Saturday, November 28, 2009

Epiphany on how to live with all my digestive problems

I had an epiphany last week:

If I am feeling sick and nauseated and having very "slow stomach days", than this is, at least up to a certain point, my fault.

The thing is, my biggest problem at the moment is accepting my situation. Yes, I have delayed gastric emptying and a whole bunch of other digestive problems on top of it and no, those digestive issues are not going to magically resolve itself overnight. If I was to finally accept this situation, I would not be as surprised about my "slow stomach". And maybe I would finally stop continually "testing" my stomach to see if maybe I could tolerate that food or if it had gotten magically better overnight.


If I look at the big picture, my situation itself is not that bad. I can drink enough fluids on most days to stay hydrated, I can take in enough calories (plus extra for a few more kilos) thanks to my feeding tube, and I can eat certain foods during the day without getting sick.

When I talk about accepting my situation, I don't mean that I am going to resign myself to it and think my digestive system will never improve. I am just trying to relax with this situation and try to master it with a backpack full of tools. And I really do have a backpack full of tools: domperidone, more tube-feeding, less volume, low-fiber and low-fat foods....

I don't want to pity myself and give up, no, I want to make the best of it and I don't want to question what actually works for me, just because I am getting tired of having a low variety in foods or thinking that I should be having more vegetables because aren't vegetables supposed to be really good for you?

I therefore think that it is largely up to me if I am feeling more nauseated or less nauseated and if am sticking to my dietician's orders on which foods to avoid for delayed gastric emptying (and my many other food intolerances and allergies) and, if necessary, supplement with more tube feeds during the night, I actually feel quite well and healthy and am able to live almost symptom-free.

M's mantra for me always is: patience and consistency - and he is so right, I know :-)

My goal for the next few weeks (actually for longer, but you are supposed to work with attainable goals):
  • be consistent
  • listen to my inner "stomach voice"
  • only eat the things I know I can tolerate
  • take my domperidone (and enough of it)
I want to try and "like" my stomach and my entire digestive system and have positive thoughts about them. Given the fact how barbaric I treated my digestive system for so many years, I want to be grateful that they still function as well as they do, that I can eat orally and don't have to live off tube feeds only and that they are doing such a good job digesting all that tube feeding formula that I feed during the night.

Thursday, November 26, 2009

Thursday evening update

I had planned to write a really positive and upbeat update tonight, telling you about all the good things that have happened in the past two weeks. But I feel drained and tired and nauseous.... and have a hard time thinking of the good things in my life.

But the good things definitely are there:
  • my fiance who loves me unconditionally and just finished cleaning the kitchen and is running me a nice hot bath as I write
  • getting the opportunity to do my mandatory work experience for my Master's degree in a Neurology ward in a Vienna hospital - something I have always wanted to do
  • having S to always talk to who is in the same boat I am in regarding our respective theses with our very difficult professor
  • having the best dietician in the world
  • being able to be a god-mother to one of my friend's twin boys and having the opportunity to hold him and feed him and diaper him ....
  • having a backpack full of tools to deal with my digestive problems
  • my feeding tube that allows me to gain and maintain my weight and have enough energy and be healthy
 Not to forget about my three, slightly crazy, yet very lovable kitties:


 Kitty love!!!!



Aimee after her morning shower :-)

Friday, November 20, 2009

My skin and I - a love hate relationship

I have super-sensitive skin, can only use allergy tested fragrance free skin products, fragrance free laundry detergents etc.

When I had had so much success with the Medihoney treating my stoma infection this summer, I decided to also start using the Medihoney barrier cream for the skin around my stoma to protect it from friction through the button and stomach acid. Unfortunately I had some type of reaction to the cream. I don't think it was the cream itself, it was more the fact that it somehow plugged my sweat glands and when I sweat underneath my dressing the hair follicles on my skin became infected. I have been silently watching this rash for six weeks, trying different things, not using certain things, hoping for it to get better. It always looks better in the morning, but as soon as I started to sweat only a bit, it would start to look really red and angry again.

My tube and consequently my stoma is my lifeline. And knowing I had some kind of rash going on that didn't really go away on its own put me under a lot of stress.

Wednesday I finally capitulated and made an appointment at a dermatologists. I found a private dermatologist that takes patients at short notice and I had my appointment this morning.

I am so glad I went and didn't sit around and watch the rash any longer. Turns out I have atopic excema, and several factors like the barrier cream, the sweating underneath the dressing, my many allergies contributed to me developing this excema.

The dermatologist took a skin culture and I have to start using a steroid cream. I also have to disinfect the affected area. I hate doing that because I was told to not use disinfectants with my stoma and I don't have the rash on my stoma. I will try my best to not get any disinfectant near it :-) and keep it clear from the steroid cream.

The dermatologist promised me that we will be able to heal it, but I am just so impatient. I want it to be better NOW, so that I don't have to worry about it any longer. I am dependent on this feeding tube and everything that comes with it to work.

I have a question though for fellow tube-feeders. Do you use dressings underneath your button/g-tube? I just read in an old mic-key button manual that I found while cleaning up that you are not supposed to use dressings long-term. I am not sure if the dressing contributed to the excema, but on the other hand, my stoma gets really wet without a dressing and the last time I stopped using dressings for a few weeks I developed my stoma infection.

Sometimes I just hate all of this. I hate that I have to deal with and worry about stuff like this.

Tuesday, November 17, 2009

Just came back from the MRI, no iv contrast needed and the MRI itself not bad at all.
It was noisy and very tight and narrow, but as long as I kept my eyes closed, I didn't feel panicky.
Results will be in tomorrow.

Monday, November 16, 2009

MRI tomorrow

I have been gradually losing my sense of smell over the past half year. Actually the first time I noticed it was this summer while on vacation with M (couldn't really smell the lovely scent of ocean air) and I also posted about it here.

I casually mentioned it to my ENT during my last appointment in October and was quite surprised to find out that he wanted me to have an MRI of my head. Even though he thinks that this might be all due to the severe allergic rhinitis I have had for years, he still wants to be 100 % sure that nothing else is happening inside my brain that could cause this kind of symptom.

Essentially, he is looking for tumours and that does scare me a bit, but I know in my heart that everything will be all right.

What really scares me though is the prospect of having contrast dye injected for the MRI. I am histamine intolerant and contrast dye in histamin intolerant people can cause adverse reactions, and that's what I am scared off.

Please pray that everything will go well tomorrow!

Monday, November 9, 2009

Tired

I usually always try to be up-beat and positive, but today I just can't.

I actually had a wonderful afternoon, spending time with my best friend and her twin boys (one of them being my god-child), having lots of cuddly time with both boys, feeding them and changing diapers and lots of woman-to-woman chats with my friend.

But still, I am having a hard time fighting off feeling down. I have been having bad "slow stomach days" since last Thursday and I just hate the nausea and feeling full all the time that comes with it. I have been taking domperidone again, and it does help a bit, but I hate to rely on even more meds to function somewhat.

We have been increasing my tube-feeding calories because of my high energy needs - more calories means more formula and that means more time spent hooked-up. When I am having bad gastroparesis days and I can't eat enough orally during the day, I have to increase my nightly tubefeeds even more and I hate being hooked up for so many hours. At the same time I simply don't want to hook up during the day, especially when I am at work.

Sunday, November 8, 2009

Are you doing it twice a week?

Alcoholism is big problem here in Austria, especially in rural areas. Therefore, the Austrian Health Ministry has launched a new campaign to combat alcoholism in Austria and this is one of the adds (source: http://www.bmg.gv.at)


It says: Are you doing it at least twice a week?
Meaning: are you having at least two alcohol-free days a week?

Scary to think that the Austrian Health Ministry actually has to campaign for people to have to alcohol-free days a week....

I am doing it twice a week, actually seven times a week, as I can't tolerate any alcohol.

How about you?



Friday, November 6, 2009

Usb-stick drama

I had my own little usb-stick drama on Thursday.

I am working on my thesis like a maniac right now. At the moment I am going through all data files, inspecting each and every single eeg recording for artefacts and correcting those artefacts using several excel macros. I have been doing this for the past three weeks, as this is a very tedious work. (I have to go through 96 data files with four study conditions each and per study condition I have 15 eeg recordings to look at - making this 5760 eeg recordings I have to go through.
I am working on my thesis

On Wednesday I spent seven hours in the lab correcting artefacts. Because I did not want to save my work on our lab pc I directly worked on my usb-stick all day. I usually save all my work on my own laptop at home at night, but that night I had left my usb-stick at work.

Back in the lab the next morning, I plugged in my usb-stick into our lab pc and nothing happened, when I tried opening it, I was told that the usb stick was not formated and did I want to format it now? Formatting - no way! I retried it on my netbook - nothing. I then asked our computer technician, who tried it with his pc - nothing. He then informed me that one is not supposed to directly work on a usb-stick, because usb-sticks have a limited cycle amount. Aarghhhhh! If I had only known that before!

I spent yesterday evening and this morning redoing all the work I had already done the day before - not directly working on my usb-stick this time around.

If you are curious, this is what I have been doing:


This odd looking spike is an artefact due to our unfortunately often mal-functioning eeg-hardware. Using excel macros I try to eliminate those artefacts as good as possible. So much fun (not) :-)