Pouch Filling and Abdominal Cramping - Seeking Advice

I am a member here, but don't do much posting. However, I do have a question I would like to ask.

I am wondering if many have a similar problem as I do. Not so much after breakfast, but after lunch and dinner, I cannot leave the house for about an hour. My pouch just keeps on filling.

I do not have short bowel syndrome, as far as I know. Never been diagnosed. I had an internal pouch for a year, then made into a regular ileostomy. The pouch was made from my small bowel, so about 1-2 ft at most was used. My understanding is if you have at least 20 ft, which I do, it is not a problem.

I also get up 2-3 times a night to empty the pouch.

I am interested to know if anyone deals with the same issue. Also wondering if anyone has a problem with lower abdominal cramping. I work with a dietitian, so have my bases covered on diet and various testing.

Thank you all in advance for any input you may have.

Elaine

Elaine, I have a colostomy, so I don't have the same problem. There are quite a few on here that have an ileostomy. It may take a little time for them to answer because of time zones and working. Stay tuned. Best wishes and stay safe.

Elaine,

I have had my ileostomy for 41 years. I am sorry to say that regardless of what you eat (although some foods are worse than others), after you have a full meal, you are going to empty within a short time after eating. It is basically a reflex (gastro-ileal reflex). How much you empty depends on how much is in your intestine at the time. Remember, you no longer have a large intestine to consolidate material and no longer have an anal sphincter to consciously control when emptying takes place. Over the years, I have learned to avoid eating before attending an event such as the theater or opera or even sporting events in order to avoid having to find a place to empty. It is unfortunate, but I have learned to live with it.

Xerxes

Elaine, regardless of the meal, I fill up right after I eat. I also have to get up at least three times during the night. I think this is the way it is for most of us with an ileostomy. I do not have the abdominal cramping that you have though. I hope that gets better for you.

Thank you, Morning Glory, for your reply.

Words of Encouragement from Ostomy Advocates I Hollister

My docs really want me to keep output to 1100 cc or so, but I occasionally will have 2 liter days. Diets will differ for each person, but when James (my ileostomy) starts running I must eat a bowl of oatmeal, and the following meal will include rice noodles. Stops him up good, with up to 13 hours of quiet time. Marshmallows can be a quick fix when out of the house. Still, everything flows well.

Tangle,

Is your output watery or more paste-like? Usually, you can time the output from when you begin to eat. If your ileostomy is new, it will take time for your body to adjust. As pgcto says, noodles, crackers, and marshmallows can thicken the output and slow it down some.

Any time you eat something, it activates your entire digestive system. So you may still have waste inside you that didn't come out at the time that you start eating. You can try and experiment too. Try waiting until midday and just have a big lunch. Be sure to chew your food very, very well. Like the consistency of peanut butter well. Food that isn't chewed up well can cause an obstruction, cramping, and watery output.

I've had an ileostomy for almost 25 years. And it usually takes about 5-6 hours before I start seeing output from the time I eat. Just remember, chew your food up very well and stay hydrated.

Bain

Hi Bain,

Thanks for your reply. I have not had my ileostomy as long as you. I have had it about 8 years.

What do you do so you don't have output for 5 hours? My output is usually oatmeal-like or thick pudding, except after eating, then it is thinner. It will get thicker as time goes on, usually. It would be nice to go a couple hours after eating before the flood gates open.

Thanks for your input.

Elaine

Elaine,

You're welcome. I don't do anything special to not have output for 5 hours. All of my large intestine was removed during surgery, minus the rectal stump. I was told by the surgeon that eventually, your body adjusts to not having a large intestine which means that your small intestine will attempt to do the job the large intestine was doing like absorbing fluids, nutrients and what not. And eventually, my output would slow down.

Also, I'm a beer drinker and that goes through your system pretty quick. It doesn't matter who you are...lol.

But even if my pouch fills up in a couple of hours, I just go to the nearest restroom in public. Most of us can empty our pouch standing up. Check out this Ostomy Food Reference Chart. The last column shows foods that thicken your output and could possibly slow it down. Again, you will have to experiment to try and time your output just to make sure that any leftover output isn't just sitting in your gut until it is triggered by eating something. Good luck!

Bain