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longtermsurvivor
longtermsurvivor Member Posts: 1,842 Member
edited July 2014 in Head and Neck Cancer #1

I have been completely dependent on a G tube for about six months now, and I will live with it until this journey is over.  I wound up with a G tube because my jaw won't open enough to get a JPEG in, and will barely permit me to be anesthetized.  As some of you know, my G tube has been quite an adventure.  First, in the selection of anesthesia for me, which left me halucinating for 48 hours afterward.  Then in the apparently inappropriate selection of the tube itself.  For reasons never made clear, I wound up with a 24 french foley catheter, a catheter designed and approved for bladder drainage, not stomach insertion.  The surgeon who did this for (or was it to?) me seemed proud of his acccomplishment, but then he didn't have to live with the results, I did.

I have had lots of trouble with this tube.  It has a huge bulb inside my stomach, holding 30cc of water.  That proved enough bulk to permit my stomach to actually injest the tube, pulling the anchoring sutures through the skin on three different occasions.  That hurts.  And on two occasions it caused obstruction of my small intestine (imagine yourself swallowing a fishing bobber), so I've had my share of ER time over this.  I have never seen the original surgeon in the ER as these problems have come up, but then the ER physician seems to know more about these than the surgeon does anyway.

Last month I was headed to St Louis for my scheduled chemotherapy, a drive of about 350 miles.  My wife wanted to stop and eat, so we pulled into Cracker Barrel.  Upon sitting down at the table, the bulb inside my stomach ruptured and the G tube simply fell completely out.  As I had had two cans of jevity in the hour prior to this, you can imagine the cascade of mixed fluids that coverd the table, chair, floor, my pants, shirt, shoes and underwear.   Anyway, the Cracker Barrel staff, to their credit, was sympathetic, and within a few minutes off to the ER we went, an hour away, with me making like Jack the Dutch Boy, plugging my leak with a finger.

Four hours into my ER visit, I had a new G tube.  Of course, they couldn't find a modern, approved device that would actually fit, as my stoma is entirely too big for that. So back to another 24 Ga foley catheter I went.  I have subsequently bought an identical cather and have built myself a kit including the cather, lubricant, gloves and absorbant towels so that when this happens again, and it will happen again if I live long enough, I can handle it myself.

Sometimes you just have to have a sense of humor.  

 

 

Pat

 

 

 

 

 

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Comments

  • hwt
    hwt Member Posts: 2,328 Member
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    OMG

    Pat,

    So very sorry to hear about the bad experience but pleased to hear that the people at Cracker Barrel were understanding and helpful. Only you could build your own back-up system! I had a g-tube 01/2012 until summer 2012. Short of a stitch that got painful, I did not experience any issues. My doctor at Mercy had suggested a g-tube a couple of weeks ago due to my cellulitus and hospitalization but so far, I have dodged that bullet. I am trying to make a real effort to take in calories to avoid. I was unaware that opening of the jaw had anything to do with putting in a JPEG, as always, you are a wealth of never ending information. Know that today, you have encouraged me make a real effort to get 5-6 Ensure down. I've only been doing one or two with minimal soft foods and I know that's not enough. 

    My best to you, Pat.

    Candi

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
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    Pat, when you can keep your

    Pat, when you can keep your sense of humor thru all that, you've got a LOT of humor.  in fact, you could spare some.  you could bottle that crap and sell it.....lol.  seriously, i'm so glad everything turned out alright and I'm praying nothing more happens to you that shouldn't.  you are an awesome human being.  thank you for all you provide to the members of this site.

    God bless you,

    dj

  • KB56
    KB56 Member Posts: 318 Member
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    G Tube

    Pat, the G tube experiences can cover the entire spectrum from humor to distress for sure!   One night I was laying in bed and suddenly my underwear and the bed was damp/wet and initially I wasn't sure what happened but I didn't think I had an "accident".  Then I noticed my tube was sliding in and out of my belly and my wife (being the nurse that she is) decided the bladder in the stomach had a leak.  We went to the emergency room and spent hours waiting on a doctor, etc.  He just injected the tube with saline and did some xrays to make sure it was in the right hole, etc.

    The next night the same thing happend but I had "grabbed" an extra saline syringe at the ER so we pumped it up ourselves that night and made arrangements to have it replaced the next day.   Then everything seemed to work fine after that.  The second tube was a clear tube (the first one was white) and when you can see the tube and what's inside you definitely do a better job of flushing it.   I had gotten a little lazy when it was white but when I could see the stuff in there, my flushing took on a life of its own.

    I'm glad you still have your sense of humor and can laugh at things like this.  I hope you're doing Ok and able to enjoy the little things with your wife (like driving 350 miles to chemo for that quality bonding).

    Keith    

  • michdjp
    michdjp Member Posts: 220
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    Wow

    It's good you have a sense of humor!  They say that's what gets us through the hard times.  I hope you have a smoother road going forward but at least now your prepared for the bumps! 

    All my best

    michelle

  • cureitall66
    cureitall66 Member Posts: 913
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    Oh my....

    Oh my....for goodness sake! Talk about a journey! I'm sorry to hear about these unfortunate mishaps. I hope things are coming along better and I certainly don't blame you for getting your "own kit"! I have been wondering how you were doing and figured you were busy with the long drives and treatment, but this explains most of it!

    Keep that chin up, it's got to get better from here! I am keeping you in my thoughts and prayers each day, Pat.

    Take Care and keep us posted.  We're always looking for some comedy around here...Laughing.....although Matt does a pretty good job too.

    ~Cris 

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    hwt said:

    OMG

    Pat,

    So very sorry to hear about the bad experience but pleased to hear that the people at Cracker Barrel were understanding and helpful. Only you could build your own back-up system! I had a g-tube 01/2012 until summer 2012. Short of a stitch that got painful, I did not experience any issues. My doctor at Mercy had suggested a g-tube a couple of weeks ago due to my cellulitus and hospitalization but so far, I have dodged that bullet. I am trying to make a real effort to take in calories to avoid. I was unaware that opening of the jaw had anything to do with putting in a JPEG, as always, you are a wealth of never ending information. Know that today, you have encouraged me make a real effort to get 5-6 Ensure down. I've only been doing one or two with minimal soft foods and I know that's not enough. 

    My best to you, Pat.

    Candi

     

    Thoughts on getting a stich

    They kept insisting on stay sutures for me too.  You've got to be kidding.  This foley catheter weighs a lot, and to have it dang[ing down held by a stitch through the abdominal wall skin is ridiculous.  It makes exercise impossible.  When my third set of sutures pulled out, I cut the remaining loose to get rid of it.  I called Bard manufacturing to talk to their tech about bolsters for the outside.  Of course, since this catheter is not approved for use as a G tube, no one made one.   But I did.  I took a plastic butter dish, cut a circle out of it about 1 1/4 inches in circumference, then cut two parallell lines from the perimeter of the circle to the center, spaced the same distance apart as the width of the catheter.  I placed this next to my belly wall with the "flange" I had created sticking out adjacent to the catheter, then used a quadrupled rubber band to secure it to the tube.  This way the catheter cannot be drawn inward.  It has worked fine for a month.  When I shower I just slide the contraption out a bit for cleaning.

    This multiple bowel obstruction event spanned about six weeks right at the start of my chemo.  It could have killed me.  I lost a ton of weight, most of my muscle mass, and left me barely able to walk.  Now I am actually improving.  Even though I expect tomorrow's CT will show local and regional progression of my cancer, I am gaining weight.  8 Jevity a day will do that.

    My jaw opening is now about 10mm.  They cannot get a tube in through that opening.  So they had to do a blind nasotracheal intubation.  It took them 90 minutes to get me to sleep safely, then 15 minutes to do the procedure.  They used ketamine, which I have never seen used except in pediatric burn cases and veterinary medicine.   It is not a fun drug, as it makes you have these horrible, Dante's Inferno type hallucinations, but it is safe to use if you can't get a tube down.   Lucky for me, I was able to recognize they were hallucinations I was having, so I didn't completely go off my rocker for two days.

  • katenorwood
    katenorwood Member Posts: 1,912
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    Not good

    Pat,

    Your glass always seems to be half full.  (not empty)  I am so angry things like this happen.  And are the MD'S (surgeons) being made accountable for such as**ne mistakes ?  You sir, I will admire and be inspired by the rest of my life.  Katie

  • donfoo
    donfoo Member Posts: 1,773 Member
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    best option

    Sometimes you just have to have a sense of humor.   

    You got the right attitude, the other possiblities offer so much less. Not sure the folks at Cracker Barrell will view the experience with such levity. And now you have a DIY kit to boot. Keep grinning!

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
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    KB56 said:

    G Tube

    Pat, the G tube experiences can cover the entire spectrum from humor to distress for sure!   One night I was laying in bed and suddenly my underwear and the bed was damp/wet and initially I wasn't sure what happened but I didn't think I had an "accident".  Then I noticed my tube was sliding in and out of my belly and my wife (being the nurse that she is) decided the bladder in the stomach had a leak.  We went to the emergency room and spent hours waiting on a doctor, etc.  He just injected the tube with saline and did some xrays to make sure it was in the right hole, etc.

    The next night the same thing happend but I had "grabbed" an extra saline syringe at the ER so we pumped it up ourselves that night and made arrangements to have it replaced the next day.   Then everything seemed to work fine after that.  The second tube was a clear tube (the first one was white) and when you can see the tube and what's inside you definitely do a better job of flushing it.   I had gotten a little lazy when it was white but when I could see the stuff in there, my flushing took on a life of its own.

    I'm glad you still have your sense of humor and can laugh at things like this.  I hope you're doing Ok and able to enjoy the little things with your wife (like driving 350 miles to chemo for that quality bonding).

    Keith    

    On quality bonding

    of course, this absolutely freaked my poor wife out.  when I looked over and saw she was doing 90 mph, and that in a rain storm, I asked her to slow down.  I think my words were something like "I don't want to die in a car wreck......"

     

    Pat

  • lornal
    lornal Member Posts: 428
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    PEG tube woes

    Sorry to hear of all your PEG/Catheter woes.  Mine are finally over.  From 9/30/13 to May 9 I had a PEG tube.  3 emergency room vists. 6 tubes or was it 7.  1 pair of damaged shoes, and lots of carpet cleaning. It was pulled in March, and then finally it all ended in May when the GI doc went in through my mouth cleaned the tract, caterized it, and clamped it shut.

    Lorna

  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    Pat

    You are a continual inspiration to me.  I've been taking notes.

    Deb

     

  • patricke
    patricke Member Posts: 570
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    TUBULAR WOES

    As Rosanna Rosanna Danna says, "it's always someth'in....."  I'm sorry to hear about the never ending tubular woes that you have been enduring, un ####### believable!  I'm glad on the other hand that you are able to deal with it with a sense of humor, and are generously sharing it with us; thank you.  With all of the do it yourselfing that you are having to do, you will be ready to open your own Home G Tube Depot, the place to go for G Tube fixins, repairs, and creative solutions for those pesky problems that just can't be found at your local doc office or hospital.  It's good to hear that you are gaining weight, (Jevity, just good stuff) so hopefully your weight will stablize at a healthy level.  Yeah, sometimes you just have to laugh; keep on grinn'in........*  Sending the best of hopes, wishes, mojo, and then some your way.

    PATRICK

     

  • polystone2014
    polystone2014 Member Posts: 59
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    sense of humor

    so positive to face the problem. It is a great sense to share with us and make us better. THANKS.

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    H&N funny

    Pat,

    You truly are the “Macgyver” of the H&N team and your wife makes a heck of a “wheel man”.

    See you at the club house.

    Matt

  • wmc
    wmc Member Posts: 1,804
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    Wow, that's too much....

    Your sense of humor has to be what is getting you through all you have endered. Thank god you have it and I take my hat off to you. I thought I had a sence of humor to get through mine but there is no compairison. Keep it up and I hope you get over this set back soon.

    Bill

  • Guzzle
    Guzzle Member Posts: 710
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    wmc said:

    Wow, that's too much....

    Your sense of humor has to be what is getting you through all you have endered. Thank god you have it and I take my hat off to you. I thought I had a sence of humor to get through mine but there is no compairison. Keep it up and I hope you get over this set back soon.

    Bill

    comic relief

    Is a charity event in the UK. Your story would earn the charity a lot of money Pat!

  • Goyca
    Goyca Member Posts: 220
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    Pat :) I'm glad u handled

    Pat :) I'm glad u handled this, like u always do, with a positive attitude.

    I'm always inspired by u, sometimes I don't really understand the medical situations that u talk about,but I go like "I'm worried about my eyebrow falling off bcz of rads, and this guy has tubes and some other medical stuff that I don't understand, and he is making fun of the situation..!!! Seriously"

    Pat, u r officialy my cancer survivor guru ;)

  • phrannie51
    phrannie51 Member Posts: 4,716
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    You have a better sense

    of humor than I do....LOL.  I thank gawd my tube was done right, as I'd been helpless to do a home made fix for it.....tho I did get a giggle out of the mental picture of your finger being in the ****. 

    p

  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
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    I TOTALLY GET IT

    I accidentally pulled mine out when the part that sticks out was unusually long and I sat on it with my thigh and when i reclined in my chair it pulled out. I did not even feel it come out, It took getting completely soaked and I though I pissed myself. Had to go back to Interventional Medicine to have it re inserted. It was a hassle, but for the six months I had it, it saved my life.

    Best

     

    Mike

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    Options

    Thoughts on getting a stich

    They kept insisting on stay sutures for me too.  You've got to be kidding.  This foley catheter weighs a lot, and to have it dang[ing down held by a stitch through the abdominal wall skin is ridiculous.  It makes exercise impossible.  When my third set of sutures pulled out, I cut the remaining loose to get rid of it.  I called Bard manufacturing to talk to their tech about bolsters for the outside.  Of course, since this catheter is not approved for use as a G tube, no one made one.   But I did.  I took a plastic butter dish, cut a circle out of it about 1 1/4 inches in circumference, then cut two parallell lines from the perimeter of the circle to the center, spaced the same distance apart as the width of the catheter.  I placed this next to my belly wall with the "flange" I had created sticking out adjacent to the catheter, then used a quadrupled rubber band to secure it to the tube.  This way the catheter cannot be drawn inward.  It has worked fine for a month.  When I shower I just slide the contraption out a bit for cleaning.

    This multiple bowel obstruction event spanned about six weeks right at the start of my chemo.  It could have killed me.  I lost a ton of weight, most of my muscle mass, and left me barely able to walk.  Now I am actually improving.  Even though I expect tomorrow's CT will show local and regional progression of my cancer, I am gaining weight.  8 Jevity a day will do that.

    My jaw opening is now about 10mm.  They cannot get a tube in through that opening.  So they had to do a blind nasotracheal intubation.  It took them 90 minutes to get me to sleep safely, then 15 minutes to do the procedure.  They used ketamine, which I have never seen used except in pediatric burn cases and veterinary medicine.   It is not a fun drug, as it makes you have these horrible, Dante's Inferno type hallucinations, but it is safe to use if you can't get a tube down.   Lucky for me, I was able to recognize they were hallucinations I was having, so I didn't completely go off my rocker for two days.

    Go to Home Depot

    Pat, I heard that  Home Depot stocks just the kit you need to get this thing fixed, so check that out.  And, please save some of the Kefamine for me--I miss the fentanyl and dilaudid hallucinations I had during my recent induced coma after jaw surgery ;)

    Hang in there.

    mike