Ileostomy Questions: Consistency, Pain, and Weight Loss

I have questions about ileostomy done Jan. 2013. Within a half hour after eating, it starts going through to my bag. Does this happen normally? Sometimes the waste in the bag is as thin as water, and sometimes it is the consistency of thick gravy. It never gets anywhere near solid. When I get up in the morning, I have pain in the area of the stomach. It seems to come and go, and some days are pain-free. I lost weight through this. I was a big lady, 5'6" and weighed 170, but now I am between 127 and 130 and can't seem to gain. I don't eat anything on the list of not to eat and drink lots of water. Then just 8 weeks ago, I had cancer surgery but didn't need any chemo or radiation as the surgeon said she got it all. Still, my weight has stayed the same. Any help would be appreciated!!!!

Hi Swede, this may go against the grain, but are you drinking too much water and not other fluids like juices or milk? I sip on water throughout the day but drink other liquids also.

The ideal consistency is like oatmeal or porridge, depending on where you are from. Most stomas work soon after eating, which is why I tend to eat no later than six pm. I don't have a list of foods to avoid; it's trial and error, and if it doesn't suit one day, it's not to say it won't in a few months. If my ileostomy is too liquid, I will try and thicken it with something starchy like mashed potato or some potato chips. Sometimes, it's an excuse for a treat like marshmallows or some gummy bears or a banana. As for weight loss, it's unfortunate I never had that concern, but perhaps a protein shake would help. The pain could be wind. The thing is, I found that because it's all new, it is hard to know what is normal and what isn't. - Trish

I am glad to know that it is normal for the food to leave so fast after eating. Sometimes I think I don't want to eat because of that. I was in and out of the hospital so much in the last year that I am fighting a bed sore right at my tailbone, and since you sit on it, it is proving to be very hard to heal and stays sore. It has to get better, I think. There has been so much in a year. I am waiting for my "golden" years. I love peanut butter, so I am going to try that as a thickener for my bag. Thanks.

I have an ileostomy (permanent) -- I don't worry about the consistency anymore -- coffee goes right to the bag - so does wine -- I also have other parts missing so I cannot eat any dried fruit etc, but peanut butter and marshmallow fluff sandwiches are great!

I like popcorn - but it has to be totally air popped and prepackaged stuff as it has a lot of chemicals - saw another warning yesterday on that --

I eat a lot of ice cream but some cannot tolerate it -- I love milk and bananas too -- I cannot have whipped anything without real issues with the gas -- I guess I should say you can have it but you will have plenty of venting to do.

There are some charcoal packets you drop in the bag that help thicken the liquids - sometimes they are useful and they are supposed to be good to reduce the "aroma" -- Ileostomies though are far less odorous than colostomies.

I wish you the best and you can enjoy a basket of peeps over Easter!! I lost 35 pounds and I was told I would and not to worry about it. I was also told that I more than likely would never be able to regain it. I am very happy with my new size not that I was large before, but what I do miss is the strength I had. I am hoping pounding a few fence posts and doing more gardening will make a difference!!

Good luck and keep on the positive side --

Hi Sweedo,
I also lost 40 lbs while spending 6 months in the hospital getting my ileostomy and then my complications thereof leading to a redo. The rehab hospital food was awful (to me), but once I got out and ate my usual healthy food I got better. My breakfast for a long time was organic peanut butter on whole grain toast with honey. That helped a lot in the weight gain. Cashew or almond butter would also work. Organic milk kefir would be good for your gut. I make a lot of organic fruit smoothies with added scoops of green superfood, but used to use protein powder to help heal. I ate very carefully at first, but as time goes by I eat pretty much everything, watching out for overly fibrous foods. Just think about the quality of what you are eating. Don't just eat calories. You need to help yourself repair.
Good luck!
V

I have to agree - but I do eat all the time and cannot gain -- it is a job just to maintain. I have another friend who has the same issue - we eat the best we can and never gain. I blame that part though on the loss of the upper small intestine as well and half the pancreas. If you folks find anything super special please share --

I was specifically warned against protein powders and Ensure etc.... again it may have to do with other portion and not the ileostomy itself.