ilieal conduit

[rosey]

Hi,
Could someone tell me what it's like to have bladder diversion surgery with an ileal conduit? My dr. is highly recommending I have this done.

I have had ic about 15yrs., voiding 40x's on "normal" days. I have to bear down to pass the urine because of a prolapsed bladder. I have had 2 surgeries to lift the bladder, but it keeps falling down. Now because I am straining to pass the urine, I have rectal prolapse. The rectal prolapse went away after my surgeries, because I quit straining.

I don't want to trade one set of bad circumstances for another, but don't see another way out. I'd appreciate any info on what it's like to live with a stoma.

Thanks so much!
Rosey R.

[DebbieD]

Rosy you have Message! Okay.

[Judith56]

Hi Rosey, I had it done over 18 years ago. I had my ileal conduit for 6 years and then converted it to an internal continent pouch that I catheterize several times a day. First of all if your doctor feels you need to have it done I would listen. It is a surgery that they do not perform unless absolutely necessary. I would also get a second opinion and ask if an internal pouch could be an option. Once you recover from the surgery your quality of life will be so much better. You will no longer be chained to the bathroom. The first time I ever in my life slept through the night was when I had my surgery done at age 30! It is an adjustment at first, but something you can live with. There are lots of folks out there living with urostomies and you would never know it unless they tell you. I can do anything I want, short of lifting extremely heavy objects which is fine with me! In fact I have been able to do more with my life now that my bladder is gone than before the surgery. Please feel free to ask me anything! Judith

[rosey]

Hi Judith,
Thanks so much for your message. Why did you decide to have an internal bag after getting the external one? Did you actually have your bladder removed or did they leave it in?

What was the recovery like after having the external bag? Was there much pain? When were you able to be up and around?
Thanks,
Rosey R.

[Judith56]

Rosey, the reson I converted was because I had problems with my conduit. I had even had it revised once, but still had continuing problems, so because I still needed to get it fixed once again, my surgeon offered me the option and I went for it. They took out my bladder, urethra and appendix (just for good measure) during the conduit operation.When I got my conduit I think was in for about two weeks- it was so long ago I can't remember how long it was. I had the surgery over 18 years ago. They get you up and walking the day after the surgery. You will be given pain meds and yes there is pain, but with time it goes away. Usually by the time you leave the hospital it can be controlled with something like Percocet or Darvocet. My parents had taken my kids to Disney World so I could recover and not have to care for them, but my stepfather's back went out while they were there so I had to go and help my mother! That was about 2 1/2 weeks after the surgery! I was fine, did get tired easily, but as I was only 30 at the time it did not hamper my recovery and I think being forced to get back to life was a good thing. Judith

[jrowley]

here rosey a website that explains the surgery http://www.chclibrary.org/micromed/00069710.html

But dont let the cancer word scare you as your doctor is doing it for your IC and constant urination from what you said.

[mayray518]

Judith, I feel so bad for you. You went through all that at 30. Makes me want to cry. I got IC at 38 and was helped with elavil. We all go through so much. I am glad you are doing well with the surgery and you got your life back. you are so courageous

[Judith56]

Thanks mayray, but don't feel bad for me. I am actually thankful I was able to be helped. I also feel that in way it was a blessing becuase what I have gone through has enabled to meet many wonderful people. I also feel that my experiences have help to shape my children's views on life and how they interact with people who are facing or living with chronic health problems.While atg times things have not been easy for any of us in my family it has also made us closer and appreciative of each other.I just do what I need to do and live life to the fullest enjoying and treasuring the small things, like the nature that surrounds me and my family. Judith

[DebbieD]

I had a Ileo-comduit 20 years ago and 3 revisisons done plus a Kidney removed Last Year all cause of Severe IC. I am just one of thise people that is in the Wierd Case. But I rather have an Ostomy than Have to self-cath and to go through what I had to go through. :loco:

DebbieD