leaking stoma and supplies challenges

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CC3
Posts: 1
Joined: 2019-10-23 07:30:25

leaking stoma and supplies challenges

Post by CC3 »

Hello all!

We (my husband and I) are new to these discussion boards which have already given us a wealth of gold information and ideas to try and explore. Thanks to all who have asked and shared for the benefit of others!

We have a unique situation in that my husband is allergic to latex so all supplies need to be latex free. He is having such a hard time with supply companies and health ins, except for 180 medical (they are phenomenal! but they only do catheters and syrnges). What companies are good to work with for outside bags -hollisters and skin barrier wipes and toomey syrnges and special balloon type catheters?

Back ground: 2015 my husband diagnosed with prostate cancer had radical prostratectomy. then in 2018 diagnosed with bladder cancer. went thru BCG and 4 surgeries to remove multiple tumors but last one showed tumor had gotten to muscle level near lymph nodes. 2019 went thru Chemo and then bladder removal surgery with diversion. He wanted neo bladder but was swayed to do indiana pouch because of prior surgery with prostate in 2015. Also the concern was Neo would not be continent like an indiana pouch.

June 10-15 2019-Indiana Pouch surgery recovery in Charlotte, NC (we live in Charleston, SC)
June 21 removal of all stitches with local referring urologist
June 22 foul oozing stuff coming out of one of the sutures -taken by EMS to local hospital put on IV antibiotics, transported and admitted back into Charlotte hospital for 7 or 8 days to get 2 types of iv antibiotics and put in accordion drain to remove toxic from a spot in his abdomen
Note - pouch top tube/bag never worked as expected causing a different plan of training pouch for cathing
8 weeks later at follow-up apt stoma was leaking so much that the workaround solution was to put an outside bag over the stoma to catch the leak which is between 50ml-175ml every 4 hours when he caths. (flushing/irrigating 2X day)
He has had 2 additional admittance to local hospital with infections believed to have something to do with the leaking issue. Both times they are concerned with it going septis so he gets put on iv antibiotics and currently home but on 1 month supply of antibiotic low dose.

He leaks so bad out of the stoma he has to wear the outside bad that can detach as well so he can still cath every 4 hours. So what was supposed to be continent requires him to half undress, empty a bag, remove the bag, cath to empty indiana pouch, flush, irrigate and then put outside bag back on and redress. Now we are thankful for his life!!! But it wasn't supposed to leak and the surgeon isn't really sure why or what to do but we have surgery scheduled for Dec 9th.

From those who dealt with a leaking stoma way more than a bandaide can cover up, what are some of the things you tried to make it quit?

Does stool softeners affect this leaking? Does avoidance of certain foods make any real difference? I know everyone is different but we need ideas to try.

He has done 3 studies for surgeon - not taking and taking ditropan 5mg, 10mg every 8 hours and recording volume from leak and pouch every 3 hours. This is to help surgeon know what to do to fix it with another surgery in Dec.

Has anyone had a second surgery that actually fixed their leak and what did they actually do to fix it? thanks for your responses in advance!!!
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