OK WHAT'S THE DEAL W/THIS OSTOMY NURSE?!

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praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/18/2008 2:39 PM (GMT -6)   
Ok, as u guys know I finally conceded to the surgery and got the date. They gave me the card of the ostomy nurse and told me to make an appt. With her as soon as I got my date. So i got my date last week and I called the number and she has an answering service (or mayb its just one woman, b/c I keep getting her on the phone).
The woman told me she would have the nurse call me back and she hasn't. Today my mother called to ask when we could "expect" a return call so that we didn't have to keep calling, and the lady is stating that she doesn't know.
My surgery is a week away and this is making me extremely nervous. Is this the way these things usually go? What happens if I don't get to see the nurse b4 my surgery? I don't know what to do. Any info or suggestions would b appreciated.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/18/2008 2:50 PM (GMT -6)   
I didn' t see a nurse before my surgery cuz it was emergency. However, my surgeon was the one that actually placed the stoma and did a great job of it. I did see an ET after surgery. I'm sure if I had been given a date in advance for surgery that seeing the ET first would have been the better way to go. I know the ET here in our town (we only have one) is so swamped that she is really hard to get a return call from.

I hope that you receive a call from her soon. I'm sure that she will do her best to see you prior to surgery. Does her appt with you determine whether or not the surgeon will proceed?
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


candyland
Regular Member


Date Joined Nov 2007
Total Posts : 98
   Posted 1/18/2008 2:58 PM (GMT -6)   
Hi Praying,
You should definitely try to get in to see the ET nurse before your surgery. You might call your surgeon's office and have them call the department where the ET nurses work and have them put some pressure on them. It really helps to have them go over everything with you, look at their samples and answer your questions. Mine also "marked" me for the doctor. My doctor insisted that it be done at least 2 weeks before my surgery, but I think my appt. ended up being the week before. The nurse I saw was really great. She was young and made me feel comfortable and answered all my questions and told me that she wouldn't be my nurse after surgery, but she would come visit me - and she did! I went to her with a list of questions and also kept a pad and pen beside me in bed after surgery to jot down questions for the nurses and doctors during my stay in the hospital. My list got long!! People who have had emergency colectomies often wish they had the opportunity to talk to an ET nurse beforehand. Good luck!!! -Laura

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 1/18/2008 3:10 PM (GMT -6)   
Praying...I did not meet my ostomy nurse until the day before my surgery when she came in my hospital room to mark my body. The nurse will mark the place that you want the stoma. This is something you should think about. Do you want it high on your abdomen or lower? Mine is located 2 inches below my naval and over to the right (I think they are always on the right side of the body). You can see the photo of my bag location at photobucket.com.


I wouldn't stress too bad about her not calling you back right away. She is probably one woman and very, very busy. However, I would be persistant...remember the sqeaky wheel gets the grease so make sure you sqeak A LOT!
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot


badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 1/18/2008 3:19 PM (GMT -6)   
Mine is on the left. It's a colostomy, and illeos are on the right. I think it's a good idea to see the ET nurse JUST before surgery (a day or two). Mine marked me with a 'tattoo, but it faded since it was a week before. I kept on marking it after I took baths. The ET nurse really talked to me about what I wear, had me move around and then marked it. While I think mine is extremely high, I do like to wear low rise pants and my stoma is higher than the pants waistband so it doesn't rub. When I wear a mini bag, I don't even have to tuck it in my pants! (there's a picture of my bag dressed up for Halloween on photo bucket)

Sometimes, as in my case, there aren't many patients for the ET nurse to see so mine only works a couple of times a week. She's wonderful, but not always available every time I call. I haven't had a hard time getting in there though... give it a wee bit of time.... and most of all best wishes. We are all here in different phases of acceptance so we know what you are going through.
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/18/2008 3:20 PM (GMT -6)   
U guys are right. I didn't think 2 ask if my surgery will proceed without her. I guess if I can see her 1day b4 that would still b better than not seeing her at all. I just got the jitters. I'm afraid if my surgery gets postponed I'll end up not getting it. Ok guess I'll wait 4 the call. Thanks u guys for easing my mind once again.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


sfgiantsjo
Regular Member


Date Joined Feb 2007
Total Posts : 420
   Posted 1/18/2008 3:21 PM (GMT -6)   
I didn't see an ET nurse before my surgery, either. But it was an emergency, soooo, that's how it goes. If you can get into see her, it would be great, but, worse comes to worse, they'll place the stoma right before your surgery. Don't completely stress over it and lose any sleep. Get into a "happy place" during these last few days before your surgery! You're doing a good thing for yourself! :)
UC diagnosed: December, 1999
Asacol: 1600 MG daily
Immuran: 150 MG daily
Prednisone: 4 MG daily (Woo-Hooo! Getting lower and lower!)
Remicade: Infusion every 7 weeks
Probiotics 4 billion CFU Daily
Glutamine 500 mg 2x Daily
 
OFF all meds!! Liver failure, and emergency surgery as soon as liver levels return to normal. ACK!
 
Surgery August 24, 2007. Home now!


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5690
   Posted 1/18/2008 3:27 PM (GMT -6)   
If it makes you feel any better I saw the ET nurse at the hospital the day before my surgery. That was SOP for my hospital. I cannot imagine that they would not have an ET nurse on staff at the hospital. The ET nurse is the one who determines where the stoma is placed, not the surgeon. I woudln't worry about it.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/19/2008 10:59 PM (GMT -6)   
i saw mine just a few days before my surgery also, i think i saw her on Thurs or Fri and my surgery was Tues. i had to have all my blood work and stuff done, so it was all done at the same time. she really is busy, i am sure, they have a lot to do. Like Amey said, just keep calling back

Dutches
New Member


Date Joined Jan 2008
Total Posts : 17
   Posted 1/19/2008 11:27 PM (GMT -6)   
praying4healing said...
Ok, as u guys know I finally conceded to the surgery and got the date. They gave me the card of the ostomy nurse and told me to make an appt. With her as soon as I got my date. So i got my date last week and I called the number and she has an answering service (or mayb its just one woman, b/c I keep getting her on the phone).
The woman told me she would have the nurse call me back and she hasn't. Today my mother called to ask when we could "expect" a return call so that we didn't have to keep calling, and the lady is stating that she doesn't know.
My surgery is a week away and this is making me extremely nervous. Is this the way these things usually go? What happens if I don't get to see the nurse b4 my surgery? I don't know what to do. Any info or suggestions would b appreciated.


That's not the way things go. A nurse has to see you and mark the spot where your stoma will be. They show you a video and explain what is going to happen to you. You need to see the nurse. It is very important. Don't know which hospital you are going to but a nurse will see you for sure.

Tammysuebee
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/21/2008 11:05 PM (GMT -6)   
I had a total illeostomy in 1995.  It was an emergency surgery and I had no idea what was going to happen.  I had a nurse who had had a illeostomy come in and talk to me afterwards.  Unfortunately she had had a very bad experience and scared me half to death, because mine is permanent and I was still just trying to deal with the trauma of the surgery.
 
It has been has been almost 13 years and I have had very little trouble with mine.  Get the doctor to explain the surgery.  They will help you in the hospital with put on your appliances and monitoring the flow.  Depending on your insurance you should be able to get in home nursing by and ostomy nurse for about2-4 weeks.  She will help you become comfortable with the process.  Expect pain after the surgery, but once you heal, you will have your life back. And I don't know about you but that surgery was the greatest gift I ever got.
 
If you want you can check out ostomy supplies online or go thru your insurance to find out what company they use to get the supplies.  Get them to send you a catalog.. or check out Hollister or Convatec..these are two of the larger suppliers... check out the flanges, bags, creams, rings etc,
Just so you will feel a little more in control.  Sometimes it takes time to find the right product for you skin....sometime you have accidents....sometimes you have to burp the tupperware.
 
A word of advice, if you have a problem with the smell(usually only when you empty) DO NOT USE MOUTHWASH or VANILLA EXTRACT to combat the problem (advice from the nurse)  I could not use mint toothpaste or eat cookies for months nono .  Use the products the companies provide.
I was 26 and scared to death, and it was my last chance....I'm still here and still kicking....and you will be too.  Just go in thinking everything is going to be fine, the better the attitute the better the result. yeah    I would love to talk to you, if you need a friend...I live in Florida. write back and I will have your posting sent to my e-mail Tam

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/22/2008 7:53 PM (GMT -6)   
Tammy, thanks so much! I actually just met with the ostomy nurse today. she marked me and everything. It made everything seem so real, i broke down and started crying. was totally embarassed. She told me about the products, but i'm not sure how to find out exactly what my insurance covers or not. she did say due to my loop ileostomy that i will have to use a two piece, and because i'm so "tiny" (i hate when they say that to me) that my bag will be about 10 inches long. I am open to any and all advice. Right now my main concerns are the hospital stay, and surgical complications. For some reason when i'm in the hospital for too long i get really really depressed, and i just don't want to go thru that on top of adjusting to this major change in my body. It's a hard reality, but i'm trying to accept it.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/23/2008 9:25 AM (GMT -6)   

Ash,

This explanation of a loop ileostomy was posted by Shaz back on 1/5 --  I'm copying it for you.  I have no clue why a 2 pc appliance is suggested.

If your ileostomy is only going to be temporary, they tend to give you a loop ileo. To visualise this, imagine your colon is a piece of hose. Now imagine that piece of hose is almost cut in two but not quite so it's still joined together at some point. The is the part of the bowel they use for a stoma so that in actual fact there's two openings. One the working stoma (which comes from the digestive system) and the other stoma (called a mucous fistula) which joins on to the rectum and anus. At first you will find, there is usually a rod underneath the 'loop' of bowel between the two stomas, to keep it from gravitating back into your body while it heals.When the time comes for the ileostomy to be reversed, all the surgeon has to do is rejoin the two bits together properly and 'voila' you have a complete bowel again. See http://www.ostomates.org/ostomies.html#temp

 for pictures to explain it

Another type of temporary ileostomy is called a Hartmann's pouch. With this they completely cut the colon in two and leave the non-working end inside you (or some bring it out elsewhere to make a separate stoma) and when the time comes the two ends are just joined up again.

In an end ileostomy, they just cut the rest of the intestine off completely so you only have one stoma which leads to the digestive system. They may or may not leave you with a rectal stump in this surgery. Obviously, since the rest of the colon is gone, this type of ileostomy is considered permanent.

Clear as mud? :)

Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/23/2008 10:30 AM (GMT -6)   
Yea they said I'm gonna have a rubber catheter around my stoma for 10 days in order 2 keep my colon from slipping back in? Still a little confusing, but she guaranteed me I will only have 1 stoma.
Also, I don't kno either y it requires a two piece, she just said "because ur having a loop ileostomy ul b using a 2 piece appliance) and then she went on 2 show me how it worked (The one with the clip n e way).
I guess she placed it n a pretty ok spot. I came3 home and tried on a few more pair of jeans just 2 see...I guess only time will tell :o/.

O! But what happens if u use a little mouthwash n the bag? Iv read about other people doing it. Does it compromise the bag or stoma n some way?
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


Tammysuebee
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/23/2008 10:44 AM (GMT -6)   

I was in the hospital for 31 days.  I felt horrible and to be honest not very social.  My family visited almost everyday anyway.  Sometimes just to watch me sleep.  The phone became a great way of keeping me connected.  If you have things that you like to do, like puzzles, reading, crafts(something kind of small) bring it with you.  Take a few of your favorite pictures, bring your favorite slipper or pillow or throw blanket.  Anything that makes you feel more at home.  A lot will depend on how long your stay is.  Just so you know I am also bipolar...which made for a great time...up and down....but the point is you get through it.  This to shall pass.  As far as complications.  I was supposed to have a loop too, but they found cancer cells and made it permanent.....I'm closed in the back and have a stoma by my belly button....I don't have cancer...I'm not sick all the time...I have my life back....I just held on to my faith and friends and family,  I trusted my doctor...I can't say everything is back to normal...I still have problems...one is that ostomies can make you more prone to kidney stone because of lack of water absorbsion...first 3 yrs sucked got them every winter...my own fault didn't drink enough in the winter not as thirsty...still have to drink.  The first time that sucker came off on its own.....what a mess...I cried for20 mins...then I got up, cleaned up and put on a new appliance and I was fine.

It's not going to be perfect...there will be time you hate it...there will be times you bless your good fortune.  Just remember, it will be a part of you like any other part.  It just may require a little more effort.  But the benefits can far out that.  I wish you the best, and remember If you are going to worry, don't pray...If your going to pray, don't worry. yeah


Tammysuebee
New Member


Date Joined Jan 2008
Total Posts : 6
   Posted 1/23/2008 10:54 AM (GMT -6)   

Have you ever smelt mint poop?  trust me not something you need to experience.  It won't hurt the bag but it will make you gag.  I spray some oust over the toilet before I empty my bag so the smell is not so bad.  best to flush while emptying(just takes some practice)  also carry wet wipes of some type in case there is no water available and a collapsible cup in case there is but its  not in the bathroom with you.  This will make more sense to you as time goes on.  Just trust me that you don't want to put anything in that bag that smells like something you put in your mouth.......GROSS nono ....LOL 

UR Friend

Tammy

P.S.  Hard as it seems, having a sense of humor about it helps tongue










Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 1/23/2008 7:17 PM (GMT -6)   
Praying,

I just wanted to wish you well before your surgery. Do you have a laptop to take to the hospital? Remember, walk a lot. I was very sore but I walked 25 minutes every morning and night... so that was 50 minutes a day. My husband brought me my MP3 player and I grabbed my IV pole, catheter tube, and wires and I walked very slowly immediately after my surgery. I am certain that the walking is what helped me to recover so quickly.

Best wishes to you...
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot

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