AGING WITH CONTINENT ILIOSTOMY

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racorin128
Posts: 1
Joined: 2021-08-27 10:27:54

AGING WITH CONTINENT ILIOSTOMY

Post by racorin128 »

Hi All,
New here, and I have not seen any questions or comments about aging with a continent iliostomy.
My 87 yr old mother has had a continent iliostomy for 45+ yrs. She has never had any issues with this surgery and has lived a very active, normal life. However, she has now had a series of strokes that have left her very weak. Up until this last one, several days ago, she was able to get in the bathroom and empty herself with a little help getting the bandage for covering the ostomy ready and then cleaning up. She is now in the hospital and every time she goes into the hospital no one has any clue as to what a continent iliostomy is, including GI staff. It is a struggle to get them to help her empty as right now no visitors are allowed due to covid. Yesterday they allowed me in to help her get her MRI done, she is extremely claustrophobic and they did not want to medicate her. I am a CT/MRI tech so I went with her to keep her still. Anyway, while I was there we attempted to get in the bathroom to empty. What a disaster! She is very weak and wasn't really able to get it done, she cannot be sitting due to placement of stoma. The stool was all over the toilet bowl and floor, housekeeping was not happy. My brothers and I are searching for a solution as to what to do when she cannot get out of bed anymore. It is very difficult to find specialists that are familiar with this type of situation. I have made and appointment with a colorectal surgeon to discuss this, but I was curious if anyone has had any experience with some sort of drainage system that can be hooked up through the stoma. We live in South Florida and anyone with knowledge of a physician that is familiar with this procedure please pass along a name.
Your input is much appreciated
Thank you,
Randee (Ruth's daughter)
PS. I also have an umbilical urinary stoma due to chronic UTI's throughout my life. Several surgeries to expand capacity were not successful. I can now urinate normally, and have the option to catheterize through the stoma, which comes in handy on long car rides or being stuck in traffic. This surgery that was done when I was 38 yrs old has made my life so much better. I no longer have to urinate every half hour, what a feeing feeling it was and still is. My surgeon was Dr. Steven Docimo. He is a pediatric urologist, but does these surgeries on adults as well. He now is at Childrens Hospital in Pittsburgh, although I had my surgery at Jonhs Hopkins. I will forever be thankful to him for transforming my life.
joykenrma
Posts: 1
Joined: 2023-01-08 21:34:43

Re: AGING WITH CONTINENT ILIOSTOMY

Post by joykenrma »

I can't help you out. But your mom's problems are my biggest fear. To become a burden on my daughtersdown the road if I can't take care of my ileostomy.
BillV
Posts: 120
Joined: 2013-11-11 21:24:03

Re: AGING WITH CONTINENT ILIOSTOMY

Post by BillV »

I am a columnist in The Phoenix magazine with article on living with a continent ileostomy, The next issue (Spring) of the magazine will have my article on this very subject.This is a concern of many people with this procedure as they become older and is also a consideration for those deciding whether they should get a continent ileostomy. One option for those who are unable to empty their pouch by themselves is to insert a catheter and tape it in place. The output end can be attached to a leg bag, thus assuring continual drainage.
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