Please help with bladder removal decision

[Lisa R.]

Hi, I am new here. I am end stage IC. Have been reading the posts. Was just told yesterday that my bladder is beyond help, won't stretch anymore and the pain is out of control. Have had IC since 1988. Have had all the treatments. My urologist is leaving the decision to me. Have been reserching this for a while cause I saw it coming. My uro. said that I have the smallest bladder that he has ever seen in an IC patient. I can tell, have to pee almost every 10 mins. I have talked to 3 urologists including Dr. Hanno at Temple in Philly. My biggest concern is phantom pain. I can handle the ostomy and the bags but don't want the pain anymore. I work for a very well respected pediatrician and he and the other nurses in my office are behind me 100%. I just got married a 2nd time to a wonderful guy. (He is guitarist for a band that was famous in the 80's!!) Any advice you can give me would be much appreciated. Thanks!!

[auntiedeb]

Hi Lisa and welcome to the boards. I will be praying for you. I am behind you 100 percent. Keep us posted on how you are doing. Kara on the board had her bladder removed. Her story is under ic patients stories and you might want to read her story and Iknow that she talks to people over the telephone with them. Keep us posted.

[Lisa R.]

Thanks guys the support is real helpful. For May, I live in Lake Mary, FL. I have been doing my research. I am thinking about FEB. to have the surgery done.

[Iris]

Hi Lisa and welcome to the IC family. I will certainly say a prayer for you and hope that when the time comes for your surgery everything will go well for you. Sounds like you have had a very rough time with IC and my heart goes out to you, the pain is wearing enough without having to practically live in the bathroom. Congrat s on you marriage, who did your husband play with in the band if you do not mind me asking? My husband many years ago was a musician, he used to play drums, so the music is still in his blood. In fact now he sings, country western, he is pretty good at it. Well Lisa once again all the best to you and keep us posted, hugs Iris hi grouphug

[michaela]

I know there are some people who would never go that route but you have to do what's best for you and your family. I would be right in your shoes if I was ever faced with that. I am behind you guys 100%. let me know if i can help!!

michaela

[auntiedeb]

You are so welcome Lisa. I will be praying for you and please keep posting on how you are feeling and read the other boards and let us know alittle bout you too. congrats on your marriage too. Hope you feel better soon. gentle hugs and healing thoughts to you. grouphug grouphug grouphug angel angel angel

[ICNDonna]

One thing you could do is to make a "pro" and "con" list --- in one column, list the potential benefit from bladder removal --- in the other, the possible adverse reactions.

And remember --- you are currently in constant pain --- you may need to consider that opposite your concern about phantom pain. Would it be worse?

I think it's good that you are investigating all aspects before making your decision. It's a huge decision and one I hope I'll never have to make.

Sending an encouraging hug,
Donna

[Judith]

Hi Lisa,
As you know you are really the only one who can make the decision. I had my bladder out 18 years ago and have been very happy. My main symptoms were urgency and frequency. I only had urethral pain and as soon as the urethra was taken out the pain was gone. As for phantom pain,I did not have that, but I did have the feeling that I needed to pee. With time it went away and when the urge was very strong I used to go sit on the toilet till the feeling passed.It has been so long since I had a bladder that I can hardly remember what it feels like to have that urge or what it feels like to urinate.I did see a post you made at a another site and I emailed you my addy.Donna made a very good suggestion with the pro and con list. May is also doing the right thing by talking to as many people as she can before making a decision. I encourage you to ask your doctor for names of his/her patients that have had the surgery due to IC.Hang in there. Judith bunny

[Lisa R.]

Hi,
Have an appt tomorrow at a pain clinic. They told me not to eat for 8 hours before and bring my husband to drive me home. Not sure but I think will have some kind of spinal nerve block. Anyone had this kind of thing done before? I'm a little nervous but hope it helps. Just keeping me pain free until surgery. Will let you know. :confused:

[Ginny]

That is exactly what I had done at a pain specialists office. Nerve blocks. I believe I had 6 of them. Was put out. They were nothing to be scared of. It was pretty easy.
I did not get the help I wanted from them but that does not mean you won't. Hope you do.
Ginny

[sue041]

Hello, I too spend a lot of time in the bathroom and have the urgency and all the other feelings with IC including the plain. I am not in as much pain as I was before having the pain pump implanted. I still take oral pain meds, which leads to constipation. I just have one question when do you know if your bladder is shrinking or whatever. I have a lot of bleeding every day along with the leaking urine. I figured the urine thing is from the cystocele and rectocele, sometimes when I feel like I have to pass my urine it feels like it is coming out not from the usual place, is this attributed to the cystecele or from the bladder shrinking?
I do not see a uro, the last time I was there, and my family doctor sent me he said you have IC and there is nothing I can do for you. So now I just go day by day hoping things stay the way they are and don't get too much worse.
Good luck with your decision, you are doing the right and only thing to search all ways and ask all questions. I will keep you in my prayers.
Sue grouphug

[Judith]

Sue, the questions you ask really need to be addressed with a urologist. I strongly urge you to find one who you feel comfortable with and trust. The wya they tell if you are losing bladder capacity is by measuring the amount your bladder can hold under anesthesia. They will get a baseline reading and then with time they will recheck the findings to see if in fact you are losing the ability to hold the same amount of urine. Judith

[Bean]

My doctor said to me find out what the bladder holds thru urodynamic tests. Is it always true?

If the bladder is gone, you won't have one for the new treatmenst that come.

What about botox? chlorapactin? or something else before you take out the bladder? No way to reverse things when the bladders gone. I've seen some of these things talked about here.

[ICNDonna]

Sue, if you have a rectocele and cystocele, they could definitely be contributing to your pain. I have a very severe cystocele and it is causing back pain, as well as bladder pain. I will be having surgery to repair it in early November. My urologist will be doing the surgery.

Warm hugs,
Donna

[Katrina]

I didn't notice any who has already had their bladder removed reply so I decided to give you the option of contacting me. I have my bladder still, but have had my colin removed and now have Pouchitis in what has replaced my colin. Not to discourage you by that, but feel free to ask me any question about what that was like if you think it may help. Currently thinking I will have a hysterectomy in the near future. So I am facing that dicision with a lot of fear myself. Best of luck to you.

[Judith]

Hi Katrina, I did have my bladder removed over 18 years ago. There have been so many responses that I guess you didn't notice mine. While it has worked out well for me, I feel that everyone is different and all options should be explored. I currently have a continent pouch like you and yes, I have had pouchitis, but in some ways it is a little different for uro pouches. I also had a total hysterectomy done 2 years so I would be happy to answer any questions you may have. A great website for hysterectomies is www.hystersisters.com (http://www.hystersisters.com) Judith bunny

[Bean]

What is pouchitis?

[Judith]

Pouchitis is an inflammation of the pouch. It is an infection of the pouch itself and needs antibiotics to control it (usually). Judith

[randysarner]

Hi Lisa, Though i still have my bladder and am new to ic... My dad had bladder cancer and had to get his bladder removed.. he however opted for surgery that replaced his bladder with a part of his intestine... This surgery was tough to come by.. my mother and i kept calling and begging the specialist who did this surgery.. now i know he is very lucky for this was 10 years ago and the man is doing great. he just has to watch his electrylites cause the "intestion bladder" does not produce any. I don't know if you have this option or not... perhaps its something to research.

He didnt even get the daisy spout which some people get. His doctor has unfortunately passed away but i do know he was training others while my dad was under his care....

Either way you go... my thoughts and prayers go with you
angel angel angel angel

[Sarah Liz]

My great aunt has IC and she is considering having her bladder removed as well. She has had IC for over 20 years and is 85 years old. I am so thankful that I found this website because it has been very helpful in educating me about IC and reading your stories has helped me so I can better understand her. My aunt has told me numerous times that she feels alone, and I see that many of you have said the same thing throughout this site. I realize she's miserable, but at her age I don't see how a cystectomy would be a good idea. Am I wrong?

Because she doesn't have access to the internet, I am trying to look up information myself to provide for her. Auntiedebbief, you had mentioned in your post that Kara has had this surgery and her story is under Patient Stories, but I couldn't find it. Can you please direct me to the right place?

Also if any of you could please offer advice as to the best way for me as a family member to help my great aunt? She lives alone and cannot drive and she does not know anyone else with IC to talk to. I know I cannot relate, but I still would like to be there for her.

Thanks a bunch,
Sarah

[ICNJess]

Hi Sarah and welcome!

Here is Kara's story: http://www.ic-network.com/patientstories/kara.html

Anyway that we can help you and your aunt out, just holler! :) We're here to help!

Hugs and love,
Jess grouphug

[Judith]

Sarah, has her doctor suggested the surgery or is she just wanting this on her own? What is her health like? This is really BIG surgery, so because of her age, if she can manage her symptoms at a tolerable level, this may not be the best move. I would encourage her to discuss all her options with her urologist. I have had the surgery, so I know how hard it can be on the body. I think it is great that you are being so supportive. Judith bunny

[Katrina]

My Pouchitis is chronic believed to be auto immune, infact, they believe I had (or have) Chrones disease in the portion of my small intesties that is now my Pouch.

[Sarah Liz]

JessicaS -- Thanks so much for directing me to Kara's story. I appreciate that.

Judith -- I am not sure if her doctor offered her this as an option. I am with you - at her age, this is probably not a good move. But somehow she got this idea in her head that this is her only other alterntive. Other than IC, she is in good shape physically, but her mind plays games with her a lot so I cannot be sure if her doctor really suggested a cystectomy or if she just thought he did.

Thank you both for your responses.
Have a good weekend,
Sarah

[DebbieD]

Hi! I have had my bladder removed for 20 years now. Weight your Opions. I had IC really Bad. I had the small bladder and Hunner's ulcers that bleed like Crazy. I went through so many surgeries before I had my Urostomy. I now have had 4 revsions and now facing removing my Kidney. Like Others have said get all the Facts and make sure this is what is you can handle.Everyone is Different. Pray and Ask Questions. Get all the Facts Okay.

Take Care.If you have any Questions I can help you on just e-mail me Okay.
ldurham@comcast.net

DebbieD

Make a list of Pro and Cons. You are in my Prayers

[Kara]

Lisa,

You may want to check out my bladder removal story. http://www.ic-network.com/patientstories/kara.html

My bladder could only hold 80ml or 80cc's. I peed every 10 minutes too.

We may have lots in common! blink

I am pulling for you to have healthier days ahead!!!

Email me if you need a bladder removal buddy.