Ileal conduit to Indiana pouch

[Pscott1455]

I am 47, male, healthy, and very active physically. I have had an illeal conduit for 37 years. Problems with bags leaking over the past couple of years (my faithful brand for 30 years is no longer manufactured, and the new is very unreliable). I want to undergo surgery for Indiana pouch continent diversion. Already had preliminary tests. I would appreciate your experiences, perspectives, and advice.

[squid56]

I had my ileal conduit for a mere 6 years before I converted to my pouch. I love my pouch!!!!! I had it done back in 1992 and it is still going strong. I will not lie, the surgery was difficult and I had a few set backs, but once I was all healed up things got so much better for me.It is also lots cheaper to maintain- all I have to buy now are catheters and stoma coverings. I use either gauze and tape or special coverings designed just for continent stomas. They are like absorbent band-aids called AMpatches. Have they said where they would locate the stoma? Most surgeons have been using the belly button or lower down on the stomach. Minre ois still on my right side though it is just above the pubic area. My ET nurse marked the site for me prior to surgery. In the beginning you will have to go a "training period" of getting the pouch to hold increasing amounts of urine, this can take a few months before things are truly all set. I can now hold over a quart of urine, which is a HUGE improvement over when I had a bladder. My main advce is to have it done where they do lots of them, all the time. Let me know if I can answer anything other questions. Judith

[uroman]

pscott,

I had my ileal conduit for close 30 years. It took me a long time to make the decission to make the the switch which was 2 years ago. Now dealing with leakage out of the stoma. With all the issues I have had I would still say DO IT. The surgery/recovery is not easy but it is worth it.

uroman

[stomagirl11]

I had a neo bladder put in in 2010 and was catheterizing for a year. But, during that year I had to keep going in to have my urethra dilated because the catheters would not work. In 2011, they decided to do another surgery to put in an illeal conduit and remove my urethra. So, that is what I have now and have had several infections which they will not treat with antibiotics any more because I end up with C-Diff. I even ended up becoming septic and was in a coma for 2 weeks. I do not like the urinary bag on the outside of my body and have had trouble having it stay on because I have had several abdominal surgeries and from the scarring it is hard to get the bag to fit right no matter what I try - and believe me, I have tried everything. I would love it if I could get rid of it and have the Indiana Pouch. I was wondering if anyone on here could tell me if I would be a good candidate for one even though I have had my urethra removed. I would appreciate any feedback at all. I have other health issues and would love to be able to at least get rid of one problem. I am 48 years old and I have had 20 procedures and surgeries ( I include colonoscopies, EGD's, a hysterectomy, DNC's, gallbladder surgery, kidney stones removed through my back, bladder surgery repair, bladder removal, and the lists goes on). I do not want to have to go through another surgery but this urostomy bag is causing me too much trouble. I also have not been able to eat solid food for over a year and they put a feeding tube in last December. So, now I have that and the urinary bag on the outside which is very uncomfortable and inconvenient. Now they found out I have a rectal prolapse besides everything else. So, if anyone has any suggestions for me they would be greatly appreciated.

[NotTheSame]

I have an Ileal conduit and was looking forward to the Indiana pouch. However my surgeon, ranked one of the top robotic surgeons in the world, advised against it. What he said was that the hole where the urine comes out, he used a bigger word, gets worn and damaged with catharizing over and over again, day after day and then another surgery is necessary, and then another surgery is necessary, and then another surgery is necessary. Not in my best interest as far as my general health is concerned. We know what a serious surgery takes out of us. in addition, I have found a ConvaTec pouch that works great. It is all plastic except for the wafer which is a fabric, so it gives / moves in tension and shear movement. No fabric other than that, so I can shower every day. I have been able to keep it on for longer than a weak, but that's too long. Change now every 5 days. It has a concave center with adhesive on it, plus the wafer of course. #17579X. Maybe # 1757XX. my stoma got smaller so I have two #'s to go by. Know your stoma size and they will send you free samples.