Colostomy vs. Ileostomy: Comparing Lifestyle Adjustments

Replies
28
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494
Ostobychoice
Jun 16, 2024 10:40 pm

I have read many posts from people with colostomies, and you guys have the best one out of the two. I have an ileostomy, and it is active a few minutes after I eat and pretty much anytime I'm active. Actually, when I empty at night just before bed, I wake up with a full bag. I've read that some of you with colostomy bags do not have output for hours at a time. I wish the small intestines worked that way. Colostomy mates have it made. You do not have to empty 5, 6, 7 times a day. Geesh, I work part-time and I empty right before I walk out the door for my 4-hour shift. I do not eat anything the whole time, and by the time I get home, I am carrying a full bag of liquid. Where is this coming from? I'm so sick of it!

One question, I'm 10 months out from surgery, does the stoma slow down after so many weeks post-op? Any suggestions? I'm thinking of marshmallows, but I'm thinking all that will do is make the output thicker. I want to know how to stop output altogether for a few hours while I work.

Thanks, guys!

Hisbiscus
Jun 17, 2024 12:03 am

I think we all go through the same. Watch your soda pop, coffee, tea, etc. intake. These will make liquid. Drink water or G2 instead. Wait for 1 hour after eating to drink.

Foods to thicken up: I'm posting a pic here. I hope this helps, but I had gone through this as well.

 

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Ostobychoice
Jun 17, 2024 12:35 am
Reply to Hisbiscus

Thanks! I will try applesauce; I happen to love that stuff. I made homemade veggie soup last week and have been eating peanut butter and jelly sandwiches with it. I haven't noticed a change, so I guess peanut butter is a no for me. Cheese is good, and I love pizza and French onion soup... I'll see if it helps. Thanks again.

warrior
Jun 17, 2024 3:14 am

Liquid output is common for us ileostomates.

You have to eat, drink, and know what works for you.

Bulking up is definitely better than liquid output. It takes time for everything to calm down.

Be patient.

Maried
Jun 17, 2024 4:38 am

A person with a colostomy has to deal with very smelly odors and noises that sound like a whoopie cushion. When I had my surgery and they opened the bag for the first time, the smell nearly knocked me out! Neither procedure is ideal, but it is far better than pooping in your pants, having many bowel movements in a day, or dying. Hang in there. After a while, it will be just like peeing a lot.

 
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AlexT
Jun 17, 2024 5:41 am
Reply to Maried

Huh? Mine hardly stinks, and I don't really have much gas. When I do have gas, it's usually about once a day unless I eat beans; then, rules are out the window. 😁

Hisbiscus
Jun 17, 2024 12:17 pm
Reply to Ostobychoice

It's most likely the jelly and not the peanut butter. Jelly has a lot of sugar. Anything with high sugar content can also make us watery. Watch the grams of sugar on labels. I tend to like the bulk that bananas, potatoes, and rice give me. Peanut butter thickens mine into a paste, although I will use it. You really have to watch what you're eating with the sugars, caffeine, etc. So, if you're eating a lot of sugary snacks, that will do it. It's a learning curve. I've had mine since about 2016. A temporary one at first, and now the end ileostomy, and it takes learning what gives you watery, thick, gas, and smelly output to control things. There is much information online about that.

I tend to eat stuff that causes the above only when I'm home. The onion soup might make you watery as well, along with gas and odor from the onion.

 

 

ron in mich
Jun 17, 2024 12:48 pm

Hi Osto, welcome to the site. After I've had my PBJ on toast in the morning, I take one 2mg generic Imodium/loperamide, and that slows down and thickens mine a little so I can do stuff during the day. Sometimes, I will take a second one if I'm going out during the evening.

Mysterious Mose
Jun 17, 2024 5:22 pm

Like Ron, I take 2mg of loperamide every day. Except, I take mine a couple of hours before bed. I usually empty my bag one time during the night, partly because I am unable to give up my nighttime snacks except on Monday night before my Tuesday morning bag change. I normally have a large fruit smoothie for breakfast with a mini-croissant to help soak up the water. Then, I am good until early afternoon. My output is the proverbial thickness of oatmeal. If I watch how much I eat and I am not overly active, I empty my bag maybe 5 times a day. This can increase to 7-8 times if I have things to do or places to go. Then, I will not let the bag fill too much. On the downside of my 70s, I still get self-conscious about that front bulge that is the bane of any ostomate. :-)

Daniel

TerryLT
Jun 17, 2024 8:15 pm

Hi Ostobychoice, You've received lots of good advice on how to thicken and slow down your output. You may think you want to stop it altogether for hours at a time, but trust me, you don't. With only your small bowel to accommodate everything you eat, it needs to move through you within a short period of time to make room for the next round of food you consume. If it didn't, you would be in severe pain. The only way to go hours without any output is to stop eating, an option if you really want to. Use some of the tricks of the trade, and you'll get there.

Terry

warrior
Jun 18, 2024 2:02 am

Despite what could have been all of our untimely deaths,

I think we are all pretty damn lucky in general to be here, on this site, alive, with one or two bags for whatever reason.

And so willing to talk and share among complete strangers.

"There are no real strangers, just people we haven't met."

Yep. Damn lucky folks.

Beachboy
Jun 18, 2024 5:12 am
Reply to Mysterious Mose

Sometimes as I'm walking to the beach, I look at that bulge and say "screw it." Other days I'm thinking "What the hell?" I look lopsided. My surgeon cut out a lot of tissue on one side of my abdomen. So I've gained weight only on the other side. Thank goodness I'm an old coot... and no one pays me any mind... except my cat.

Beachboy
Jun 18, 2024 5:14 am

I sometimes go two days with zero output. Used to freak me out. But... it's just the way my colostomy rolls...

Ostobychoice
Jun 18, 2024 6:15 pm

Thanks to everyone who replied. I have plenty to consider.

Thanks again. You guys are the best!

w30bob
Jun 20, 2024 1:42 am

Hi Osto,

I don't know if there's any “best” ostomy to have, as each type has its issues, but as a general rule of thumb, the less you interfere with mother nature, the better off your life will be. In that vein, the more bowel you have, the better off you are. I think it's really that simple. Besides the type of ostomy you have, intestinal valving that you lost or still have makes a whole lot of difference. Understanding how our digestive system works takes all the mystery out of why ostomates of all types experience what they do. And it can also let you ‘game the system' a bit to get more quality of life from this whole mess.

The liquid you're referring to in your full bag when you get home is mostly bile. Your digestive system works continuously, whether you eat or not. And since your bile can no longer be recycled (if that part of your small bowel is missing), then the only place it can go is in your bag. You make between a liter and a liter and a half of bile every day, even more if you eat a lot of fats. Add that to whatever you eat or drink, and output is inevitable.

Without your colon, you can't absorb water the way normal folks can either. Guess where that ends up? Once you understand the digestive process, all this is normal and to be expected. Does your stoma slow down? Not really. For the first couple of months, your body has to readjust to the new you, and bowel adaptation takes place slowly but indefinitely. What determines the “speed” of your ostomy is primarily what you eat and what you drink, and how much and how often. As others have posted, there are some foods that help some people slow digestion, but be forewarned that any advice you're given here is what works for someone else. Everyone is different, and you'll need to experiment and find out what works (and doesn't) for you.

You're going to have a tough time stopping your output for a few hours, for the reasons I stated above: your bile flows continuously and you have no way to recycle it, the small bowel doesn't absorb water well, and you can't stop motility, just slow it down a bit. Once you figure out how your body absorbs fats, carbs, etc., you can tailor your diet to minimize output. But stop it? Probably not.

;O)

K-Calgary
Jun 20, 2024 7:10 pm

Great explanations from everyone. I've had an ileostomy since 2008 for IBD that turned out to be Crohn's disease. It's only after my most recent surgery in September 2023 to remove my non-functional ileoanal pouch (Barbie butt surgery) that I learned that I have a high output ileostomy. To me, it's all I've known! It means a lot of toilet visits, including having to get up almost every night, probably 6-8 times per day.

The only thing I want to add is that eating or drinking anything makes ileostomies function. My stoma is quiet only in the morning, before I eat or drink anything other than a tiny sip with medications. However, it is quite risky to limit liquid intake, at least in my case, because I am constantly fighting dehydration, which causes other problems, like dizziness, fatigue, and generally feeling awful. Some people with ileostomies don't have as much output as others.

Hope this is helpful!

TerryLT
Jun 20, 2024 8:41 pm
Reply to Ostobychoice

K-Calgary makes a good point that bears repeating. You don't want to limit your liquid intake. As Bob pointed out, without your colon, you don't absorb water normally, so you need to keep up your liquids, or risk dehydration.

Terry

Mysterious Mose
Jun 20, 2024 9:18 pm
Reply to TerryLT

The first time I had an issue with dehydration, I started to panic because I did not recognize it for what it was. My ileostomy was about 5 months old, and I was sitting on the couch. Whenever I tried standing up, I got light-headed and started to fall to my left. Oh no! A stroke? While I was debating an ambulance call while my wife was at work, I remembered I hadn't had any water in the previous few hours. Once I got to the tap and sipped some water for a while, the world righted itself, and I was as happy as an ileostomate could be. 🌊😁

tnmontan9721
Jun 23, 2024 5:34 pm
Reply to w30bob

I have a crazy question. I've seen so many questions and answers where individuals first had a colostomy and then ended up getting an ileostomy. What are the reasons this happens? The change from one to the other? I know, like I said, a really crazy question!

GrannyRocks
Jun 23, 2024 5:40 pm

Hi w30bob. I don't know why it happens, but the colostomy has to do with the large intestine and direct bowel, so only feces comes out. An ostomy is connected to the small intestines, which processes the food you eat within six hours, and all food comes right out of the stoma (thus the intense diet) constantly. I don't know how they could change from one to the other without resecting your colostomy first. Unless you have both?

GrannyRocks
Jun 23, 2024 5:44 pm
Reply to K-Calgary

K-Calgary. I have high output as well and wonder how I am still alive sometimes, lol, with everything I eat coming back out. I find I can eat more and not feel bloated! I am finding that emptying each time I pee, if the bag is 1/4-1/3 full, I empty it, giving me more time between emptying. Though drinking a lot of water makes me go all the time, lol!

GrannyRocks
Jun 23, 2024 5:48 pm
Reply to Beachboy

Colostomy is not the same as an ostomy. I've had both. A colostomy is emptied once in the morning. An ostomy is emptied every time I pee. A colostomy involves the large intestine. An ostomy involves the small intestine.

Mysterious Mose
Jun 23, 2024 6:26 pm
Reply to GrannyRocks

Actually, a colostomy is an ostomy, but an ostomy is not always a colostomy. There are three main types of ostomies: a colostomy, which uses some part of the colon; an ileostomy that bypasses the colon or, like me, there is no colon; and a urostomy, which is for urine.

Daniel

Mysterious Mose
Jun 23, 2024 6:30 pm
Reply to tnmontan9721

A couple of reasons to have an ileostomy after having a colostomy may be 1) to take stress off the colon entirely in order for it to heal, or 2) it is decided that the colon is too diseased to save. There are many others, I am sure.

And there are no crazy questions here, only questions. :-)

Daniel

TerryLT
Jun 23, 2024 8:59 pm
Reply to GrannyRocks

What you are calling an ostomy is an ileostomy. Colostomies and ileostomies are both ostomies. Ostomy is just a general term and could be colo, ileo, or even a urostomy for urine.

Terry

P.S. I've had both too, ileostomy and colostomy.

Travelqueen
Jun 24, 2024 1:35 am

I had the same problem. Loperamide 2mg saved my life. I take it twice a day if I'm going on vacation, a plane, or anywhere I need my stool to slow down and thicken up for a few hours.

warrior
Jun 24, 2024 2:56 am
Reply to Mysterious Mose

Well said and accurate. Part of the confusion is the terminology used.

We need a universal way of saying things, explaining things. Generic terms can be confusing.

Ostomy is generic to me. Like you said, Daniel. There are 3 types. ICU.

Ileo, colo, uro. = ICU.

(Neat, yet effective way to remember this)

Beachboy
Jun 27, 2024 11:50 am

Thinking back about my first month after surgery, I didn't know what type of ostomy I had. It took a while to figure out mine was a colostomy. Then I learned there are different types: Ascending, Transverse, Descending. Reading my surgical report: I'm pretty sure my little jewel is located on my descending colon. Also learned 12+ inches of that colon was removed. I'm still pondering, "Is that a lot?"

Then I read about funny-sounding names: Ken Butt, Barbie Butt, which I soon learned means... no butt. Yikes. Would my happy little rectal stump eventually trouble me, requiring more surgery?

Soon enough, I experienced the joys of mucus. Again, I was confused. How could anything exit my moribund butt?

And then, of course, the bane of ostomates worldwide: Peristomal hernia. I remember staring at my lump of dangling intestine and thinking, "Why does it look bigger?"

Yes, an ostomy. The gift that keeps giving.

Mysterious Mose
Jun 27, 2024 10:44 pm
Reply to Beachboy

Heh. A fellow ileostomate, who is part of the monthly meeting I attend, has a photo of his removed colon. There are three nurses holding it. Quite impressive when all five feet are stretched out! I'm actually envious of the photo. Would have needed more nurses since mine came out in bits and pieces. :-)