Diet Causing Ostomy Leaks - Need Advice!

Hello everyone.

First of all, I want to thank everyone who has ever posted on here. You are awesome! I got my ileostomy in September 2001, so you would think I have nothing to learn, but you all have helped me more than you will ever know! Also, I would never have thought having an ostomy could be funny, but I have laughed quite often after reading some posts, and I thank you for that too.

Ok, so here's my problem. I started a diet that requires me to have 6oz of grain for every meal and 12oz of vegetables for lunch and dinner (amongst protein, fruit, and oils). The oatmeal at breakfast doesn't bother me, but the quinoa, brown rice, or sweet potato I have for the other two meals is causing leaks (I wear the 2-piece system). Every morning, I wake up to a broken seal and a leak. I have tried adding extenders, but they don't hold up either.

I really don't want to change this diet because I am losing weight, but I'm also losing my mind. I have to change the bag once a day, sometimes twice.

If anyone has any suggestions (other than eliminating the grains), I'd love to hear them.

Thank you, everyone. Have a great day.

Great that you're losing weight but not so great that you're constantly changing your bag. It sounds like that's an awful lot of fiber. I know certain foods with fiber make my stoma dance like he's at a jam band music festival and the more he moves, the more my seal breaks. It could be the fiber. I only have my small intestines so I don't put a lot of emphasis on fiber anymore - it cleans out a colon but can wreak havoc on what I have left. I'm no doctor so I wouldn't tell you what to do but this has been my experience. Quinoa put me in the hospital with a complete blockage so be very careful. Apparently it continued to expand in my body.

Hi H

Are you absolutely sure it's those three veggies that are causing the problem? Have you tried without them for a week to verify? You could substitute for any other veggies quite easily. If you have lost weight, could it be your appliance set up needs adjusting to compensate for the weight loss? I know the reverse is true. Eliminating all sugar permanently is a good move too.

Hope you solve this soon.

I used to get leaks when wearing a two-piece system, and that completely stopped when I switched to a one-piece. Worth a try? I wear a soft convex Hollister one-piece, and it's been a game changer for me. My output goes from quite firm to very loose and watery, depending on what I eat, time of day etc. I think it was the watery output that was causing the leaks. Good luck and congrats on the weight loss!

Terry

Thank you everyone... I will keep you all posted

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If you want to lose weight, you can eat anything you want, I mean anything, just don't swallow it. Regards IGGIE

The diet sounds great, but it may be the abruptness of the change that is causing problems. If you could maybe back off just a little, and work your way back to it? Also, I have found (in general, everybody is different) that most ostomates do not require quite as much fiber, as it causes the output to be more solid, which can lead to pancaking and leaks. You also might want to hydrate more with that amount of fiber - but not fruit juices, which contain a lot of natural sugars which defeats the rest of the diet. (There's enough sugar in apple juice that parents giving their toddlers juice in their evening bottles to get them to sleep without fussing, give them massive cavities in their baby teeth.)

Good luck with the diet! And I'm sure you will adjust to it and reach your goals!

Ileostomies generally don't need extra fiber. I'd cut back a bit and see what happens. It seems to be all about trial and error with ostomies. After a year, my husband is still afraid to try corn or nuts. And many people on this site seem to have no problem with either.

In my case, when I eat potatoes, sweet or white, I have a lot of output. Potatoes come out in me like thick, pasty output. I empty my pouch as soon as I can feel the output because it pulls down on the appliance connected to my stomach. I also use some tape to help the appliance stay glued in place. Maybe it can help if you try that.

Corn and nuts can cause severe blockages in ileostomies. Upon leaving the hospital, those with "Ileostomies" are instructed regarding foods that should always be eliminated from the diet. After having surgery due to a blockage from scar tissue, I can say that I came close to death. It is not advisable for us ileostomy patients to have a number of foods. Those with colostomies can have the foods we should never have. They have a much larger opening in their ostomies than we do. I hope this clarifies some of the food issues for you. Deb.

G-Day Doe1mama, please, never and I mean never eat nuts or corn. I reckon the ones that say they eat them and have no problem are just lucky. Regards, IGGIE