I went off to surgery and there was this giant ulcer which just more or less appeared near my stoma.

Boy was it sore!

It was fairly deep and over the first week or two was painful to touch but thankfully 5 weeks later, the ulcer has almost fully healed.

But it was certainly confronting and I learnt some new techniques and products (which have become a lifesaver).

I also owe a lot of thanks to my stoma nurse, without her advice and knowledge I would not have known what to do, and luckily she has had plenty of experiences with ulcers near stomas and knew what to do.

I don't want you to feel alarmed or worried that you too will get an ulcer, mine just happened to be caused from a necrotic tumour that is dying and causing an infection under my skin, and that infection was trying to break out to the surface and the pressure formed an ulcer. I hope you aren't unlucky and don't endure this, but hopefully I can share my experience and tips that might help you too.

Some of the products I recently learnt how to use and some application tips:

#1 - Prontosan
This was introduced by my stoma nurse and she gave me a bottle of prontosan to use for when she came to my house for a home visit and stoma bag and wound care change. It is a solution that is great for wound irrigation and has an anti-bacterial property that helps your wounds to heal. It doesn't sting either.

Application: We soaked some cloth in the solution and then placed the saturated cloth over the wound for around 5 minutes, letting it soak in

#2 - Kaltostat
This is a wound dressing that is known for helping to inhibit heamostasis (the body's process to stop bleeding).

Application: A small piece was cut to the size of the ulcer, initially there were two pieces layered on top of one another then as the wound began healing only one piece/layer of dressing was required.

#3 - Coloplast stoma paste
I haven't used stoma paste before, but as we really needed to ensure there was protection of the wound from my stoma output the paste was used to form an added barrier.

Application: Squeeze out some of the paste over the dressing so that it is a line going over it. Using a cotton bud that has been wet, spread the paste out so that it covers the Kaltostat and has formed an extra barrier. It is best to wet the cotton bud to prevent the paste sticking to it and helps the spread of the paste easier.

#4 - Eakin Cohesive seals
I hadn't used these seals until recently, and I love that the seals are big and round and provide a lot of added protection to your stoma and the skin around your stoma.

Application: With these seals you can stretch out the inner circle (looks like a donut) to the size of your stoma. You simply place it over your stoma and press down so that it adheres to your skin. I found this helped to provide an added barrier between my stoma and my wound. You can also cut a line and then wrap the cohesive seal around your stoma and cut a piece from a new cohesive seal if you don't want to stretch it out and want it to be more sturdier.

-----> Now I applied my stoma bag and secured it with the elastic tape seals and now I was ready to face the world

If you're in Australia, these products (minus the prontosan and kaltostat) can be ordered through your ostomy association if you need some assistance be sure to ask your stoma nurse.

I highly suggest if you do get an ulcer or experience skin breakdown near your stoma that you seek the help and advice from your nurse or doctors. My blog is merely a sharing of my experience and tips and I am not a healthcare professional.

Images:

    
Left: stoma and ulcer first day it was discovered approx 2cm. Right: Two days after it was discovered approx 3cm

 
Left: week 4 slowly healing over. Right: it is almost all healed (week 5)

Posted by: Talya AT 11:17 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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