Diversion vs removing....help!

[melanie626]

Hi All...
I am at the point where these are my options. I have tried pretty much everything under the sun and the only things not tried are cyclosporin for a variety of reasons but mostly b/c I work in healthcare and am exposed to LOTS of stuff and I have a diabetic spouse and 2 kids under 4 and botox which my insurance won't cover and they don't know it would help.

So. My Uro likes diversion to ostomy and then if pain better in a year make a neobladder and cath that. I don't like the idea of leaving a dead empty bladder in there. Plus I get TONS of urethral pain/spasms and though nothing would be going out of it a)I still think it would get irritated b/c I do have pelvic floor issues and b) how would I ever know if I got bladder cancer etc since it is just this dead organ in there and c)like it is ever gonna be hooked up again. Give me a break. SO I would love to hear others stories.

I have weirdly good capacity on my last hydro.....and glomerulations but nothing spectacular, no hunners but my last hydro was with capsacian over 2 mo ago and I swear now little men have replaced my ground glass pain with little razor spikes they like to slash into my all damm day.

I get solid relief usually if not to flared from an instillation but alas it only lasts until I pee it out and if I have held it to long then my am all achey and angry inside because pee sat inside to long.

Please give me your stories ladies. I am not married to my Uro. I love him, he is in the IC world but I dont' necessarily agree on keeping a bladder I am not using around. Thoughts?

Thanks ladies, this is hell on earth and somethings gotta give.

Serenity to all.

Melanie

[Judith56]

I don't understand why some uros are leaving the bladder in and doing diversions, because the reality is that the bladder does not work and even if the diversion was totally successful the existing bladder is diseased and why reconnect it if it is in such bad shape? The other thing to consider is that why go through two surgeries when they can take everything out when they do the diversion. When I had my bladder out they also removed the urethra at the same time and I no longer had issues of pain in the urethra. I have heard many stories of doctors leaving the urethra and the patient still having symptoms. As soon as the remaining bits were removed they got relief.
I strongly encourage you to seek other opinions, I know before my surgery I went to see three other uros for their opinions. In my case they all said removal was really my only option.

[GatorGirl]

I was wondering what is a diversion?

[Judith56]

A diversion is when they reroute where the urine comes out of and/or also where the urine goes after it leaves the kidneys

[melanie626]

Thanks

Judith, thanks. See, makes total sense for all I have seen over the years. I have been on the boards for almost 10 years and everyone says when they don't take the urethra they still have pain. I know it is a bigger surgery but like if your in there, like take it out.

OK...I am planning on getting opinions but my questions are what type of procedure did you have? Do you have a neobladder to cath? Did you get it at the same time as the removal and did you have a ostomy for awhile?

Trying to figure out how they do it into reference of how my sister had her colon and pouch removed (arent we a family of useless major elimantion based organs or what)?

Thanks

[Judith56]

Melanie- I have had many surgeries, the first of which was an augmentation that was not successful. The next surgery was a cystectomy (bladder and urethra removal) with an ileal conduit. I had difficulties and after having one revision of my stoma I had it switched over to my continent pouch also called an Indiana pouch. All my surgeries took place over a span of 7 years. I currently cath my pouch.

[shelleytn80]

Do you like your Indiana pouch? Have you had any issues with it?

[Judith56]

I love my pouch. I do have some issues, but they are due to other health stuff I have.

[melanie626]

Hi

Judith-
Thanks.....you did a great job explaining. Can I ask the issues you have, you can PM if you prefer. At what age did you do this? How long ago again?

I basically am on my 2nd consult of 3. Excellent MD's in my area and so my current MD consult is to try a superpubic catheter to see if constant emptying via cath w/o bugging my tender urethra will give us an idea if I am a good candidate for removal. That is scheduled for the 19th of Sept. I then get my 3rd consult on the 20th......crazy. Hypothetically it makes sense and i know It won't be a perfect trial but it will give me an idea if constant emptying lessens symptoms. It sounds like you went through a lot but then I am sure now they have learned that certain things more sense with IC patients.

They "cherry pick" the candidates and they feel I am a good one except for my volume under anesthesia (but we are not treating my bladder volume). But of course no one wants to do it....you know how that goes.

Can I ask how many times a day you cath and do you have to wake up at night to do it? Does it vary at times or is pretty routine now?

Also, they wanted to know if I want a hysterectomy.....b/c Im sure they do it fairly routine when they do these large surgeries and what MD wants to take out my uterus in years down the road with a belly full of a new bladder.

Ok....would love any other info. I love how helpful you are Judith. I can't thank you enough. It feels pretty lonely these days. If I was a cancer patient it would be easier b./c my choice would be less scarey, just take it out.

But Im so tired. Got home and was peeing and just had this massive shooting urethral spasm that nearly took my breath away...like now I sit, missing dinner with my kids to heat and ice myself.....drugged up as always.

Anyway, Thanks so much.

XO

Melanie from CA

[IC/IBS Hopeful]

I had my bladder removed in 2008. I also had the choice of diversion, 95% or 100% removal. Before we got this far they put in cystotubes (can't remember the name) they put tubes in my kidneys to devert the urine from going into my bladder to see if not having urine in my bladder would help. It did so we scheduled surgery. I would caution u on not removing the whole bladder that was my big mistake. If you would like more info of my experience e-mail me and I will tell you my story. [email protected] I live on the east coast so if you do more this way there are some great places for care around.
Lynn

Judith-
Thanks.....you did a great job explaining. Can I ask the issues you have, you can PM if you prefer. At what age did you do this? How long ago again?

I basically am on my 2nd consult of 3. Excellent MD's in my area and so my current MD consult is to try a superpubic catheter to see if constant emptying via cath w/o bugging my tender urethra will give us an idea if I am a good candidate for removal. That is scheduled for the 19th of Sept. I then get my 3rd consult on the 20th......crazy. Hypothetically it makes sense and i know It won't be a perfect trial but it will give me an idea if constant emptying lessens symptoms. It sounds like you went through a lot but then I am sure now they have learned that certain things more sense with IC patients.

They "cherry pick" the candidates and they feel I am a good one except for my volume under anesthesia (but we are not treating my bladder volume). But of course no one wants to do it....you know how that goes.

Can I ask how many times a day you cath and do you have to wake up at night to do it? Does it vary at times or is pretty routine now?

Also, they wanted to know if I want a hysterectomy.....b/c Im sure they do it fairly routine when they do these large surgeries and what MD wants to take out my uterus in years down the road with a belly full of a new bladder.

Ok....would love any other info. I love how helpful you are Judith. I can't thank you enough. It feels pretty lonely these days. If I was a cancer patient it would be easier b./c my choice would be less scarey, just take it out.

But Im so tired. Got home and was peeing and just had this massive shooting urethral spasm that nearly took my breath away...like now I sit, missing dinner with my kids to heat and ice myself.....drugged up as always.

Anyway, Thanks so much.

XO

Melanie from CA

[Fiona R]

Hi Melanie,

The previous post re trying a Nephrostomy before making any big decisions was the best way forward for me.

Getting the Nephrostomy was horrible but it did make me realise that diverting the urine solved my pain. I had a ileal conduit in 2003 and then tried to have a continent diversion in 2006 but this failed and I had a revised ileal conduit done.

The choices are terrible but the IC is worse. I now have IC in my ureters and my urologist thinks that this has gone into my kidneys. As I suffer from excessive scarring when I get biopsies then he feels that it's best to err on the side of caution and to manage my symptoms without confirming that it's definitely in the kidneys.

The negatives of leaving the bladder are that sometimes I get an urge to pee and this is just a piece of lining detaching, but it passes very quickly.

The positives - what if they find a cure? I know it's a long shot but I have to cling onto it, as I cannot imagine spending the rest of my life with the bag (I'm only in my 30's!).

I wish you all the very best in your next step.

Take care,

Fiona

[OllieR]

Hi Melanie, I commented to you on another thread too, and saw this as I was pursuing advice since I recently had a suprapubic put in. I am not sure the nature of your IC. I had this put in instead of a bladder removal because my urologist wants to see if some of my pain and symptoms come from the fact that I strain my bladder every 10 minutes. (In between the frequency my muscles clench so tight I cannot pee at all - then I'm cathing myself all the time and that is just too painful for me to literally stand) I tried other methods of muscle relaxation - physical therapy, bladder training, etc, but nothing worked. We are going to see if the diversion gives my muscles and bladder a break from the constant straining of pain and peeing and if my symptoms are helped after a reversal. I, too, had more capacity under G.A. then I could ever have awake. Not very good, but because it's not horrible to the point of no return he just wants to make sure that it can't be fixed by muscle and nerve relaxation (I have had success with nerve blocks, and am getting a series done now). We do not know if any of this can help, but we are trying! As you know, there's not a lot to go on since cases of IC this complex and bad aren't seen all the time (plus the fact already that every ICer is already different.)

He did say this is temporary due to the issues you have all already mentioned. He said a couple months. I figure I'll have it in through the holidays now. So far I am still having bladder pain but am enjoying not having to go to the bathroom all the time. Plus I sleep much better at night! That has definitely improved my sanity. If this doesn't work I may have to have my bladder removed, and though it has been seriously brought up with him for several months now, I'm not quite there yet.

Getting other opinions is great. I hope that can help you make a decision you are comfortable about. I have heard the same things all of you have mentioned about not leaving a dead bladder in your body. If you ask him the specific reasons behind the diversion and mention the same concerns you have here it should help a lot.

I would love to hear back about where you are now. I hope that one way or another you are finding some relief or are working on a good plan with your uro. You're young too right? I love how all my other friends are starting their lives, getting married, going to professional schools, having a baby, and I'm housebound sick beyond all belief. I'm hoping I can get out some with the diversion.

Oh, and I was told that if I had my bladder out he would take out all of it with the urethra and I would cath through my belly button. I may or may not get to keep my uterus, but I've already been told by my gyno kids of my own are a long shot so that's not as big for me as it may be for some. I would like really really consider the hysterectomy thing. If you lose the uterus, you can't have kids. Am I not right that if you have everything taken out you'll go into menopause right away? Something to think about.

[melanie626]

Hi

Thanks all for the great messages. I PM one of you and am about to embark ona trial of a bunch of stuff with my New Uro. It was a LONG drive and visit yesterday and I am used to West Coast living and my Uro 45 min away, not 2 hr but he was nice and is on the boards here and I guess knows his stuff. So although I am still feeling very very vulnerable and moving, being on meds for hives (prednisone) is making me a bit weepy I am glad he is picking up where I was kind of leaving off. He opted NOT to do nephro tubes b/c he thinks i will be miserable. We are doing a s/p cath trial, some botox to the bladder floor, another hydrodistensions since he will be there and he might do some botox to the pelvic floor.

He took me off my levorphanol and put me on a pain patch and then ordered vaginal valium. He thinks my pelvic floor issues might be worse then the IC but he agrees the IC is bad and that since I have a good capacity under anestheisa welll then....like you both mentioned. The thing is, I am not living life UNDER anesthesia and he said, OK what if your only 50% better, well if I am not chained to a toilet and can take some pain meds but run and jump and lose my weight and play with my kids then life is good, right?

OH. This is so hard and I feel so alone. I would love any support from you all. My spouse and I just moved cross country for his job and I am not working to "get this handled" and it is painful and scarey and like UGH. I have no friends or family here but did meet a very nice IC girl near by online so that is nice (anyone in NC, shout out to me).

Anyway, looking foward to hearing from you.....