Does pain remain after bladder removal?

[jcm1]

Hi, I am wondering if anyone has had their bladder removed and still experiences pain? Has anyone had any other problems caused by having their bladder removed?

[yvette]

I've heard that can happen...that the pain can remain or come back later on. I've also heard that IC can go and invade the "new" bladder if its internal one, made of your own bowel.

However, I imagine there are many success stories out there too! :)
I hope the others gals who've had this done will post, as they are much better informed and can tell you their own personal experience better than I (I have not had my bladder removed).

[momuv4]

I am scheduled to have my bladder removed on April 11 and have been doing lots of research before I go through this. The doctor who is going to do this is at the cleveland clinic and he works about 100% with female and mostly IC patients. I asked him specifically phantom pain and he said he could give me many names and numbers of patients who have had their bladders removed and have not experienced that. He said they couldn't be happier. He truly believes this is a myth and that the pain they experience afterwards is other issues. Good Luck~~
Lisa

[curlycue]

Lisa,
I will be praying and thinkning about you on the 11th I am putting on my calande. I think phamtom pain is a myth as well. One thing I would like to know is if a person has fequency wich is my case how does a person feel once their bladder is out! I dont know if that makes sence or not!

[Judith56]

Okay ladies, this is my experience. 18 years ago I had an augmentation done- this meant that they took out most of the bladder and just left the base.They then built onto it with part of my small bowel. I had to catheterize myself because I went into permanent retention. Within 8 months the new bladder had been totally invaded by the IC.(This does not happen when the whole thing is taken out and just a conduit or internal pouch is made from bowel-only when it is still conected to the IC bladder.) Everything had to be taken out along with my urethra (Yea!) and I was given an ileal conduit. I had a small stoma(opening) on the right side of my stomach about an inch from my bellybutton and down about two inches from it. I wore an extrenal pouch over the opening to catch the urine. In the beginning I still had the feeling of needing to pee, but with time it went away. To help with the feeling I would go sit on the toilet till it passed. Immeadiatly after the surgery all the urethral pain I had was gone. Other than normal surgical pains I was fine. I did begin to get repeat infections and that was due to problems with my stoma and conudit. I had to have them revised, and 6 years later I had the whole thing taken down and was given an internal urostomy pouch made from more bowel. I now have a very tiny stoma just above my pubic hair. You have to look hard to see it. I catheterize it several times a day to drain the urine and I only wear a type of band-aid over it. I am extremely happy with what I now have. I do wnat to stress that of all the people Ib have spooken wiht the ones who seem to do better with the surgery seem to be people like me, whose main symptom is frequency and not pain. I had an extemely small bladder that had become so scarred it was no longer considered a bladder, since there was no muscle left. It had bands of fiber growing in it, something the uros who had evalutaed me never had seen. I had no choice it had to come out. I would do it all again in a heartbeat. I do get infections, but I would much rather deal with them every few months than deal with IC on a daily basis. Everyone is different, just as this disease has manifested in us differently we all will have somewhat different stories to tell as for our surgical experience.
Lisa, please feel free to ask me anything! Cleveland Clinic is wonderful! Hugs, Judith

[curlycue]

Judith,
I am glad that you explained that whole procedure. Man you have gone through alot. I am glad there are nice people like you that are willing to share this info with us. You are a wonderful ladie
Thanks
Ruth

[Judith56]

Thanks Ruth, but I am really doing to give to others what was not available to me when I was going through all this. I had only one person who had been able to answer some of my questions as she had been through it all. Back thne they RARELY did the surgfery for this and at that point in time many uros still didn't believe that IC was real! So even though it isn't the best thing to be diagnosed with, you are all so much luckier to be getting it now that they have such an arsonal of things to try. 27 years ago when I was diagnosed they only had a few drugs to try, Elmiron was not out- it wasn't even in trial yet! I had hypnosis, hydro's, DMSO,bladder training and a few other things, but nothing worked, so maybe that is why I got to the point I did. Look I think you should all try what ever you can to remain with a bladder, BUT if it comes to it, losing the bladder is not the end of the world. In fact for many ti is a chance at regaining a normal life. I can not tell you how strongly I feel about supporting those who have to come to this decision- they and thier doctors are the only one's who truly know what needs to be done. :bunny: Judith

[curlycue]

thanks again Judith

[mayray518]

Judith i read your post and found it very interesting. Dont you think that since the new bladder got IC that it must be something in the urine causing the problem. The reason I say this is because of the data out that the antiproliferative factor (protein in the urine) may be the cause of IC. I was in a test at the University of MD eight years ago and my urine had the protein in it.

[ICLori]

Hi, Mayray, you are absolutely right I think. They have found it is the bladder itself that produces the APF, and not the kidneys or ureters or anything else. Just the bladder.

In the old days, they would leave the urethra and the base of the bladder, and take part of the bowel to augment the bladder. When they did this, the APF was still produced by the base of the bladder (and maybe the urethra too?) and so of course the new bladder ended up with IC too.

I was surprised recently when a member who used to be on the boards, got an augmentation instead of a neobladder. I am very worried that his augmentation will get IC too, because that seems to happen in every single case. I have never heard of an augmentation succeeding for long, and was surprised that doctors still do that for IC these days with what they know.

If they form a bladder completely out of new tissue, not using or leaving any real bladder tissue, then they don't get IC again. It's only if some of the bladder is left behind.

Blessings, Lori

[Judith56]

I agree with Lori in that because they leave the base of the bladder either something in the bladder itself is causing the IC. Becuase they left just the base or trigone in me the IC then spread to the new part. I have heard that many uros no loonger do augmentations for IC because of this factor. Some people who do get augmentations done do not have the IC spread, but as far as I know this is pretty rare. It always sets a red flag for me when I hear of an IC'er getting the surgery done, but it is not my place to tell the person not to have the surgery. All I can do is tell them my experience and encourage them to learn all about the upcoming surgery as well as asking lots of questions of thier surgeon. When I was diagnosed and having my surgeries it was 18 years ago, long before they were doing the types of testing that they now do. Judith

[ICLori]

P.S. Just wanted to say, it's not just my guess or my opinion that the anti-proliferative factor Dr. Susan Keay found is produced only by the bladder - it's a scientific fact the researchers have discovered.

I will try to find the research article and post it on this thread so you can see.

Since it is the APF stuff that causes IC, and the bladder produces the APF, unless you remove the bladder or get the bladder to stop producing APF, the IC remains.

Blessings, Lori

[ICLori]

Here's part of a research publication on this. If you read the second paragraph, you see they have discovered this APF stuff is only produced by the epithelial cells of the bladder of IC patients...

Blessings, Lori

Laboratory of Proteomics and Analytical Technologies, SAIC-Frederick, Inc., 2Structural Biophysics Laboratory; 3Laboratory of Medicinal Chemistry, National Cancer Institute, Frederick, MD, 21702; and4Division of Infectious Diseases, Department of Medicine, University of Maryland School of Medicine, Baltimore, MD, 21201

Interstitial cystitis (IC) is a debilitating chronic painful bladder disorder from which approximately one million Americans suffer; its etiology is unknown. Abnormalities seen in the bladder of IC patients include petechial hemorrhages, ulcers that extend into the lamina propria, and thinning of the bladder epithelium to 1-2 cell layers. A novel antiproliferative factor (APF) has been described in the urine of 94% of symptomatic patients with IC that was determined to be uniquely produced by the bladder epithelial cells of these patients (1). The purified APF factor can induces several changes in normal bladder epithelial cells, including significantly decreased rates of proliferation [I](2).

Microcapillary reversed-phase liquid chromatography (µRPLC) coupled online to an ion-trap mass spectrometer (MS) operated in a data-dependent tandem MS mode was used to analyze urinepreparations from IC patients. Microcapillary RPLC-MS/MS analysis of a biological isolate from the urineof patients suffering from IC and de novo sequencing of the active fraction resulted in the identification of a small O-linked glycopeptide (N-acetylneuramic acid/Galactose/N-acetylgalacosamine-TVPAAVVVA) with potent bladder epithelial cell antiproliferative acitivity. The amino acid sequence of this peptideshares 100% identity with a segment in the sixth trans-membrane domain of frizzled 8 (amino acids 541-549), a receptor for Wnt proteins. Northern blot analysis demonstrates that APF is expressed solely inthe bladder epithelium of IC patients with no expression evident in normal human bladder epithelial cells in vitro. 826.5 100 N-acetylneuraminic acid Glc/GalNAc Hexose Relative Abundance (%)∆ m/z = 203 ∆ m/z = 162 ∆ m/z = 291.3 1029.5 50 719.5 b8-H2O 1482.8 b7-H2O 1191.5 400 500 600 700 800900100011001200 1300 14001500m/z 0 737.5 b8638.4 b7620.3 529.3 y6igure 1. Tandem MS of the molecular ion at m/z = 1482.8. De novo sequence interpretation of this agment ion spectrum indicates the presence of a small peptide glycosylated with N-acetylneuramic acid-exose-N-acetyl(glucose or galactose)amine. FfrhProceedings of the 52nd ASMS Conference on Mass Spectrometry and Allied Topics, Nashville, Tennessee, May 23 - 27, 2004
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Page 2
Thr-Val-Pro-Ala-Ala-Val-Val-Val-Ala N-acetylgalactosamine Sialic acid ctoseC. Retention Time (min) 010 2030 0.0 1.0 40Figure 2. Total synthesis was conducted to generate both putative glycosylated forms of APF: Gal-GlcNAc-TVPAAVVVA (A.) and Gal-GalNAcTVPAAVVVA (B.). Each of these glycoforms was used tospike an “as isolated” APF preparation that was desialated. The two spiked APF samples were analyzedby µRPLC-MS/MS. The ability to resolve both glycoforms allowed the determination of native APF to be (Sialic acid)-Gal-GalNAc-TVPAAVVVA (C.). AcknowledgemeThis project has been funded in whole or in part with Federal funds from the National Cancer Institute,National Institutes of HeaCon. NOcontent of this abstract does not necessarily reflect the views or policies of the Department of Health and Human Services, nor does mention of trade names, commercial products, or orgS.Government.GalaRelative Ab) undance (%12.110.0 2.0 3.0 Synthetic Gal/GalNAc-APF 1.0 2.0 3.0 12.7012.14Synthetic Gal/GlcNAc-APF APF A. B. eferences. Keay SK, Zhang CO, Shoenfelt J, Erickson DR, Whitmore K, Warren JW, Marvel R, Chai T. (2001) rology 57, 9-14. . Keay S, Zhang CO, Shoenfelt JL, Chai TC. (2003) Urology 61, 1278-1284. ntslth, undertract No1-CO-12400. Theanizations imply endorsement by the U.R1U2Proceedings of the 52nd ASMS Conference on Mass Spectrometry and Allied Topics, Nashville, Tennessee, May 23 - 27, 2004

[DebbieD]

Hello Everyone! It has been a while since I have posted. But after a urostomy for 20 years and 3 revisions and this Past September I had my Kidney removed I think I am finally getting Better.It has been 6 months since the Kidney has been removed and I have not been in the Hospital yet. :) Come to find out the Kidney was Dieing , But all X-Rays showed that theKidneys were fine. But once my Doctor got in and looked at the Kidney, Well he changed his Mine. :) .He said it looked like a Burned tree that was falling off. But in the Past I have been in the Hospl every month for the Past 20 years It finally came down to the Kidney.IC Just took control and ate it s way to the Kidney. So It has been 6 months since the Kidney has been out. I have not been in the Hospital sence! :)

Hello Judith! How are things going?

DebbieD

[DebbieD]

I still had my Pain after my Bladder was removed 20 years ago. I have had 3 revisons done and just recently had My right Kidney removed. My Doctor Just can not expLAINED why this happens to some people and others it does not.
But I feel so much better since my Kidney has been out. I had a Blockage after Blockage. He called it ( Hostiel Urine) A germ that is In IC and it just eats it way through everything.

If I can Help Feel free to e-mail me. As the Saying goes (been there and done that)

DebbieD
ldurham@comcast.net

[curlycue]

WOW is all I can say. Good Luck. You go Girl.

[mayray518]

Interesting, Lori. I was tested at the University of Maryland years ago and I do carry the APF. However, elavil is the only thing that worked for me. I know it smooths the muscle and is a pain blocker but, in my case, it is enough to overcome the damage the APF does.

[Judith56]

I was never tested for this as it was so long ago.It is amazing how far they have come since my initial diagnosis in 1978,Judith

[DebbieD]

Well Now that Half of My body has been out I don not feel much Pain anyone. Alot has been out.

hahah

DebbieD