Anyone with Colostomy bag experience? (2025)

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BDM Member Posts: 4

Member

August 2021 in Caring For a Spouse or Partner

My 78 year old DH just had an ileostomy surgery and now has a colostomy bag which needs emptying every 2-3 hours around the clock. And he has been showing more and more signs of the Alzheimer’s he was diagnosed with about 4 years ago. This seems like a freight train coming straight at us. Has anyone had this situation? Any suggestions?

Lorita Member Posts: 4,339

Member

August 2021

Hi BDM,

We haven't personally had that experience but my great niece is having a hard time with hers. She has gastroparesis and has had multiple surgeries. First had a colostomy and now has an ileostomy. She's having a terrible time with hers - she also says she has to empty her bag every two or three hours. Can't seem to find the right size appliance for it. I've read about it and it says after they've had the ileostomy for a while the drainage will get thicker so things should be easier. So far, this hasn't happened with her. It sounds like an awful problem. I think on the thread "Just need to talk to my friends", Jo C posted some links to information about ileostomies for me to read. It may go back a couple of segments - maybe back to 149 at least. I hope you can find something that will help - so far, with my niece it hasn't been easy but she's dealing with it as best she can. Is your husband able to take care of it himself or is it up to you to mostly deal with it?
loveskitties Member Posts: 1,078

Member

August 2021

Hi,

I have had a colostomy for over 10 years. There is a big difference between that and an ileostomy as far as output goes.

The ileostomy is higher up in the intestine, and the liquid part of the stool has not had a chance to be absorbed by the intestine.

There is a book which was recommended to me by a nurse which might be helpful. It is The Ostomy Book: Living Comfortably with Colostomies, Ileostomies, and Urostomies byBarbara Dorr Mullen and Kerry Anne McGinn RN BSN OCN

If your DH had an ostomy nurse before/after his surgery you might also contact for additional support, or at least contact surgeon for referrals for the issues.

One of the things you have to watch out for is dehydration, since the body is no longer absorbing liquids by mouth at the same rate as before.

Here is an informative site on the subject of foods https://www.stomabags.com/blog/eight-nutrition-tips-for-ileostomy-patients/ (sorry don't know how to do hot link for this)

Hope some of this helps
BDM Member Posts: 4

Member

August 2021

Thank you so much. My DH is taking care of emptying and cleaning the bag, thank goodness. But I know there will be a time that I must take over. I’m thinking of calling and talking privately with his Neurologist. I just don’t know what to do. I appreciate your comments.
BDM Member Posts: 4

Member

August 2021

Thank you for the recommendations. I’ll check them out. And good luck to you!
loveskitties Member Posts: 1,078

Member

August 2021

Another thought just occurred to me. Since the time spent in the intestine is shortened, there may be less meds taken by mouth which are absorbed.

If your LO shows any signs of prior meds not being as effective you will need to talk to prescriber about possible adjustments due to ileostomy.
Ed1937 Member Posts: 5,084

Member

August 2021

Loveskitties, that is a great thought. And it is potentially very important to check on.
BDM Member Posts: 4

Member

August 2021

Loveskitties - Thank you for the thought about meds. We have seen my DH’s GP and he prescribed Folic Acid and Vit B12 because of the malabsorption after his surgery. He is keeping a good eye on my DH!

Commonly Used Abbreviations

DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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Anyone with Colostomy bag experience? (2025)

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