Managing an Overactive Ileostomy: Seeking Advice

I have had my ileostomy for over fifteen months.
Unfortunately, things have gone from bad to worse.

Every day without fail, around midday, whether I have eaten lunch or not, my bag fills very quickly, first with thick stool, then thinner and finally watery. I also have to set my alarm to empty the bag at night three or four times. I take a lot of medication to slow things down and the doctors have no solution for me. I have had thirteen surgeries in the past four years, the first for esophageal cancer due to reflux, one on my stomach, and one to remove my colon because my small intestine keeps herniating into my chest. They thought removing my colon would solve the problem. It did not.

Does anyone else have this issue?

I feel your pain. 8 years as an ileo myself. It sucks the amount of times you have to empty.

I hate to say this, but it just might be the new normal for us... sadly.

15 months out is early for you.

It might calm down, but depending on what they removed from your small colon will affect output too.

It sounds like you have short bowel syndrome. You should ask your Dr. for clarification.

We have some SBD members. They will agree... lots of output. Difficult to control.

I am on no meds to reduce my flow. Oatmeal raisin cookies have helped, and Metamucil gummies are working well.

...it won't slow down your output...nope.

But it will thicken it.

Are you using a large-sized pouch-bag?

What's the brand?

I get up at night 3 to 5 times. Gives exhaustion a whole new meaning.

Gotta get those naps in too.

It sounded like your doctors took a gamble removing the colon. Were there any issues with it?

Cancer? IBD?

Others will chime in. You're in good hands now. Sit tight.

Thanks so much for your response.

My colon was a “mega colon,” that is very large! No cancer though. I lost 20 pounds and weigh only 80 pounds. I am small-boned and only 5 feet tall, so I don't look that bad, but try as I might, I can't gain weight. Also, I have a small stomach because of the esophageal surgery.
This situation has changed my life. I had to give away all my dresses because I cannot discreetly pull up a dress to check if the bag is filling quickly.

If I do have short bowel syndrome, does anyone else have a “too thin” problem out there?

I have the same issue. Once in a while, I'll get a break and it's not so watery. I've had mine a little over 4 years now and learned certain foods will make you go a lot... anything high water content (cucumbers, pickles, fish) I try to avoid at night. The only thing that helps once in a while, and I don't take it every day, is Immodium or high protein Greek yogurt and oatmeal seems to work sometimes. The best thing to do is just be aware of what you eat and drink so you can figure out what seems to help and what triggers your output more... Everyone is going to be different, unfortunately. I have digestive issues and no gallbladder, so it can be a real pain going as much as I do. Three times a night is a blessing; it's at least 8 to 10 times a day on average, but on a sick day, it can be every hour to 2 hours. But hey, we're still above ground, right!? Best of luck to you.

We are just discussing this right now! I have (allegedly) a descending colostomy. It acts like a high-output Ileostomy and has since it went in back in late June. Tons of watery output, gas — that is not seemingly affected by what I eat or when. I have to get up about 8 times a night every night to let air out, since the filter gets wet and clogged soon after applying the bag. Awful situation, but I have found no remedy. It is now just how I live. 

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

8 times a night? That is not sleeping at all.

Something isn't right there. I go about 3 to 5 depending on what I ate

earlier that day. But that's me...an ileo. Not a colo.

Never saw the word "allegedly" used here when talking about stomas. Do you have some doubt as to it being in the descending colon?

"Allegedly", is probably very accurate.
Normally the descending colon has semi-formed effluent not watery. What you have sounds more like an ascending colostomy rather than a descending colostomy. Generally most surgeons prefer Ileostomies over ascending colostomies.

You may want to try a night drainage bag that is normally useful for high output Ileostomies.

https://products.coloplast.us/coloplast/ostomy-care/assuraalterna-hospital-assortment/assura-2-piece-ileo-night-drainage-bag/

Just ask her on which side she wears the bag, no? Dead giveaway to this allegedly. 🤔

I too have to set an alarm for several times a night to empty my bag. Actually I was just up at 11pm to do just that. I will set my alarm for 3, and then 5 and then when I get up at 6 I will have to empty again. I think that is the nature of an ileostomy. Interrupted sleep. It can be crazy making.

Thank you to all of you who wrote back. Good to know I am not alone.
Sometimes I feel like giving up, especially when I am tired, but love for my family keeps me going.

Grandmother to Isla, of the 13 surgeries if most have been in your abdomen then your abdominal wall has been severely weakened hence the herniation. Most surgeons advise not to repair a hernia unless it has started to give you problems since the chance of a recurrence is high. You mention the midday output but what about the rest of the day? You also mention you are taking lots of medicine to slow down your output, I assume that is to give your small intestine the chance to absorb more nutrients. Since the medicines are not having the desired effect on weight gain you may want to talk to your doctor about reducing them to see if your midday outflow goes away. One step at a time.

Dear Warrior,

Thank you so much for your reply. It is good to know I am not alone! I am sorry you go through this too, however.

They removed my colon because they felt it was pushing my small intestine into my chest multiple times.  However, my small intestine continued  misbehaving, so that was all for nothing.

Well, doctors are just human beings who cannot see into the future and make mistakes when doing their best, just like the rest of us.

Do you mind if I ask your age? I am 74  but previous to my health issues, fit as any  30 something.

life has changed completely for me but hanging in there for the loveof my family.

Best wishes in 2025.

I'd advise ya to view my profile. It's the big picture of me. 

You are too kind to doctors saying they are human. 

Some think they are God.  I have met a few of them. 

You are in good hands here my friend. 

DearTraveler,

The medicines I take do help control output of watery stool. Mornings are okay for me so any shopping , chores, cooking, socializing, going to church etc.  can happen then.

After my long bathroom session at midday, I am exhausted and sleep for about an hour. Getting up at night doesn’t help.

My stomach is smaller because of my surgery for esophageal cancer four years ago so meals cannot be huge. 
Thank you for taking the time to write back.

Hi Warrior,

Please excuse my ignorance in technology stuff but how do I view your profile?

Oh sorry. I just saw this. Just click on my handle or photo should do it..I will know u saw it bc there will be a notification on my end. Chk it out.