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Why do stomas vary so much in size/amount they stick out?

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Posted 10/28/2015 2:28 AM (GMT 0)
No surgery yet but possibly heading there so I've been reading this board often. I've noticed that stomas vary: some stick out a lot and some don't. Some are almost flat. Some seem to point down. Why is that? Seems like a long stoma would work best.

Does it have to do with how much intestine is available? Individual differences in anatomy? Height? How much control does the surgeon have over the stoma?

Do patients need to tell the surgeon to make a long stoma?

I could end up with a permanent ileostomy and if I do, I worry that the stoma will be too short and hard to manage.

Thanks.
Posted 10/28/2015 4:36 AM (GMT 0)
Hi
My first one was skin level and pointed up, nothing but trouble. 2 months later I had a revision to pull it out some and turn it out straight. It's now about a 1/4 inch or so out, and I wish it was longer. Just my opinion.
Posted 10/28/2015 6:04 AM (GMT 0)
Ridgerunner, thanks for responding. How come they made your first one so flat?
Posted 10/28/2015 6:46 AM (GMT 0)
My end was short and my loop is short. I don't think I had a ton to spare - the surgeon led me to think that, but I always wondered why some are longer and some shorter. Pointing down is bad news.

My end was short but I loved it. It was the textbook perfect stoma. it was little and perfectly round, only protruded a bit. Never leaked with convex. I liked it. The nurse at the hospital said it's the stoma you want if you're going to have a stoma. I felt bad getting rid of it because it was kind of cute - as far as stomas go. Longer is probably functionally better - it's nice if you have something that you don't visually mind and it's functional. That's how i felt about my end stoma. Can't say how I would have felt about a longer one, never experienced it, but to be honest, I would have probably loved that it was functional and I could wear flat wafers. There are pluses and minuses to everything.
Posted 10/28/2015 1:20 PM (GMT 0)
Does it have to do with how much intestine is available? Individual differences in anatomy? Height? How much control does the surgeon have over the stoma?

No to the first one. If you had that little small bowel left, you'd have short gut syndrome and would know all about it. I'm not sure about the remaining three. The surgeon certainly does have some control over it, but perhaps not totally. When I went to get measured for my stoma, I asked the stoma nurse if the surgeon knew the importance of creating a stoma which sticks out far enough - she said yes. And now I write this, I'm not sure why I just never asked the surgeon directly. But anyway, I didn't, so I had to take my stoma nurse's word for it that the surgeon knew what she was doing.

Well, to cut a long story short, mine did stick out far enough. But it also had a tendency to curl upwards. My surgeon told me that was the way the bowel had settled and it was normal. Luckily it didn't seem to make much difference - I imagine pointing downwards is worse than pointing upwards. But if my surgeon was right, though, then it seems like the surgeon doesn't have any control over which direction the stoma ends up pointing.

I would definitely ask your surgeon for a long stoma and not leave it to chance. It should be sticking out by 1" to 1.5". Some people have an even longer stoma than that, but I'm not sure I'd want it too long.
Posted 10/28/2015 5:43 PM (GMT 0)
Hi
I didn't know enough at the time (2012) to ask bout length. The WOC nurse went through marking a location on my skin before surgery, but that was it. I don't know what a good length would be for an Ileo, I just know I wish mine was 3/4 or an inch long.
With all that said though, I don't really have many problems with leakage using a convex (thank God)
Posted 10/28/2015 5:49 PM (GMT 0)
Hi again..
Just adding,, The original surgeon that made the short and poorly aimed stoma pretty much told me to learn to live with it and kicked me to the curb. A series of events lead me to another hospital and a surgeon that was a God send. She made what was unbearable, doable. Choose your surgeon wisely...
Posted 10/29/2015 3:47 AM (GMT 0)
The skills that a surgeon brings in creating a stoma are somewhat synonymous to the skills of an artist. A blending of both the surgeon's technical skills and creative/artistic skills.

A well-crafted stoma can make a world of difference in living one's best life with an ostomy. A stoma that is too short or that is positioned in a tissue fold at one's waistline can make pouching difficult.

I appreciate each day the surgeon that created my stoma. He did an outstanding job. The little bud of intestine that is my stoma has been trouble-free. It protrudes about 1/2 " - less than the 1" length that seems to be the standard for an ileostomy, but ideal for me as I am petite in body statue/size.

- Karen -
Posted 10/29/2015 12:24 PM (GMT 0)
Me too Karen! Thank my surgeon daily for an awesome, well functioning stoma. I remember asking him to please not make it too long... he replied "I've made stomas too short, but never too long.". Mine is about 1 1/4", slight bend downwards, round, positioned just right on my abdomen- literally textbook perfect. The output goes right into the bag, no pancaking, no build up of yuk at the top of the bag... It sounds long, but there is no telltale bump or bulge under clothes.  Apparently the WOCN at my hospital gives my surgeon heck is she thinks he's made a bad one! Emergency surgeries, cases like that. I really think the surgeons knowledge of an ileo, experience, & capabilities are what make stoma sizes differ so much.
Posted 10/29/2015 1:11 PM (GMT 0)
Mine is also about 1 1/4 inch. I never thought much about size presurgery partly bc I knew it was temporary but if I ever have to go for permanent I want the same surgeon! Mine is like Eva's and almost makes a perfect little spout into the bag. When I first woke up from surgery I thought it was long but my Ostomy nurse said I had a really good stoma and she was right. I can pretty much wear any flat wafer and pouch no leaking issues. I feel very thankful!

Unfortunately anatomy did alter my location. My Ostomy nurse had me marked a little higher which would have worked better with my pants but according to the surgeon I have a large liver so my stoma had to lower on my belly.
Posted 11/1/2015 8:47 PM (GMT 0)
As I understand it, the surgeon doesn't have full control over how the stoma heals, especially if the intestine is very inflamed at the time of surgery. My first stoma was great (in retrospect), but then when I had it moved to the other side during an emergency surgery for a hernia that was strangling my intestine, that one healed much shorter and pointed up -- pretty confident that she didn't intentionally make it point up and had the skills to avoid that. I've asked about having it revised, and she's not sure she'll be able to make it longer, due to it being on the other side. I don't have short bowel, but that doesn't mean that there's enough there to move it across my belly.... hard to know how much of what's there is mobile to that extent....

Although, my stoma has gotten a lot easier to manage by using a wafer w/deeper convexity and also losing some weight.... so a shorter stoma is not ideal, but it can work.

I think the bottom line is to get an experienced, skilled surgeon who cares about making a good stoma, and if at all possible, avoid emergency surgery....
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