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What do i do need advice

Posted by ddigger71, on Fri May 24, 2019 5:12 pm

have neurogenic bladder 3 yrs int catheterisation caused too many infections and pain now have suprapubic catheter for 6 plus yrs supra is now causing constant bladder spasms and infections despite bladder meds and several rounds of botox saw new uro he is suggesting radical cystectomy with ileal conduit he said the infections are messing up my kidneys and can cause them to fail im at wits end and scared botox several different times anti spasm meds oxybutinin detrol mybetric all cause constipation uro says you need to take care of your kidneys i also am diabetic type 2

Reply by Puppyluv56, on Fri May 24, 2019 11:05 pm

Wow Digger, You have a lot going on! Sorry I have no knowledge of this but it would seem having a pouch internally to hold your urine and a stoma to empty that would be better than a regular Urostomy. Is that how it works? If this will save your kidneys, it sounds as if there should be serious consideration. Have your kidneys failed? Any dialysis? Transplant possibilities if your kidneys do fail? Do you have the answers to those possibilities? Sound as if you bladder has really been through it! 

It is a tough decision to make. Does your Uroligist have another patient that has had this procedure to talk too.? I know when Inwas having my surgery, there was a nurse at the hospital that had the same surgery I did a year prior to mine and she was willing to talk to me. I never called her but was glad to know I could.  Maybe someone on here has had that surgery and can help you ! 

Good luck in your decision! There is no wrong answer here! 

Reply by ddigger71, on Sat May 25, 2019 7:00 am

thanks pup uro told me 3 options 1 ileal conduit fewest complications easisest recovery external pouch 2neobladder longer surgery longer recovery more complications can be incotinent  3 indiana pouch requires catheter every 3 to 4 hrs he said kidneys are not in failure yet but if i dont do this soon they could potentialy fail left kidney already is starting to scar uro says he done ileal conduits but the other 2 surgeries have to be done in boston i have to decide do i want the simplest surgery or go with the other 2 surgeries i have gone on other websites regarding all three surgeries ileal cond is the simplest least complications but have to wear an external bag

Reply by Puppyluv56, on Sat May 25, 2019 9:01 am


Seems he is suggesting the simplest and least invasive surgery. I have a Colostomy so an outter bag is required It is not fun but my life has not changed any because of it! It takes up some of my time but I have all the time in the word being retired so it is no big deal! I would think an urostomy pouch would be a lot easier to empty than a Poo pouch. At least you won’t have to deal with the odor. 

Nice to have options though! 


Reply by Uro2011, on Sat May 25, 2019 9:48 am

Hi there, I have a urostomy with an external pouch. I was given 3 choices as well and after asking two well respected surgeons if they were in my shoes what would they do. They both said they would do the external pouch because it’s easy to take care of and way less complications. They both said with the internal bladders there are many more complications/infections that could happen. It’s been 8 years for me and I haven’t had any issues other than some skin irritation around my stoma, which I have figured out. Yes it’s external, but I was managing it very well after just a few weeks post surgery. I have travelled by plane  to many places with no issues. I’m so glad I listened to the two surgeons who were young and close to my age at the time. I was shocked they both chose the external pouch when I asked them thinking being younger they would not want to wear a pouch. I do everything I used to do before. Good luck with your decision and surgery. This is just my opinion and my experience. I had a tough time deciding but so glad I went with the external pouch. I wish you the best 👍🏽

Reply by coraline, on Sat May 25, 2019 1:32 pm

I spent 3 years with constant bladder infections, till my bladder started bleeding and even then I was given cipro XL antibiotic and sent home. Lucky I went to another hospital where they did and CT scan and saw the cancer. I was given 2 choices and I picked the bag on the outside, I was told by the surgeon that was the better decision for me. I am so happy to not have bladder pain anymore, I go to the gym everyday, I have my life back.

Reply by ddigger71, on Sat May 25, 2019 5:49 pm

uro2011 how long was your recovery? I will seing my uro June 4th he said to do research it looks like the ileal conduit has the least complications and quicker recovery this is rediculous im 48 years old but I feel like im 84 the uro I had in buffalo ny put this damn suprapubic catheter I wish he would have given me more options it looks like the new uro is giving me my new uro said he should have never put the supra in a 40 yr old he said indwelling catheters can cause bladder cancer the buffalo dr did scope me every yr but now listening to the new uro I think im going to fix this mistake the supra been causing bleeding bladder spasms and pain thank you all for the responses 

Reply by Uro2011, on Sun May 26, 2019 10:09 am

I was 43 when I had my surgery and 6 weeks later I was walking around Disneyland with my kids for 3 days straight. Everyone is different of course, but I adjusted quickly to managing the pouch. The part that took time and was more difficult was accepting my stoma and pouch. I would suggest going to an Ostomy support group in your area and ask other people who have a neobladder and/or pouch about their experience. I also never have to get out of bed at night to go to the washroom as I connect to an external plastic container, it’s one of the advantages of having an external pouch. Not sure if you have to use a catheter in the middle of the night with an Indiana Pouch system. Also I was told I would have to wear adult diapers with a neobladder until I trained myself to know when I have to urinate, and was told it could take up to 6 months but it varies as others may figure it out quicker. Would be nice if others with a neobladder could comment with the good and bad that system. All I can say is I’m very happy with having the pouch as I have had zero complications in 8 yrs. 

Reply by ddigger71, on Sun May 26, 2019 12:03 pm

uro2011 was yours due to cancer or something else I talked with my family they said enough is enough you need to talk to the uro and get this done they cant stand seing me suffering throgh this any longer they want me to get the simplest one done I think im going to get the ileal conduit im going June 4th to uro and go forward and get this done my family said your dealing with a bag now ie the suprapbic foley they did some looking up on the web they said you will adapt just fine what you have now is causing pain infections and worst of all its killing your kidneys I looked at the other 2 options neobladder and indiana pouch too many things to go wrong i am a kiss theory type of person keep it simple stupid you know the saying what you said about the adult diapers I have seen in other sites that aint me

Reply by Uro2011, on Sun May 26, 2019 12:14 pm

It wasn’t for me either. I don’t like the unpredictability of the neobladder or Indiana pouch. Yes my Ostomy was done because I had bladder cancer. It saved my life. I know a guy who tried to save his and did the chemo where they inject  it into your bladder, not sure what it’s called. The tumour kept growing back every time they removed it and the cancer eventually spread everywhere and he passed away at 56. Had he just removed his bladder he would still be here today. One of my kidneys was starting to fail cause my tumour was blocking the ureter but luckily I still have 90% function in that kidney, but it was slowly dying. I was very lucky. Hope all goes well with your surgery. 

Reply by ddigger71, on Sun May 26, 2019 1:09 pm

thanks I am just so sick of being sick I just look at it this way i am going from one type of bag to another the only diferrence is the supra is causing the spasms and infections and pain get rid of the bladder equals less trouble I have come to the realization this needs to get done I have to live my life  I know there will be bumps in the road but hell i can do all things through CHRIST and my FAMILY what brand of ostomy supplies are you using the uro told me there will be a whole team to deal with the surgery stoma nurse the uro I have is highly regarded here in Mass and has dealt with many urostomies both roboticaly and open he also has done them for cancer and other reasons all I could do is put my faith in him and hope for the best outcome 

Reply by Uro2011, on Sun May 26, 2019 2:39 pm

I use Hollister. I’ve tried every brand and find Holister works the best. When I was having issues with my skin I would change my pouch every 3 days maybe 4, now I get 6-7 days out of each pouch. 

Reply by ddigger71, on Sun May 26, 2019 2:59 pm

i have decided im going to have the surgery my family said about time i do this they are 100 percent behind this and will help me anyway they can ihave gone on hollister convetec coloplast they all have samples i will be contacting them shortly do you use 1 peice or 2 peice so swimming any activity wont be a problem 

Reply by Puppyluv56, on Sun May 26, 2019 5:48 pm

Good for you! Congratulations on your decision. 

I am s believer in the two piece pouch systems. I first used what my Ostomy nurse recommended. A Convetec one piece. Actually about 4 pieces to match up!) Bad choice because she never had to use one herself! They leaked and I felt like I could not leave my house. I finally went to the Coloplast one piece, it was much better! Could at least get a couple days wear out of them. Then went to the Convetec two piece. It was much better than their one piece and I can wear them up to 10’days but they look like a old picked sweater at the end of the week. Finally started using the Coloplast two piece! Love the stronger material and peek a boo places to monitor the stoma. Not crazy about the clock system but the rest of the benefits outweigh that . The closure on drainage pouches is the best! Clips do not work! Not for me! Hated them! 

Good Luck, 

Reply by DBJ, on Tue Jun 04, 2019 10:35 am



I have a neurogenic bladder following surgery for Radical Hysterectomy due to cancer. From 2005 to 2012 i went through EVERY surgery and procedure with failed success on bladder leakage. In May 2012 i had my bladder removed and now have a urostomy.

It is wonderful no more spasms, infections, or pain. IT will take time to get use to it and you can have bag blow outs! But...there is know other way for you from your post. This is much better and improves quality of life. Reduces risk some of kidney failure. DM causes kidney failure in people with a normal bladder and function so it is important you address this!


Do it!

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