Continent Diversion without using any of GI tract

[ChristiS]

My husband has just completed chemo for muscle invasive bladder cancer and will be having a cystectomy next week. The problem is he has had two prior bowel resections due to crohn's - 1976 & 1995 - well we just found he has crohn's once again. We, his Dr's & us, have all agreed it is best to not use any of his GI tract as a conduit or pouch for the ureters.

This leaves two optons:

Dr can connect ureters directly to a stoma and hubby would have a bag

Dr can divert ureters to colon and all waste would flow from rectum - anus would be used for continence.

Would love to hear from anyone who has either of these methods.

Thanks

[squid56]

I strongly suggest he go with the 1st option. I have heard stories about complications from doing the second option. Ask about the rate of cancer when using the colon to pass urine. I had a cousin who was born with bladder extrophy back in the 40's and that is what they used to do. He had life long problems due to having the ureters implanted into his colon and he died from cancer as a result when he was in his 60's. Hopefully since that was a long time ago things have changed, but do ask the surgeon about complication rates.

[ChristiS]

TY Squid - we will. I do know the procedure has changed considerably since then but we will definitely ask about the cancer rate.

[squid56]

your welcome! what ever he chooses I hope all goes well

[ChristiS]

Well we went with option 1 to not use any of the GI tract. The cystectomy went well but he had/has many complications. He ended up 6 days in ICU and 17 days in hospital altogether. At first it was heart/BP issues, he developed a large hematoma that drained profusely through his surgical incision, that got infected, poor guy had 20 lbs of fluid retained - all in his man parts, he developed a fistula - small bowel to abd wall which drained from a re-opened section of surgigal incision, needed a lot of blood before, during & after surgery, he is now stage 3 chronic kidney disease I finally brought him home, (after informing all his docs that a SNF would happen over my dead body) he is on TPN - nothing by mouth, plus 5 infusions a day of antibiotics, he had 3 drains to monitor, wound care plus all his vitals - it was a full time job at first (which I would do again in a minute) but slowly but surely things are improving. Drains are gone except the large foley bag hooked to his urostomy bag - taking 4 L of fluid in keeps his ostomy busy. The cutaneous ostomy is pretty cool - no real stoma, just will be a hole flush with his skin. In short - it has been a journey.

[squid56]

so sorry it was such a nightmare, but glad to hear he is on the other side of healing and things are getting better. thank you for the update!