View Full Version : Can IC attack stomas and neo-bladders?
12-07-2005, 07:23 AM
12-07-2005, 08:12 AM
They may experience the same symptoms of IC. I am not certain if their is currently a IC in pouch diagnosis. Sometimes the nerves send the same message, sometimes the pouch does get inflamed...these possibilities do exist. Hopefully someone (may Kara) can answer you better.
If your considering surgery be careful.
Some Questions to Ask Your Doctor when Considering Surgery
What are the known complications of the procedure?
What is the specific condition of my bladder: capacity, presence of ulcers, fibrosis?
Are there other treatments I should try, including pain management techniques or pain medication, before I consider surgery?
Should I have psychological counseling before I decide on surgery? How do I prepare myself for surgery?
What are the chances I will still have IC pain after this surgery?
If I continue to have pain, how can it be treated?
Is there a chance I will have to self-catheterize after surgery? Will this be temporary or permanent?
How will my bowel function be affected by this surgery?
Will my kidneys be affected after the surgery?
How long will the surgery take, how long will my hospital stay be, and how long is the recovery period?
How will my activities be restricted after surgery?
What conditions require further surgery and what are the chances I will need it?
How many patients have you performed this specific procedure on, and how are they doing?
12-07-2005, 08:13 AM
Ic Can not attack Stomas.I do not know about Neo-Bladders.I had Very bad case of IC and It did sttack my Loop 4 Times and my Right Kidney. The IC Germ is still in my Urine. On my Revisions from the Path Lab IC just was attacking everything in its Site.
My Dr.aid that some People it is Worse than Others and in my Body It was worse and Right Now there is no Cure. We did everything under the Sun to try not to do the Urostomy. But Compared to what I was going through I will wear the bag any day.Now it has Been 21 years with the bag.But Before that we tried everything to try to save it.
s2-Nerve Blovk where they go in the Bottom of your Back to cut the 2 main nerves that comtrol the Pain. That did not Work. So then I was self-cath every 10 minuites. Then he went in and Did a Cecum-cysto Plastic Bladder twice. that is half Bladder and half Bowel.Then on all the Cystos they could see my stomach Linning and My Bladder was about ready to Pop.
Then he Left My Ureatha in so hoping one day it would Work. NOT
Then had to go back and revise it aagain, then 2 other times The Urine backed up into the Kidneys with a 105 temp so they did another loop.
Two More times that happen. So now They did it out of My transvers Colon.
So In 2004 I had my Right Kidney removed caused IC attacked it.
Then again in May of 2005 I had another Blockage. So in September of 05 They removed my Right Kidney. IC was the cause.
Now that does not mean that it will happen to you. But I had Very severe Case and Nothing seem to work.
Anu questions Just let me Know Okay.
12-07-2005, 08:50 AM
MY doc in Boston says that there is no possible way IC can come back into the Neobladder if the entire bladder was 100% removed scar tissue and all. I've called him many, many times with this same questions and every time he reasures me that the IC is not back. Some people may get a condition known as pouchitis..........which is an inflmation of the pouch. I have never had this happen to me yet. I don't know what it feels like, so I can't say if it feel just like IC or not. I think pouchitis may be only something temporary.
Here is what I looked up. "Another condition which is pain caused by inflammation in the small intestine is known as pouchitis. Although rare, pouchitis, may result in temporary failure of the control mechanism because of the hypercontractility of the bowel segment used for construction of the urinary diversion. Appropriate antibiotics will usually result in resolution of these symptoms."
12-08-2005, 07:55 PM
Thank you guys for the info, it has been of great help! :)
Tracy, I agree with you. Even if there is a chance of it attacking the neo-bladder I'd still would go for it too, because if it doesn't work I could always have it replaced with a bag. At this point I don't have anything to lose since this is the end of the line : o
12-09-2005, 05:09 AM
Just Like me for example. They used all my Intestine to Makr my Loops 4 Times. So now i have no more Bowel left. Since they did that I have " Short Bowel Syndrome". Which means Loose stool all the Time. When I eat a Big meal it goes right throuigh me.
If any thing else happems I am up the Creek without a Paddle. They can not redo anything anymore. But When we found out that the IC was attacking the Kidney . We were shocked.
Having your Bladder removed is not a Piece of Cake. There are Good and bad Days.
But having my Bladder removed was my last resort.We tried everything. Believe me it is not a Pretty site either. But his is what I have to live with the Rest of my Life. I try to make the best of it and go on.
My Dr. did not ask me which i would prefer. He just did it cause in my situation this was the best route to take.
Now if my only Kidney goes Bad I will be on the Kidney machine.
I jsut Pray that before Everyone starts wanting there Bladder out Please do alot of Research on it. Ask our DR. all the Questions.
Each person is different. I was blessed to have a Dr. that 30 years ago knew what IC was and Treated me for it.But I still having Problems Cause of the IC.
Belive me I told my DR. that when there is a cure I am the First in Line. :woohoo:
A stoma is also called a Bud. It is shaped like a Rose Bud. It is A red color. It also moves around alot. You can take Showers with your applance Off. It si Better to chage it in the Morning time when it is Less active.
Also you will have Mucous come out cause it is made out of your Bowel do not be alarmed on that. But you need to drink alot of water to keep Bateria from forming.
I hope that everyones understands it. Please i hope that I have not stepped on anyones toes. I am sorry if I have.
Hugs to everyone :grouphug:
12-09-2005, 12:41 PM
It helps to research and find THE BEST SURGEON THAT EXISTS even if you have to go to another state. I want to stress that I went to every specialist in Boston but ended up choosing my original surgeon b/c of his impeccable surgery skills. Surgery of this sort needs to be done by someone whom has done thousands of them and is confident in his own abilities. As mine is. He couldn't even count how many Neobladders he had done for whatever reason wheter it be due to cancer, car accidents, or for any other reason, and this includes IC. I did my research and I am a very educated person and would only choose the best of the best. My doctor is the best in his field which happens to be IC and all kinds of urological surgery including neobladders, Indiana Pouches, and every other pouch that exists as well as urethral reconstruction. Anything that needs to be done, he can do. He's done this for 35 years and is a 100% perfectionist.
I had a full cystectomy which means that they removed my entire bladder and all of the scar tissue aroud it. If there is any trace of IC left in that area, there is a chance it could return. In my case all of it was removed. I had a Neobladder to Urethra Diversion.
This procedure most closely mimics the storage function of a urinary bladder. With this procedure, a small part of the small intestine is made into a reservoir or pouch, which is connected to the urethra. The ureters are repositioned to drain into this pouch. As with the Indiana Pouch, this downward flow of urine from the kidneys into the pouch helps prevent urine back up, which helps protect the kidneys from infection. Urine is able to pass from the kidney, to the ureters, to the pouch, and through the urethra in a manner similar to the normal passing of urine. To be a candidate for this surgical procedure, there must be a low risk of cancer recurrence in the urethra and patients must be able to pass a catheter into the urethra to empty the pouch if necessary.
In my case I want you all to know that I do NOT have IC anymore. That is not to say that I don't have problems of other sorts but the IC is gone FOR ME!. My Neobladder does provide me with a much better quality of life than I had before. Not all Neobladder patients in the IC community are unhappy with their results. So, you can feel assured that there is ONE person on this board that is IC Free. Not all of us got that lucky even with the best surgeon, but there is one, and I am standing here to explain that this great surgeon took away my IC. I am one of the lucky ones and some of you could be too.
This doctor saved my life and I am very sensitive when people say things like, he he does not know his research or that he does not know what he is talking about. It's a bit insulting to his expertise and intelligence and mine as well for choosing him. He's been working with IC for 35+ years. He keeps himself freshly educated to this day and is up on all of the new treatments and surgical skills. All of his IC cystectomy patients are IC free and some of them had it done 13 years ago.
Knowing One IC Free Neobladder person is a positive thing for those of you who are scared that your IC will come back if your doctor suggests a Neobladder.
In all cases, it is strongly encouraged that you discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
12-09-2005, 10:50 PM
opps, I thought a neo-bladder was whenever a bladder is created out of ones intestines, I didn't know that when the urethra was removed as well and replaced with a stoma that it is than just called and internal pouch (?), my bad :)
But's that what I meant ; )
12-10-2005, 06:03 AM
Christine, In response to your quote:
"opps, I thought a neo-bladder was whenever a bladder is created out of ones intestines" Neobladders are made out of the small instestine. Here's how it works......
Neobladders are for all kinds of paitents not just for cancer that information is not correct. They do Neobladders on IC patients all of the time.
Neobladder to Urethra Diversion.
This procedure most closely mimics the storage function of a urinary bladder. With this procedure, a small part of the small intestine is made into a reservoir or pouch, which is connected to the urethra. The ureters are repositioned to drain into this pouch. As with the Indiana Pouch, this downward flow of urine from the kidneys into the pouch helps prevent urine back up, which helps protect the kidneys from infection. Urine is able to pass from the kidney, to the ureters, to the pouch, and through the urethra in a manner similar to the normal passing of urine. To be a candidate for this surgical procedure, patients must be able to pass a catheter into the urethra to empty the pouch if necessary.
I hope that explains it better.
12-10-2005, 07:38 AM
When I have my surgery I will not be doing the neobladder. For me it would be a walk down memory lane-having to cath thru my urethra-oh I want the good doctor to take that and my bladder-actually the doctors involved in my care have said the inside stoma or the bag would be the best choice for me. I will listen to them...Tracy thank you for providing your input-it is along the same lines I have come across.-Annic :angel:
12-10-2005, 08:04 AM
thaks Kara, that helps a lot : D
12-11-2005, 01:36 PM
Sorry I have not joined in this topic till now. My computer went down! I was told when I had my bladder and urethra out that I no longer had IC. Like some others I have had other problems arise that were a result of the cystectomy, but I would still do it all over again in a heartbeat. For me I started out wearing an external pouch- I had what is commonly called an ileal conduit, but do to many problems with it I had it converted to an internal pouch. Mine is a version of an Indiana pouch, which my surgeon customized for me since I had already had taken from other surgeries the pieces of bowel normally used for an Indiana pouch. I personally have never had problems relating to the reoccurance of IC in any parts of my ileal conduit or stoma or my Indiana pouch. I will tell you that when I get an infection of my pouch I do have the sensation of needing to csth more frequently like when I had IC in my bladder but as soon as the infection is treated the feelings go away. As others have said find a good surgeon, one who is knowledgable on IC, has many cystectomies on IC patientsa nd does frequent suirgery of this type. Always ask if they have other patients that you can talk to. If they dont, I would ask them the name of an ET nurse (one who takes care of patients with ostomies) who can get you in touch with other IC patients who have had the surgery. Judith
12-11-2005, 03:22 PM
Thanks for the info, Judith, and you're certainly not late : )
12-11-2005, 10:44 PM
Tracy, your first post honestly did scare me, but I also already knew this was a possibility and I have been scareing myself with it for a long time now so don't worry. I would do the neo-bladder in a heartbeat but it isn't even an option for me like you said, my urethra is way too damaged to keep. Plus I have to cath through my urethra right now because of my augmented bladder and it causes me so much pain. My urethra goes into spasms everytime and sometimes closes up so tight that I can't get the catheter in, it is so scary. My neurontin has never helped with my pain but I actually think it is helping with the urethral spasms, I tried to go off it a couple weeks ago cuz it just contributes to my constipation, but the spasms got way worse and they almost imediately reduced a little when I tried the neurontin again 900 mg, maybe this will help someone else. I would just feel so much more normal with a neo-bladder and not having to cath a stoma for the rest of my life. That is the biggest thing I hate about all of this, is loosing my urethra. I hate that I will be a slave to catheters and the stoma for the rest of my life, I really hate it. I just want to be normal, I am only 30, I just want a normal body, I know we all do. The only way I can have that though is to find a miracle cure and believe me I am trying. If nothing comes up in 30 days though I will be getting my Indiana pouch, whether I want it or not.
I also wanted to talk about the two people you mentioned that got the IC back in their pouch. You said that it was most likely because their IC is in their urine, I was thinking about that weeks ago, because I have always believed that my IC is in my urine and also an autoimmune disease. So I thought that when I get my surgery and can eat whatever I want again that I will try to eat a ton of citrus, that is supposed to alkilize (spelling?) your urine and your body. Some people have healed their IC this way. I can't tolerate citrus right now at all so I can't test this yet, but a lot of people who aren't as bad and as sensitive have gotten rid of their IC this way. If it is true that an acidic body causes IC then this could keep IC out of the pouch. Don't you think?
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