UOAA Discussion Board

Hi all. Let me start out by saying it is not me who has the urostomy, but my mom. Also a warning that this is long!!

Mom had her bladder removed Nov. 28 2018 due to bladder cancer. I am happy to say the cancer is gone now, but her life has definitely not improved. After surgery she was not released from the hospital until Dec 23, when she was sent to a "skilled nursing facility", otherwise known as a nursing home, for rehab. After 3 weeks I took her home, against medical advice, as I was slowly watching her die. She wasn't eating, they were over medicating her and I had to physically be present, throwing a fit, before they would shower her. I had her at home for 2 weeks, doing my best to get her to eat, caring for her stoma and post op wounds, and basically trying to breath some life back into her. At the 2 week mark I finally admitted I was fighting a losing battle and took her back to the hospital. Turns out she had an abscess in her abdomen and had formed a fistula, allowing stool to leak into her urostomy bag. It was decided to let the fistula be, in hopes that it would heal on its own. It eventually did. I brought her home again, this time with a drain in her abdomen and a NG tube, as she had went so long with eating so little she was malnourished. That time it lasted a week and a half before it was back to the hospital for sever lower back pain. Turns out one of her kidneys was failing. This time she got to come home with a nephrostomy tube and bag (hopefully temporary). We like to joke that she is running out of places for them to stick tubes, drains and bags!!! It was recently discovered that mom now has a recto-vaginal fistula. This one is not going to close up on it's own. Both her Urologist, and now her colo-rectal specialist feel that the surgery to repair the fistula would be too much for her. She is 71, and not at all stable since the urostomy surgery. However both feel that, pending clearance from her cardiologist, she has a fair chance of surviving a colostomy surgery. Her other option is to live with the fistula, with stool constantly leaking out of her vagina. It's not a life she wants to live, and has opted for the colostomy surgery. While I feel most days that I have her urostomy care under control, there are times (like now) when I can't for the life of me get the wafers to hold. A new wafer is only lasting between 5-12 hours before it springs a leak. I am frustrated, Mom is frustrated, and with changing so often, her skin is getting sore. We will get through this, it's happened before, where there is just a stretch of a few days that nothing is working right. Does anyone else experience these periods?

I guess I am here, not so much to seek advice, but to be able to talk about these things, and actually have people understand what I am talking about. In reading through previous posts, I have identified with so many others, their frustrations, fears and concerns. And I am just an outsider, not having experienced these things first hand.

I think this forum is wonderful, and am so grateful to have found it!

Kasey:
You are a shining Guardian Angel to your mother.

And you are a testament to the real and weighty challenges that are often borne by family who are serve selflessly as caregivers.

I glad that you found this forum and feel comfortable sharing the good, less than good, and the imbetween in caring for your mother. Consider this to be a safe harbor for expressing yourself.

You and your mother have been through A LOT together.

I think the management of the upcoming colostomy will prove to be easier/less complicating than the current urostomy.

Wafer leaks are disheartening. But there accessory products and aspects of technique when placing a new/fresh wafer that can help minimize their occurance. A few ideas and thoughts.
1. Explore a new/different wafer, pouching system and/or adaptic barrier ring.
Each ostomy appliance manufacturer has their own line of products. The composite materials that make up a wafer vary
from one manufacturer to another. The ostomy appliance/brand that your mother was provided with in the hospital/skilled nursing facility may not be ideal for her (skin characteristics, abdominal topography, dips and creavices and scar lines. Contacting each of the major manufacturers (Hollister, Convatech, Coloplast) and requesting samples might provide benefit in identifying a wafer/pouch system that is ideal for your mother. Finding the ideal wafer/pouch system can take trial and error but is well worth the time and effort. The contact telephone and e-mail assesses for the ostomy manufacturer’s is readily available on this UOAA web site.

2. Use a thin ostomy belt to stabilize the wafer against the skin.
An ostomy belt is a 1/2” to 1” wide length of elastic that clips onto both sides of an ostomy wafer. The ostomy belt provides a hug to keep the wafer in place and preventing sheer/friction that can loosen the outer edges of a wafer resulting in a leak.

3. Use an adaptive ring around the stoma. An adaptic ring is a donut-shape sphere of hydrocolloid material. They go the names
of Convatech Cohesive Seals, Hollister Adapt Ring, and Coloplast Brava Adaptic Ring. A comparable adaptic ring made of silicone is made by Trio. Adaptic rings are analogous to a rubber ring placed in a joining faucet.

4. Stay clear of body soaps with moisturizers, aloe, and skin softeners. Likewise, stay clear of using “baby wipes” and commercial moistened towelettes to clean the skin around the stoma. Avoid bath soaps with moisturizers and aloe.

What to use? Safe N’ Simple brand makes a moistened towelette designed to clean the paristomal skin without affecting wafer adhesion. Safe N’ Simple wipes are available through your mother’s ostomy supplier (Byram Healthcare, Edgepark, Sterling Medical). Safe to use soaps: Ivory bar soap, neutrogenia sensitive skin bar soap, Cephal brand soap, any glycerin bar soap, Johnson & Johnson Basis brand soap.

Make sure that the skin is clean and dry and free of any moisturizers before placing a new wafer. The adhesion of a wafer to the skin is mediated by body temperature/warmth. Pre-warning a wafer by using a hand-held hair blow dryer for a minute is a technique used by many ostomates. Keep relatively still for 5-10 minutes after placing a new wafer to the skin to allow the body heat to optimize the seal of a newly placed wafer to the skin.

I did not mean to write a novel. Of the above suggestions, see what may interest you/your mom and disregard the rest.

Let us know how we can help support YOU as you support your mother. Day or night, there is usually someone logged on and available to offer a helping hand.

Do not forget to take care of yourself. You are important.
Karen

i can second everything Karen has said, i would also add that she begin seeing a good WOCN in your area for advice as well. also calling the major suppliers for advice as they all have WOCN's and product specialists on staff who can help you find the right appliance for your mom's situation.

Hi and welcome, I too agree to all of the above. Just going to add, I use Aloe Vesta cleaning foam by ConvaTec. A high foaming, non-aerosol, pH balanced cleaners for all over bathing with ingredients designed to dissolve fecal soils resulting from incontinence. Enriched with Aloe Vera and emollients to soothe and moisture fragile skin.

I use this to clean around my stoma after I have removed my wafer. Can also be used as a body wash or a no-rinse shampoo.

If I have sticky reside around my stoma after removing the wafer, I use Sensi Care Sting Free Adhesive Remover by ConvaTec

Just before I put my wafer on, I spray around my stoma with No-Sting Skin-Prep by smith & nephew.

I pick up my Ostomy supplies local, It's not uncommon for me to go into the store (they also sell walkers, lift up chairs and hospital beds, etc), and ask the employee what they recommend for what ever issues I might be having.

Call Hollister, ConvaTec and ColoPlast and have them send you sample supplies.

Good luck, hope thing turn around for your mother soon.

Nickolas

Hi Kasey:
Just want to check in with you and see how both you and your mother are doing.

This forum tossed me a virtual life-line of camaraderie and ever-so-helpful practical tips on ostomy care when I was newly diagnosed. My new ileostomy felt as though I was living in a foreign country and having to learn a new language. With this forum, I made it through.

We are here for you in whatever way you may need in lightening your role as caregiver extra-ordinare.
Karen