Why Is the Ileostomy Opening So Small?

Replies
12
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326
Rancher
Aug 31, 2024 12:34 am

New ileostomate here. 2ish months.

Just a curious question here, because I am a little uneducated re: ileostomies.

We have to watch what we eat and chew, chew, chew food that might block us up. Also, blockages (from what I understand) happen mostly at the stoma. Nuts, corn, popcorn, salads are all off the menu for me for now.

Normally, the small intestine is attached to the large intestine, and there aren't any issues with blockages there.

So what is the reason why the surgeons can't simulate/emulate that same transition so us ileostomates can continue to eat the same food?

MsPriss
Aug 31, 2024 1:32 am

I really don't know, but I'd guess because the connection between the small and large intestine can stretch in its natural state, but when it's poked through the skin, it can't stretch in the same way. 

Or maybe the natural movement of the large intestine helps pull/move it along, where without that, it just doesn't move. 

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Beth22
Aug 31, 2024 4:23 am

What doesn't make sense to me is when the small is hooked to the rectum, you can eat whatever you want to. Before I got my ileo, my entire large was removed, and I had my small hooked to the rectum, and I ate whatever... but with an ileo, you can't. That's what I find very odd.

Rancher
Aug 31, 2024 4:32 am

Yeah, it is weird, but there must be a medical reason why they haven't been able to change this over the last 70ish years.

Ben38
Aug 31, 2024 8:10 am

I'm far from an expert. I just have an ileostomy and have had one for over 30 years. I can only speak from my own experience. I've never been one to chew and chew food. In my view, if you have to chew something that much, it's not right for you and is best avoided. As I'm getting older, I do have more problems with food now, but in my case, it's from adhesions, and they often take the blame for blockages. That's why you should always try everything at least 3 times and even then, years later, try again, as our digestive system is always changing. Nuts I can eat as many as I like, problem-free. It's just trial and error. Bin those foods-to-avoid lists and just eat it, go with the flow, and see how it comes out.

 

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🇦🇺 Jo
Aug 31, 2024 10:31 am

I can eat anything and everything I did before I had surgery without any issues. In fact, I eat a wider variety of foods now than before when I had Crohn's—zero appetite with that mofo.

I must add that I've only had the one surgery (pan proctocolectomy—removal of large bowel and rectum 16 years ago), so I don't have the adhesions or strictures that someone may have if they have had several surgeries.

I also don't chew much and don't drink a lot either. Sometimes bits of nuts and veggies like carrots come through the same way they went in (dried fruit sometimes rehydrates!), but transit through into the bag feels no different than usual.

My motto is a little of what you fancy does you good—start off with everything in moderation and see how you go (depending on your medical history, of course).

warrior
Aug 31, 2024 12:07 pm

Morning, Rancher. Good question.

You have to remember exactly what job the small bowel does. I believe we ileos have to trick it into thinking it should act as a large bowel. So, liquid output is the norm, and we need to bulk it up to retain nutrients that would flow right out of us.

I don't think a larger opening is needed since it's liquid coming out.

Some ileos have no trouble passing the no-no list of food. Others do. Yes, chewing thoroughly is the idea. And you have to experiment. That 3-day rule is a good idea for testing food.

Someone else here can better explain it. It's my 8-year experience telling me how it works for me. I don't get blockages or adhesions. Watching what you eat does not mean stopping what you eat.

If I were to guess at the size or inside diameter opening of my stoma, I would say 1/8 of an inch, if that. Watermelon seeds, for example, pass right through it... corn too. But I avoid corn and popcorn because I have a very high stricture in my throat. And chew as I might, they get stuck high in the throat area. I have had this stricture for over 25 years. You just learn it ain't worth choking over some foods like that. And it does remind me when I don't chew enough on other foods.

Oh, I just had another thought. Your rectum is a pretty tight organ down there, yet its output amazes you at times, right? Cause it stretches. I believe the small bowel does the same thing.

Someone will correct me if I am wrong. But not much stretching because it's liquidy.

Beth22
Aug 31, 2024 12:14 pm
Reply to Ben38

I wish I could. How I chew my food is how my food comes out into the bag, and I am a chewer. Then again, my body and system are the opposite of most. I always run thick. And yes, I am a liquid drinker. I have to time my liquids right with food, or my liquid will pass around any food, and all the liquid comes out. Then the thick stuff comes after, which is harder to come out because I lost all the liquid that helps push it out. Lol 😆 I'm complicated. And what they say makes you thick doesn't make me thick, and what they say makes you thin, lol, well, not for me.

warrior
Aug 31, 2024 12:22 pm
Reply to 🇦🇺 Jo

Hey Jo... I'm built the same way like you and feel the same about eating the same foods with the exception of corn and popcorn. I had two surgeries, just removals.

I hear stories of adhesions and blockages with people who have C.D. or U.C. and still have their plumbing. For them, that's a mofo situation keeping the large bowel.

We got lucky to some degree.

IGGIE
Aug 31, 2024 3:20 pm
Reply to Rancher

G-Day Rancher,

MsPriss hit the nail right on the head. Because the stoma comes out of a small hole, it doesn't have the ability to stretch open as it would inside you with no restriction. So a piece of food that would normally just push its way through now hits a restriction. So chew and chew, then chew some more. Regards, IGGIE

Rancher
Aug 31, 2024 4:14 pm
Reply to IGGIE

Yeah, it's too bad they couldn't leave a couple of inches on my large bowel or a prosthesis 3-inch large bowel in order to make room so things wouldn't get bunged up.

I too also noted when my o/p is thick it's slightly smaller than a straw. So good point, Beth22, about timing what I drink. I will give it a try until I get more used to the big red zit on the side of my belly.🤣😂

w30bob
Sep 01, 2024 1:08 am

Hi Ranch,

Ok, let's talk. You said, “Normally the small intestine is attached to the large intestine and there aren't any issues as to blockages there.” Yes, in a normal person with no small or large bowel issues… there are no issues related to blockage. But when you cut the colon off from the small intestine and route the small bowel up and through your abdominal wall, a lot has changed. First, we're assuming none of the small bowel is diseased in any way and is functioning normally. If it's not, then all bets are off. When the small bowel is re-routed through your body, it's no longer in the place nature intended, and there's not a lot of free empty real estate inside your body. That means the new way your bowel is routed could have sharper bends as well as potential kinks in the bowel. You also have to consider that when you start messing with things in the abdominal cavity, the body doesn't like it. So adhesions will form that “grip” the small bowel wherever it rubs against or touches another organ or wall of the cavity, and these adhesions prevent it from moving as it normally does. Think of a snake eating a mouse. That big lump moving through the snake is like food moving through your bowel. If the walls of the bowel (or snake) can't expand because the bowel is stuck to something in a bunch of places, what's in it is going to have a hard time getting through. If the patient has any active disease, i.e., diverticulitis, IBD, Crohn's, any inflammation or stricturing, etc., that's also another reason things won't be normal. Also, consider that many ileostomates have had part of their small bowel removed as well. Rarely does disease activity stop exactly where the small bowel meets the colon… usually both are involved to some extent. Now, normally when you eat, your stomach does a bunch of breaking down the food and your small bowel does the rest. If you don't have all your small bowel, then the food won't be as broken down as it should be when it hits your stoma… hence the “chew, chew, chew” thing. The same goes if there's any disease activity in any of the remaining small bowel, as that will decrease the amount of food that is broken down for digestion.

Blockages don't normally occur at the stoma, as you stated. They typically occur upstream where the problem is, unless the surgeon who made your stoma didn't make the hole in your abdominal wall big enough… but that's pretty rare. So in a perfect world, if you just cut the colon off and routed a healthy small bowel through a hole in your abdomen, and there were no sharp bends or kinks, no adhesions forming, and the skin surrounding your stoma didn't reject the stoma and do something stupid… there shouldn't be any problem with blockages, and you could eat anything you wanted. Of course, what normally wouldn't be digested still won't… but there wouldn't be any restriction on eating.

So let's recap. The reason ileostomates have blockages (obstructions) is primarily because:

They eat foods high in insoluble fiber, like nuts, fruit, corn (popcorn), raw vegetables, etc., that either only get partially digested… or not at all. That fiber can clump together and not be able to pass through a tight bend or any part of the bowel that is adhered to something in your body.

There's inflammation of the bowel.

There's scar tissue. Could be from previous surgeries or where diseased bowel healed.

Adhesions form or the bowel narrows for any reason. This is typical in things like Crohn's disease or UC.

The bowel twists because of the way it's routed, or has to make a sharp turn… or worse, kinks.

So I hope that explains it. As for your last question… surgeons can't reproduce the same transition because it doesn't occur in the same place. And to get to the new place, the bowel has to be routed in a way it wasn't naturally routed. And when you screw with Mother Nature… you ultimately lose.

Let me know if that explains things for ya, and if not, we'll dig deeper. And welcome aboard, ileostomate!

;O)

Rancher
Sep 01, 2024 2:10 pm
Reply to w30bob

Thanks for your knowledge and explanation. I didn't know any of that. I didn't realize that the small bowels stick to other parts of your innards. Makes sense.

This probably attributes to some ileostomates being able to eat high-fiber foods and foods that are harder to digest, while others can't.

It is kind of amazing when we are growing in the womb how things go together so well, and for the most part, healthy babies are born, grow (including bowels), and usually there aren't problems.

Doctors fix us up as best they can, which in itself is amazing, but it's still not as good as Mother Nature.