BLADDER

[patsy]

HI EVERYONE HAD THERE IN IC USA LAND. BARE WITH ME SINCE THIS IS MY FIRST TIME, HERE ON THIS SIGHT. I AM CONSIDERING BLADDER REMOVAL SURGERY, I HAVE HAD A SERIOUS OF 6 OPERATION TRYING TO CORRECT MY BLADDER, BUT WITH NO LUCK, I HAVE HAD INTERSIM INPLANTED, MY DR. CAME TO ME LAST WEEK AND TOLD ME THAT I SHOULD CONSIDER BLADDER REMOVAL SURGER, OR TO WEAR THE COLASTAMY BAG, I STAY IN EXTREME PAIN WITH MY IC, PLEASE GIVE SOME INPUT BACK, I WOULD APPRECIATE ALL OF YOUR REPLYS, ESPECIALLY DURING THIS TRYING TIME. THANKS PATSY toilet

[julesb44]

Hi Patsy,
I had my bladder removed 8 weeks ago. So far I don't have the ic pain I had before. I have an Indiana Pouch, which means I have a pouch inside that I cath through my bellybutton (a stoma) to empty it. It is very easy to do. Right now I cath every 2 to 3 hours. Already way better than when I had my bladder! My only problem now, is that I leak sometimes before I cath. It is because my pouch doesn't hold very much yet. It takes months to stretch it out to where I will only have to cath every 4 to 6 hours. It's a painful surgery with a long recovery, but I don't regret it at all. I am getting my life back. I even think I will be able to return to work. Good luck with your decision.
Take care, Julie hi
ps-feel free to e-mail me with any questions you have. julesb44@charter.net

[sanctuary]

I just read your story, My doctor told me, "only as a last resort would she ever do that, because the Pt's she has taken bladders out of, had the same amount of pain, eventually and that it was like a "phantom" bladder and the pain remained". It's pretty serious stuff to do. Maybe a second opinion would be good? Good luck to you, for your doc to want to do that, you must be pretty bad off. I'm so very sorry to read that you're in this kind of shape. I hope it works out for you,my heart goes out to you. Hugs and good wishes. sanctuary

[julesb44]

Hi Santuary,
I had mine removed 8 weeks ago. It was a difficult surgery and the recovery is long. But I no longer have the pain I had all the time with ic. I was taking many pain pills daily. Right now I cath myself every 2 to 3 hours. It is very easy and painless. I can do it anywhere. It takes a long time to stretch out the pouch, however, so I have to get up at night too. In about 3 to 4 months I should be able to go 4 to 6 hours during the day and be able to sleep all night. My main problems is leaking sometimes, but that too is supposed to go away with time. I did have a kidney infection after surgery, but meds took care of that. I know you are more prone to kidney infections without your bladder. I hope this helps you!
Take care, Julie:)

[icnmgrjill]

Hi Patsy,

Great question but it's a hard one to answer. As we say in the intro above, bladder removal is not considered a treatment for IC because there have been times when, after removal, the pain can be still be present. Why? Because for some patients, their nerves have become irritated and inflamed.

I guess the key questions are:
(1) What is the status of your bladder today? Is it small, scarred??
(2) What other surgeries did you have???
(3) Do you have more than IC going on???

There are so many treatments for IC now that surgery (including interstim) is considered a last resort. Have you tried all of the oral drugs available??? Coatings? Antihistamines? Pain meds? Alternatives?

How about diet? Are you reducing acid intake??? Acid on a wound every day will definitely impede healing so I hope that you're not one of those patients that continue to drink coffee or tea or soda. If you're considering major surgery, it's time to be perfect with your diet to reduce anything that can irritate the wounds and/or irritation in your bladder. Diet IS critical!

You'll find some bladder removal patients on our site and I hope that you take time to talk with them in depth if it looks like you're a candidate for removal. It's important to know what to expect.. and they learned some key lessons that could save you some grief about how to get through the recovery and rehabilitation.

In either case, we welcome you to our web site and send you the best!

Jill O.

[Judith]

Hi Patsy, I had my bladder removed over 17 years ago. I initally had an ileal conduit which is where you wear an external pouch on your stomach to catch the urine. Then 10 years ago I had it switched to a continent internal pouch. I still have a stoma which is a small opening through which I put a catheter in about 4-6 times a day to drain the urine. My stoma is about the size of a pencil eraser and is located just above my pubic hair on the right side. I do get get infections, but I no longer have the terrible urgency, urethral pain, etc. that I had when I still had my bladder. While I do not have the leakage problems that Jules has, I do still wear a covering because the stoma will spit out small amounts of mucus and I don't want it to get on my clothes. This is very big surgery, and most doctors only do it as a last resort, so I am sure a lot of thought was behind your doctor mentioning this. You may email me with any questions at jkthomas@sover.net Judith bunny

[Kara]

Patsy,

I agree with the others on this topic. I had mine removed on June 14th 2002. My bladder was the size of a walnut and there was scar tissue invading the outside of my bladder that was inflaming all of my other organs. It was time for it to come out. I am still in recovery to this day. It takes a long time to recover fully and some patients don't recover fully and or they can get worse with respect to pain. It's a big thing to consider. You'll need family, friends, and a great medical team to take care of you during this difficult decision. If you have any particlar questions regarding what happened with me and my bladder, feel free to email me at: klkreese@twcny.rr.com

Best Wishes in the days to come!


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[patsy]

thnaks everyone for th egreat response that i have recieved from everyone concerning my letter on a bladder removal surgery. i am still not sure what i want to do at this point, the pain is terrible, the not knowing is so sad, and deep depression has start to set in from not knowing what is the right thing to do. my husband had been a god send to me, i could not ask for a better companion to share my life with, please keep up the letters, and any words of wisdom that you might want to share, i will let all of my ic freinds know when i have made a decision,because i will need a lot of support from my family and my ic friends. thanks so much patsy :rolleyes:

[Jim Beech]

Hello Patsy,
I read your letter and the various replies with interest. I am one of the relatively rare males who suffered with IC and it was very severe causing me great pain and frequency over a number of years. Eventually I was going to the bathroom every twenty minutes and the pain was constant. In the end I changed my consultant and the new one told me I had the worst bladder he'd ever seen. On the 27th January 2001 I had a dysectomy and the bladder was removed altogether. I have a stoma and external adhesive flange with a snap on pouch which I change once a week. I can go up to four hours between emptyings and I am totally pain free. I only get up once in the night which, as you can imagine, is heaven.
It took me about three months to make a full recovery but I was actually very well after only six weeks. My life now is entirely normal and I believe that the operation was the best thing that ever happened to me. The surgeon told me beforehand that there were risks but I couldn't go on the way I was.
I wish you all the best for the future,
regards, Jim Beech (UK)