Having ileal conduit after radical cystectomy: What to expect?

@ronniek (I think this question is to me?)
I did not have treatment prior to the surgery and decided after my second opinion in NY. My original NJ surgeon would not make a recommendation, the original medical oncologist quoted the standard of care which was chemo first but openly expressed doubts about it working because of what they knew about the tumor! He focused more on “how tough it was going to be”. Very, Very different experience @Mount Sinai 😊❤️. I started chemo with Gemcitibine and Cisplatin about 5weeks after very successful surgery . The pathology showed it was really stage 3 , not 2. The treatments during week 1 of every cycle were about 6 hours long and I would sleep through most of it. Week 2 of every cycle was much shorter and just Gemcitibine (I think) The actual infusion s took about 30 minutes each but there is a lot of iv hydration to flush the kidneys. My medical oncologist said I would probably feel like I had the flu. I felt pretty good after treatment but nausea and somewhat unpredictable vomiting usually started 2-3 days later. Some good coaching on how to use the prescribed Zofran really helped . Minor, very infrequent diarrhea, moderate to extreme fatigue, some loss of appetite or weird tastes and hair loss also. My care team said I tolerated the treatment really well. The hardest thing for me to deal with was when I started getting blood clots in my arms sound cycle 4. All were in minor veins and not life threatening but they hurt and I couldn’t sleep again . Infusion sessions became really tough for me as the really great nurses tried to find a good vein for the IV. My anxiety would go through the roof . I had a full response (based on Signatera and scans ) after 4 cycles and completed almost 6 cycles when we stopped because of the continuing clots. I needed treatment again 1 year later when Signatera detected CTDna positive. This time I asked for a port which has made getting treatment almost a pleasure if that is possible😊 Many thanks for your wishes. I wish you the best as well.

Also, I didn’t use the service but not sure if you are aware that BCAN offers a survivor to survivor service where they will match you with someone has who has been in your situation. Their website has also been refreshed and is pretty easy to use. Here’s a link
https://bcan.org/find-support/survivor-to-survivor/

@sperio Hi, yes 5 days or more. They wanted to send my husband home early. I looked at my husband’s feet and one was blown up like a balloon. I insisted a medical doctor look at him. He had blood clots in his knee and one in his lung. He stayed a couple days more. I noticed that the surgeons ( and apparently nurses) don’t assess the patient holistically, they don’t look at the entire body and they don’t sign on medical doctors initially. They tried to keep only the surgeon and his residents on our case. Medical doctors on the case can make a difference on checking you out. This was at renown Northwestern Hospital in Chicago.

@141emp Glad to read your encouraging story, as I’m 82 and looking at surgical RC in July. Knowing mine will be different recovery… still I am wondering about clothing protecting the stoma and pouch. Googling I’m reading many different ideas. Some say maternity pants, granny underpants, others say nothing tight around waist. Could you give me some ideas I want to be prepared as I have no female backup to help.
Also did you experience any incontinence after surgery.
TY in advance !

@rafcer I've had an ostomy since 2002, its an ileostomy, but I had many of the same questions you have.

I wear normal underwear, but high waisted ones. This supports the weight of the ostomy pouch for me. What works for you will depend on what kind of underwear you like and where the stoma is situated. For most women the stoma is below the waist, and slightly below and to one side of the navel.

These are great questions for the Ostomy group, where this discussion has been crossposted
https://connect.mayoclinic.org/group/ostomy/

@rafcer My stoma is about 2 inches below and to the right of my belly button. I wear high wasted panties and a belt that attaches to the pouch for extra support. My clothing is pretty normal size but not tight and the device does not show. No incontinence but I did have post surgery fluid draining from my vagina for several months and needed to wear a pad. The amount of fluid decreased over time. I had robotic surgery , not open surgery so everything was done with six small incisions and removed through the vagina. Initially used a wound care pouch that can be open and closed and then graduated about 2 weeks after the stents came out to a normal pouching system . I don’t wear anything else to protect the stoma. Im guessing you will see an ostomy nurse as part of your surgery prep. They will assess and mark where to place the stoma and will help you with questions too. Also had visiting wound care nurses for about 1 month after I went home to assist with pouch changes until I got the hang of it. The hospital ostomyb nurses also gave me an initial set of supplies to go home with and made recommendations on what to use and taught me how to care for the stoma before I was discharged . Best wishes and hope you have an easy recovery!

@141emp thank you so much for weighing in! I hope you'll consider joining the Ostomy group to share your experience with other urostomates!
https://connect.mayoclinic.org/group/ostomy/

@skybolt I appreciate your response. The nature of most surgeons is to operate. Managing can sometimes not be part of their DNA. As a patient in today's healthcare world, one must us AI and question. If you do not, do not expect proactive care unless you are fortunate to have internal medicine involved .

You are so right. I am a nurse and was very proactive in my husbands recovery, walking him in the hospital every 2 hours or so, flushing catheter, measuring, assessing…. AI especially helped after surgery too.

@sperio sadly, it wasn't any different 20 years ago. I had a hospitalist tell me I could go home two days after a major abdominal surgery. I had just had a pik line put in 14 hours after my IV failed and I didn't have pain control yet. And I was on TPN and had a urinary catheter. No way was I going home the next day. I wasn't even eating.

My surgeon was not impressed with the hospitalist.

I’m 82 yr old female with BC found in January, had 2 Turbts, couldn’t get BCG due to small bladder and incontinence. In May kidney failure started had Bilateral Nephrology Tubes inserted leading to 2 Catherers with bags on each leg for urine. Now it’s time for Surgical Not Robotic surgery for Bladder Cancer. Radical Cystectomy with Ilideal conduit. Not getting any info from urologist on what to expect after. Getting much info from this site. I’m getting surgery 7/7 and would love to hear anything about recovery, eating,anything I’m so scared.Thank you in advance