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Having ileal conduit after radical cystectomy: What to expect?

Posted by leantomm @leantomm, May 27 4:39pm

Hi Everyone, I am male aged 75, having ileal conduit urinary diversion in June, bladder and prostate being removed. I was warned about ileus problems in the days post surgery and heard that drinking coffee and chewing gum can help. Also chewing peppermints . Has anybody with experience any advice ?

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141emp | @141emp | Aug 2 8:12am
In reply to @sperio "@141emp most of us are in situations requiring an IV. As a former phlebotomist, I put..." + (show)
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@141emp most of us are in situations requiring an IV. As a former phlebotomist, I put myself thru 4 years of professional school as a part time job. I know veins. Either request someone who knows what they are doing or ultrasound. Do not be bashful for the consequences of "trying" is not acceptable.

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@sperio , lol, no one will ever say I’m bashful on this subject prior to a procedure or in the ED🤣. I do worry about infection though with port access outside of my treatment center and normal Keytruda treatments. I know it’s combination of my very small veins and past chemo and then in some cases, medical professionals who are not as experienced in difficult sticks as others, so I’m very firm and escalate if necessary. I just will not accept anyone “learning” on me anymore.

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debbieanddale | @debbieanddale | Aug 5 4:23pm
In reply to @141emp "@debbieanddale No and I was ok with that until the blot clots. At that point I..." + (show)
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@debbieanddale No and I was ok with that until the blot clots. At that point I was no evidence of disease on scans and Signatera. Signatera became positive again a year later and my treatment plan was 6 cycles of EVPembro. I asked for a port and my dr agreed. While the port made treatment easy , no one else liked to use it outside of the treatment center so it became a bit of a hassle for scans and ER visits. It’s with good reason, nurses need to be trained and infection is always a risk. Once I knew this I knew to remind schedulers I needed an appointment with at the vascular access unit prior to the scan or procedure . There was also the option of using an ultrasound. Unfortunately , there were a handful of nurses and anesthesia residents who thought they “ could find a good vein with blood return” . I just tell that type they have a choice of ultrasound or port , period!

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@141emp The reason the ER and others didn't want to use it was bc we were told in the ICU (and we knew how to access) was this was the patients lifeline for cancer treatment and if we clogged it up (or other such nonsense) we would be in big trouble. After I worked downstairs in radiology, I accessed ports all the time. I was super careful, sterile procedure, all wore masks, but I was no longer afraid. I was actually never afraid, but they were strict "DON"T use it", which is sorta bs. I always tell people to use the emla cream so the stick doesn't hurt. I don't blame you using the VAT team. I was taught by the VAT team. I'm old school, so I never use US. after 46 years I just prefer doing it the old fashion way and know when I need to call for the VAT team to do it. 🙂 Thank you so much for your reply.

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141emp | @141emp | Aug 5 6:07pm

Thanks Debbie, the main problem was that the thoracic surgeon’s NP totally overset expections telling me I would never have a problem again and then had no idea why her own hospital or anyone outside of the cancer treatment center wouldn’t use it. I was totally naïve about doctors and hospitals in those days. Had nothing but problems a day after procedure to put it in. The anesthesiologist I had for the port procedure was the only anesthesiologist that has ever listened to me and guess what he had no problems finding a good vein. The negatives are a very rare experience in my 2 1/2 years of treatment there. My oncologist’s awesome PAs & care team took care of it going forward and the majority of experiences with this very difficult stick are positive. I became better educated too. I’m happy to let them use an ultrasound if they don’t want to use the port, especially in the ED and always make sure VAT access is scheduled properly in advance if I’m having a procedure where I know they are not trained to do what is needed😊 It’s not anyone’s fault that my veins are what they are.
Hope you and Dale are doing ok!

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