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.


Lisa at AMT said...

Hi Tube Girl. Have you considered using a non-balloon low-profile device? They can be placed in the same way as a balloon device, provide a smaller internal bolster and they are low profile as opposed to having a long G-tube hanging out. Please email if you need more specific information.

Tube Girl said...

Hi Lisa!
I have been in contact with an AMT engineer via e-mail and he can't guarantee that I won't have the same problems with the non-balloon button. Plus my gi-doc doesn't want to place a non-balloon button as long as my stoma site is still quite new.

Stephanie said...

When you see your doc be sure to mention the "dots", sometimes when the stome gets raw, a yeast infection can start. The yeast rash looks like red dots.
It can be fixed with an antifungal cream or an oral antifungal.
Also, I don't know if you have it there but there's a dressing called Mepilex Lite. My son uses it. It comes in a large sheet that can be cut to fit around the button. It's a thin foam dressing that absorbs drainage. It adheres to the skin but it's specifically for broken down, wounded skin. It doesn't hurt when removed and allows the skin to heal underneath.

Tani said...

Hi, I ran across your post in the yahoo groups site where you were supporting someone with a new tube. I have severe gastroparesis and a mic-key g/j button. I was curious how long you've had your tube? The first 6 months were awful with the popping sensation. I was told that was normal at first, that it should go away and it eventually did. They also said it might happen if I try to eat by mouth because it is actually the stomach trying to digest the balloon. Sometimes sitting in a different position or stretching would help me. I still get it from time to time but it is much better.

I am unsure how long ago this was posted, but I was encouraged by reading your story, our stories are so similar. (I lived with an ng/nj for 4 years before I finally found a good GI dr!) I am so glad you found your dietitian who is a good advocate for you.

I appreciate your openness on this blog and am glad I visited here. I wish you the very best


Tube Girl said...

Hi Tani!
Thanks for your comment! I have had my button for a little over two months now and things have gotten a lot better. I do still feel the popping sensation sometimes but I can deal with it quite well now. I have also noticed that different positions can help with it - like for example if it happens in the early morning hours I just turn to sleep on my belly and that somehow fixates the button and helps with the popping sensation. All in all I am really glad that I have not had to go back to the peg-tube because I really love the low-profile design.
You lived with an ng/nj tube for four years? Wow - and I thought six months were really long...
I had a really hard time as well finding a good gi doc, but the one I have now is amazing and very supportive. How long have you had the gastroparesis? Are you able to eat anything by mouth?

tanimas said...

I am glad to hear things have eased up for you with the button popping! I have had gastroparesis most of my life but didn't know it. I was diagnosed with anorexia and went through multiple treatment hospitals and long term residential centers including Remuda Ranch in Arizona. Nothing helped. My physical complaints were ignored as being in my head. I quit going to doctors for many years and just dealt with it until I could no longer tolerate anything, even water. About 5 years ago an emptying scan showed gastroparesis, but the Dr still thought it was mostly in my head. He decided to force me to gain weight with an ng and then nj tube. He refused to give me a more permanant tube with the opinion that I would abuse it to purge based on my past hospitalization record. I lived like this the past 4 years all while teaching part time. I learned to whip it in and out without discomfort eventually. I moved to another state last year, and found a wonderful GI, surgeon, dietitian and hospital team who know nothing of my past medical history and took me for where I am. I do not tolerate anything by mouth except small sips of clear liquids like water, broth, sometimes jello. The G/J mic-key has been a blessing! I am able to vent as well as eat. Unfortunately I'm still getting food back into my stomach and will require placement of a separate G and J. Still...anything is better than that dang ng tube!

Tani said...

Hi Tube Girl. The above posted was my response to you. tanimas is my e-mail account but this is still Tani talking to you!

Tube Girl said...

Hi Tani!
I would love to talk with you some more, but maybe a little more privately than in the comment sections :-). If you feel up to it, email me at

Tani said...

I apologize, I had thought you were asking for more of my story...

Tube Girl said...

Hi Tani! Now I am confused - yes, I did ask for more of your story and I am glad you replied. I always used to feel like the odd one out here in Austria not knowing anybody who was having similar issues and am so happy that I have found people "like me" through the Oley foundation. I would love to talk to you some more and I guess I thought that would work better via e-mail or also through the inspire-account for the oley foundation (do you have one?) instead of doing this very openly in my comments section. I am sorry if this came across the wrong way.

Tani said...

Hi Julia! No worries, I also would feel more comfortable in a more private setting, I do have an inspire account but cannot remember my password to sign in! I'll work on it. I do also appreciate connecting with people with similar issues and stories. Sorry I misunderstood your reply! I will try connect with you through e-mail in the future



Tube Girl said...

Hi Tani!
Well, I am glad we got this straightened out! Reading your story made me feel with you. I can't believe you were actually sent to Remuda. You must have felt awful inbetween all those eating disordered patients knowing that it was not just "in your head". You might have read on my blog that for me it was the other way round. I really used to be an anorexic, recovered and then developped more and more digestive issues as a result of the long years of starvation. I can really empathize with how you must have felt. I had such hard time getting someone to believe me. I kept telling gi-doc after gi-doc, that no, this was not in my head, I know what anorexia feels like, this is not anorexia.
I can't imagine that you actually had to endure the ng/nj-tube thing for four years before finding the right gi-doc. And you managed to put it down yourself? Wow, I am really amazed. I went to work (I work as a teaching assistant at the University of Vienna)with my ng-tube in place and to class as well. I really got used to being stared at!
I am so happy for you, you finally have a good team of professionals as well.
Well, I would really love to hear from you!
Take care and have a good day,