I have ???? about my surgery

[countrygrl]

I am going to have my bladder reconstructed on Feb9 and I have heard good and bad things. My Dr thinks that by doing this it will help me tremendously!
My bladder only holds 70mm of fluid and it should hold 600 to 800 mm. i am scared but ready because I am in constant flare up's and pain,meds are not helping. I have had IC for over 6+yrs.If any1 can tell about their surgery and kinda what to expect afterwards I would really appreciate all info I can get. Thx :help:

[DebbieD]

What Kinda Questions do you need to Know?

You Could be in the Hospital about 7 to 10 Days.

You wil have some tubes Most likley! Jp's Jaskson Pratts. A Cather.
NG tube. IV.
Maybe some Other drain tubes.

Bowel prep before Surgery.

Please Find a Support Group after. It really Helps.

Keep a postive attudude. :)

Six to eight weeks after you Can began Most of your activities.

You will see a ET Nurse.

Please ask the DR and Nurses all the Questions cause they can vary from Patient to patient.

Good Luck
You are in my Prayers. :angel:
Hugs :grouphug:
DebbieD

Feb. 9th is our Aniversary! 21 years

[curlycue]

I have never heard of reconstructive surgery. I thinks its great keep us posted.

[Judith56]

I had my augmentation done many years ago. They left the base of my bladder and rebuilt it by using the ileal cecal segment of my intestine. That is where the large intestine joins with the small intestine. I was in the hospital for about 10 days to two weeks, I can't remember how long it was exactly. They had a suprapubic in me as well as various other tubes, IV's etc. Back then they did not have PCA pumps, so I was getting shots of pain killers in the beginning and then I went to pain pills. I was unable to go on my own- I went into permanent retention so the only way I could pee was to use a catheter. Initially the surgery helped and then my symptoms returned. When they did a follow up cystoscopy they discovered that the IC had spread to the new bladder so, 8 months later I had everything taken out. Hopefully it will be different for you. Please, please, ask your surgeon what his success rate for IC patients is for this procedure, also see if you can talk to any of them. Surgeons now usually do this surgery for other reasons. I dont usually hear of it being done for IC that much any more. I would also ask him what the chance/percent is of having to go back and get your bladder removed. Please dont get me wrong- I am all for surgery for IC patients who need it, I just hate to see people having more surgery than necessary. I think because I have gone through so much, I just like to hopefully spare others from some of the problems I had, though everyone is different. Judith

[Kara29]

I am just curious as to why this doc won't he remove the whole thing? What is his reason for leaving part of it in? How many of these has he done on IC patients. Augmentation Cystoplasty: a procedure in which part or most of the bladder is surgically removed and replaced with a section of the patient’s bowel, thus forming a "new bladder." Urine continues to be stored in the bladder and emptied through the urethra. Following this procedure, some patients will continue to experience symptoms of frequency, urgency and pain. Some may be unable to void without self-catheterization. IC can recur in the bowel segment of the newly constructed bladder. Because of these drawbacks, this procedure is seldom performed.
This has happened to many of us. Judith and I think Debbie, and others as well and they eneded up having the whole thing remvoed in the end. I would hate for you to have to go through more serious operations. Is your doctor an IC Specialist. Sometimes we have to go with the only experienced doctor in our area but there are ways to go outside of your area to get other opinions. You may want to do some more research on this before taking the big plunge. For this reason my doc said that the only way to prevent the IC from attacking the rest of the bladder is to remove the whole thing and either do a pouch of some sort, a neobladder, and or a bag. He and I opted for a Neobladder for me because of my young age. I don't have IC anymore.

Keep your options opened and try not to settle because you want the pain over with here and now. Knowledge is key. Just want to see you get some more opinions even if you have to go to another state. Some insurance companies have large networks. For example, I live in Central NY, But I can see doctors all over including my urologist/surgeon in Boston whom I still see. I got 6 opinions in all and went with the total bladder removal (full cystectomy in the end because I didn't want a big chance for my IC to return.

Kara :angel:

[bellaluna05]

I had to have emergency reconstructive surgery because a stupid doctor ruptured my bladder during a cystoscopy with Hydro and wouldn't admitt what he did. More than half of my bladder died as a result and I was transfered to a better doctor who saved my life with reconstructive bladder surgery. Like I said it saved my life but unfortunately made my IC worse. I think you should definitly get a second opinion from a doctor who is extremely experienced with IC and maybe look into complete bladder removal. I was supposed to have my bladder and urethra removed last week but I had to postpone the surgery unfortunately, I will be having it done at the end of March now. I am really ****** that I have to have surgery again, but this time I have a much better chance of getting better.
Please get a second opinion!!!
You are in my prayers,
Lara

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While doing research on my diabetes for pancreas transplant and stem cells. I found this article, which says clinical trials of a neo-bladder could begin by the end of 2006. These researchers are trying to create "neo-organs" and tissues by growing the patient's own cells into an organ, therefore the body will not reject it and immunosuppression drugs are not needed. It is cool a bladder seems to be the first product scheduled for clinical trials, maybe it will help some of us with severe IC. The whole article and link is below. What do you think?

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Media Contacts:
Wake Forest: Karen Richardson, krchrdsn@wfubmc.edu, Shannon Koontz, shkoontz@wfubmc.edu, at (336) 716-4587.
Tengion: Gary Sender, (610) 292-8364, gary.sender@tengion.com

Wake Forest University Baptist Medical Center is an academic health system comprised of North Carolina Baptist Hospital and Wake Forest University Health Sciences, which operates the university’s School of Medicine and its other related enterprises including the Piedmont Triad Research Park. The Medical School is ranked 4th in the Southeastern United States in revenues from its licensed intellectual property. The Wake Forest Institute for Regenerative Medicine is an international leader in the translation of scientific discovery to clinical therapies. The Institute applies the principles of regenerative medicine to treat human diseases and disabilities. Its mission is to improve patient care by continuing to develop and disseminate novel clinical therapies for the functional repair and replacement of diseased tissues and organs.

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[Judith56]

I think it sounds wonderful, but honestly, until they find the reason for IC, the causes, etc. I would be leary of growing another bladder and having the IC return in it. For me I feel that I was born with it as I had problems with IC since birth. I htiink they are several causes of IC as well as different types of IC. The trick will be to find them and the best treatments. So while I applaud the researchers for doing this, I see it more folks with bladder cancer and other problems.

[countrygrl]

I have seen 4 Dr's and each 1 has agreed that removing all but the neck of the bladder is a very good option for me and they are also removing a muscle in the lower pelvic area that is causing problems plus endometrosis. They say I have a 85% or chance that the Ic wont come back. So I am praying hard. I will be in surgery for 6 to 8 hrs and up to a 16wk recovery process. Luckly i have a good family support. I hope this cures all but there is always that chance. Thx for all your good advice and encouragment.I have studyed so much on this disease that I feel I could be a Dr on it. :biglaugh: I am just SO ready for relieve and not have to take 8 meds aday just to barely make it through the day. My kids deserve better and so does my hubby. My surgery so far is scheduled for feb. 6 just 3 days before my b-day. what a present to me but I am ready!

[curlycue]

Good Luck and keep us posted. I will keep you in my thoughts and prayers.

[jules05]

Hi countrygrl

I had my operation 2 years ago and i am so glad i had it done everything has been great since.
you are looking at about 10 days in hospital a drain will be in place which is usually removed about 2 days after op you will have 2 cathetars in place the superpubic one will be removed about 14 days after surgery the other i had for around a month get advice on flushing these through as there will be a lot of mucous build up this is the only part of the op that was uncomfortable it can get blocked which then causes much irritation i was admitted back a few times with this problem but once i new about the flushing it became much easier to cope with.
you will have a nurse come out to you to check all is ok and she wull remove your stitches/staples.
best of luck to you i hope all goes well allow yourself about 4 months to completely recover if you have any other questions please dont hesitate to ask

[ICNDonna]

I have not considered this kind of surgery for myself, but my uro told me about a woman who had come to see him, who had augmentation surgery twenty years before and was symptom free for twenty years before she again experienced pain. IMHO, it was well worth it.

Donna

[curlycue]

Good luck.

[countrygrl]

Thx every1 they had to reschedule my surgery its set for Feb 20th @ 11:00am. I also have to have some endometrosis removed its attacked my bowels. They Dr's say I can go home from hospital in 10 to 15 days. I am scared to but ready to get it over. Thx for all the prayers and comforting words. When i can i will let you all know how i am doing.