- 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
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.