Possible botched urostomy conduit surgery? Suffer repeated infections

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?

@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.

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.

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)

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.

@perezg1986 and @tapestry4245carton, you should be able to get help from an ostomy nurse. I invite you to join the monthly Zoom support group led by ostomy nurse at Mayo Clinic, Candy Boyes, R.N., RN-BC, C.W.O.C.N. The group meets monthly on first Tuesday of the month from 4 to 6 PM Arizona time. The next meeting in next week Feb 7. See more info here:

- Ostomy Support Group https://connect.mayoclinic.org/event/ostomy-support-group-121/

Have you had consultations with an ostomy nurse to talk about the leaking?

Thank you I hope to.