Question about bladder removal?

[Kara]

While I am especialy enjoying my new bladder, I have developed intestinal/abdominal spasms that have not been present since after my cystectomy. My doctor says he's going to try some MS medications on me. Do any of you know what these may be?

Methocarbamol [Robaxin]
Baclofen [Lioresal]
Clonazepam [Klonopin]
Dantrolene [Dantrium]
Lorazepam [Ativan]

Could any of these be what he means? He named them off so fast I don't remeber what he said.....so I looked these up online, wondering if any of you use or used them for muscle spasms of the intestines/abdomen???? If so, which ones? and did they work?

Thanks,

Kara

[julesb44]

Hi Kara,
I have tried Ativan at night to help with sleep. It is in the Valium family. It makes everything relax. I also use it when I have abdominal spasms. I get spasms all over my abdomen. I'm not sure what is from my bladder or my intestines. I guess I'll find out after I have my cystectomy! I used to take the ativan after playing volleyball because I would start spasming quite a bit. Good luck!
Take care, Julie <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

[Judith]

Kara, Ativan is used for many different things, one is as an anti-anxiety drug, but it is also used in smaller doses for pain and spasms. I have heard of Klonopin and Robaxin- I believe they are used for muscular problems, though I have no personal experience with either. The best thing is to ask your pharmacist about them. I hope one if them does the trick to relieve your spasms. Judith <img src="graemlins/bunny.gif" border="0" alt="[bunny]" />

[Jane Prichard]

My doctor put me on Hyoscyamin for spasms of my Indiana pouch after my bladder removal.

It stopped the spasms and also constipated me, whatever relaxes the bladder also relaxes the colon.

Eat lots of nuts, fresh fruit, green leafy vegetables to avoid constipation. Especially apples, apple juice, high fiber cereal, beets, spinach....

[Eileen Page]

Hi Everyone,

This is my first time on line for a very long time.

Before my bladder removal I was on constantely to get support and information. I noticed that a few members are thinking about having their bladders removed. It is a very big step to take as it cannot be reversed but I had my bladder removed 5 years ago now and I have never looked back. For me it was the best thing to do. I have never had any infections or problems, accept a hernia that has developed but it does not give me any problems. I stopped seeing my specialist 4 years ago and have not needed to see him again. I see my GP and have blood tests every 6 months and every 2 years a cat scan to check that my kidneys are okay.
Once again for me it was the best thing to do as my life is now great and I was able to go back to work.

If anyone has any questions I am happy to answer them.

Takce care,
Eileen

[Judith56]

Eileen, thank you posting your positive experience. I thiknk mostg of us who have had our bladders removed are pretty happy woith the outcome. It does seem that even people who have had problems are still glad that they no longer have to deal with the IC. Glad everything is going so well! Judith

[K9wife]

Again I ask, does anyone know where kara is now and/or how she's doing? I would love to contact her re: her surgery and maybe ask her to come chat with our support group, only an hour from Syracuse, where she lists her home. I have both emailed her and looked for her here, but to no avail.

[Judith56]

I am sorry, I have no idea where Kara is or how she is doing. Maybe Donna or Jill would know? Judith

[Eileen Page]

Hi Darla ,

I have resorted to posting your letter here because my letter was sent back from your own email address ???

I am happy to answer any questions that you may have. A lady in the UK helped me with lots of answers before my big decision and I would like to do the same for someone else.

Well re recovery I guess every one is different. Before my op I decided to donate my own blood. That was a big mistake for me because I became anaemic very quickly and they stopped my donations. As a result I went into theatre with low iron levels. I was very tired for a few months after and my specialist did a few more blood tests and it was discover that I did not have any iron stores in my body at all. He wanted to give me iron injections but I decided to just eat a lot of red meat instead.

I have had a lot of operations over the years due to endometriosis and for me the big thing has been feeling tired afterwards for a few months. But I have just found out that I have fibromyalgia and that makes you tired.

It took me a while to get used to having a bag I thought that every body could see it. That is not true and now people are surprised when I say that I have had my bladder removed.

Of course having a bag is not really 'normal' and that was something that I had to get used to. A grieving I guess, coming to terms with all that I had been through. All the pain and suffering and now not having a bladder.

Saying all of that I have never regretted having my bladder removed. My life has been given back to me and I can do everything that I could not do before the removal. I look back and think that nobody should have to go through that awful pain, it is so sad.

I hope that has helped but please feel free to write any time with questions and I will try to answer them. At the end of the day it is you that has to make the decision but I can give you information that may help you with that decision.

Take care,

Eileen Page

[curlycue]

You go Girls You should be very proud of yourselfs.

[Prinny Joy]

Bladder Removal? Oh, don' I wish! The best my current Dr. would offer me is a surgery w/ a 30 % success so we had to pass on that. Bladder removal one Dr. had told me I had suffered enough and unfortunately that Dr. is in Hawaii and I'm in Phoenix. I think it would be so great to have a bag instead of my bladder. Hope all goes well for you! PEACE and JOY!

[carly]

I am meeting with my doctor on August 31 to discuss having my bladder removed. I also have pulmonary hypertension and severe asthma. I think for me, it would help so much when my lungs are bad to not have to worry about constantly going to the bathroom. When I am in the hospital, they give me IV fluids, and I spend all my time on the commond. I am now on a duretic for my pulmomary hypertension, so I go even more. It is a big decision, but I feel like it will help with my overall picture.

[Bianchi]

I have a question, I hope you people that had their bladder removed. dont mind. Does everyone have a bag or do some of you have replacement bladders?
Thanks in advance,
Bianchi

[Judith56]

Bianchi, I started off with wearing an external pouch. Then after 6 years had it converted to an internal urostomy pouch that is made from my tranvesre colon. I have a tiny stoma (opening) into which I insert a catheter to drain the urine. I keep the opening covered with gauze and tape.
Carly, if I can answer any questions you might have, just let me know! Judith

[carly]

Judith, thanks so much for answering questions. Did you have your urethra removed too? I have a lot of urethral pain, so I don't think I want to keep it. I have also been having a lot of vaginal pain. My pain is from my upper abdomen to my upper thighs. It has progressed since I was diagnosed. How long was your recovery? How long in the hospital? My biggest worry is of course, my lungs. I had hernia surgery last year. I didn't take big enough breaths, and got really sick, back on oxygen, etc. Unfortunately my bladder doctor and my lung doctor are 60 miles apart. We are also taking in a exchange student from Vietnam (arrives tomorrow), and I would like to get the surgery soon, if the recovery is not too long. Thanks for your help!

[Judith56]

Carly, when they took out my bladder they also took out the urethra- Thank God! The urethra is where I had pain and I remember that right after surgery I was throwing things on the floor so I could pick them up since it no longer caused me pain to do that. I had my surgery 19 years ago, I think I was in the hospital for about two weeks and then they say it takes about 6 weeks before you are fully recovered. At the time I had a 3 year old and a 5 year old so I got better very fast! I was also only 30 years old and other than the IC was in good health. It really depends on your age, your general health etc as to how long it takes to recover. I hope that the lung doctor and your surgeon talk to each other so that they both are aware of what each is doing. Keep us posted. Judith

[Bianchi]

Thank you, Judith, for answering and clarifying the situation for me.
Bianchi

[Eileen Page]

hi,

I have a bag that I change every day. I was given the option at time of surgery of an internal pouch but was told that there was a lot of problems with them. I am happy with my bag but of course the ultimate would be to have a new 'real bladder' I think that will come some day.

[leb922]

I'm new here and i know about several surgical options but I was wondering if anyone has ever had just a bladder transplant instead of the bladder removal, and if so how that works out for them.

[DebbieD]

There is really not such a thing as Bladder Transplant! But Before my Ostomy they did try a cecum-cysto-Plastic Bladder. Which is Part Bowel Part Bladder! It did not work on me!

What are your Options?

DebbieD

[curlycue]

Hey DebbieD,
I read some where that they are using pig skin to try to a new bladder ? Has anyone else heard of this?

[carly]

I really don't want to transplant my bladder. When you have a transplant, you have to deal with anti-rejection drugs for the rest of your life. That just creates a whole new set of problems. Debbie, did you have your urethra removed? Do you have a bag? How long will I most likely be in the hospital? What is the recovery? Thanks, I am seeing my urologist on Aug. 31st to discuss having my bladder removed. My gyn, and my family practice dr. thinks I need to do this.

[DebbieD]

Hey Carly all this depends on the Person okay. Yes I had my Ureatha removed! I have a Ileo-conduit yes i wear a Bag. Hospital I was in about 7 dayds. Recovery time for me was 6 weeks and then again it depends on the Person. It is not a pretty site but compare to what I went through I will wear the bag all the time. I swim, Hike, go Camping and Mostly whatever I want to do. Any Question Please feel free to ask Okay. Judith will help out I am sure. Good-luck
Hugs
DebbieD

[CMSGT Di]

Can anyone give me a name or names of urologists in the Chicago, IL or western suburbs of Chicago, IL? Neither my urologist or Uro-gyne will perform the surgery and I need some names of doctors to call. Thanks.

[DebbieD]

Hey CM the Best way to look gor Dr's is go on the Interent and in your area Where you Live and it will Give you a List of say Uros. That is How I found Mine in MI. Plus I did have My Regular at Duke Unversity and On the Board to help also. Good Luck

Hugs
DebbieD