Sunday, February 16, 2014

Tu-be or Not Tu-be?

  Good News: Maybe No Tube :

If you are debating on whether to get a stomach tube and you read this post (or for that matter my past posts on my Stomach Tube) do not be discouraged from getting it! My past posts about my stomach tube & feedings are all posted here! Let me start by saying I had my tube put in the summer before 7th grade in 1997. I did have quite a few issues at first, and of and on over the years. However, I will NEVER regret my decision. That's right my decision. Mom and Dad had my doctor tell me all about it and leave it up to me. I wanted to grow and gain weight, I wanted to have energy. I loved dancing but at 4'7 and 40 pounds in 7th I had trouble keeping up with energy. Then I had the tube put in and started getting an extra 1,000 calories at night! Within the following year I weighed 90 lbs and gained a couple inches! I even had the energy to try-out for the pom squad! I made the squad my 8th grade year and shockingly never got run down! Dance classes became easier and overall, I could do more! Great choice, even with the leaking problems, etc over the years.

Why am I bringing this up again? Right...Well I have been wanting my stomach tube out for the last couple years. I'm 28 years old. It does get in the way with floor routine stuff in my modern dance classes and sometimes when people hug me (and pick me up) it yanks. I know that those are hardly reasons to get rid of it when it can do so much for me. However, I also haven't USED IT SINCE OCTOBER! That's right, 4 months and no tube. I have kept my weight above 105 lbs. And right now am stable around 109 for the last month or so. I may not need it and it's leaking drives me nuts! Lots of people have suggested that I should see a doc about the leaking. I have. They all say that it just needs to be replaced with a bigger tube. The problem is that over all those (15 years!!!) years of having the tube in, it rubs away at the sides. Which makes the hole bigger and has more leaking issues. Replacing G-tubes is no big deal to me.

When I had my first G-Tube put in it was a Bard stomach tube. Which means instead of it having a blow up balloon on the end like the new mic-key buttons do (most do now) it was hard plastic ball. I had it changed to the mic-key a few months later (see mic-key button picture: the balloon is in the stomach and the beach ball looking flap is on the outside). So when we changed it over, to the new mic-key blow up type balloon g-tube, it hurt a lot. Mom held my hand and the doc ripped the plastic one out. I guess even at the age of 13 I had a strong opinion and was I apparently called him a cuss word while he did it. The nurse chewed me out, but the doc replied to the nurse "That hurt a lot, she can say whatever she wants. Its okay, Cheriz." After that I had the new awesome mic-key button, which I then only had to replace once every 6-9 months when it was getting old/deflating.

I could post pictures or a video of me changing my tube. Yep, because I change it myself at least once a year and have been since I had it put in. But ew, who wants to see video of that?!?!?! If you look at the picture above you'll notice the hole on top (where we hook up our feeding) and then look to the right side. See the white part? A syringe fits on that and we can then pull the air out of the tube to deflate it. This makes is so we can pull the tube out of ourselves and then push a new tube in the hole in our stomach. HERE IS ONE REASON WHY I want it out! I hate doing it. I've dealt with lots of surgeries, procedures (tubes down my nose, enemas up my bottom, and many needles poked into me). So pain isn't a big issue. But it feels different than just pain to change it.

What's it feel like?
I'm not sure if others experience this. But, It  feels like you are gagging. Like I'm choking, but from within. Like your pulling a knife out of your gut (or what I think that would feel like). Not sure if that makes sense. But your stomach feels like its gagging, not your throat, your stomach. Then after you pull the old one out, while feeling like your pulling a knife out of your own gut, then you have to push a new tube in. If you don't get the new tube put in the stomach wall can collapse. I always have trouble finding the hole in my stomach. I push the tube in a little and basically poke around (which feels like a little pricks directly to the stomach organ). It doesn't hurt a lot, but I always panic I won't find the hole. I always do, but it always makes me nervous.

I don't like that feeling and I used to have to cuss and scream at myself in order to get myself to do it. One time I had a roommate even yell at me "Do it" "Change your tube" -It's quite funny, because anyone who knows my old roommate Stacey could never picture her yelling... haha. She is a good coach. lol. However, in the last couple years (while living on my own) I had to "woman up" and just had to do it.  So now I can, but I hate it. And now that I'm not using my tube, I don't feel like I should have to keep it in and change it still.

So what now?
I'm convincing Doc that if I keep my weight up without using it through the rest of the clinical trial, then I want it out! Which should be later this summer or early fall! YAY! I'm nervous about the way they take it out too! I know the last surgeon I talked to about it, said the stomach walls collapse and heal on their own. Therefore, they just take it out and put gauze over it and let it heal. However, if it doesn't heal within a certain period of time they surgically close it. Well, this terrifies me! So glad I have a new surgeon. I'm pretty sure he'd close it surgically to begin with. I mean I've had it for 15 years!!!! There is no way is going to heal on it's own. Okay, another worry... I've seen the scar and how they heel. I had a friend who had one removed, his scar puckered in. Like a dip in the skin. Which makes sense...but I want my skin sewn shut so there is no dip. I don't mind a scar, as long as it's relatively flat. I love when surgeons consider the fact that I still like to have a semi-attractive body. As you can see I'm no stranger to scars... but I want them smooth feeling.

You can see most of my scars here (except the lower groin scars, from hernias). But here are my scars. I'm
not embarrassed by them. But let me tell about the surgeons who performed them. The stomach tube and my medi-port (scar on my chest/ right breast) were done by Dr.... (we'll call him "Dr. Powelson)But that's not  really his name, I don't want to write anything bad and write the doc's real name. I mean, he is a statistically really good. But his bedside manner is so bad, I refused to see him anymore. To read about my experience with him : read this I'm not a number, I'm a person!  However, those scars above my belly button and below my tube are from numerous intestinal surgeries. I love Dr. Vagunta! He always opened me on the same lines and sewed them so well, they lie flat! I can wear leotards and nobody knows, also they are flat enough I can put make-up on them if I need to show my stomach in a dance performance! Vagunta also did another amazing thing for me. My mediport didn't heal right, it was big, bumpy and purple. I was really self-conscious and didn't like wearing bathing suits. He fixed my mediport scar (on my chest) during a surgery for my stomach! It is soo smooth and healed so well- can you even really see it? Nope!!!! Ha, amazing huh! The small scar under my belly button goes along with a couple scars on my groins and were for hernia repairs. I had some done by laparoscopically and some not. But again, they don't show too much! I also have a small inch wide scar on my face (I had a cyst removed next to my eye). It was a plastic Surgeon who did that procedure, feel free to look at all the pics of me and try to find it. Good Luck, he did a great job!

My new surgeon Dr. Cohen is amazing too, he really cares, like Vagunta did. And I'll be so excited to have this done! I know he'll fix my stomach scar so it doesn't bother me! I know I can keep my part of the deal up, and keep my weight up. I'm eating 3 meals a day (no matter how busy I am), I'm snacking whenever I'm watching shows (healthy snacks though). I want to gain mostly muscle, so I'm doing lots of high nutrient/protein type foods, working out, and Andrew is a fabulous chef, so it works out well!

Here's to hoping!
Let's keep this momentum up, keep this weight on, and hopefully I can prove I don't need this tube anymore! Goal to have it out by next Halloween! Fingers Crossed!


  1. Definitely a good read....I am completely opposite of you so its good to see the other side...i got my gtube probably 2ish years ago didn't use it at first than I was hospitalized they suggest a tube, in my mind a tube would go in my nose and down my throat but once i found out how it really is i was fine with it. the first week i started using it basically 24/7 didn't touch a thing of food (one of the symptoms of mine when i get sick i lost my appetite i would lose mass amount of weight a day or two) i went from 128 to 150 in a matter of three weeks and now 2 years later I still use it ALOT i kinda wish i could go off it but I know i can't keep up with the burning calories bc of my breathing. Looking back I wish I almost would have had it when i was in high school (12 years ago) and i wouldnt have been that 105 kid all thru high school...Good luck with getting the gtube out your going to have an awesome Halloween the way it sounds :)

    Aaron Dolen

    1. Hi Aaron,
      Thanks for reading, yeah it is cool to hear about other people's experiences. I only used my tube at night while sleeping and only took in 1,000 calories at night. So really as long as I eat extra every day, I should be fine! Yeah the tube really helped with High School :-) It does really help on days where I'm too sick to eat. That it true...I'll have to figure out how to cope without it on those days... And yeah, I'm so excited to get it out. 15 years is just long enough. lol. Thanks for sharing your experience, I love hearing about other people's CF stories. Sounds like it really has been helping you, which is awesome! Keep that weight up :-)