Desperate for Advice - Neurogenic Bladder & Constant Infections - Radical Cystectomy?

Have neurogenic bladder for 3 years. Intermittent catheterization caused too many infections and pain. Now have suprapubic catheter for 6 plus years. Suprapubic catheter is now causing constant bladder spasms and infections, despite bladder medications and several rounds of Botox. Saw new urologist, he is suggesting radical cystectomy with ileal conduit. He said the infections are messing up my kidneys and can cause them to fail. I'm at my wits' end and scared. Botox several different times, anti-spasm medications (oxybutynin, Detrol, Myrbetriq) all cause constipation. Urologist says, "You need to take care of your kidneys." I also am diabetic type 2.

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? It sounds as if your bladder has really been through it!

It is a tough decision to make. Does your urologist have another patient that has had this procedure to talk to? I know when I was 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!

Thanks, Pupuro. You told me 3 options:
1. Ileal conduit - fewest complications, easiest recovery, external pouch.
2. Neobladder - longer surgery, longer recovery, more complications, can be incontinent.
3. Indiana pouch - requires catheter every 3 to 4 hours. He said kidneys are not in failure yet, but if I don't do this soon, they could potentially fail. Left kidney already is starting to scar. Uro says he has 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 conduit is the simplest with the least complications, but I have to wear an external bag.

Digger,

Seems he is suggesting the simplest and least invasive surgery. I have a colostomy so an outer 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 world 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!

Puppy

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 traveled 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

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

I spent 3 years with constant bladder infections, until my bladder started bleeding and even then I was given Cipro XL antibiotic and sent home. Luckily, I went to another hospital where they did a 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 every day. I have my life back.

Uro2011, how long was your recovery? I will be seeing my urologist on June 4th. He said to do research. It looks like the ileal conduit has the least complications and quicker recovery. This is ridiculous. I'm 48 years old, but I feel like I'm 84. The urologist I had in Buffalo, NY put this damn suprapubic catheter. I wish he would have given me more options. It looks like the new urologist is giving me hope. My new urologist said he should have never put the suprapubic catheter in a 40-year-old. He said indwelling catheters can cause bladder cancer. The Buffalo doctor did scope me every year, but now, listening to the new urologist, I think I'm going to fix this mistake. The suprapubic catheter has been causing bleeding, bladder spasms, and pain. Thank you all for the responses.

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 years.

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 can't stand seeing me suffering through this any longer. They want me to get the simplest one done. I think I'm going to get the ileal conduit. I'm going June 4th to uro and go forward and get this done. My family said you're dealing with a bag now, i.e., the suprapubic 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, it's 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 ain't me.

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 tumor 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 because my tumor 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.

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 difference is the Supra is causing the spasms, 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 robotically 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.

I use Hollister. I've tried every brand and find Hollister 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.

I have decided I'm going to have the surgery. My family said it's about time I do this. They are 100 percent behind this and will help me anyway they can. I have gone on Hollister, Convatec, Coloplast. They all have samples. I will be contacting them shortly. Do you use 1 piece or 2 piece? So swimming and any activity won't be a problem.

Good for you! Congratulations on your decision.

I am a believer in the two-piece pouch systems. I first used what my Ostomy nurse recommended. A Convatec 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 Convatec two-piece. It was much better than their one-piece and I can wear them up to 10 days but they look like an 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,

Hi,

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 used to it and you can have bag blowouts! But...there is no other way for you from your post. This is much better and improves quality of life. Reduces risk of kidney failure. DM causes kidney failure in people with a normal bladder and function, so it is important you address this!

Do it!

G'day digger from Australia :)

My post may be of interest, if the link works... https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=9460

I had an ileal conduit 50 years ago. Easy to maintain, no issues, and probably saved my kidneys (and my life).

Hi everyone, thank you all so much. Just had my appointment yesterday with the urologist. I'm having my radical cystectomy ileal conduit surgery on July 11th. He said I should be okay. I feel very comfortable about my doctor. He spent over an hour talking about what to expect. He said the stoma nurse is very good too. I know there might be some bumps in the road, but I'm hopeful nothing goes wrong. I know there will be some pain, but it's for a short while compared to what I'm going through now. I'm not too worried. I'm going from one type of bag to another, minus the spasms and pain. Thank you all. Any tips on anything gladly accepted. God bless.

Glad to hear your doctor spent such time with you. Sounds as if he cares! An ostomy nurse is very important and placement of the stoma is everything! Think about how your pants fit, on your waist, hips, in between? About the panties you wear. The stoma needs to not interfere with what your norm is. It will not be comfortable if your waistband is on top of the stoma. You will be much happier if it is placed below your waistline if your pant waistband is usually on your waist. Your stoma nurse will find the best muscle in that area for the stoma but when you go see her to mark your spot, be sure to discuss how you wear your clothes for stoma placement! I got lucky and mine is below when my pants hang. I would not have thought of that going in but since you are preplanning, it is a good thing to know!

I also had an appendectomy scar on the right side where the uro is going to put the stoma. Would there be a problem with that?

Digger,

I would hope not! Trying to keep your scar to a minimum?

Sometimes I feel they should have just put in a zipper!

Pup

I just wanted to let everybody know that I had my surgery on July 11th. I wanted to give you all an update. I hit a couple of bumps in the road, namely an ileus. I did my first bag change with the ostomy nurse. I still can't eat anything. They said to try again in the next couple of days. Alright, everybody, goodnight. I'm signing off. I'm exhausted.

So glad you made it through with just a few bumps! Thanks for updating. Have been thinking about you! Come back when you feel more like it!

Puppyluv

Hey Ddigger71!

I would so love to chat with you about your experience prior to your ileal conduit surgery and as well as to how you are doing at this point.

K

Hey digger!