Understanding this forum

[icnmgrjill]

When I first added the bladder removal forum, I had no idea that it would create as many issues as it does. Yes, there is no doubt that some patients may explore bladder removal as a treatment for their bladder pain but it is essential that we all understand that this is RARELY done for IC because so many more therapies are now available.

In any case, this board became password protected because it was frightening newly diagnosed patients who mistakenly believed that they, too, might one day need their bladder removed. All it takes is reading one post from a patient who has had difficulties and the newly diagnosed patient can become frightened, often unnecessarily.

The second issue was that some newbies began to believe that they could have a bladder removal before trying other therapies to just "nip it in the bud." This is a MISTAKE. Bladder removal is a serious, serious procedure that WILL have life altering consequences. It should only be considered once your personal physician has suggested that you have no other treatment options available.

Here are some rules that I'd like you all to apply as you use this forum.

#1 - Post balanced information. If you've had a success with it, great. But, let's not tell everyone that this is an easy procedure. We're all different and we all would have different experiences in the OR.

#2 - Try not to scare others. Please re-read your post before you add it to the forum to make sure that it's not unnecessarily scary.

#3 - Build your personal support team and use PM's for direct support too.

#4 - Please do NOT share this password with others. All password requests should go through Judith, Donna or myself.

#5 - Any disputes you have with other patients posting in this forum should stay private. We do not want any public personal fights here.

#6 - Respect the moderator. Judith is the first line of management with this board. If you have any questions about it, it should go to Judith, then Donna and, if needed, me.

Good luck and my best wishes to anyone considering bladder removal. I remember begging my doctor to remove my bladder the first summer I had symptoms and he refused stating that I hadn't tried the best therapies yet. I'm so glad he said "no" because I did respond well to therapies and self help.

Jill

[Trishann]

Jill, thank you for keeping bladder removal in. I know this is not a fix all and I guess that is why I am holding on as long as possible. But in reality, this might be my case and it is nice to know that I will be able to talk to someone about it. I know it does scares others, and that is not good. But again, thank you for keeping it so we have someplace to go.

Hugs, Trishann

[marsi4]

I also want to thank you Jill, for allowing us to have access to the bladder removal topic. For me it's the only support I have besides my family and it is a source of first hand information from patients themselves who have had a cystectomy and can share their experience and knowledge with others who are considering this surgery. The information they share is very valuable and imperative to those of us who are suffering and are considering surgery as a last resort. For me this is the only place where I can have my questions answered and feel that there is still some hope after everything else has failed. I want to thank the people who have had a cystectomy for sharing their experience, and knowledge and for giving others hope, courage, support, compassion, and the strength to help us get through a very difficult and scary time in our lives. This board is a blessing to ic patients.

Marsi4

[puskafee]

I don't understand this forum - I am a bit confused

After having 24h/24 pain and urgency for more than 6 months already, and oral Elmiron and DMSO/rescue instills for months, and NO pain medication that helps a single bit, I am exhausted. I haven't slept for more than 3 hours in one part at night for more than a year.

So, I am considering bladder removal, and I am surprised to hear that there are other options that should be tried first.. In my opinion none will be successful for me.

I am confused when I read about the guidelines etc. for this forum. All I want to know is if bladder removal will end the pain by asking if it was the case for the people who have had bladder removal.

Kind Regards, Peter

[SharonA]

Peter...This is a very old thread. If you want to read more about bladder removal on this Forum, you can do so by scrolling down the "Forum Home Page" until you come to the "Treatment for End Stage IC" Forum...Click on "Bladder Removal"...Scroll down to the bottom where you will find a box that looks somewhat like this:

Display Options Currently Active Users Moderators
Showing threads 1 to 1 of 1 6 (1 members & 5 guests) Moderators : 1
Sorted By ...............Sort Order
From The ...............Show Threads

You can then use the drop down box in the "From The" area to click on "the beginning"...click on "Show Treads". You will then see all the posts that have been submitted on this subject from the beginning.

You could also start a new thread if you do not find the answers you are looking for in the older threads.

I hope this helps in your search...

[Katrina]

In addition to what Sharon has said Peter there are tons more treatments than you named to try. Bladder removal is permanent and life changing surgery. In addition to rescue instillations, antihistamines, antispasmodics, anticonvulsants, antidepressants, there are Pelvic Floor Dysfunction therapies and IBS that often contribute to IC pain. There is also more minor surgical options and things such as treatment on the nerves that can be more drastic than medication but should be considered before bladder removal. That is the reason this forum is the way it is. Because the options are huge!

[Judith56]

Peter, to answer your question if the surgery will end the pain, the answer is there are no garauntees. The surgery is usually most successful in people who have frequency with extremely small bladders. It is MAJOR,MAJOR surgery and it is possible that other problems can crop up as a result of the surgery. Your uro would be the best one to determine is you are a good candidate for it. Judith

[andcohen6]

If any one could help me out here with some of the propernames & terms are in all this bladder removal lingo. Firstly what it it called to have your bladder out????or does that depend on what type or surgery is undertaken? I have so many questions about the differences ( internal -external) why would they do an external when they can do internal?
Any info would b great thanks
Andrea

[peebee]

I too would like to say thank you for keeping this option open. I was told by my Consultant 4 year's ago (at least) that I should consider having it removed as he felt it would be the only treatment which would improve my quality of life. I have not succombed as yet and am still trying to find a mix that will improve my frequency and nocturia. For Puckafee, I am so sorry that you are having such pain and distress but it is early on in your treatment. I have not had a night with uninterrupted sleep since I had a hysterectomy in Feb 2000. If I get up on the hour, pee easily and go back to sleep quickly I consider that a good night. People don't believe how little sleep I get but it is possible to get by. Having said that I don't work anymore as I was retired on ill health and I couldn't possibly cope if Ihad to get to work on time in the mornings but please don't give up all hope just yet. It is a very serious thing to do, and while some days, when the pain is bad, and the frequency and urgency are driving me mad I wish that I could wave a wand and have it arranged to be removed immediately, for the most part I am scared of such involved surgery and as Judith said there are no guarantees that your pain will be gone.

[Judith56]

Andrea,the correct term bladder removal is called cystectomy. The term for the external urostomy is called an ileal conduit. This surgery is the most common and is done by all urologists who do cystectomies. It takes the shortest time in surgery and it is easier to recover from. There are many reasons why the patient and the surgeon opt for this one. The internal pouch can go by many names-Koch Pouch, Indiana Pouch, Miami Pouch, Mitrofanoff, etc. it depends on a lot of factors such as which parts of bowel are used, where the stoma is located etc, as to what it is called. This sugery is more involved and many uros do not do it. It is longer to recover from and you must "train" the pouch to hold increasing amounts of urine. You cath yourself to urinate.

[Trishann]

Judith explain it so well and if you go to Urinary Reconstruction and Diversion on your internet and click on the one from clevelandclinic.org, it will show drawings on some of them.

Trish

[andcohen6]

Thank you very much for the replies. After nearly 20yrs with ic & only getting worse I am at the stage that this is the route that I want to take. I know not to take this lightly & it has taken a few years for me to be comfortable with this choice. I have tried anything & almost every choice of treatment here in Australia from western to all natural types of treatments. I have gone to several spec. Dr's over the years & finnally found a Dr who suggested to me have I considered this option as to even her she could see no other option if I wanted to have a quality life. I am only 37 & have missed out on so much of my life becauce of this, I miss not being able to do things with my son he is only 6, I'm angry that because of how this has ruled my life I only will ever be a mother to one ( which I know is a blessing don't get me wrong) but it was ic that made the choice.
So this is not something I am rushing to I just want to research all I can about bladder removal so I have a heap of questions for her.
The Dr wasn't looking at rebuilding the bladder just taking the whole thing out.

[Judith56]

Andrea, for me it was the best option. I was 30 when I had my bladder and my two sons had just turned 5 and 3. Once I was healed from the surgery, it enabled me to the type of mom I wanted to be.

[louise]

Judith - very concerned!

Hi Judith,

Over the course of the last 35 years I have had eleven abdominal/pelvic surgeries plus a couple of car accidents that were not my fault. One of the accidents caused a fracture of the pubic bone and I had surgery to fuse the pubic bone with titanium plates and screws which started to drive me crazy after a year due to the amount of metal that was put in me to fuse the bone because I developed osteoporosis at a young age. At one time years ago, my uro said he would not take out my bladder due to my medical history, but now years later and especially with having a cystoscopy on August 3 which caused a perforation at the top of my bladder, severe pain, going back to the ER and being in hospital for a week with a Foley catheter which I took home with me for another ten days he is not opting out saying that my only choice is to have my bladder removed. Possibly due to the cath. I developed a severe UTI with Klebsiella and was on Cipro 500 mg. twice a day for one week. I am still experiencing pain but no one can give me any idea of how long it will take for the perforation to heal.

My uro found that my bladder is in terrible condition and is at end stage and he is now recommending that I have the bladder removed because it is so thin, scarred, small, etc.

My main concern is that with my medical history of so many years that if I have my bladder removed I will still be left with a lot of pain due to complications from my other surgeries and car accidents. I have had problems with adhesions over the years and had surgeries to treat them but I seem to re-form them quite quickly.

Would you have any comments to make, Judith, regarding my consideration of having my bladder removed because at this point in time it scares the living daylights for me to even think about having this very major surgery.

Thank you for any recommendations and if you would rather communication via PM that is fine with me.

Many thanks,
Louise

[Pipkin]

Growing bladders

I found this amazing article and wanted to share it.

http://ngm.nationalgeographic.com/20...eneration-text

It reports on how organs are being grown, and one fellow in particular has 'grown' bladders from a person's own cells and implanted them in 30 people.
It goes on to say that hollow organs like the bladder are much easier to regrow than solid ones, such as kidneys.

Very fascinating, and brimming with hope.