Wednesday, July 29, 2009

Button troubles

I am still having button troubles. I now have the AMT Mini one balloon button and even though I like it a lot better than the Mic-Key I am still having problems with it.

The button/balloon is being pulled inside through my stomach contractions frequently and that makes me feel very desperate - for some reason too much pulling leads to nausea.

I have the 3.5 cm button right now and it does feel right, but I can still pull it out quite a bit in order to get the balloon to be really snug to the stoma - I have no idea if a size down would feel better - if that would help with the pulling of the button as well - I am just so sick and tired of feeling ill when I do get hungry. When the pulling in of the button starts I have about 10 minutes before I get nauseated - I don't always have time to eat right there and then - just because my stomach starts hurting with all those pulling sensations.

My gastroenterologist has never had a patient with a button before even though he has lots of g-tube patients. Neither has my dietician. I asked my gastro-doc last week if a non-balloon button would be better for me - if my stomach peristaltic would have less effect on a non-balloon button and therefore would feel better. He hadn't even heard about a non-balloon button before. I gave him all the information I had printed out from the AMT website but he didn't know if that would work better for me.

Lisa - from AMT - you once commented on one of my button trouble posts - do you have any insight on this?
I guess my specific questions are:
- is lots of pulling in still a sign of a too-long button
- would a non-balloon button work better for me
- is the internal bolster of a non-balloon button smaller than the balloon and therefore less likely to be pulled through my stomach peristaltic?
- is there a time-frame before a non-balloon button can be placed (my gastro-doc was worried that the smaller internal bolster would mean that more forces are exerted onto the stoma walls if I accidently pull on it (from the outside)?

If anyone has any answers - please comment or mail me at - am a bit desperate.

Tuesday, July 28, 2009

Altitude euphoria

M and I decided to extend our vacation and took off for my parents' house in Linz on Saturday.

Sunday at lunch we talked about what we wanted to do in the evening. My parents already had tickets for the theather and therefore M and I had an evening to ourselves.

Linz is the European Culture Capital of 2009 and lots of special exhibits and artsy stuff are displayed all over the city. There is one exhibit that is especially intriguing - "Altitude euphoria - art above the roofs of Linz". The title is to be seen literally - because this exhibit takes place on the roof (and beyond) of a 14-story-down-town parkade.

The thing is - I am not that afraid of heights - but I get very, very dizzy!!! But I braved it and followed M up the wooden stairs....

The really cool thing though is the ferris wheel on top of the parkade.

It is up on the 14th floor and it goes really fast (rounds twice in one minute) - needless to say M got to go by himself!

I loved the moon that night...

Friday, July 24, 2009

A vacation well deserved

M and I had the best vacation ever! The sun was shining every day, the sea was refreshing, but not too cold and don't let me get started on the wonderful sandy beach!
I love Italy!

Our main activity was sleeping - M had worked so much over the past few months - me too plus all that emotional stress - we really were exhausted! But is there any better place than sleeping on your sunbed on the beach - listening to the waves and the children playing happily around you.

Buttonwise I had quite a bit of troubles - but I will post about that separately. In the end I didn't let it get me down and enjoyed my time with M.

There are so many couples that start fighting during vacation - it is the other way round for us. We fight the most in the weeks leading up to our vacation because we both have so much work left to do, but once we are on vacation and we start to relax the love between us just explodes and we have a really peaceful vacation!

Six swans always swam fearlessly and determined through all the bathing people. At night the slept at the beach.

Tube Girl walking on the beach - enjoying the sand between her toes....

Tuesday, July 14, 2009

Tube Girl doesn't travel light!

M and I are all packed and ready to go - tomorrow morning we will leave for our vacation in Italy.

I have a small car - actually a very small car. It is a VW Lupo and let me tell you - Tube Girl doesn't travel light! With all my tube feeding and tube care stuff it does add up a bit. Thank god M already has extensive experience in packing up my very small car - but even he felt a bit overwhelmed at the amount of suitcases and traveling bags that I piled up for him to take down to the car.

In our very small car - he packed:
  • two sun beds
  • one small sun shade
  • two small suitcases
  • three travelling bags
  • one tube feeding back-pack
  • one paper bag with towels
  • one dust buster (you might laugh at that - but we will be staying in a trailer and last year I just could not get rid of all the sand we kept bringing into the trailer with just a broom)
  • a bag full of shoes (I have to be able to choose even when on vacation, right?)
  • my nordic walking poles
  • six small torches
  • one camping barbecue
And yes - there is still some space left for us as well!

Monday, July 13, 2009

Look at those cute creatures!

M and I spent the weekend at my parents' (Mum and stepdad) house. Mum has a little garden and she loves to tend to it. Yesterday I sat beside her on the patio and kept her company while she was doing a bit of weeding.

While she was weeding she came across an empty flower pot filled with quite a bit of water from all the rain we had. She called me over telling me to come have a look at the cute creatures that were swimming in the water in the flower pot. I had a look as well and Mum and I just couldn't get over how funny their movements in the water seemed to be and were quite in awe of God's little creatures.

Mum then called my stepfather out in the garden - asking him if he knew what kind of creatures they were - and at the same time telling him that he most likely wouldn't know either. My stepfather has an incredible general knowledge and he just needed one look at the flower pot and said to us: "I know exactly what they are - they are mosquito larvae!"

Mum and I screamed out in horror - there we were - admiring hundreds of potential blood-sucking mosquitoes! Still Mum didn't want to be the one emptying out the flower pot and being responsible for the death of hundreds of potentials mosquitoes and my stepdad had to do the dirty deed!

Thursday, July 9, 2009

I am not ordinary - and neither are my cats

I have three cats. My senior feline lady Laura is already 17 years old and almost deaf. Her main activitiy is sleeping (and puking - she is my "puke cat").

Then there is Aimee, who just turned three this spring. She is our little princess - both M and I really spoiled her when she was a kitten and she now has quite the attitude.

Our youngest cat is Aaliyah and she just turned one and is still quite the handful, but very lovable and cuddly nevertheless.

We realized very soon that Aimee had some strange sleeping habits:

Like this...

And this...

Or this...

And she still sleeps like this...

Aimee and Aaliyah are from the same farm and are widely related. Aaliyah loved Aimee from the moment she set eyes on her and learned a lot of behaviors from her (good ones and not so good ones).

And from being a kitten on Aaliyah also slept like this...

And this...

And now at one year old she still sleeps like this...

Is this simply in their genes or is Aimee the truly weird sleep position cat and Aaliyah is just the copy-cat?

Wednesday, July 8, 2009

Finding the right place to get married - or not?

M and I want to get married next summer and have started to look at possible locations. A friend of mine told me about a palais about an hour drive away from Vienna in Nether Austria in which a friend of hers got married last year. I had a look at the website and thought it looked quite nice.

Last Sunday M and I decided to finally drive up there and have a look. I put the address in our navigation device and I guess I should have used a few more brain cells when it said it would take us 1 hour and 20 minutes for only 70 kilometers. And maybe I should have looked it up on an actual map because then I might have realized that this palais was in the middle of nowhere really close to the Czech border.

What we hadn't known either was that a highway going up there was just being built and so parts of the main road up there was temporarily relocated with lots of tempo limits and no overtaking allowed. It took us forever to drive to the village and we were both getting grumpier and grumpier. If either of us hat said out loud what we were both thinking - that we didn't want to get married in such a remote location, we might have turned around earlier, but I kept on driving. It took us forever to find the actual palais, there were no signs at all leading the way there - it obviously is a private palais that you can book for weddings. Once there it had started raining, I was hungry and grumpy and refused to get out of the car (we had planned for a picnic and I was not dressed for rainy weather at all). M did get out and took some photos - but I had already made my mind up that I don't want to get married there.

On our way there we had seen a sign saying that the "Falkenstein" castle (or at least the remains of it) was really close by and I suggested to M to drive there so that after a driving for over one and a half hours we would at least get to see something. It was only 8 minutes away from where we had parked to eat our lunch. We were really surprised to see lots of parked cars at the foot of the castle - mostly very "alternative" looking cars and when we started walking up to the castle we saw even more very "alternative" and hippie-like looking men and women. We were not surprised to smell the distinct scent of marijuana and realized that some alternative music festival was taking part at the castle. It started raining again and we suddenly felt really tired and in no mood whatsoever to try to make our way through all those people up to the castle and turned around to go back to the car.

I asked M to drive back home because I was starting to feel really tired - we had not been driving for more than five minutes when a police man signaled us to stop our car. They asked for M's license and our car papers and then proceeded to ask about his alcohol intake. Obviously M had not been drinking, even though we have 0.8 % alcohol limit in Austria M never drinks and drives. He denied any alcohol intake but was asked to use the alcometer anyway. I guess they wanted to "catch" lots of intoxicated drivers leaving the music festival.

The way back home was even more tedious than going there. Lots of slow cars in front of us, no overtaking and far too many tempo limits again. I already started falling asleep in the car and once back home slept another three hours even - I had no idea that looking at wedding locations could be so exhausting.

Tuesday, July 7, 2009

Letting go of my anger and frustration

All this frustration and anger at the mic-key button situation really drained me of some much needed energy.
But I am trying to let go of all those negative feelings and just trust that everything will work out for the best.

And yes, I feel a lot more peaceful now. I have changed back to the smaller mic-key button (did it myself and it was no big deal at all), I have heard from some people on the internet that they have the same popping sensations when they get hungry and it is something one gets used to and it actually feels a lot better already with the smaller button.

I ordered a new button type today - it is an AMT Mini ONE button and it is very similar to the Mic-Key button but a bit flatter and more flexible. I don't know if that was a wise decision because I am just getting used to the Mic-Key, but on the other hand maybe it will fit my stoma site better due the softer and more flexible external bolster (my stoma is quite low - just above my belly button and so my button always gets pulled in a bit when I am not sitting very straight - maybe my button tube might actually teach me to sit straighter?).

I am still very unsure about my stoma site and the slightest bit of drainage causes me to worry. It will probably take another few weeks before I feel comfortable with it and know what's normal and what's not.

Other than that - only one more week until M and I leave for our vacation in Italy. I went to buy a bikini today - I have decided not to care at all and still wear a bikini even with my button.
I have realized again today that one should not wait to buy a bikini until July - I had a really hard time finding one in the right size because H&M was so sold out already. But I did find one and it doesn't even look too bad!

Monday, July 6, 2009

The neverending button story - part II

Will it ever end? I had the 4.0 cm button put in on Friday and things have not gone too well over the weekend. It leaks a lot (tube feedings and stomach acid) and that makes my skin really itchy plus I don't really enjoy the (pukey) smell it leaves on my skin around my stoma.

What's even worse is the constant pulling of the button from inside my stomach. Quite often when I get hungry or have just eaten my stomach contractions will pull the button inside and then suddenly it gets released again and plops back against the stomach wall and that drives me nuts. For the last two mornings I have also woken up with a sudden bout of excessive salivation - as if I was about the throw up and lots of pulling on my button from the inside - I then have to eat something immediately because all the pulling makes me feel really sick. I take thyroid medication in the morning and I am supposed to wait half an hour before eating but I couldn't do that the past two days.

I have never felt like this with my g-tube (non-ballon type). I really want the balloon thing to work out because I like the low-profile thing - but at the moment I find it quite uncomfortable. And that makes me sad and angry and desperate all at the same time.

I have e-mailed my gi doc and my dietician - I especially want to know what button length I am supposed to use according to his measurements. I mean he put in the 2.5 cm button because that's all he had, but he did measure my stoma with the stoma measuring device, so really he should know, right?

I would so love to find out from someone else how the button feels for them - specifically if they experience the popping button feeling as well? If anyone reading this blog has any insights on that - please comment!!!

Saturday, July 4, 2009

The neverending button story

Thursday morning before leaving the hospital I approached Prof. H about the very tight button situation and he explained that it was a tight fit from the beginning and he would have probably used a larger one, if he had had one available. He had a look at my stoma site once again and decided that I should actually go up 1 cm and get 3.5 cm button in.

My dietician than made the impossible and possible and found a Mic-Key button that size in the depths of the General hospital she works at. Manu and I drove home from Graz and in the afternoon I went to see my dietician to get the button changed. I actually did the button change myself. It was a weird feeling but only hurt a little when putting the new one in – but nothing compared to having an ng tube stuck down your nose and throat. Even though that button fit a lot better, as the day went on it got tighter and tighter – I guess I usually swell up during the day.

I got really frustrated again and desperate, therefore I e-mailed Prof H and my dietician this morning and they both suggested going up even more size and put in a 4 cm button. I felt so bad for my dietician because it was the second time in two days that she had to go on a button hunt for me. Luckily the button we put in yesterday was already past its use by date because there is no way that my insurance would pay for three buttons in three days. And I guess they can’t really charge my insurance for a button past its due date.

So off I went again this afternoon to the hospital to get my button changed once again. At least my dietician and I really know how to do it now! The 4 cm button does feel a lot better, but is on the larger side - but better too large than too tight!

The mic-key button system itself is really cool and I enjoy being able to sleep on my tummy again. There are two other button systems that are supposed to be even flatter and I am going to look into getting one of those here in Austria.

Wednesday, July 1, 2009

All buttoned up now

The mic-key button is in. I have not been allowed to use it yet. Even though Prof. H told me before he put me under that I could eat and use the button right away since the stoma tract is already healed, the nurse told me afterwards that I was instructed not to use it until tomorrow morning. I did get something to eat however and received a liter of iv glucose.

I am in a bit of a dilemma though. I brought mic-key buttons in four different sizes with me (the hospital doesn't have them in stock) ranging from 1.5 cm to 2.5 cm in stoma lenght. I know my Doc used the stoma measuring device and I woke up with a 2.5 cm button in place. Still I feel that it sits very tight. The button makes a real dent into my belly. I wonder if he would have used a 3 cm button if he had one that size? I just don't want to run around with a button too tight for me. Plus I was NPO for the endoscopy and once I start eating my belly gets a lot bigger and now after dinner the button sits even tighter. I am really frustrated! I know I want to ask Prof H about it tomorrow but at the same time I don't want to question his expertise. I have tried to find pics on the internet from kids with mic-key buttons and it does appear that mine sits quite tightly.

Waiting in Graz

I am in Graz, waiting for the admissions doc to show up. I have a beautiful room again, two beds - but only me, balcony and lovely view of Graz. Have already had a finger stick done and have decided that I prefer regular blood draws over the finger stick and the necessary finger squeazing to get required amount of blood. M is with me and working as always - but nice to have him with me - I am looking forward to having someone around when waking up from anesthesia. He will have something to laugh for sure - I am known to talk nonsense following anesthesia.