Monday, August 31, 2009

The quest for the perfect banana

Being fructose intolerant means that I can't eat most fruit. But what makes the situation even more complicated is that I am histamine intolerant as well and lots of fruit contain biogenic amines like serotonine or dopamine - something that someone with histamine intolerance should definitely stay away from. The thing is that most fruit that are low in fructose are high in biogenic amines or are histamine liberators (another no-no).

Even though bananes are high in serotonine, they are quite low in fructose and every once in a while I let myself have a banana as a treat.

But finding the perfect banana can be quite a quest!

The perfect banana for me is not too green (because bananas on the green side are not very easy to digest) and too ripe either (because the riper a banana the more serotonine it contains).

I really wanted to have a banana with my dinner today and so I went out this afternoon to find my perfect banana - half an hour and four grocery stores later I finally found an acceptable specimen and am now eating polenta and spelt porridge with my perfect banana!

Delicious!

Sunday, August 30, 2009

Visiting Europe's biggest birds of prey breeding center

M and I went on a hike today (well, I guess you could say it was more of an uphill-walk :-).

We walked along a lovely little creek through an amazing beech tree forest.



We then visited Europe's biggest birds of prey breeding center. We got to see over 30 different kinds of birds of prey.



After a lunch break we walked back down through the forest - a different route than coming up.


Other than my allergies being really awful and me having to stop quite often to blow my nose (good excuse for a little break though :-) M and I really enjoyed ourselves. Sunshine, blue skies, but not as hot as in the past week - perfect early late summer weather to go hiking.

Thursday, August 27, 2009

Wedding plans

M and I met with our wedding planner for the first time tonight and the meeting went really well!

We booked a "Do-it-yourself-package" - meaning that we will be planning the wedding with her but organize it ourselves. Having the help and knowledge of a wedding planner really relieves a lot of stress on my side - and M's probably too.

We talked about the wedding cake too and the wedding planner actually came up with an idea for a wedding cake that I can eat too!!!

I am so excited!!!

Monday, August 24, 2009

Sense of smell

When I lived in Canada I used to love being able to smell the ocean every day. To this day smelling the ocean immediately reminds of Canada and inevitabely puts me in a good mood.

When M and I stayed at the ocean for our summer vacation in Italy this year I noticed something very odd - every time M said to me "Can you smell the ocean - it's a really strong scent today?" - I was not able to smell anything or maybe only some faint traces of ocean scent - but far away from the strong scent M was talking about.

Well, I guess it has finally happened - I have had severe pollen allergies for many years now and I guess it has affected my sense of smell now.

Sunday, August 23, 2009

Doing my accounting makes Aaliyah one happy kitty

Aaliyah loves it when I do my personal accounting. Once I have entered the bill in my excel sheet I always crunch it up and throw it on the floor.

Friday, August 21, 2009

Friday night update

It's Friday night, M is out at a bachelor party and it is far too hot in my apartment to be thinking of going to sleep anytime soon - perfect night for writing a long overdue update on what has been going on the past few weeks.

Well, I think I blogged very extensively about all my frustration regarding that darn balloon button. I finally made the decision to change it back to a peg-tube and then starting the next day everything was different. My stomach switched back into low-stomach mood and fewer stomach contractions also means fewer button pulling.

I also saw my dietician last week and she told me that stoma infections can present themselves with some pretty odd symptoms and I had it checked out. It's now been more than a week that I have been treating my stoma with medical honey (by the way - I found out today that I had some pretty nasty stuff grow on the culture and if I was immunosuppressed in any way I would have had to take strong antibiotics - thankfully I am quite healthy right now and therefore the ID-doc is content with me using the medihoney). My stoma is looking a lot better - showed it to my dietician today - she hadn't seen it since last Wednesday and she could totally see a difference (for the better :-)!!! My dietician also encouraged me to maybe look into the non-balloon button thing again, because she really doesn't want me to go back to the peg-tube. Prof H never called me about a possible appointment anyway - he actually did talk to my dietician and told her that I should just get used to the situation (that pissed me off a bit).

But - and I hardly dare to write the good news - with my stoma hurting less, I can actually tolerate the button a lot better. I am still having very bad stomach days, but I have had a few better days inbetween and I was able to tolerate the button on those days as well. I am able to sleep through the night again without getting woken up due to uncomfortable button pulling and I am able to sleep in on weekends again as well without getting nauseated due to the button.

I know that the non-balloon button might still be an option if things go downhill again. My dietician did not talk to Prof H about that, but I know she would stand up for me and does not think that I should just tough it out.

Tuesday, August 18, 2009

Medihoney

Saw my dietician last week - she had been on vacation through all my button-troubles the week before. She told me that she had already mailed Prof H asking him for a call-back regarding my situation. By Wednesday he hadn't called her back so we both assumed he was still on vacation.

I showed her my stoma site and she was not impressed at all and actually managed to have Prof. Th. (THE infectious disease doctor of the Vienna General Hospital) have a look at it (even though he just had a patient of his own ... she sure has connections). He ordered a culture and told the nurse to put honey on my stoma and to let me take the tube of medical honey home with me.

I have now been putting the honey on my stoma for a six days now and it has definitely gotten better. The red dots that started to develop 10 days ago are now gone and the stoma site is less tender already.

I found out today that my culture did grow out some stuff - but my dietician told me that Prof Th. thinks that as long as my stoma has not gotten worse over the past week the Medihoney is the right treatment.

I have read up on it on the internet and I am impressed! It really seems to be powerful stuff!

Monday, August 10, 2009

To peg-tube or not to peg-tube - that is here the question

I have had a very exhausting and emotional week. The button continued to give me so much problems and suddenly my whole life seemed to be about how to tolerate the button, always worrying about the next time a "pulling-in-episode" would start again and did I have my syringe with me - just in case I needed to take out the water of the balloon, if I couldn't stand it any longer without getting sick? Because this is what my life suddenly looked like:
  • in the early morning hours (usually around 6 AM), the pulling-in-sensation started and that would lead to relentless nausea - unless I unblocked the button with a syringe
  • during meals my button would get pulled in and stay that way making it impossible to finish my meal - unless I unblocked it
  • before meals it sometimes would get so bad that I had to unblock it in order to have the time to make myself something to eat
I started e-mailing with a very helpful AMT technician who had me experiment with different fill amounts of the button - but nothing helped.

On Wednesday I finally broke down (almost). I was visiting my pregnant friend in hospital, she was on bed-rest and I come to eat lunch with her and keeping her some company. While I was eating lunch a new patient was admitted to her room and I was asked to leave the room in order for the nursing student to be able to help the (very pregnant) woman undress. I was in the middle of eating my sandwich - therefore I just took my sandwich and left the room. As I was waiting outside my button started to be pulled in so badly and it wouldn't stop - I had left my bag with my emergency syringe in the room and therefore I had no means to make it stop. I had a really hard time stopping myself from starting to cry right there on the spot. I guess that was the last straw for me.

In the evening I emailed Prof H, who emailed back telling me that going back to the peg-tube was the only option. A peg-tube has a flat internal bumper as opposed to a balloon. It has to be placed endoscopically which means I will have to be sedated again (there is no way I want to be awake for that - he will put the tube complete with the internal bumper down my esophagus and then pull it out through the stoma :-).

Lots of tears later I decided to go with the peg-tube and give up my low-profile design.

And then it happened: Friday morning my stomach decided to switch into slow-stomach mood once again and of course with my stomach emptying slower there are less stomach contractions and that means I can tolerate the button better.
I suddenly can sleep in again without getting woken up by the darn button pulling. I have also started to use a different dressing that provides a bit of padding for the button and therefore it being pulled in hurts less on the stoma outside as well.

On the downside of course slow stomach means nausea as well - a no-win-situation actually.

Of course the events of the past few days have made me doubt my decision going back to a peg-tube once again. There is a psychological phenomenon - "post decision reactance" which basically means if you have to decide between two alternatives A and B and you decide to go with A - suddenly all you can see are the disadvantages of A and the advantages of B - the alternative you didn't go with.

Well, obviously I suffer from a very bad case of "post decision reactance" :-).

My stoma site looks quite bad, actually ever since changing to a button device it has been looking worse and worse. I now have a bleeding granuloma that obviously always gets worse when the button gets pulled in due to the pressure (even with the dressing inbetween), I have started to develop red dots that ressemble a kind of allergy - the dressing has a "foil" that is supposed to go on the wound and the red dots started to come up once I started using the new dressing - I am very sensitive to all kinds of tape therefore my suspicion is that the cause is the new dressing.

Too bad my gi-doc is not around the corner :-). Would love to sit down with him and talk everything over personally.

To top it off by the way - after a month of having no diarrhea - I am having a malabsorption day as well. Curious to know if that's related to the "slow stomach" phase.

Anyway I am off to my family physician now to show her my stoma.

Monday, August 3, 2009

A trip to Ikea equals a weekend of work

On Friday night just before we were off to bed M suddenly fantasized about getting rid of my old closet and dresser and buy a PAX-closet for our bedroom matching the PAX-closet he already has in our bedroom. Instead of going to bed there we were suddenly both fantasizing about more room for my clothes and M's clothes respectively (because a lot of my clothes kept ending up in his closet because of limited clothing space in my closet) and some space for all the things that still end up in corners not having a set space to be put away.

So off we were to IKEA on Saturday morning. M and I are well-versed IKEA shoppers, came prepared with our own pre-planned PAX combination, used all the short-cuts to get through the wast IKEA halls as quick as possible - still managed to buy stuff that we hadn't planned to buy - always happens at IKEA :-).

Getting the large furniture packages onto our shopping cart with me having hurt my back while sleeping the night before was the first challenge. Knowing that the real change was still ahead of him M had to fuel up on a hot-dog.... because .... have you ever tried putting over 200 kg worth of furniture packages in a very small, if not very tiny car - my LUPO? M and I have already packed a few IKEA trips into our car but never as much as this time. Like I have mentioned in my vacation post before M is a master in packing my car - but still - in order for the packages that mostly were over 2 m long to fit into my car he had staple them onto the dash-board. Even though we couldn't close the boot of the car M really packed everything in - except me .... I had to take the bus and subway back home :-)!

So yes, we spent this weekend assembling our new bedroom furniture - by the way - this weekend was one of the hottest weekends this summer so far - can you imagine how incredibly hot it was in our apartment?

But we finished it last evening - everything is really tide now and looks so grown-up! Our apartment keeps losing its students' flair and becoming more and more a "grown-up" apartment.

Saturday, August 1, 2009

Still button troubles

I am really desperate. The button situation is not getting any better. I have had to de-block my button on a daily basis because the pulling gets so bad at times. It makes me feel so sad and helpless and furious at the same time.

I just want to scream!!!!!!

I know I have to send an e-mail to Prof H again on Monday and inform him about my problems and ask him to look into a better solution for me.

This is not how I want to feel every day.