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Author Topic: My Esophagus  (Read 7225 times)

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Offline AndyArrow

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  • Posts: 1,196
My Esophagus
« on: March 28, 2008, 08:32:31 AM »
Hello All,

I'm new to Aidsmeds/POZ.com although I have been HIV positive for approximately 10yrs.  I'm sorry if this is not the right forum to use.  I was curious if anyone else was or had experienced problems similar to mine.  I have an esophageal stricture that keeps closing.  They aren't sure of the cause, whether its related to my hiv, errosive stomach acid or I did have a cmv infection in my esophagus for a while.  I have had roughly 24 esophageal dilations (the stick differing size tubes down your throat and force it open) and they tried placing a stent there to keep it open.  Unfornately, the stent migrated into my stomach and had to be removed.  When my esophagus closes completely I have to take nutrion through a feeding tube in my stomach.  Fortunately, I have a good GI team who can open my esophagus up right away and I can go back to eating normal foods for a while.  Hopefully, someone out there has been through or heard of something similar that they might be able to give me some advice.

Thanks for listening to me ramble on!
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline thunter34

  • Member
  • Posts: 7,314
  • His name is Carl.
Re: My Esophagus
« Reply #1 on: March 28, 2008, 09:06:41 AM »
Hi, Andy.  Yipes...when I first clicked on this, I expected it to be something more common like a thrush issue. I haven't been through this myself, so I can't offer any particular advice on it.  Just wanted to send a welcome to the forum.

Tim
AIDS isn't for sissies.

Offline BT65

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Re: My Esophagus
« Reply #2 on: March 28, 2008, 11:48:24 AM »
Jeebuz Andy.  I've never had any experience with this or heard of/know anyone who has.  I was thinking, like Timmy, that it might be about thrush.  Is there nothing that can be like permanently placed in to keep it open?  Sorry if I sound way off base; like I said, I know nothing about this.  Good luck with it all sweetie and please keep us posted and stay in touch!

Oh yes, welcome to the forums.  Hope to hear more from you.
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline J.R.E.

  • Member
  • Posts: 7,160
  • Joined Dec-2003 Living positive, since 1985.
Re: My Esophagus
« Reply #3 on: March 28, 2008, 02:40:57 PM »
Hello Andy,

Welcome ! I am also not familiar with what you describe, But I just wanted to say hello and welcome you to the forums.

It's great that you have a good GI team working with you ! Do the doctors recommend any particualar type of diet ? Are there certain foods that you need to avoid ?


Take care of yourself ------Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline SASA39

  • Member
  • Posts: 690
Re: My Esophagus
« Reply #4 on: March 28, 2008, 04:54:56 PM »
As many of us her I also have an acid reflux problem, but thanks God not so serious as you..................and I doubt that any of the members here has a similar one........
Why don`t you go to the www.thebody.com , choose the proper section and ask the question..............
They are very serious about answering with that kind of problems.
                         Al
Oct.     `06.  CD4=58  ?    %       VL not perform. ?!?
25.Dec.`06.         203       14        VL= 0
29.May.`07.    broken device        VL=1363
20.June`07     broken device        VL=0
25.Dec `07  CD4=582                  VL=70
14.May `08  CD4=448
29.July `08                                  VL=0
26.Nov `08  CD4=674                    VL=179
16.Mar `09  CD4=554                    VL=0
19.Jan`10 CD4=715               
03.Mar`10                                    VL=0
24.Aug`10 CD4=524                     VL=0
04.Dec`10 CD4=626                     VL=0
15.Sep`11                                   VL=93
17.Nov`11                                   VL=0
05/26 .Jul`12 CD4=713                 VL=0
28.Nov`12 CD4=916                     VL=0
09.May`13                                 VL=0

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: My Esophagus
« Reply #5 on: March 29, 2008, 04:35:10 AM »
Thanks for all your support.  I really appreciate it very much.  I take 60mg of Prevacid Solutabs (they just dissolve on the tongue so I don't have to worry about swallowing them) but otherwise my diet isn't restricted while my esophagus remains open.  As far as a long lasting solution they had thought a stent (similar to what they uses to keep veins open) might be a possibility but the location of the stricture is right where my esophagus meets the stomach so it can only be anchored at the top.  Still when it is open I'm able to eat normally and it doesn't cause any pain so I'm very lucky in that respect.  Thanks again for then encouraging replies.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline anniebc

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  • Posts: 5,939
  • AM member since 2003
Re: My Esophagus
« Reply #6 on: March 29, 2008, 05:20:39 AM »
Hi Andy

Welcome to the forums.

I have had a few patients in the past who have presented with esophagus strictures...(many years ago) the only procedure I can remember being done was done by using a dilator (like an air filled balloon) which is what they seem to be doing on you now, if I remember right they seemed to work really well, although on occasion a repeating dilation was sometime required.

Also proton pumps inhibitors can be used such as lansoprozole (prevacid) these also work quite well and can (but not always) keep the strictures from coming back...have you been on PPI's?

It seems you GI team have everything very much in control.. it doesn't sound like you will need surgery but I'm surprised they have done so many dilations on you so far, have they ever suggested surgery? at least you seem to be able to swallow solids when dilation takes place so that's good to hear.

please keep us updated on how things go with you.

Hugs
Jan :-*

-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline AndyArrow

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  • Posts: 1,196
Re: My Esophagus
« Reply #7 on: March 30, 2008, 04:03:33 AM »
Thanks for the Hug Jan.

I have had both ballloon & wire guided savory dilations.  A few times they have injected steriods into the stricture.

Currently, I'm taking 60mg of Prevacid a day.

My GI team really does a great job.  Unfortunately, they can't seem to figure out why the stricture keeps returning.  Right now I have dilations about every three weeks and each time it has closed enough so that I have problems eating.  They don't think I'm a good candidate for surgery so for now dilatiions are my only option.

Thanks again to everyone for their concern.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline MitchMiller

  • Member
  • Posts: 479
Re: My Esophagus
« Reply #8 on: March 30, 2008, 04:42:41 AM »
I had a weird problem where it felt like something was pinching my esophagus from time to time.. like there was a hand down there pressing against two sides of it.  The pharmacy got my meds mixed up and gave me some unknown pill.  Once I got back to the regular regimen, it went away after about two weeks and has never returned.

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: My Esophagus
« Reply #9 on: March 30, 2008, 06:06:49 AM »
Pretty scary thinking about the pharmacy messing up your medication.  I'm glad to hear you are doing better.  I've had my problem for a while now and have changed my meds (injections twice a day ... ugh!) so I don't think they are the problem. 

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline anniebc

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  • Posts: 5,939
  • AM member since 2003
Re: My Esophagus
« Reply #10 on: March 30, 2008, 06:13:19 AM »
Hi Andy

I would have thought after 24 dilations you would have been a prime candidate for surgery..but it's good your GI team are trying to keep on top of things.

Take care
Hugs
Jan :-*
-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: My Esophagus
« Reply #11 on: March 31, 2008, 03:34:06 AM »
Thanks for everyones help and suggestions.  I did ask at www.thebody.com but they felt it was probably just an acid reflux thing unrelated to hiv.  You would think all the prevacid I take would help with that but nobody seems to know for sure.  It doesn't cause any pain so I'm grateful for that.  Thanks again.

Hugs to All
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: My Esophagus
« Reply #12 on: April 01, 2008, 04:12:52 AM »
Hi ... Thanks for everyones help.  I won't be around for a couple of days as there is a problem with my stoma (thats the little hole they make so my feeding tube sticks through the wall of my stomach and comes out near my navel  so I can feed).  It sore & leaking so they want to check it out.  Unfortunatley my GI team is about 3hrs away in Indianapolis.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline J.R.E.

  • Member
  • Posts: 7,160
  • Joined Dec-2003 Living positive, since 1985.
Re: My Esophagus
« Reply #13 on: April 01, 2008, 07:42:46 AM »
he andy,

Drive safely, and take care of yourself. See you back in a few days.


Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 12.5mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


 In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started my first  HAART regimen  on October 24th,03.

 As of 8/2514,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline BT65

  • Global Moderator
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  • Posts: 9,945
Re: My Esophagus
« Reply #14 on: April 01, 2008, 08:23:20 AM »
Andy, good luck with all that.  Please let us know how you're doing when you get back.  By the way, I live about 3 1/2 hours north of Indy, so I know the drive there can be quite monotonous.  Take care of yourself.
  Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: My Esophagus
« Reply #15 on: April 02, 2008, 10:13:39 AM »
Things went much better then I had hoped and I didn't have to spend the night in the hospital!  They had to move the bumper (it's what holds the feeding tube in place on the outside) because it was rubbing against the skin and caused and ulcer.  I screamed and scared a few techs while they moved it a little but fortunately they decided to sedate me while the finished the job and dilated my esophagus one more time.  When I go back they are going to try to teach me to self-dilate.  I'm not sure I can get passed the gag reflex but it beats surgery.  I couldn't agree more about the drive to Indy being boring, Betty.  The only thing worse I think is Nebraska!  Amber waves of nothing for miles and miles!

Hugs to All
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline thunter34

  • Member
  • Posts: 7,314
  • His name is Carl.
Re: My Esophagus
« Reply #16 on: April 02, 2008, 10:47:40 AM »
I'm not sure I can get passed the gag reflex but it beats surgery. 

What kind of queen are you anyway?   ??? ;D
AIDS isn't for sissies.

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: My Esophagus
« Reply #17 on: April 02, 2008, 11:48:17 AM »
I am a dainty flower ... thank you very much!!!   What a bitch!   :P :D ;)
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline anniebc

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  • Posts: 5,939
  • AM member since 2003
Re: My Esophagus
« Reply #18 on: April 02, 2008, 04:02:26 PM »
Hi Andy

I'm glad it turned out well and you didn't have to stay in hospital.

I'm sure you are doing all the right  things, but I just want to make sure you are keeping it clean, I'm sure you are doing this a couple of times a day and turning it when you can, even though it looks ckean we have to make sure it doesn't stick to the skin...not nagging just making sure.. ;)

BTW..Timmy is a bitch but such a charming one I'm sure you would agree... ;D

Hugs
Jan :-*

-----------------------------------------------------------------------
Never knock on deaths door..ring the bell and run..he really hates that.

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: My Esophagus
« Reply #19 on: April 02, 2008, 04:32:44 PM »
Jan,

Thanks for your concern.  I don't think it's nagging one little bit.  Even if it was ... keep it up.

I've been very lucky since this is the first trouble I've had with my peg tube.  It was put in over 16 months ago. 

I have an Iodine solution to help keep it clean & tidy.  I don't really turn it other then when I'm flushing it or taping it up.  Since I have the dilations so frequently I'm really not using it for anything right now but the doctors what to keep it in as a kind of insurance policy for right now.  The hope is that it will stay open longer or that I'll be able to self-dilate and they can take it out.  It's hard to look cute with a 16" tube sticking out of your stomach.  :)

And yes, I have to admit that Tim is charming ... RUDE ... but charming   ;D

AA

It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline BT65

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Re: My Esophagus
« Reply #20 on: April 02, 2008, 04:38:15 PM »
This whole thing makes me shiver.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AndyArrow

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  • Posts: 1,196
Re: My Esophagus
« Reply #21 on: April 02, 2008, 04:42:37 PM »
I'll try not to make you shiver any more, Betty   

Sometimes I just can't help myself  :-*

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline northernguy

  • Member
  • Posts: 1,347
Re: My Esophagus
« Reply #22 on: April 02, 2008, 11:28:45 PM »
Sorry to hear of the challenges.  I'm on Pantoloc (as Protonix is known here) plus domperidone for motility, all to combat reflux.  Funny thing is they never actually did an endoscopy, they just went by symptoms, so I don't know what shape my esophagus is in ???  I feel kind of wheezy but have never had a problem getting anything down (shut up bitches).
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline AndyArrow

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  • Posts: 1,196
Re: My Esophagus
« Reply #23 on: April 03, 2008, 01:32:18 AM »
Thanks northern,

I've been on both Protonix & Prevacid.  Domperidone isn't prescirbed in the US so I'm on Metoclopramide.  At various times I've also been on Prochlorperazine.  I would ask your doc about getting an endoscopy.  I really didn't have the normal symptoms.  No heartburn or anything like that and my esophagus isn't pretty.  I'm glad to hear you don't have trouble getting things down ... the feeling of food getting stuck or trouble swallowing (dysphagia) means you probably have a stricture.  An endoscopy is usually done under sedation and you don't feel anything afterwards so I think it would be worth having it checked out.  Good luck!

Hugs
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline BT65

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Re: My Esophagus
« Reply #24 on: April 03, 2008, 07:37:56 AM »
I'll try not to make you shiver any more, Betty   
AA

Well, if you are in the mood to make someone shiver, just make sure it's the good kind of shivers. ;)
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: My Esophagus
« Reply #25 on: April 05, 2008, 04:25:09 PM »
I'll be sure to keep that in mind oh Betty with the beautiful cuff.  I won't be having anything more done to my esophagus until the 14th so you should be shiver free for at least a little while.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline Patrick

  • Member
  • Posts: 86
  • Where the determination is, the way can be found.
Re: My Esophagus
« Reply #26 on: April 06, 2008, 03:56:22 AM »
Hi Andy.  I've read this thread with great interest because I believe I have a similar problem to yours, only not nearly as severe.  I was diagnosed several years back with what I believe is called Schotsky's Ring - basically a narrowing of my esophageus near my stomach.  This condition was never really a problem until I contracted HIV and began taking medication.  I found out pretty darn quick that Kaletra pills won't go down well and I almost had the pills get stuck on several occasions (this after lubing them with glycerine and then swallowing them with a milkshake).

I had to get a prescription for the pediatric Kaletra pills and those seem to work ok.  I'm considering a switch from Kaletra to Reyataz/Norvir but I honestly don't think I'll be able to do it.  The Norvir pill is huge and I don't think I'd be able to get it down consistently.  If I get dialated, I've read that treatment consists of taking antacids after dialation to keep the stomach acid from irritating the esophageus.  Can't take antacids with Reyataz, so I guess I'm stuck with baby-kaletra.

I'm concerned that this condition will restrict my med choices in the future (it already is, actually).  I'm very sorry to hear about your condition, it makes mine pale in comparison.  Also glad to hear you haven't suffered any tearing of the esophageus after so many dialations.

Is surgery to permanently widen the esophageus an option?  How invasive would something like that be? 

In any case, thanks for sharing.  I really hope the self-dialation will help keep your problem manageable for you.
« Last Edit: April 06, 2008, 03:58:12 AM by Patrick »
Seroconversion - late October 07
11/14/07 - CD4 190   VL >750,000
11/14/07 - Started Truvada & Kaletra
12/5/07 - CD4 851     VL 710
2/19/08 - CD4 604     VL Undetectable
5/8/08 -   CD4 829     VL Undetectable
8/12/08 - CD4 915     VL 80 (blip)
11/11/08 - CD4 967    VL Undetectable

Offline AndyArrow

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Re: My Esophagus
« Reply #27 on: April 07, 2008, 12:23:51 AM »
Greetings Patrick,

First depending what med regime you want to stick to you should know that both Kaletra & Norvir come in a liquid form.  Both pretty gross tasting but it's an option.  Since I have a tube I just pour my Norvir in and avoid the mouth & taste buds altogether.  When my esophagus closes I have trouble with Truvada getting stuck ... but I bought a handy dandy pill cutter from Walgreens and just cut it a few times.

I don't take any antacids but I do take a PPI so you would need to see if there is a reaction with that.  There is always the possibility that since you aren't on antacids now that you won't have to go on them.  They may just want you to alter your diet temporarily so stomach acid doesn't bother the area post-dilation.  I've had good luck with both types of dilation (balloon or bougie).

If you stricture isn't too close to the opening where your esophagus meets your stomach a stent is a less invasive option then surgery.  Mine is too close ... they tried a stent and it migrated and eventually fell in my stomach and had to be removed.  Usually with Shatzki's ring it's right at the stomach. 

With surgery they actually remove that part of your esophagus that has the stricture and re-connect it back to your stomach.  It's a pretty involved surgery but if you are a good candidate it's good to have that option.

If you have any other questions I'll answer what I can just post them here or send me a PM.
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline BT65

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Re: My Esophagus
« Reply #28 on: April 07, 2008, 07:40:27 AM »
You had to start this again, didn't you Andy.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline thunter34

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  • Posts: 7,314
  • His name is Carl.
Re: My Esophagus
« Reply #29 on: April 07, 2008, 08:41:45 AM »
I think we should retitle this thread, "Andy Wants To Swallow". 
AIDS isn't for sissies.

Offline sharkdiver

  • Member
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Re: My Esophagus
« Reply #30 on: April 07, 2008, 10:03:20 AM »
Hey Andy

just a cute little story here... One of my little clients who I work with (dysphagia treatment as well as language development) just had his tube removed after 8 years. At the same time I had hernia surgery. When I was treating him the other day, somehow he noticed something under my shirt and lifted it very quickly to look at the scar. He exclaimed "Oh my Goodness, you had a Tummy Tube too!"    this was actually kinda big, because he is autistic and this was the first time he actually demonstrated some empathy towards someone outside his immediate family.    Of course he had to tell everyone in the waiting room that I was just like him, over  and over and over... now all the parents kiddingly ask me how my tummy tube scar is....

Sharkie

Offline AndyArrow

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Re: My Esophagus
« Reply #31 on: April 07, 2008, 08:04:57 PM »
First off:

Sorry Betty

Tim is just a perv!  (I mean that in a good way).

Thanks for the cute story, Sharkie.  That sounds like a pretty amazing break through.  It must have really made him feel like he wasn't so different.  I have a love/hate relationship with my tube.  I won't go into any details since I promised Betty.

My original hope was that someone else would have had a similar experience but I am very grateful that everyone has let me share.

Hugs to all
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline sharkdiver

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Re: My Esophagus
« Reply #32 on: April 07, 2008, 08:14:54 PM »

Thanks for the cute story, Sharkie.  That sounds like a pretty amazing break through.  It must have really made him feel like he wasn't so different.  I have a love/hate relationship with my tube.  I won't go into any details since I promised Betty.

My original hope was that someone else would have had a similar experience but I am very grateful that everyone has let me share.

Hugs to all
AA

you can go into detail all you want, I think it's fascinating to get a grownups perspective...but thats me.  Betty's a big girl although she just might hurl.

just to let you know, I'll keep you in my thoughts. (plus I'll be on the lookout for others)

Big hugs,
Sharkie


Offline thunter34

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Re: My Esophagus
« Reply #33 on: April 07, 2008, 08:49:26 PM »
Sent a PM, babe.  If you wanna vent / share more, post here or just holler out to me. 
AIDS isn't for sissies.

Offline AndyArrow

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Re: My Esophagus
« Reply #34 on: April 07, 2008, 08:59:43 PM »
Yes, most of the sites about peg tubes are geared towards parents caring for a child with a tube.  I'm lucky since I've had very few problems with mine.  I'll go into nice graphic detail after my next procedure on the 14th (Be warned Betty!)

Thanks for thinking about me & you left out Count von Count from Sesame Street in your counts
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline sharkdiver

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Re: My Esophagus
« Reply #35 on: April 07, 2008, 09:18:02 PM »
Yes, most of the sites about peg tubes are geared towards parents caring for a child with a tube.  I'm lucky since I've had very few problems with mine.  I'll go into nice graphic detail after my next procedure on the 14th (Be warned Betty!)

Thanks for thinking about me & you left out Count von Count from Sesame Street in your counts
AA

omg  how could I forget him????!!!!
one...one Tcell.   two...two Tcells...thrreee... thrrreee Tcells.....ah hahahahaha...

Offline AndyArrow

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Re: My Esophagus
« Reply #36 on: April 07, 2008, 10:12:28 PM »
Well, you don't have room to name them all.  Sam Dracula, Count of Transylvania (aka Grandpa Munster) is another one ... but his name doesn't exactly roll off your tongue.
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline BT65

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Re: My Esophagus
« Reply #37 on: April 07, 2008, 10:14:16 PM »
... but his name doesn't exactly roll off your tongue.

And you're probably very skilled at 'rolling' things off your tongue, aren't you.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AndyArrow

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Re: My Esophagus
« Reply #38 on: April 07, 2008, 10:17:28 PM »
I have my moments.
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline AndyArrow

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Re: My Esophagus
« Reply #39 on: April 09, 2008, 05:30:33 PM »
I thought Betty would really appreciate this one ... the rest of you may feel free to enjoy a laugh at my expense too.

Since, I developed an ulcer on my tummy right near my feeding tube they have me cleaning it with a solution and then covering the area with DIAPER RASH OINTMENT!!

So, I'm 37 and still using diaper rash.  I just thought you might enjoy my shame.   :D

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline BT65

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Re: My Esophagus
« Reply #40 on: April 09, 2008, 09:47:22 PM »
I just had to click on this one again, didn't I. ;)

Seriously, good luck Andy.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AndyArrow

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Re: My Esophagus
« Reply #41 on: April 09, 2008, 10:38:43 PM »
I just had to click on this one again, didn't I. ;)

Seriously, good luck Andy.

Thanks Betty ... It's like a car wreck.  You don't want to slow down and look ... but you do anyway.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline AndyArrow

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Re: My Esophagus
« Reply #42 on: April 15, 2008, 06:09:51 PM »
I thought I would post an update after my latest trip to my GI doctor on Monday the 14th.  I consulted with him another GI doctor who is doing his fellowship.  We decided for the time being hold off on self-dilations but keep that option open if things get worse.

It had been two weeks since my previous endoscopy and while my esophagus was starting to close again I could tell it wasn't severe.  The doctors decided to dilate me the traditional way.  This was done under complete sedation.  In addition to this they discussed the possibilty of putting a new stent in.  There are now new methods to help hold the stent in place at the lower end, where it just dangles in my stomach, using either staples or string!

The procedure went very well and I was dilated to 57fr (57 French = approximately 19mm).  Don't ask me where the medical world came up with this French numbering system.  19mm is an excellent sized opening.  Even better news was that a recent minor tear what was bleeding and an ulcer that had been causing me pain were both healing nicely.

They took a biopsy of a polyp in the lower portion of my esophagus but they said it didn't look cancerous.  So, all in all I had some pretty great news and we are going to try and stretch the time in between dilations to 3 weeks.  I won't have to go back until the 5th of May.  They will give another steroid injection at that time. I'll become so butch with all these steroids.  This will be the 3rd injection I've received.  In the meantime, I will be trying to find a GI doctor closer to me who will take my case.  Love the GI people I have now but I'm getting sick of having to drive 3 hours to a university teach hospital.  I should say having to be driven since after the dilation & sedation I'm not allowed to take aspirin/drink alcohol/lift anything heavy or drive for a few days.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline BT65

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Re: My Esophagus
« Reply #43 on: April 15, 2008, 09:03:56 PM »
You have a lot of strength, Andy.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AndyArrow

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Re: My Esophagus
« Reply #44 on: May 07, 2008, 03:03:02 AM »
In case you were wondering (and even if you weren't) I wanted to post an update about what I've been going through. 

I had another appointment on 5 May to have an esophagogastroduodenscopy (EGD).  A fancy way of saying they stick a camera on a long tube down my throat.  My appointment was for 2pm but they were running late and I didn't get back into the procedure room until after 4pm. A lot of the support staff was already going home and didn't realize I was still waiting in my hospital gowns (they have you wear two with the second gown used like a robe so you don't moon the staff) with the IV in place.

Unfortunately, my esophagus was closed too tight for the camera to fit down so they had to pull it back and out.  Then they manually forced my esophagus open enough for the camera to pass through to have a look around.  They took a few more pictures and dilated me a little bit further and then took more pictures.  At this point I have more pictures of my esophagus then I do of my face.  After waiting 3 weeks in between procedures my doctor was able to dilate me up to a 57fr.  This is great since the widest they do is 60fr.

When I finally came to in the recovery room, the doctor told me how happy he was with the results and that I wouldn't have to come back to have another dilation and steroid injection for another 4 weeks.  Unfortunately, I couldn't schedule an appointment since they had all left by the time I woke up.  I was able to call today and schedule an appointment for June 3rd.  This is huge progress since back in Sept/Oct/Nov I was going there every week.  Now, I get to wait 4 whole weeks before having to go through this again.  I was thrilled!

Then, he told me if I was a really good boy (not his exact words) and ate all my food (assuming it would go down and not get stuck) and maintained my weight throughout the summer he would consider removing my feeding tube in the fall.  It sticks out of my stomach about 16" and I have to tape it down to my slightly hairy chest.  This makes it rather difficult to hide the fact that I have a peg tube.  At least in the winter time I can cover it up under layers of clothing.  I can't wait for summer to be over and to get it removed!!

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline rondrond

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Re: My Esophagus
« Reply #45 on: May 07, 2008, 03:41:57 AM »
Good news. I'll be waiting to see more pictures of your face. ;)

I hate late appointments. I always try for early morning to ensure that I have time to make the next appointment without having to 'remember' to call the next day and do it, and to give the RX tie to get any prescriptions ready, athough this last time ordering my Truvada/Virumane he asked if I wanted to pick up or have it mailed....I didn't know they mailed...with gas now at 3.58 gal I said '"Yes"....Now, June 3 is one more dialtion and then @3 more months to removal of feeding tube?
how long have you been working on this?
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline BT65

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Re: My Esophagus
« Reply #46 on: May 07, 2008, 07:23:28 AM »
Andy, what you go through......  Good news on getting the feeding tube removed.  Good luck with your next appointment.  
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AndyArrow

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Re: My Esophagus
« Reply #47 on: May 08, 2008, 02:29:36 AM »
Thanks Betty & Ronnie.  I'm really hoping it stays open the whole four weeks.  That will be a major improvement.

I have no guarantees that the feeding tube will be removed but the fact that he was willing to talk about it after the summer has a big step forward and a big moral booster for me.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

 


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