Facing bladder removal

[tormod]

Posting this mostly for myself to air my own thoughts. Perhaps others are in the same situation.

I have been through many years of aggressive IC now. I finally got my diagnosis 3 years ago through cystoscopy (IC w/hunner's lesions).

I have had two hydro-distentions with fulguration under full amnesia since then. Both had positive results which lasted about 6 months or so.

Since last year I have been followed up by a very friendly and skilled uro surgeon at a local hospital. He has tried to extend the "good" period through increased medication and regular uracyst treatments. I have had a very long period of increasing problems until this summer.

My bladder has been extremely troublesome over the past months, with increasingly painful urination, urgency and high frequency. It hasn't been this bad since before my first surgery back in 2015. When I urinate, it is often extremely painful to "get started" due to bladder spasms, so I often need to self-cath.

I had a cystoscopy last week after I called in for an emergency consultation. The capacity has gone down from 350ml last year to less than 200ml now. I measured volume for a few days and rarely go above 100ml. There were thankfully no clear signs of any new, major lesions.

So my bladder is shrinking fast. I rarely last more than 60 minutes between restroom visits. I now get up 6-10 times most nights, so I don't function well at all during the day. I work only 50% now due to the acute problems.

The surgeon was surprised at this fast deterioration. I will now get weekly uracyst and another increase of medication, before we will make some decisions in October.

The options are whether to do a new hydro-distention with fulguration (which might improve QOL for another 6 months), or go straight for a cystectomy. I think (based on how he explained it to me) that he's proposing to create a neobladder.

I was actually quite shocked by this, because it has always been presented as a last resort and only in the far future.

But the more I think about it, the more I think that removing the bladder may be for the better. I realize that getting a neobladder is a major surgery with a long recovery and training period. But I keep telling myself that it can't possibly be worse than it is now.

I find it hard to think about anything else these days...the disease has taken over my life and it all revolves around visits to the restroom.

My work is taking a weekend trip to Palma, Mallorca in two weeks and I will have to cancel. Airplanes, lounges, restaurants, beaches and hotels simply don't go well with the current state of my bladder.

We all lose so much of our lives to this disease.

[ICNDonna]

Re: Facing bladder removal

I just responded to your other post, but will add a little here. In my 43 years with IC, I have had over forty hydrodistentions. The shortest time between procedures was six months, the longest three years (I strongly suspect the long period was partially due to cancer treatments.) I don't routinely suggest hydrodistentions, but if you're looking at a hydro versus removal, I suggest you try the hydro first.

Please let me know what you decide and how you do.

Donna

[neohioic]

Re: Facing bladder removal

I"ve done alot of reading on bladder removal. From my understanding those who have hunners ulcers are the ones who most consistently find relief with a bladder removal. I have a feeling I"m going to be going down that route again. Nothing works for me with any lasting improvement.

Another question. If you get the bladder removed, are you going for a simple cystectomy which means only removing the bladder? Or are you going to ask for everything removed which includes the prostate and urethra and more?

[tormod]

Re: Facing bladder removal

I have had over forty hydrodistentions.

Are these hydrodistentions with fulguration? My surgeon said that he really wants to limit those operations because they are very hard on the bladder. During the last cystoscopy he showed me a huge scar from the previous operation. When they expand the bladder, it creates cracks and wounds in the bladder wall that they need to burn off with a laser. (I am just repeating what he sayd now).

My bladder has become very stiff from these treatments, which is part of the reason why I struggle to start urinating. The bladder walls get thicker and less flexible.

What kind of "side effects" have you experienced from hydros?

Anyway, like I wrote in my post it is either a new hydrodistention with fulguration, or to prepare for a cystectomy, depending on what kind of progress we see in the next 5-6 weeks.

If the result will only last 6 months, and if my bladder keeps shrinking, then the bladder will need to go eventually.

[ICNDonna]

Re: Facing bladder removal

It used to be that when I had a hydrodistention they were high pressure, distending my bladder to up to 900 cc, which caused a lot of bleeding for several days. The last several procedures have been low pressure, with the one I had this summer stretching only to 500 cc --- and the one before that to only 400 cc. The amazing thing is that the low pressure helped just as much for just as long, or longer, than high pressure. The only times I've had fulgeration it was for the ulcers and that was at least thirty years ago. The cracks caused by hydrodistention were allowed to heal on their own. My most recent hydro caused only a tiny amount of bleeding, which had stopped by the following day.

I've always thought that some day in the future I might have to have the bladder removed, but after 43 years with IC and over forty hydrodistentions, I doubt that's going to happen. In the meantime, even six months of relief has allowed me to live very close to a normal life. I do have to stick with my diet restrictions, but I'm happy I'm among those who benefit.

Donna

[tormod]

Re: Facing bladder removal

Thank you very much, Donna. That was very helpful. I will discuss this with the surgeon when I meet him in a few weeks.

Edit: I forgot to mention that during the last hydro with fulguration they only managed to increase the bladder to 350 ml, which caused immense stress to my body during the operation. I had to take Oxycodone for a few days afterwards.

[tormod]

Re: Facing bladder removal

I have now been through i «trial» period of weekly uracyst and increased medication. It’s going the wrong direction, fast. My bladder is hardly functioning and I self cath about 20 times per 24 hrs. I only work 20% now, from home (I need something other than the disease to think about).

I saw a new surgeon yesterday since my previous one is on a study leave for a while.

This new surgeon reviewed my history and was surprised that this had not been taken care of sooner. He recommended a urostomy for two reasons: it is a routine procedure and recovery is pretty quick. He said they would leave the bladder intact, only disconnected from the urethers. This surprised me since I have suffered from Hunner’s ulcers but he said it should not cause issues as the bladder will never again hold any irritating liquid.

I had mentally prepared to discuss a neo-bladder. He says that it is still an option if I really want it, but that it a major procedure with higher risk and a very long recovery.

For some reason the urostomy appeals to me. It would mean never again having to cath, no more painful urination of any kind. The thought of a life long need for equipment does worry me though, although I guess there are already so many stoma patients that the real risk of not getting equipment is pretty low. Maybe in 20 years they can 3D print a new bladder for me.

He also mentioned the Indiana pouch as a third solution, but since it would involve cathing regularly it does not appeal to me.

I think an outside pouch would give me back my life. I would gain control of bathroom visits, I could travel again, and also take up hiking, running and cycling - all of which I have had to give up and which I really miss.

I am set to meet a stoma nurse in a week or so, then I have to make a decision. If I go for a urostomy I will probably get the surgery in November.

[neohioic]

Re: Facing bladder removal

thanks for sharing all this. Please keep us informed as everything moves forward. I'm surprised they would leave your bladder there. I guess if the dysfunctional bladder doesn't give you pain, it doesn't hurt to leave it there. I think getting the the urostomy with ileal conduit like your doing is the way to go. It is simpler surgery and I read people live good lives after having that completed. It isn't ideal having to have a bag, I don't want one either, but if you get unlucky to have to deal with these problems I suppose we have only so many options to fix the problem.

[Bladderella]

Re: Facing bladder removal

I'm not sure you can call it a bladder removal if the bladder is left in tact. Why the bladder would be left in tact makes no sense to me and is contrary to everything I know about it. I'm very familiar with bladder removal and the three urinary diversions available and in all of them, the bladder is totally removed. For almost 2 years I thought I had interstitial cystitis but it turned out that I had bladder cancer. I had a radical cystectomy in 2016 and opted for a urostomy bag. I change my bag once every 5-7 days and it takes me about 2 minutes to do it. I lead a full life and I take no meds for bladder issues, I have no pain, no accidents, and no restrictions at all.

[tormod]

Re: Facing bladder removal

I think getting the the urostomy with ileal conduit like your doing is the way to go. It is simpler surgery and I read people live good lives after having that completed. It isn't ideal having to have a bag, I don't want one either, but if you get unlucky to have to deal with these problems I suppose we have only so many options to fix the problem.

Thanks for the encouraging words!

I'm not sure you can call it a bladder removal if the bladder is left in tact.

Yeah, well obviously it's no longer bladder removal if they don't remove it But that's what this thread is called since that has been the discussion up until now.

Why the bladder would be left in tact makes no sense to me and is contrary to everything I know about it. I'm very familiar with bladder removal and the three urinary diversions available and in all of them, the bladder is totally removed. For almost 2 years I thought I had interstitial cystitis but it turned out that I had bladder cancer. I had a radical cystectomy in 2016 and opted for a urostomy bag. I change my bag once every 5-7 days and it takes me about 2 minutes to do it. I lead a full life and I take no meds for bladder issues, I have no pain, no accidents, and no restrictions at all.

I will discuss this further with the surgeon and hear what the possible complications could be if the bladder is left in place.

I guess for cancer the situation would be different, and that they will have to remove the bladder to avoid spreading? I know very little about bladder cancer. But I do know that the same medical staff I visit, treat a lot of bladder cancer patients so I am confident that they know what they are doing.

Very good to hear that you get along well with the urostomy bag! That is very encouraging.

[Bladderella]

Re: Facing bladder removal

One thing you may want to do is to ask the doctor if there are other IC patients who've had the procedure whom you can speak with. My own surgeon has referred several of his patients to me to talk to about radical cystectomy and post-operative care with a urostomy bag before they went through the procedure themselves. I was able to answer their questions and talk to them about the experience from a patient's point of view. I did the same thing myself before my own surgery and I found it really helpful. Just a suggestion.

[neohioic]

Re: Facing bladder removal

Hi Bladderella, that is why I want my bladder removed. I'm tired of IC. I'm tired of always being in and out of pain. Each time I use the toilet I"m thankful I"m not using a bag yet, but dealing with this illness sucks. I don't think it it worth living like this for years and years. I think after a couple years of fighting it is worth getting the bladder removed. I'm going to try a pain pump trial first though. I have to wait a couple months for my scheduled appts.

[tormod]

Re: Facing bladder removal

After a few weeks of contemplation I had a final consultation at my hospital today. I am now being referred to another hospital for surgery to create a neobladder. So the bladder will have to go, finally. I must admit that this has not been an easy decision, and I am quite nervous about it. But I have nothing left now, my life is all about self cathing 20 times per day. I hardly sleep and I can’t work. This has to end.

[ICNDonna]

Re: Facing bladder removal

After a few weeks of contemplation I had a final consultation at my hospital today. I am now being referred to another hospital for surgery to create a neobladder. So the bladder will have to go, finally. I must admit that this has not been an easy decision, and I am quite nervous about it. But I have nothing left now, my life is all about self cathing 20 times per day. I hardly sleep and I can’t work. This has to end.

I'm so sorry you have reached this point. Please know that I will be thinking of you and I will want to know when you are being scheduled and how you are doing.

Warm hugs,
Donna

[neohioic]

Re: Facing bladder removal

Well, what your dealing with currently sounds terrible. I hope your surgery goes well, and I hope your suffering can come to an end. Please keep everyone updated after your surgery. So everyone can learn about your journey in the hopes it helps others.