Daughter caring for father with new urostomy

Welcome to this group and thank you for being so supportive of your father through this journey. I had RC/IC in 2014 and have a tip sheet that I would be happy to share. If you are interested please message me. I lived alone also and was 63 when I have my RC. If possible, get some bags and wafers from the stoma nurse and "try them on" for a while to see how they fit with clothing and where the placement would be best for you. My personal suggestions for your father are - 1. You will get through this.


2. Make sure you are walking and keeping well hydrated daily.


3. Reach out to all of the manufacturers a day or so following the surgery so that you have samples arriving soon post op. The hospital should provide some bags and wafers but that brand and style may not be what works best for you.
4. Use waterproof pads on chairs, sofas, beds etc as you will have leaks. It will improve as you heal but it is a guarantee that some will occur.


5 Most importantly, do not let this disease consume you. Assume that you will need time to heal and allow that time for yourself. Have a goal at the end and work toward it. I hope that this helps. Please reach out with questions and concerns as we are here for support always. My best to you both. Linda Urbanski (moderator, Bladdercancer.net team member)

Good for you, being proactive!! Having an ileal conduit or commonly known as a "urostomy" is a challenge for everyone the first few weeks while learning how to manage the ostomy pouch. I highly recommend you contact one or two of the ostomy manufacturers NOW- well before the surgery (Hollister, Coloplast, ConvaTec are the big ones) and obtain their pre-surgery care kit. It will have pouches and information on the surgery and products to practice with, and practice practice practice applying, cutting, filling, emptying, sleeping, showering, and living with the bag in place. Also, get waterproof mattress protectors, and chux/pads for the bed for possible accidents that will probably happen, it's like potty training all over again. Try and get set up with a home health agency that has an ostomy-certified nurse. Good Luck to you and Dad and keep us posted. Anita Nurse (moderator, Bladdercancer.net team member)

hi. Welcome. Your dad is lucky to have such a supportive daughter. I have had two ostomies including a urostomy (ileal conduit) for 5.5 years. Definitely trying to move just a little each day and building it up will help with the recovery. There will be days when things seem like a step back and it is just your body telling you to take it easy for a day or two. If an Ostomy product isn’t working, definitely try alternatives. Try changing just one thing at a time to ensure you can see what is working. Make sure he drinks plenty fluids, not just for recovery but ongoing as you can dehydrate quicker with a urostomy. When he builds up strength and wants to return to any exercise beyond walking, I would recommend support underwater to support the Ostomy. These articles may help of st any point the bag itself needs some additional support https://bladdercancer.net/living/using-ostomy-barriers-paste , https://bladdercancer.net/living/adhesive-removal-barrier-film, https://bladdercancer.net/living/flange-extenders-and-ostomy-powder. This forum is great with so many people with experiences to share. As time goes on, please ask any specific questions you may have. Good luck to you both. Laura, Moderator, BladderCancer.net

Hi Linda, thank you for reaching out! My dad is doing better than I anticipated. He is staying with me until he feels ready to go home. I noticed he will have energy one day and be beat the next. His pain is well controlled with Tylenol/Motrin which I’m also pleasantly surprised. He left the hospital with a small blister and the wound/ostomy nurse tried to cut a portion of the appliance away from that part… unfortunately the day I get him home he had some minor leaking from the side she cut. Thus, we did his first bag change and haven’t had a leak since. Yay! The biggest issue my dad is having trouble adjusting to after having a Suprapubic tube and PCN tubes before is having to empty the bag so frequently. He is frustrated. I often have to remind him to empty and his bag is very full. I emptied his night bag this morning and that was even full. I worry he will go home and take a nap and forget to empty. Any tips on how to get used to the frequency in which you empty the bag. If he goes to a baseball game he is worried he will have to go to the restroom every hour to empty. Is this the reality of the Urostomy? Thank you. Sorry for the long post!