Thursday, July 29, 2010

G-tube-a-licious? And other EDS fun

To start, I want to send a big-huge THANK-YOU to my bendy friends for helping me put my head on straight when EDS is getting best of me. Having a psychologist helps, but it's nowhere near talking to other bendy people who really "get it", especially at 2am. What would we ever do without the internet? It makes me laugh that the only people online at 2am are my bendy friends, and last night there were six of us. If any of you are regularly up at stupid o'clock in the morning with the awesome symptoms we have, there's always someone on Facebook.

So I sent an e-mail to the paddle centre explaining that I can't paddle anymore because of EDS. The following morning, they replied and were most excellent about it. They refunded me, no questions asked and still offered to involve me in their bbq's after the evening paddles that I used to be able to participate in. This is the same place that has encouraged me take the kiddo's I teach on the water, worked around the kiddo's needs and wouldn't let me pay for it. So if you're ever in Toronto and looking for something to do, I suggest going for a paddle.

I'm still really struggling with having to give paddling up. Just imagine having to give up the thing that makes you feel whole and the place where you're happiest for a wheelchair. *bangs head on wall* I think the combination of having to give up a lot, coming down from the EDNF conference high, and getting wheels all within a couple weeks of each other hasn't been the greatest thing for this girl.

Okay, on to the g-tube thoughts. Excited?
This is something I've been thinking about for about the last 1.5 years. I have both pharyngeal and esophageal dysphagia, along with some pretty crazy reflux and throw in some TMJ issues for fun. For the reflux, pharmaceuticals haven't helped at all and with natural medicine and diet modification it's gotten a bit better. However, when my hormones are crazy or my suspected dysautonomia is acting up nothing helps. Forget the food, water makes me reflux. The choking, yeah it's a mess. To put it this way, I choke on all foods including liquids. I often block off my airway, or aspirate. This has resulted in pneumonia 4 times. When the hormones are crazy or the "dysautonomia" is in full force, I do nothing but choke or puke, which makes me avoid eating all together. After getting a bunch of tests done and an evaluation by a Speech and Language Path, they said there wasn't really anything the could do. They told me that I needed to get checked every 6 months for esophageal cancer due to the reflux, to avoid eating alone and keep doing what I'm doing. This was pre-neck sublux for the second time and pre-"dysautonomia". So here's my rationale for the g-tube. It will safely provide me with adequate nutrition when reflux and choking are out of control, it's a lot more safe than eating alone and it would ideally help decrease the chances of esophageal cancer if I'm not refluxing from eating orally. It would also give my jaw a break. As an added bonus, I already have training and experience. Waddayathink?

And just for fun, I found this and think you may get a kick out of it! It's kid-friendly virtual surgery!!! how cool is that?!

That's it from this end of the pond, more to come later.

"When life smacks you in the face, smack it back!"


  1. Hey! I just found your blog and I love it- I have EDS myself and I can totally relate to everything you've said. Thanks for posting and making me feel like I'm not totally alone in this!

  2. Thanks for reading my crazy rants and coming on the ride. This a way for me to keep it real and write what I learn about along the way.

  3. My daughter has severe reflux and a g-tube. The trouble is, the g-tube alone doesn't stop the reflux; it only provides an alternate route into the stomach. My daughter was still refluxing formula that was put in through the tube. She had a Nissen Fundoplication, which did help with the reflux, although she ultimately required a jejunal feeding tube. I'll gladly answer any questions you have--my EDS doesn't cause as severe of GERD as yours, but very few drs have seen refluxers like my little one!

  4. what is your email address? how would we contact you directly pls? xo

  5. @ Anonymous,if you post your e-mail I'll reply as comments can't be seen by anyone else unless I publish them (which wouldn't happen in this case). Also curious if you could include in your post why you want my e-mail. I'm a bit leery of spam and other online creeps. Why can't the world be filled with just good people?