Had my Bladder Removed-My Experience...

[EllenW]

Hi Everyone...
I am now 34 years old. I have had IC ever since I can remember. The worst beiginning at 22. When I was 26 I had IC so bad (with no response from treatments(DMSO, Elmiron,etc.)Extreme pain, and only being able to hold 25cc of urine before I felt like I was going to die. My Dr.who is a specialist in IC and I trusted, said it was time for me to have My total bladder removed and replaced with my large and small intestines. It is called an "Indiana Pouch". On my stomach, I have a little hole called a "stoma" which I drain my urine with through a cathater.I had no hesitation at making a decision to do this surgery, for my quality of life was down to zero.

To make my long story short (feel free to email me) I had the surgery done in January 1996. I felt relief from pain for the first time in my whole life and was able to "function" as a "normal" person. My "Pouch" was holding up to 1000 CC of urine at the time. I was amazed and so happy I wasnt running to the bathroom every five minute. I was working full time and had my life back. Well this lasted about 2 years... when suddenly, the same symptoms started coming back. Extreme pain in my pouch, feeling like I had to urinate constantly, and now, for the FIRST time in my life, I developed a kidney infection. That was just the start of MANY to come. I was in and out of the Emergency and Hospital with constant infections...no matter how "clean" I kept my cathater, etc. I ended up with infections. Then I started leaking urine from my stoma. It started at night... I would wake up, soaked in my bed. It started happening 2-3 times a night and during the day. Needles to say I was diagnosed with IC in my pouch, the capacity has shrunk, I am on triplicaate pain meds to keep myself from feeling the extreme pain I am now on Social Security Disaility .My whole life has been "taken away" once again. I was wondering if anyone else has had there bladder removed and had these problems... especially the leaking. My Doctor wants to go in a "redo" the pouch, but I am so afraid I will end up losing it and having to wear a bag for the rest of my life. Feel free to email me or post a message. I have a big decision to make very soon.

Thanks for listening, and your help! Ellen W

[tigger_gal]

grouphug Ellen kissing ,
I am so sorry to hear this, My mom has IC to and disscussed her bladder being removed, and replaced with a pigs bladder...(there is a long story behind this) many years ago. Her dr told her no because eventually ic will attack the new bladder. that is all I know about bladder removal. please take care of your self.
Brat

[auntiedeb]

Hi Ellen and welcome to the network. I am so sorry you are going through this. So sorry about your bladder. Have you tried praying about it? Hang in there.there is hope.

[Judith]

Ellen, I had my bladder out over 17 years ago. First I had an ileal conduit- wear you wear an external pouch. I had lots of problems with it, one the reasons being it was not constructed properly, so after 6 years I had it converted to a continent urostomy. Mine is a version of an Indiana pouch and I have had this for 11 years. I have not had any return of IC type symptoms in it. I do get infections, but I am more than willing to deal with them, than deal with IC on a daily basis. As far as leaking from the pouch, I did in the beginning, but I never have that problem now. I do keep the stoma covered as it will spit out mucus, and if I have an infection, I may have a small amount of leakage that tends to be blood. I am sorry that you are having such a dreadful time of it. Maybe a revision would be worth a try. Hope things get better for you. Judith bunny

[DebbieD]

Hi Ellen , It sounds just Like me. I peed Bllod al during School. I am gonna try to cut this short. In 1977 I went to Duke University to a wonderful DR. My bldder was real small. alot of cystos and nothing worked. We did the Part bowel and Part Bladder thing 3 times. Then the S2 nerve Block witch they cut the 2 Main nerves to the Bladder. Nothing Worked. Then in 1984 I had my urostomuy done. and now I have had it revised 4 times. No Bowled or anything left is this goes bad. I still get Bad Infections. I am in the Hospital every other Month now. But I just thank god I still have my life. Yes i am Social security Disabilty also. They reviwed me every 3 to 4 years.

I have alocal uro and I still my Uro in Duke. I love him to death is is great, I hope that things get better for you. Sorry you are having so much trouble.

You are in my Prayers.

e-mail if you like
DebbieD
Ldurham@comcast.net

[CELESTRA]

Hi Ellen, Please check the archives under this subject. There are severeal people on here who have had their bladders removed, and have posted their stories. I think there are synthetic kinds of bladders that can be used that can not be infected with IC. I don't know the particulars, but look at all of the postings. There may be other options out there that can be looked into. Read the archives....Celeste

[sandie]

how do I find the archieves for this topic? thanks
sandie

[rtriveter]

Does anyone have any info on synthetic bladders? I can't find anything.

[gwyn]

i am soo sorry for you....

hope you are feeling better... grouphug

[NatalieEllen]

To get the archives you need to pick "show all topics" in the drop down box on the first page of the bladder removal topic. (before you click on it to read the individual posts).
This will bring up all the old posts as well as the current ones. :)

[Kara]

I had my bladder removed a year ago June 14th 2002. I can hold up to 1000cc's as well. I have constant infections that won't go away. I keep getting a different infection every time even while on antibiotics. Enteroccous, Ecoli, Klepsasillaneumonie, and Casea something something.....you name an infection and I've had it. The doctors do not know how to stop these infections...........They are painful and I have to keep going into the hospital for IV Fentanyl for pain relief. I take lots of medications too. I would say this is the MAJOR downfall of having the bladder taken out. If I find out an answer I will let you know how we can battle this. I still would not have my old IC bladder back. If they returned it to me I would shoot myself in the head and get it over with. So even though I am suffering these horrendous infections, I would never go back to IC. I am waiting for disability to accept me but you all know how difficult that is(I'm on my 2nd round with them). I pray daily that I will get it so my husband and I can have some extra help with money. He can't support both of us and our lavish life style.

You are not alone!
grouphug