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.

1 comment:

Stephanie said...

Ugh, your life sounds like my poor baby's life of tube drama.
Whatever you decide, I hope it works out.

Oh, there's a lady from the Oley foundation website who emailed me for some info about the barrier cream I use for my son's stoma.. critic aid. I also told her about the medihoney you've been using. She wants to gather some more info about the products for an Oley "tube tips" help page.
I gave her your Oley username in case she wants to ask you about how it has helped.