Seeking Advice on Managing Ileostomy and Nutrition Concerns

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bikergrammy
Dec 22, 2011 12:11 pm
Hello, all.  I'm so happy I've found this website!  My mother who is 79 had surgery last October, and most of her large intestine was removed.  She now has an illeostomy bag.  Since Mom doesn't own a computer, she doesn't have access to any kind of support group, so I'd like to ask a few questions on her behalf.

She has been hospitalized 3 times since her surgery, due to blockages in what's left of her small intestine, which is "free floating" according to her doctor.  Sometimes it "crimps", but other times she gets bits of food in there, that causes the blockages I mentioned.  Recently she told me that sometimes the food in the bag is whole and undigested, such as bits of carrot, peas, etc.  

Also, she apparently has a long list of foods she isn't supposed to eat, and every time she's had a blockage she tries to brainstorm what might have caused it, and she adds things to this list.  I'm afraid she's not going to get the proper nutrition she needs.  She hasn't lost any weight, so I guess that's a good thing.

Another issue she seems to have, is that she feels she needs 3 hands in order to be able to remove the bag, and put on a new one, all the while her stoma is "erupting" material.  So............does anyone have any thoughts or advice on these issues?

Her surgery was very serious and she was in rough shape for a while, and her doctor only gave her 25% chance of pulling through.  I'm very grateful to have her, needless to say, and would like to do anything I can to help her with the difficulties she's having.  Oh.......one more thing.......she's had lots of issues with her bag leaking, at home, but more importantly when she's been out in public.  I don't want her to become a recluse because of this.

Thanks for reading this long letter.  

Sharon
Ironmike
Dec 27, 2011 1:51 am
First, choosing the right equipment is important. Hollister is good because the bag is slimmer and you can get a 7 inch bag if you're of medium to small height. Seems many hospitals start you with Convatec's one piece bag which is not a choice to stick with. If leaking is a problem, I would suspect a poor paste seal or too much flesh around the stoma which precludes a good fit. If so, you'll need a convex barrier and use of the belt.



Secondly, removing and replacement require a little time and experience as an ostomate. Your mother will determine the most opportune time to remove it, shower, and put on a new one. She'll learn the less active time periods, but has to be ready with some tissue. At removal, press lightly around the stoma area while standing at the toilet and evacuate what you can. She'll have some feeling as to how active or quiet it will be. After 9 years, I have a good feeling as to activity and the prime times to change and shower, although accidents will happen...just have to be set up and prepared beforehand. Also, personally, I do not recommend showering with the appliance on. After 100 changes, she'll get the hang of it.



Mom sounds like she has some other problems not for me to comment on; however, I eat anything I want and it is customary for items like corn not to digest and come out whole. If a problem, cut them out. I love nuts, but absolutely must chew them thoroughly before swallowing.



Good luck to Mom and her caretaker!
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Firefly
Aug 04, 2013 4:13 pm
I am 92 ; have had iliostomy 5 years and some blockage problems; however, all problems seem to be solved by chewing every thing very very well.Chew Chew Chew! Change appliance early am--gets easier to do with repetition. Good luck
WOUNDED DOE
Aug 04, 2013 8:39 pm
Good luck to your Mother!  I must say, Ironmike covered a LOT of great suggestions in his post that should be helpful xoxo keep us informed how she's doing and I would hope she does not become afraid to socialize or lose faith in happy days ahead.....we learn so many tips and tricks in time, with dealing as an ostomate, it is not always easy but losing our view on happiness and quality of life is one of the most difficult parts of the whole Ostomy Life that I try to encourage friends not to lose along the way.....



....and Firefly!!  You are SO RIGHT, "chew, chew, chew"!! .... we learn that sometimes it is better to eat smaller meals more frequently during the day, and chew everything very, very well.....with more sips of water in-between.......drinking a bit extra to maintain hydration really helps.......make sure she is not lacking in vitamins.........best of luck and much love!



~Doe

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