TOTAL COLECTOMY PART 35 THREAD 13

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esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 6/14/2010 9:44 PM (GMT -6)   
Hi All, We got locked out of the last thread so I am starting new one for us.

Tracy and all newbie ileostomates and ileostomates to be, I just wrote a dissertation in my best efforts to help Christine. See my (hopefully helpful) hints on the thread called Rosemary that Chris started. I wrote this as I experienced things, but feel free to add helpful hints I may have forgotten.

Marisa,

YES YOU GO GIRL! THAT WAS A GREAT VENT! I SOOOOO AGREE. WHO THE H------ COULD POSSIBLY THINK WE LIKE HAVING ALL THESE ISSUES? IN MY EXPERIENCE OF BEING LOCKED IN THE PSYCH WARD BY A HOSPITAL THAT DIDN'T HAVE A CLUE HOW TO TREAT MY INJURIES (injuries necessitating the ileostomy), I began to think who's nuts me or them?

I sure hope Lizzie can be helped too. I could send her to Lahey where I finally got help. If they figured out all my injuries, they could figure her out I would think. Lahey actually has a specialty listed as "complex reoperative colorectal surgery." ie. they fix other docs screw-ups the best that can be done OR they fix things done correctly that simply had poor outcomes by doing something DIFFERENT! DIFFERENT being the key word here. I really hope someone looks at Lizzie from different angles. That poor girl has soooo much going on. jeeze. Prayers continue.

Well, hope I started this thread right. Rosemary

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 6/15/2010 5:56 AM (GMT -6)   
This prep has been awful...my husband thinks I took too much miralax too soon....16 doses in 32 ounces of gatorade in less than 2 hours....but, I thought we were supposed to drink that stuff fast and furious??? I also took 2 dulcolax pills and dank some of the moveprep....so, it made me throw up...alot of the prep....after I got over that, I just drank water....no more miralax or moviprep....but, I think I still kept enough of the stuff down for it to do its job....I went from yellow poop, back to brown poop, back to yellow, several times...I fell asleep at 12am....then woke up this morning at 6am to have more water poop, First a real cloudy yellow, to now, a lighter yellow....do you guys think I will be clean enough?

Wow, I think I od'ed on laxatives! And I still had to use suppositories, but the water would just shoot right out....that was a nice plus!

I am telling my doctor I need the pills for the prep next week...I can't do this again!! mad

I have a fear of throwing up, emetophobia, and it really freaked me out....but, I lived through it. :-)

snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 6/15/2010 7:33 AM (GMT -6)   
I begged one of my gastro's for the pills - she was super hesitant, but finally gave in. It was bittersweet. They're horse pills that taste like a salt lick!

Glad you made through it :)
Diagnoses: Appendicitis, Terminal Ileitis, Crohn's, Celiac Disease, IBS-C, Chronic Constipation, Colonic Inertia, Rectocele, Anismus
Tests: 2 Colonoscopies, 2 CT scans, Sitzmark Test, Anorectal Manometry, Food Allergies, Thyroidism, Pudental Nerve Study, Defacogram, SMART Pill, Electromyogram, Celiac Panel, Small Bowel Study, Gastric Emptying Study - Solids
Tried: Pentasa, exercise, diet changes, pro-biotics, mineral oil, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran
 
Atlanta, GA


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 6/15/2010 8:47 AM (GMT -6)   
     Tracy...you poor soul.  Hope everything goes well for you today.  I will be thinking about you.  I am doing a LOT better and really having second thoughts about surgery.  Reading Rosemary's post has me frightened.  I have no problem sticking to a low residue diet but concerned about blockages and such.  Since my surgeon is in Philly and I live in south Jersey, I hate the idea of having to schlep over there every time I have any issues.
 
Ulcerative Proctitis since Sept of 1998. Hospitalized for eight days.  Prednisone, Asacol, Rowasa enemas.  Two year remission. Flare..switched from Asacol to Colazal.  Two year remission.  Started 6MP in 2002.  Flared yearly from 2003 to May of 08.  Hospitalized for ten days in May of 08.  Flaring more often since.  Off 6MP. Remicade failed.  Humira failed.   Meds: Colazal, prednisone, Cort & canasa suppositories, Benicar (Blood pressure).  Surgery scheduled for June 28th...maybe sooner if possible.  Still flaring

 


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/15/2010 9:29 AM (GMT -6)   
Christine,

I had to have my ileostomy due to severe adhesions which totally disabled my colon and rectum and for 7 months disabled my small intestine.

My original adhesions came from 7 procedures being performed by 2 money-hungry surgeons who are not in medicine for the normal reason docs are in medicine. They "fixed" internal prolapses I did not have, removed my sigmoid colon when it did not need to be (later bore out on expert witness review of pre-op defecogram scan....my sigmoid colon was not blocking off my rectum creating incomplete rectal emtpying. Wrong diagnosis by resident radiology reviewer not cross checked and co-signed by her teacher lead to 3 colorectal surgeons telling me I needed my sigmoid colon removed. I did not know at the time of course that the scan had been read wrong. Then one of my surgeons I had also raised my bladder when it did not need to be thus over correcting it. Then he resusended my vagina from my back bone when it was not prolapsing, fixed a rectocele I didn't have, and on and on. These guys were into slash and burn surgery, procedures for dollars. I have a huge law suit going on. THey also were just going to let me die. They scarred my colon, rectum, and small bowel shut so I could not poop or eat for 13 months.

I had to see 11 surgeons cross country at 7 medical centers before I could find the one who would do what he could to save my life. THis guy is great, but he had very little to work with. Due to my 2 original surgeons I of course had severely scarred small bowel to begin with and had chronic small bowel obstructions because of it. So this second doc at Lahey got my small intestine out of severely dense adhesions, put in a sheet of Seprafilm adhesion barrier and made me the ileostomy. He saved my life the best that could be done.

Wrap wood, so far and it's going on 3 years, I've not had an adhesion reobstruction. Keep in mind he could not do all this lap as the first surgery had been done open. So that is two open surgeries and my previous hysterectomy (which on review I found out was unneeded too.) I fell into the hands of several money hungry surgeons in my end of the state (Western Mass), This last surgeon at Lahey near Boston did the only thing that could be done to save me. I have had 3 food blockages which any ileostomate can get, but keep in mind I came into the ileostomy surgery with severe damage and adhesions. I am getting a CT scan next week to just see if any narrowings have recurred from adhesions. Even if they have, and if I never reobstruct (reobstruction from adhesions is far more serious than a food blockage) then I just plan to live with the narrowings and eat bland.

So, if you are just going in for a basic lap ileostomy you would not have all these adhesion issues pre-existing. So you would do fine.

You would still have to chew, chew, chew and drink a lot of water, but any ileostomate would. So I hope this puts your mind to ease. You are coming into this through disease. I came into it through iatrogenic injury (that is injury incurred in my first surgery for the internal prolapses I did not have.) THe original surgeons did not list 7 procedures on the consent form. I would not have consented. I also checked them out with the mass med board who covered for them. In reality they had 6 law suits against them at the time. I did not know about skulking around court houses to find law suits on docs. They are now up to 9 suits. I got caught in medical crime. You will not.

So don't let my experience put you off. If not for my ileostomy I would be dead now instead of going on world cruises.

Hope this puts your mind to ease Christine. I did not roll out my whole story as I wanted to keep the focus of my response technical info and keep myself out of it. I should have told you I came into this with severe adhesions which you do not have.

Sincerely, Rosemary

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 6/15/2010 5:21 PM (GMT -6)   
My colonoscopy went great. Apparently the clean out was good enough, but I did over hear my doctor telling one of the assistants how much liquid he had to suck out. EWWW GROSS! But, he said my colon was clear of any tumors, diverticulitis, inflammation, or polyps.

But, he did see a redundant sigmoid colon and an extra long colon. So, he seemed more hopeful today about the surgery actually working and that I may actually have a good chance of having my stoma taken down and being able to poop normally one day.

I will have the ileostomy for a few months, then will have to undergo another defecogram to see if the surgery has worked....praying that it works for me.

Now, my surgery is on Monday. I can't believe it! I do not look forward to the pain after the surgery, and am definitely not looking forward to MAYBE having to have an NG tube. That terrifies me more than the pain from surgery. I also hate waking up from the general anesthesia! I just hate that feeling.....but, hoping all goes well and that I don't suffer from any complications...

As far as the prep I have to do on Sunday....I told my doctor, no more moviprep, that I wouldn't take a sip of that nasty stuff for the rest of my life. He thought it was hysterical, but told me he would order me the osmoprep pills for the prep this time. YAY

evans18
Regular Member


Date Joined Apr 2009
Total Posts : 195
   Posted 6/15/2010 8:05 PM (GMT -6)   
Monday, wow Tracy, that was quick on a surgery date. You will do great. I also threw up a lot with those darn bowel prep drinks. The last one I had to do they made me drink it in the waiting room. Well it was warm and that just made it ten times worse. Then having all these people looking at me as I am gagging with every drink. So, I thought hey, I can go to the bathroom. So I went and took my bottle with me and poured what I had left down the toilet! I just could not do it anymore. I never want to drink those "fruit smoothies" ever again!

Rosemary, it is good to vent now and then. Its just so dang frustrating when the medical professionals do not listen to us. Its just easier for them to say we are nuts and send us on our way and then proceed to go to the bathroom and take a big old crap!! I just wish they could feel our pain for one week.

I went and donated blood today. It was so easy. I just figured I needed to give because I have received many blood transfussions in my life that I needed to be the one to give for a change. I have to do something good every once in a while.
<UL>
* Marisa

* 1999-Appendectomy with Cecopexy

* 2001-Ruptured ovarian cyst

* 2004- Emergency hysterectomy

* Lifetime Chronic Constipation

* 6-1-09 Total open colectomy with illiorectal anastomosis
</UL>

* 3/24/10 Gall bladder removed

* 4/3/10 Feeling great for first time in a very long time!!

Trust in the Lord with all thine heart: and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. Proverbs 3:5-6.


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/15/2010 8:35 PM (GMT -6)   
Hey Tracy,

You did good girl, getting all the right tests (glad I could help on that one :-), then doctor shopping until you found just the right one, you did good! Talk to you before Monday, but thinking good thoughts for you already. Rosemary

Hischildvalda
Regular Member


Date Joined Feb 2010
Total Posts : 176
   Posted 6/16/2010 7:44 AM (GMT -6)   
Tracy - I'm so glad that your surgery will be soon. Monday! Keep close to us until then, hon.

Thanks for starting a new thread Rosemary.

We got back from Cedar Sinai last night. Of course, things couldn't go smoothly . . . why can't I be normal? Woke up Monday morning with a severe headache, dizziness (the worst I've ever had) and nausea. I think it was food poisoning. But had to go through the tests because there is no way I wanted to travel there again.

The anolrectal monometry went well. The doctor who performed the test said all was normal except that I am very sensitive - my urge to go is triggered with much less pressure than usual.
By the time the second test - the methan test - came around I couldn't even sit upright. I spent two hours laying on the floor against the wall. Every 15 minutes I would blow into a bag that hubby had prepared for me. They said the results of that test would take 48 hours to record.
The next day was the gastric emptying test (isotope eggs). By then I was feeling back to normal so it was a breeze. I didn't realize that I would have to lie absolutely still for two hours while they took a movie of the process.
Needless to say, I didn't get copies of the medical tests, etc. because at least two of them had not been completed. That was a big dissappointment. I think that I will enlist the aid of my gp in getting them if I have any trouble.

Sunday night, after we got settled into our room, hubby and I decided to walk down the street to get something to eat. We ended up in the middle of the 2010 gay pride parade of West Hollywood. It was wall to wall people and loud music. But we enjoyed the atmosphere and didn't feel the least bit out of place.
1999 Fibromyalgia and all the fun stuff that goes with it came to live with me.
 


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/16/2010 9:26 AM (GMT -6)   
Hi Val, glad you're getting thru these tests. the parade was a bit of comic relief that must have been welcomed at that point. :-) Rosemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/16/2010 9:32 AM (GMT -6)   
Any word on Lizzie? Rosemary

I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 6/16/2010 11:27 AM (GMT -6)   
Hi All,
 
Word on Lizzie is coming...she is meeting with her surgeon and his team right now, so I'll get an update posted tonight. Keep praying!!!!
 
Love to all,
 
Allie
Life-long GI problems.
- 2004: Motility problems took over my life (I was 18). Tons of doctors later... 
- July 2007: Diagnosed with colonic inertia at the Mayo Clinic
- November 2007: Total colectomy with ileorectal anastomosis; IV lipids, PICC TPN
- Post-op: Better, initially. Motility slowed again 8 months after surgery. I currently have chronic    debilitating pain due to a small intestine dysmotility.
- May 2010: Doctors suspect rectal dysmotility; another manometry scheduled for the 18th; sigmoidoscopy scheduled for the 26th (checking for strictures around the anastomosis).
 
Currently trying to figure out what my physical abilities will allow me to do career-wise. Psalm 73:26 - My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
 
 


evans18
Regular Member


Date Joined Apr 2009
Total Posts : 195
   Posted 6/16/2010 1:41 PM (GMT -6)   
Hey val, thanks for the laugh today about the parade. Just got a mental picture which was quite humorous.
<UL>
* Marisa

* 1999-Appendectomy with Cecopexy

* 2001-Ruptured ovarian cyst

* 2004- Emergency hysterectomy

* Lifetime Chronic Constipation

* 6-1-09 Total open colectomy with illiorectal anastomosis
</UL>

* 3/24/10 Gall bladder removed

* 4/3/10 Feeling great for first time in a very long time!!

Trust in the Lord with all thine heart: and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths. Proverbs 3:5-6.


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 6/16/2010 5:38 PM (GMT -6)   
I spoke to Lizzie through text message. She said she has had a horrible time the past couple of days. She said she had a small bowel series and xray yesterday and everything looked good. So, they advanced her diet. Well, this has caused a very distended belly....she said it looks like she is 6 months pregnant, but her pouch is draining well. She is on pain medicine because she has pain too. So, she is confused...she was waiting on her doctor to come and talk to her....please pray for her. I have no idea what this could be.....

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 6/16/2010 5:43 PM (GMT -6)   
Spoke to Lizzie again and she now has an NG tube. The doctor does not know exactly what the problem is.....

Post Edited (answers4me2) : 6/16/2010 6:35:01 PM (GMT-6)


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/16/2010 6:26 PM (GMT -6)   
Tracy,

What the H---???? The doctor does not know why she has an ng tube?????? AUUUUUGH!

I am GLAD I'm having that CT Enterography test June 23. The radiologist says to go REAL light for early breakfast as I have to drink a LOT of this stuff called Volumen to distend my small bowel then have IV iodine contrast. OH, LORD! But I'm glad I'm having this done because I fill sooooo easily and right now I'm trying to pass a food blockage with grape juice that is only made of scrambled egg and a croissant. I MUST have some adhesion or bowel twist or some issue. No nausea so I can slug that grape juice, Thank God.

I will pray for Lizzie...if her doc does not know why she has an ng tube.....maybe we gotta get her to Lahey if they can figure my latest issues out maybe they could help her too. Rosemary

P.S. CT Enterography is a new way to look at the small bowel. Mainly used for Chrones and Colitis patients but can be used for adhesion detection (that would be me!) so maybe some test Lizzie may need too?

I'd Rather Be Riding
Regular Member


Date Joined Apr 2010
Total Posts : 149
   Posted 6/16/2010 7:20 PM (GMT -6)   

Hi Everyone,

 

Here's the update on Lizzie...sorry for the delay, but it's because they still don't know much :(

 

She was admitted to Cleveland Saturday night. For a couple days, she had very little output, which is very concerning, as she had been dumping so much previously. On Monday, I believe, she started dumping again. Through all of this, she has been in an extreme amount of pain, and has been more and more distended.

 

They did an x-ray a couple nights ago and a barium study yesterday morning. Those both came back normal. While extremely frustrating, the good news is that nothing seems to be wrong from a structural standpoint. She is on fluids around the clock, and is getting potassium and magnesium. It didn't seem to matter what she ate (pudding, Gatorade, yogurt, etc.), the distention and pain only got worse. They just put an NG tube down about an hour and forty-five minutes ago to help relieve the distention, and GI is coming in to check things out.

 

Keep praying everyone!!!!! They're still trying to figure out what is going on. I'll let you know as soon as I know more!

 

Much love,

 

Allie


Life-long GI problems.
- 2004: Motility problems took over my life (I was 18). Tons of doctors later... 
- July 2007: Diagnosed with colonic inertia at the Mayo Clinic
- November 2007: Total colectomy with ileorectal anastomosis; IV lipids, PICC TPN
- Post-op: Better, initially. Motility slowed again 8 months after surgery. I currently have chronic    debilitating pain due to a small intestine dysmotility.
- May 2010: Doctors suspect rectal dysmotility; another manometry scheduled for the 18th; sigmoidoscopy scheduled for the 26th (checking for strictures around the anastomosis).
 
Currently trying to figure out what my physical abilities will allow me to do career-wise. Psalm 73:26 - My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
 
 


esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/16/2010 7:34 PM (GMT -6)   
Hi Alli,

Thanks for the update. (I just misunderstood Tracy's last update and thought the doc didn't know why she had an ng tube; we spoke she clarified that docs were still working on figuring out why Lizzie needs ng tube.) My error. My brain is scrambled thinking about my own test.

Anyway, good news that likely structurally things are OK, but that is soooo bad to feel so horrible. Sounds like they are going to figure it out this time; I pray.

Thanks, Rosemary

Barbeezee
Regular Member


Date Joined May 2010
Total Posts : 50
   Posted 6/16/2010 9:59 PM (GMT -6)   
Hey Tracy,

Monday Monday Monday - good luck! This will be exciting as well as a little scary - but good scary! I will be thinking of you and hope all goes well, and things improve dramatically for you!

My total colectomy is a week from tomorrow, so next thursday. I am still going back and forth in my mind, but I keep reminding myself that this is a good risk to take, because the way I feel from day to day is no way to live.

You scared me a little (ha ha, but no worries) about the NG tube and waking up after the surgery. I need to prepare my mind for what is to come, even if it is uncomfortable and hurts. What exactly is an NG tube? Maybe a silly question, but this is my first surgery ever and I have no idea what is coming. Also, how long do people feel icky afterwards?

Oh, I am glad things are moving along for you. GOOD LUCK TO YOU!!! I am thinking about you!

Bee

ANYONE WHO KNOWS....before the surgery will they suck out any excess fluid? I am really scared that there will still be "stuff" inside after taking the GOLYTLE? There is usually leftovers and excess liquids...I dont want that to be an issue. :S

Hischildvalda
Regular Member


Date Joined Feb 2010
Total Posts : 176
   Posted 6/16/2010 10:00 PM (GMT -6)   
Allie and Tracy - thank both of you for updates regarding Lizzie. Praying for her, bless her heart.
1999 Fibromyalgia and all the fun stuff that goes with it came to live with me.
 


Barbeezee
Regular Member


Date Joined May 2010
Total Posts : 50
   Posted 6/16/2010 10:05 PM (GMT -6)   
snugglesaurus-

What are your personal day to day symptoms? I, too, have been diagnosed with Colinc Inertia (even though they say it is a phenomonon and they could never really tell if someone has that).... I have my total colectomy scheduled for June 24th (next thursday). I am super scared but very very hopeful. I know that I cannot live this way, so for me it is "time" to go forward with the surgery.
I have been in search for an answer through colonics, different diets, fiber&water, colon cleansers, laxatives, herbal teas - you name it....and nothing. I really truly believe that all that stuff over the last 2 years has made my issues worse, andn now I feel like I have no choice other than to go forward.

Bee

Barbeezee
Regular Member


Date Joined May 2010
Total Posts : 50
   Posted 6/16/2010 10:07 PM (GMT -6)   
Snugglesauras,

Oh....and in an earlier post you said "did the Sitz Marker test before and it showed motility" Did you mean to say it DIDNOT show mobility? Did you have markers still in your system or were you able to release them all by the time you had your xray? was it 5 days before you hd your xray?
if you still had markers, where were they - all over or stuck in one spot?

Bee

Barbeezee
Regular Member


Date Joined May 2010
Total Posts : 50
   Posted 6/16/2010 10:13 PM (GMT -6)   
Hi Marisa,

Do you have a Sam's Club or Costco where you live? I get my Miralax in a double pack at Sam's club. They are the large bottles and are about 27 dollars for 2 - so I save ALOT when I go there.

I agree that it feels like cement in your bowels though....and it doesnt move until you take miralax and they it just ets more mushy. I usually takke some before bed and then I can release some in the morning, but it is never all of it...and I have sloshy tummy all day long! So hate it. When I push on my tummy its like a little river in there! yuck!

Also, you said that the laxatives possibly effect your small bowel? You had a Total open colectomy with illiorectal anastomosis...and you are still feeling this way??? I have been on and off laxatives for 2 years, and it has worsen my large for sure. I took all the small bowel exams, and everything checks out good.

Much love,
Barbara

snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 6/17/2010 8:35 AM (GMT -6)   
Barbeeze -

1. gas, pressure - below my belly button, lower back pain (sometimes it goes away with a BM), bloating, etc. I use enemas almost daily and they helps. If I wait more than 3 days it is really bad. Anything oral makes it worse. Sometimes the enemas don't work (I guess it's too far up?).

2. The sitz marker test showed DYSMOTILITY. Sorry for the snafu :) 90% were still there after 5 days. They were scattered throughout. Most where in my transcending and descending colon. There were a few in my ascending colon.

Supposed to call CC today again. Yesterday the assistant said the letter was written but not signed. I'm guessing it will say - continue with biofeedback and talk to me when its over.
Diagnoses: Appendicitis, Terminal Ileitis, Crohn's, Celiac Disease, IBS-C, Chronic Constipation, Colonic Inertia, Rectocele, Anismus
Tests: 2 Colonoscopies, 2 CT scans, Sitzmark Test, Anorectal Manometry, Food Allergies, Thyroidism, Pudental Nerve Study, Defacogram, SMART Pill, Electromyogram, Celiac Panel, Small Bowel Study, Gastric Emptying Study - Solids
Tried: Pentasa, exercise, diet changes, pro-biotics, mineral oil, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran
 
Atlanta, GA


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 6/17/2010 9:36 AM (GMT -6)   
Barbara, an NG tube is a catheter they shove down your nose into your stomach! confused It will suck out your stomach contents if your intestines are asleep. I heard it is very scary to have done while you are awake. I don't want that to happen to me. EWWWW I am going to ask my doctor if he places them while I am asleep...but, I have read the intestines wake up quicker without an NG tube. Then of course, if you get an ileus, you would have to have an NG tube placed while you are awake.

To be honest, I am more scared about having to get an NG tube than anything else. But, I have a throw up phobia, emetophobia, so the thought of throwing up just throws me into a tail spin. rolleyes
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