← Return to Radical Cystectomy: Would like to hear the experiences of others

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@katydid77

@sue225, my heart goes out to you and your husband This is not an easy situation to get used to but it is not impossible. There is a lot of help out there in the form of info but just finding out what products work for him is a challenge. Don’t hesitate to try different pouches, etc. Ask the manufacture’s rep.for free samples and talk to their ostomy nurse. They all have someone who will help you problem solve. We are lucky here in the Jax, FL area to have a supplier who personally has an ostomy. I have found them to be so very helpful.

My husband was unwilling to use any of the support sites so we were on our own trying to find a pouch that did not leak. After meeting with the support team at Mayo Jax for the third or fourth time we finally found a deep convex flange which stopped the leakage. You need to realize that as time passes, the stomach area continues to change as the body recovers from the surgery itself. He may gain weight or lose weight and either one will affect the fit. There will probably be spillage accidents also as he will need to hook up to a night drainage bag. He may find he has to sleep on his back all night and that offers challenges. Have the phone number of a good carpet cleaner and explain to him what he will be dealing with. We lucked out in that the carpet cleaner’s father was also a urostomy patient so he taught me what to do when an accident happened at night.

We would have several days of success and then for no apparent reason there would be a leakage. This undermines their confidence so you have to keep trying until you find the combinations that work for his body shape. One thing you learn is that all the seals that go around the stoma or around the outside edge of the flange will only hold the urine against the skin if the flange does not fit right. Now we are able change out once a week and have not had any more night accidents.

Another thing we found that helped my husband sleep is to get the pressure of the bed covers off his feet. If that proves to be a problem, there is a frame you can order online that hold the covers above his feet.

I hope I have not given you too much info. If you can get a home health nurse for a few weeks who understands ostomies, she can be a life saver. The one who came to our house evidently had never seen one, much less taught someone how to care for it. We discharged her after the initial visit.

Eventually, it becomes part of your daily routine as I am sure you have done before considering his history with cancer.

My husband was 86 years old when he had the surgery and was back to playing good golf in about nine months. That was a year ago. Good luck and God bless. Do not hesitate to post again if we can help.

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Replies to "@sue225, my heart goes out to you and your husband This is not an easy situation..."

@katydid77 thank you so much. You have given me a lot of practical info that is not in the 25 page booklet the nurse gave to my husband last week re cystectomy. I was not able to go to that appt. (in Canada, Covid regulations), however I will be with him at the appt three weeks prior to surgery so now I will know what to ask re pouches, stoma issues etc. Also, the tip re sleep position and that special frame. (Information not in the pamphlet).
I would definitely feel better having a nurse around in the week(s) after surgery and will ask for someone experienced.
Did your husband have serious weight loss after the surgery? The oncologist/urologist mentioned this. And the booklet talks about liquid diet, bland foods, and small portions.
The best part of your reply was telling me your husband had his surgery at 86 and was back to golfing in nine months! That is wonderful.
Thank you again for writing to me. Your reply has been very helpful. I have been feeling totally overwhelmed and wondering if I'll be able to cope with everything.
Wish both you and your husband good health.

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