Possible botched urostomy conduit surgery? Suffer repeated infections

Posted by nancy68 @nancy68, Jun 13, 2021

My daughter had a urostomy bag put in 2010,and less than 3 months later she was seen at Stanford Palo Alto California having kidney stones the size of grapefruits blasted out of her kidneys , since the bag was put on she gets very very sick with stones , weight loss, vomiting, fever, very sick at least 3 times a month she goes to the ER 911 for 10 years now.. 3 times a month?????? I have taken her to so many urologist and no one knows what it is, last week she was in ICU w sepsis and e coli.. wasn't out 11 days and last night back to the ER with a fever??
She can not TAKE MUCH MORE, 80 POUNDS AND CONSTANT INFECTION. FOR 10 YEARS 3 TIMES A MONTH?? Is it normal after having a urostomy bag surgery DOES ANYONE HAVE ANY ADVICE, SHE HAS 3 DOCTORS SHE HAS SEEN IN A YEAR??

Interested in more discussions like this? Go to the Ostomy Support Group.

Hi @nancy68 and welcome. I've added your message to the Ostomy group as well here https://connect.mayoclinic.org/group/ostomy/ where you can meet fellow members like @katydid77 @mlmcg @engelee @candywocrn @jimmy2248 and others.

I can't imagine what your daughter is going through, and you, too! It is so hard to see our children suffer. It sounds like your daughter has been seen by some of the leading urologists, but they remain perplexed. What treatments have been tried or things been ruled out?

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@nancy68, my husband is a urostomy patient. We are so sorry for both you and your daughter. Has she seen an infectious disease doctor to identify the infections as maybe coming from one source? The ostomy is made from a piece of small intestine so there will always be bacteria involved with the stoma and the pouch. Wearing disposable gloves every time the pouch is changed and disposing of them every time helps to prevent possible infections. Being sure the used pouch is secured in a plastic bag is important when disposing of it.

I agree with you, It certainly is not good your daughter has had so many trips to the ER. Besides the toll that takes on her physical health and her emotional health, most ERs have to fight bacteria constantly. She could even pick up new infections in the hospital itself.

We wish you well and hope things improve soon. Please post updates on her situation.

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My mother had a surgery where her urostomy bag was placed on 12/15/22. After some time in the ICU she was placed in the step down unit. Once she arrived there, that is when the problems arose. It has been one month and her bag leaks constantly. The most she has gone is 1-2 days with the same bag. Most of the time the bag, which is changed by the hospital staff in her rehab facility she is staying at only lasts a couple of hours before it starts leaking and gets her bed soaking wet. It has been a nightmare for her, she can't go one night without a bag needing to be changed 2 or three times a night. I have changed the bag once or twice. It does not matter if it is changed by the doctor, the nurses or her children. It never sticks for more than a couple of hours. It always leaks. the worst part is that she also has a colostomy and when the urine bag leaks, it gets the adhesive of the colostomy bag wet which causes potential leaks in the colostomy as well. Please please help. My mom is living in agony, she is soaking in urine every day. I really think the surgery was botched. The doctors keep passing the buck and avoiding the responsibility.

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My spouse had similar problem with placement of urosomy and ileostomy bags.

We are home but not after number problems arose causing longer hospital stay ranging across November through December and though we are home he is suffering and lost over 50 pounds!

Carol Niec (for patient, Anthony Niec)

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@perezg1986

My mother had a surgery where her urostomy bag was placed on 12/15/22. After some time in the ICU she was placed in the step down unit. Once she arrived there, that is when the problems arose. It has been one month and her bag leaks constantly. The most she has gone is 1-2 days with the same bag. Most of the time the bag, which is changed by the hospital staff in her rehab facility she is staying at only lasts a couple of hours before it starts leaking and gets her bed soaking wet. It has been a nightmare for her, she can't go one night without a bag needing to be changed 2 or three times a night. I have changed the bag once or twice. It does not matter if it is changed by the doctor, the nurses or her children. It never sticks for more than a couple of hours. It always leaks. the worst part is that she also has a colostomy and when the urine bag leaks, it gets the adhesive of the colostomy bag wet which causes potential leaks in the colostomy as well. Please please help. My mom is living in agony, she is soaking in urine every day. I really think the surgery was botched. The doctors keep passing the buck and avoiding the responsibility.

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Hi perezg1986, I can sympathize with your mother's situation. I had a temporary colostomy (9 months) which leaked daily. At one ER visit, the ER doctor used Tincture of Benzoin as the adhesive. It was a game changer!!! He sent me home with enough samples to last until I could source some online. I never had leaking again. It takes a bit more to remove the substance when it's time to change the bag but it's worth it. Hope this helps.

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