Life without a bladder
I spent 11 days in the hospital following y Radical Cystectomy. 2 days after getting home we had a major ice storm in Austin Texas that knocked the power down for 5 days. It couldn't have come at a worse time. I'm having to learn to live with the Stoma bag and trying to prevent leaks which I have not mastered yet. My pathology report showed that the cancer has invaded the fatty tissues outside the muscle layer (my surgeon says almost stage 3). I did have negative margins. I'm somewhat digressed so any help is appreciated especially stopping the leaking..
@old64horn - I am happy to hear that the surgery is over as that is the most challenging part. As for the leaks - if you check your barrier ( wafer) when you remove it and see where the leak is, it is easier to find a way to help with it. Normally the wafer will be white and swollen a bit close to the edge where the leak is. And it is usually at 3, 6 9 or 12 o'clock. I suggest reaching out to your stoma nurse if you have one. If not, Coloplast or Hollister have great customer service people and they will try to figure out how to help and send you products. It may be that your skin was not completely dry when you put the wafer on or that you have a product that for some reason does not adhere well to your skin. Also, your stoma changes in size and swelling of the abdomen goes down during healing and that can also cause the wafer not to adhere the same way. I hope that one of these companies can help you as they did when I had issues in the beginning. Good luck Linda Urbanski ( moderator, Bladdercancer.net team member)
@CommunityMember6699542 -I wish you the best in finding what is cause your leaks. Many times it is something simple to take care of but it makes a huge difference to the patient. Keep us posted on how things are going. My best Linda Urbanski ( moderator, Bladdercancer.net team member)
first of all, well done. You got through the surgery and home. Great milestones. Been better, negative margins. Such good news. Sorry that weather had prevented such support as is needed. Firstly make sure the bag is cut to match the stoma size. After surgery it is swollen. It will change size often in the first 6-8 weeks. If your bag isn’t suiting, ask for samples of others. Is your stoma, retracted, flush with the skin or protruding? Laura, Moderator, BladderCancer.net @old64horn - Great to hear that you are not getting any leaks as that can be frustrating until the cause and solution is found. It sounds like you are doing well post op and getting used to the bag. As for immunotherapy, I did not have that after my RC but assume that others on here have experiences that they will share. Keep up the positive attitude as it will do you well. Keep us posted on how you are doing. My best Linda Urbanski (moderator, Bladdercancer.net team member)
that’s great to hear. Glad the leak situation has improved and the nurses are coming regularly to check on you. I don’t have any personal experience to share but this might. Brittney shared her experience. https://bladdercancer.net/living/keytruda-experience-side-effects Wishing you well and please let us know how you go. Laura, Moderator, BladderCancer.net
Thank you Linda, My MO wants to use Opdivo as my Immunotherapy drug. Reading all the side effects of this drug is making wonder whether the medicine is worse than the disease. I will definitely try at least one or two infusions and see if I can tolerate it.
@old64horn - I wish you well with the immunotherapy. I am not a medical professional but know that side effects can impact people differently. I hope that you have minimal side effects and major success. It is a journey but we are many times much stronger than we give ourselves credit for. Keep us updated on how you are doing. My very best to you. Linda Urbanski (moderator, Bladdercancer.net team member)
ah the link I posted above is for a different drug but I am sure others on here will chime in. Laura, Moderator, BladderCancer.net
