The dreaded "stoma" and do I have any say

Sharronoffaith

hey folks,

i am at the point where surgery is friday, and the colostomy will be permanent.

i met with the stoma nurse, and i was pretty much dismissed with the exact phrase of "forget about the stoma."

i am finally coming to peace with the idea of this being permanent, but I don't want a protruding "spout."

stoma nurse went over the bag systems, and did her little speech, but do patients normally have no say in the stoma.

i want one that is not too raised.

ok, hopefully the experts will help me out here...to spout or not to spout, , that is the question.

btw...mine would be colostomy and not illeostomy...

 

thanks in advance,

sharron

vtspa6

My husband's is a colostomy

My husband's is a colostomy and is 'raised out' a little bit.  You can't tell because the appliance covers everything.  The main thing is to change it every 3 to 4 days and clean the area well when changing.  I also will shave the hair around his stoma so the flange will stick well to the skin.  Don't use any cleansers with oils ect. because nothing will stick to the skin.  I have gotten really good at this and proud myself that he has not had any issues with rashes ect around his stoma.  He has had a few accidents where the bag has leaked or the flange's tape has come loose.  You need to keep an extra with you at all times if this happens.  Good luck with this!

 

Lovekitties

Hi Sharon

I have had my colostomy for almost 6 years.

I recommend this book  http://www.amazon.com/Ostomy-Book-Comfortably-Colostomies-Ileostomies/dp/1933503130/ref=sr_1_1?ie=UTF8&qid=1456285713&sr=8-1&keywords=the+ostomy+book . 

You may be able to get it at your local library or local bookstore.  It was loaned to me by my ostomy nurse.

Usually the patient does not have any say in the final result.  The surgeon, who if he has done this many times before, will know what it should look like.  It needs to protrude from the belly somewhat to keep the output from just laying on the skin.  A flat stoma will cause skin and appliance attachment issues.  The main thing is to not have it on the belt line.  My stoma nurse marked the most advantageous spot for clothing wear and muscle attachment.

A stoma is not a gross thing to look at.  Mine will shrink back some with the cold and also when I shower.  Unless you are having diareha it does not continuously produce output.  It is more like 'normal folks' but without a 'hold it' switch.

Contact the major manufacturers of ostomy supplies and ask them for their sample kit.  They are glad to help you.  Also determine if there is a local source to purchase supplies, or if you need to get them mail order.  There are a number of companies that provide that service.  You should also check with your insurance company to find out what amount of appliances they will pay for per month.  Your surgeon may need to work with them to insure you have enough, especially in the beginning.  I usually change mine every other day ( I have the 2 peice drainable).  I take it off, shower and then put on the fresh one.  This helps to make sure the area stays clean.

Any specific questions, just ask away.  I am not the only one here with an ostomy, and there is much which can be shared as you need the info.

Best wishes,

Marie who loves kitties

JanJan63

I have an illeostomy, not a

I have an illeostomy, not a colostomy. I don't know if there is an option as far as the size of the stoma. Mine's quite small, about the size of half a small strawberry. It moves around on it's own a bit and will get bigger and smaller and stick out a bit more or go flat. It's a bit of an odd thing to have. I hated it at first but now I'm considering not having it reversed. I've had it for just over two years now. I'd love to help with any questions but I don't know what's the difference between mine and a colostomy.

Jan

John23

OMG

Hey Sharron?

Good grief gal....

Re:
" but I don't want a protruding "spout."

Oh, but yes you do! I strongly suggest you visit the UOAA (https://www.uoaa.org/forum/viewforum.php?f=2&sid=8ff3da8da4e9805ede0a1e3bb2344587) website and gather some info.

The so called "spout" is the amount of protrusion the intestine sticks out above level of skin. It is important to be well above the skin to enable the waste to get into the pouch without affecting the skin surface (peristomal area).

The intestine is pulled out from the body/skin and turned inside-out. The inside of the intestine is impervious to the damages of waste; the outside of the intestine and skin area is not, and the reason for turning inside-out.

To prevent problems of skin erosion and damage to the peristomal area, having a decent amount of stomal protrusion is neccessary! That protrusion is called a "spout".

You'll do just fine. Just make sure they mark the spot for the stoma ahead of surgery to conform with your normal wear apparel.

And ask about irrigation, since it's a great way to avoid having to empty the appliance as often as it would be otherwise. We Ileostomates do not have that choice or advantage!

Be well.

John

 

coloCan

John23 said:

OMG

Hey Sharron?

Good grief gal....

Re:
" but I don't want a protruding "spout."

Oh, but yes you do! I strongly suggest you visit the UOAA (https://www.uoaa.org/forum/viewforum.php?f=2&sid=8ff3da8da4e9805ede0a1e3bb2344587) website and gather some info.

The so called "spout" is the amount of protrusion the intestine sticks out above level of skin. It is important to be well above the skin to enable the waste to get into the pouch without affecting the skin surface (peristomal area).

The intestine is pulled out from the body/skin and turned inside-out. The inside of the intestine is impervious to the damages of waste; the outside of the intestine and skin area is not, and the reason for turning inside-out.

To prevent problems of skin erosion and damage to the peristomal area, having a decent amount of stomal protrusion is neccessary! That protrusion is called a "spout".

You'll do just fine. Just make sure they mark the spot for the stoma ahead of surgery to conform with your normal wear apparel.

And ask about irrigation, since it's a great way to avoid having to empty the appliance as often as it would be otherwise. We Ileostomates do not have that choice or advantage!

Be well.

John

 

Have bag,will live...............................

Never asked where stoma should/would be as primary request to surgeon was to keep me alive and remove the cancer remaining after chemo/rad........

Sharronoffaith

John23 said:

OMG

Hey Sharron?

Good grief gal....

Re:
" but I don't want a protruding "spout."

Oh, but yes you do! I strongly suggest you visit the UOAA (https://www.uoaa.org/forum/viewforum.php?f=2&sid=8ff3da8da4e9805ede0a1e3bb2344587) website and gather some info.

The so called "spout" is the amount of protrusion the intestine sticks out above level of skin. It is important to be well above the skin to enable the waste to get into the pouch without affecting the skin surface (peristomal area).

The intestine is pulled out from the body/skin and turned inside-out. The inside of the intestine is impervious to the damages of waste; the outside of the intestine and skin area is not, and the reason for turning inside-out.

To prevent problems of skin erosion and damage to the peristomal area, having a decent amount of stomal protrusion is neccessary! That protrusion is called a "spout".

You'll do just fine. Just make sure they mark the spot for the stoma ahead of surgery to conform with your normal wear apparel.

And ask about irrigation, since it's a great way to avoid having to empty the appliance as often as it would be otherwise. We Ileostomates do not have that choice or advantage!

Be well.

John

 

I'm a little tea pot short and stout
here is my handle....screw the £\<]%^} spout.....lol

Yeah John, I get that for sure...but, illeostomy and colostomy have a few main differences. Correct me if I'm wrong,,,,I won't cry...lol...I'm saving my tears up.

As most folks know (but I will note in case some don't) the illeostomy is made along the small bowel, while the colostomy is the large bowel

Major differences:

Stool moves along through the small bowel (intestines) and into the large bowel. Along the way, in the small intentines etc...water and nutrients are absorbed from the stool

With illeostomy, the stool is much more liquid, while in the colostomy the stool begins to resemble good ole poo.

So yes, I could absolutely see that the illeostomy spout, and they normally look a little more raised, as the stool is much waterier.

If all goes well, my colostomy will be along the sigmoid colon (waste by the will be just about normal to what we had before).

So, mine should probably be larger in circumference, but should be ok with it being less raised.

Maybe I shouldn't care...and yes, the cancer will be gone; and that is the primary goal certainly.

But, if I have a CHOICE, I would like to not have it too raised. It is going to be practically poo by the time it gets there.

I have been told by the stoma nurse that I would be better off with the discardable bags. I have two choices in that, where I can use the two piece (and avoid constantly tearing the bags off my skin) or I can use the one piece.

The reason for the disposablle bags, she said, would be that by the time the stool is in the bag, it would be like squeezing it out. So, while illeostomy is more like emptying/draining the bag, you folks have a lighter consistancy.

Then the doctor says....the cancer may be gone and that could be scar tissue....sigh...that would be excellent news, but also ya gotta thing well gosh I just lost my butt for some scar tissue.

But, I am not out of the woods yet either way. My tumor was quite deep, and low in the rectum. I have some lung nodules that we are watching.

But, I am grateful. I think I mostly wanted to know if I have input/choice. I have an easy "ick" factor, and we all see things in our own little way....

So, I was just looking to see what others have. And, like most folks wrote, they have their own little style these things depending on what's going on with our bodies.

I just want to accept mine....maybe I am expecting it to be like when you see a little newborn baby...and you go "oh,,isn't she cute"

I'm shooting for cute. It has to be a part of me for the rest of my life, and yes, location location, is already set...below the beltline.

My stoma's name is already picked out, it will be a girl, and her name is "booboo".

I love her already!

Thanks,
Sharron

lp1964

Sharronoffaith said:

I'm a little tea pot short and stout
here is my handle....screw the £\<]%^} spout.....lol

Yeah John, I get that for sure...but, illeostomy and colostomy have a few main differences. Correct me if I'm wrong,,,,I won't cry...lol...I'm saving my tears up.

As most folks know (but I will note in case some don't) the illeostomy is made along the small bowel, while the colostomy is the large bowel

Major differences:

Stool moves along through the small bowel (intestines) and into the large bowel. Along the way, in the small intentines etc...water and nutrients are absorbed from the stool

With illeostomy, the stool is much more liquid, while in the colostomy the stool begins to resemble good ole poo.

So yes, I could absolutely see that the illeostomy spout, and they normally look a little more raised, as the stool is much waterier.

If all goes well, my colostomy will be along the sigmoid colon (waste by the will be just about normal to what we had before).

So, mine should probably be larger in circumference, but should be ok with it being less raised.

Maybe I shouldn't care...and yes, the cancer will be gone; and that is the primary goal certainly.

But, if I have a CHOICE, I would like to not have it too raised. It is going to be practically poo by the time it gets there.

I have been told by the stoma nurse that I would be better off with the discardable bags. I have two choices in that, where I can use the two piece (and avoid constantly tearing the bags off my skin) or I can use the one piece.

The reason for the disposablle bags, she said, would be that by the time the stool is in the bag, it would be like squeezing it out. So, while illeostomy is more like emptying/draining the bag, you folks have a lighter consistancy.

Then the doctor says....the cancer may be gone and that could be scar tissue....sigh...that would be excellent news, but also ya gotta thing well gosh I just lost my butt for some scar tissue.

But, I am not out of the woods yet either way. My tumor was quite deep, and low in the rectum. I have some lung nodules that we are watching.

But, I am grateful. I think I mostly wanted to know if I have input/choice. I have an easy "ick" factor, and we all see things in our own little way....

So, I was just looking to see what others have. And, like most folks wrote, they have their own little style these things depending on what's going on with our bodies.

I just want to accept mine....maybe I am expecting it to be like when you see a little newborn baby...and you go "oh,,isn't she cute"

I'm shooting for cute. It has to be a part of me for the rest of my life, and yes, location location, is already set...below the beltline.

My stoma's name is already picked out, it will be a girl, and her name is "booboo".

I love her already!

Thanks,
Sharron</p>

It's not an easy adjustment,

but you will be alright. It took me over a year to figure things out, but I had very high expectations and major challenges as far as work and personal life style. 

Now I fill comfortable and confident even with the stoma. I'm always the most stylish nan in the street. Still have some scares, accidents and embarrassing moments, but I grew a thick skin on my face which I needed anyway. Life always directs us to become a more complete/perfect person, but we ignore the signs and red flags. So life gives us bigger challenges until we get it. 

Just keep asking questions, try new things and get advise until you find your own way.

Laz

 

John23

Sharronoffaith said:

I'm a little tea pot short and stout
here is my handle....screw the £\<]%^} spout.....lol

Yeah John, I get that for sure...but, illeostomy and colostomy have a few main differences. Correct me if I'm wrong,,,,I won't cry...lol...I'm saving my tears up.

As most folks know (but I will note in case some don't) the illeostomy is made along the small bowel, while the colostomy is the large bowel

Major differences:

Stool moves along through the small bowel (intestines) and into the large bowel. Along the way, in the small intentines etc...water and nutrients are absorbed from the stool

With illeostomy, the stool is much more liquid, while in the colostomy the stool begins to resemble good ole poo.

So yes, I could absolutely see that the illeostomy spout, and they normally look a little more raised, as the stool is much waterier.

If all goes well, my colostomy will be along the sigmoid colon (waste by the will be just about normal to what we had before).

So, mine should probably be larger in circumference, but should be ok with it being less raised.

Maybe I shouldn't care...and yes, the cancer will be gone; and that is the primary goal certainly.

But, if I have a CHOICE, I would like to not have it too raised. It is going to be practically poo by the time it gets there.

I have been told by the stoma nurse that I would be better off with the discardable bags. I have two choices in that, where I can use the two piece (and avoid constantly tearing the bags off my skin) or I can use the one piece.

The reason for the disposablle bags, she said, would be that by the time the stool is in the bag, it would be like squeezing it out. So, while illeostomy is more like emptying/draining the bag, you folks have a lighter consistancy.

Then the doctor says....the cancer may be gone and that could be scar tissue....sigh...that would be excellent news, but also ya gotta thing well gosh I just lost my butt for some scar tissue.

But, I am not out of the woods yet either way. My tumor was quite deep, and low in the rectum. I have some lung nodules that we are watching.

But, I am grateful. I think I mostly wanted to know if I have input/choice. I have an easy "ick" factor, and we all see things in our own little way....

So, I was just looking to see what others have. And, like most folks wrote, they have their own little style these things depending on what's going on with our bodies.

I just want to accept mine....maybe I am expecting it to be like when you see a little newborn baby...and you go "oh,,isn't she cute"

I'm shooting for cute. It has to be a part of me for the rest of my life, and yes, location location, is already set...below the beltline.

My stoma's name is already picked out, it will be a girl, and her name is "booboo".

I love her already!

Thanks,
Sharron</p>

Spittin' spouts....

Spittin' spouts....

Ha... Sharron gal.... Not a "spout" like a tea kettle, silly.... The protrusion for any ostomy, Ileo or colo, should be around 3/4". If there is no serious protrusion of the stoma, when the delightful thing shrinks down, it will be like a dimple. The waste, however icky and thick, will have a tendency to go under the wafer instead of inside the pouch. Oh..... and it won't always be thick. You will have your liquid moments.

I keep trying to refer new ostomates to the UOAA website's forum. You will find the best info there from those that have "been there;done that". I have had three different Ileostomy locations since 2006. Yes, an ileo is more of a problem than a colostomy, but the basics remain the same. Those with a colostomy have an advantage of using an irrigation procedure that allows going without an appliance for periods of time. You will get the info at the UOAA website.

https://www.uoaa.org/forum/index.php

And yes, two-piece systems are great. The one piece unit is good if you're concerned with keeping a lower profile, since there isn't any bulk from the connection device. But you will find that having the ability to adjust the direction of the pouch easily after applying it, to be a very good thing. And the pouch can be changed without having to go through the slow process of remounting a whole new pouching system. (I have some ostomy info in my "blog" here, btw).

Each time the appliance (one piece, or wafer) is removed, it takes a bit of surface skin with it. If you have a sore on the peristomal area, it will be very difficult to have it heal if you're ripping the healing skin off every time you change the pouch. With a two piece, you can leave the wafer on for extended periods of time. I use the Coloplast Assura series with the Extended time wafer. I have gotten up to a month of use from one wafer, but usually change it every other week, or if/when it appears to be breaking free from the skin. There is no need to change it "every three days" as some well meaning people (and nurses) suggest. They make extended wear systems to help control skin problems. The longer it's on and not being torn off, the happier the skin is.

So don't think of a spout like it's a teapot, think of it more like a spout on an old coffee percolator.... short, but necessary to keep the coffee from dribbling down the side of the pot. Not that you have a pot, unnerstan...  But things do dribble. You do not want any dribbling to go under the wafer and ruin the adhesive qualities. Trust me.

It's not going to be all icky and thick, and cleaning the @$%^&amp; off your leg and out of your shoe in a Walmart or McDonald's bathroom, is not the way you will want to learn what's best.

Really.

Be well and sane.

John

coloCan

John23 said:

Spittin' spouts....

Spittin' spouts....

Ha... Sharron gal.... Not a "spout" like a tea kettle, silly.... The protrusion for any ostomy, Ileo or colo, should be around 3/4". If there is no serious protrusion of the stoma, when the delightful thing shrinks down, it will be like a dimple. The waste, however icky and thick, will have a tendency to go under the wafer instead of inside the pouch. Oh..... and it won't always be thick. You will have your liquid moments.

I keep trying to refer new ostomates to the UOAA website's forum. You will find the best info there from those that have "been there;done that". I have had three different Ileostomy locations since 2006. Yes, an ileo is more of a problem than a colostomy, but the basics remain the same. Those with a colostomy have an advantage of using an irrigation procedure that allows going without an appliance for periods of time. You will get the info at the UOAA website.

https://www.uoaa.org/forum/index.php

And yes, two-piece systems are great. The one piece unit is good if you're concerned with keeping a lower profile, since there isn't any bulk from the connection device. But you will find that having the ability to adjust the direction of the pouch easily after applying it, to be a very good thing. And the pouch can be changed without having to go through the slow process of remounting a whole new pouching system. (I have some ostomy info in my "blog" here, btw).

Each time the appliance (one piece, or wafer) is removed, it takes a bit of surface skin with it. If you have a sore on the peristomal area, it will be very difficult to have it heal if you're ripping the healing skin off every time you change the pouch. With a two piece, you can leave the wafer on for extended periods of time. I use the Coloplast Assura series with the Extended time wafer. I have gotten up to a month of use from one wafer, but usually change it every other week, or if/when it appears to be breaking free from the skin. There is no need to change it "every three days" as some well meaning people (and nurses) suggest. They make extended wear systems to help control skin problems. The longer it's on and not being torn off, the happier the skin is.

So don't think of a spout like it's a teapot, think of it more like a spout on an old coffee percolator.... short, but necessary to keep the coffee from dribbling down the side of the pot. Not that you have a pot, unnerstan...  But things do dribble. You do not want any dribbling to go under the wafer and ruin the adhesive qualities. Trust me.

It's not going to be all icky and thick, and cleaning the @$%^&amp; off your leg and out of your shoe in a Walmart or McDonald's bathroom, is not the way you will want to learn what's best.

Really.

Be well and sane.

John

Using an adhesive remover to help when replacing wafer

(the part that sticks to body-if usinga 2 piece, as i do) saves on wear and tear of skin. Had  used Uni-Solve by Smith & Nephew; now use Sensi Care product from Convatec. Even if wafer were to last a week, thats 52 times you're removing it per year;520 times per decade. Think of removing a bandage  from your belly (might help nonostamates  visualize a small part of what we go thru.....)If where you live gets hot and muggy in summer and you're active and sweat, carry extra supplies, in  addition to tose you normally carry-ALWAYS have bag(s)),wafer,clip,etc withyou as you never know....)