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Update after getting neobladder

I am one week past surgery to remove my bladder and create a neo. The experience has been MUCH LESS impactful thus far than I would ever have thought. While the neo is healing I am sporting two urine collection bags -- one typical urethral cath which is producing very little urine, and a 2nd bag fed by two tiny stents plugged into the kidneys which is temporarily glued to my abdomen. I came out of the 4 hour surgery with a pain level 4-5 and taking tylenol and oxy, but the 2nd day I was at pain level 1 and taking only tylenol. From day 3 to dismissal on day 6, I had zero pain - just minor discomfort from the incision. Bowels were awake by day 4 and I've been on a normal diet since day 5.

I've not seen the pathology report yet, so I won't speculate on the prognosis but I feel fine and am looking forward to getting back to normal activities. Bottom line -- RC with neobladder was EASY surgery, and I give full credit to my surgeon and the great hospital team at Univ Tex SW in Dallas.

  1. Hey there - that's so great to hear! These are serious surgeries but the advances in medical technology are really helping with post-op recovery. Thank you so much for sharing your story with us! Warmly, Amanda (BladderCancer.net Team Member)

    1. @gnick540 - thank you for updating everyone on how well your surgery went and that you are doing great. It is so beneficial for others to hear from those who has personally had these experiences as it provides a level of comfort if they are considering it as an option. Thank you for posting and wishing you a quick and easy recovery. Linda Urbanski ( moderator, Bladdercancer.net team member)

      1. Update two weeks post-surgery: Pathology was all good! Tumors inside bladder were still present but well contained and not invasive. Prostate and 19 lymph nodes were taken out and were clear. No further treatment is indicated, so a couple more visits to the clinic to remove foley cath and get some instructions on self-care and I'll be home free! (Yes, I am well aware that voiding mucus could become my biggest issue, but time will tell.)
        Pain level has been ONE or ZERO since the day after surgery! My Dr said that's not unusual (burst my bubble!), but it should be encouraging to those considering RC in the future.

        My bowels are learning how to work again and truth is, the watery discharge is the most painful part of the entire experience. Burns like fire! (Does anyone have suggestions?) The occasional non-watery bowel movements are not painful at all. My GI doctor said avoid spicy food (which I am), but that hasn't stopped the pain.

        1. you are doing amazing and thanks for updating. A very encouraging post for others. Laura, Moderator, BladderCancer.net

        2. @gnick540 - I found that Special K cereal for breakfast and Miralax powder in water got me to being normal and regular fairly quickly. Good luck!! Linda Urbanski (moderator, Bladdercancer.net team member)

      2. thank you for the diet suggestion. I have been eating yogurt as the Dr suggested to reduce (?) mucus, but was under the impression that dairy was to be avoided. I've been eating dry cereal. The nurse texted me yesterday that I SHOULD NOT be taking stool softener while having diarhhea (isn't that what Miralax is?). She also suggested the BRAT diet (banana, rice, apple, toast) which I supplementing with normal food. I wish the medical people would provide more detailed instructions for recovering patients.... very frustrating.

        1. here is the link working now. https://bladdercancercanada.org/en/after-surgery/ , apologises. Laura, Moderator, BladderCancer.net

        2. @gnick540 - Correct regarding Miralax - I took it to get me regular as with the cereal. I only had loose stools for a few days. I did not have any dairy restrictions but it seems that each doctor is different in what they recommend. Happy to hear that you are doing better Linda Urbanski ( moderator, Bladdercancer.net team member)

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