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CIS
Hi
This is my first message even though I have been reading through messages for about a year.
I was diagnosed with CIS after spending a year being treated for bladder infections which of course was not always the case. It was only when I took things into my own hands and found a doctor who took time to do a Cystscope.
I have been fighting the battle for 4 years started out with BCG had 6 treatments they did not work Had 6 with Interferon next biopsies came back neg my doctor was not happy so he sent them to John Hopkins came back positive,so more treatments next biopsies came back neg but urovision postitive.
2 years ago inbetween all the treatments ended up with a massive embolism in both lungs lucky for me had a doctor who had studied a new procedure my family gave permission to try it was the first time they had done it. saved my life. I was off my treatments for 5 months when checked the cancer was back.
Have had BCG and Interferon maintenance every 3 months for the last couple of years.
The bladder is now very irritated no cancer but can only hold about 200cc instead of a normal 1200cc I am in pain as soon as my bladder starts to fill.They call me a bladder cripple I would try to live with the pain but am afraid the cancer will be back
I am now at the point where I will have the bladder removed March 6 :'( I dont want to travel a long way and my doctors only do the bag on the outside I considered the Indiana pouch but a longer surgary and starting all over again with another set of doctors.
I would like to know if anyone can tell me if they have had this type of surgary how long to get over it will life be normal.I am a very young 73 year old who is still active even with the pain.
Thank you fallon -
18 Replies
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Wendy..its not just younger people being offered the neo-bladders or Indiana Pouches..it has a lot to do with expertise and the area you live….all urologists are not created equal. I live in a large city and there is actually noone who can do an Indiana Pouch…hard to believe. And it appears to be gender specific also….men they offer a neo-bladder…women a bag especially if you’re like really old like 60!!! And us old foggies are in cyberspace and on this site…take a poll .. you’ll be surprised.
Funny how if you’re a man in your 80’s surgeons don’t even blink before they do by-pass surgery………but a woman..hmmmm..they haven’t figured out our tiny little arteries yet………and pouches and neo-bladders god forbid on a 60 or 70 yr old female???….much easier to do a bag isn’t it?
There are really only a few really dynamic hospitals that routinely do this surgery and have great compassion for the women involved and I highly recommend people seek them out. So what if you have to leave home for a few weeks….its your life. I’d be six feet under right now if i’d stayed here and had the partial bladderectomy (honestly my uro called it that) that he wanted to do. Of course he’d never done one before! Hello!
Glad i’m not completely senile at 60!……………. -
Thanks for the information Martha makes me feel better knowing I wont have too many problems with clothing.I will remember the panties you mention. I make a lot of my own pants as I am only 4.11 have a hard time finding things my size even in the juniors I have to cut so much off.
pat had given me some advise in making sure I have a say so in where my stoma goes. Stay well
fallon -
My stoma is about 2 1/2″ from my navel on the right side due to the fact that I only have the right kidney. Left one was taken out in 1983 due to a grapefruit sized, non-malignant tumor. As far as swimsuits are concerned, I have heard that the tankinis with a little skirt work well and suggestions are to stay away from solid colors and pick prints. My bag can be folded down a little to be hidden by my waistband. I, too, am a shorts, t-shirt type of person. Good luck and stay in touch.
Martha -
Thank you Tim for your reply. Do you mean the man had the bag on the outside or the Indana pouch?
Its just scary and not knowing which procedure to have. -
Thank makes me feel better Martha not having a problem with clothes. I am a shorts and T shirt gal in the summer or skirt.In the short winters we have I wear pants dont often wear jeans so that wont be a problem.
This is is a urinery tract infection think it was from the cysto they did last week where they went in my bladder to look around and try to stretch it but everytime he tried to fill it up blood would pour out of it.
How far from your naval is your stoma and which side is it on?
Thank you for your information -
Ive no direct experience Fallon but a man in the same ward as me 76 years old had this surgery and we were all amazed at how well he did. He left the hospital not looking different to how he came in and pretty cheery too! Best of luck.
Tim
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Fallon,
I was also worried about the clothes I could/couldn’t wear. That is really not a problem. The only thing I have had a problem with is some of my jeans. Some are o.k., some aren’t. I found Vassarette panties, briefs with lycra that hold very well and of course panty hose. Of course this time of year sweat pants have been wonderful. The placement of my stoma is about 1 1/2 inches below the waist. Hope you get your infection under control. I never had any from my cystectomy, just from the urinary tract infections.
Martha -
Sounds like you made the right choice Martha. I am still pondering had a consult today with a doctor at MUSC a doctor I saw there 2 weeks ago. he came from Cleaveland they do the Indiana pouch but he still feels the bag on the outside has less problems. That hospital is two and half hours away my doctor who has followed me through all my treatments is one hour they just do the bag outside My own hospital here in town does the bag on the outside but would not change doctors if I choose to go that way.
My pre opp is Feb 21 and I think I will wait until then and talk to the doctors about my options.
There are two gentlemen here in town I have spoken too who have had the bag on the outside and seem to be happy with their choice but they dont have to wory about what clothes they wear. I worry about how it will affect my choice in clothing. Thank you for your reply everyone on here is so helpfull.
Today was not good as I went to my family doctor feeling bad I had a bad infection thinkit might be from my cysto last week. -
fallon,
I had a similar experience with both options, bag or neobladder. Had the radical cystectomy Oct. 18, 2006, so am assuming I am a newbie. My favorite urologist, 1 hour away, very graciously sent us to another oncologist/urologist at a major teaching hospital, 3 hours away, here in texas for a 2nd opinion. The OU said I was a perfect candidate for either of the neo bladders. My urologist could only do the “outside bag”. We opted for staying closer to home, near friends and family for the surgery. Only had minor problems after coming home learning which bags were appropriate. Came to the conclusion that the bags used in the hospital are not the ones for active people. We are still very happy with our decision and “Betty” has become a welcome member to the family. Good luck, our prayers are with you.
Martha -
Thank you Wendy I think maybe one reason we are offered I.C. is age plus doctors in small towns dont offer anything else. I have to give my doctor credit he said he would send me anywhere he has also always been very aware of my biopsies and gotten second oppinons more than once.
I am still very uncertain about whaic way to go as I know being close to home is factoring into my deciding which procedure to do.
I have my pre op visit with the doctor doing the surgary Feb 21 so I will have lots of questions to ask.The doctor I was sent to in Charleston told me you will be fine just hide it under your pants as I leaned close to him and looked him in the eye I asked “what about my bathing suit ” ;) he couldn’t find an answer as it was not a question he was expecting when I laughed he got over his shock told me to buy one like a dress :) MEN
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Hi Fallon,
It sounds as if you are taking the right road for your situation. Don’t worry, you will get through the surgery and come out fine, the external pouch has no learning curve aside from finding the best appliance that doesn’t irritate or leak. Figure being out of commission for the first 6 wks. Getting back up ASAP and walking is the best way to heal, get the bowels working again and get out of the hospital.
I know plenty of men and women with ileal conduits (they refer to themselves as “ostomates”) and they are satisfied, no complaints aside from the ones I mentioned.
I’ve heard there is a Yahoo group for ostomates that is very helpful. It seems most of the people on this board and on our email list had the other types, neobladders or Indiana pouch. I think it’s because most younger people are offered these options and younger people are the ones out here in cyberspace connecting with each other. Not that ostomates are in the minority…it just seems that way.
I wish you an easy time with the upcoming surgery and a speedy recovery. Keep asking question, and stay in touch.
Wendy -
Thank you Rosemary no I always have a general when I have my biopsies now. The doctors dont want to give me a spinal although I have had them in the past with no problems. I guess since my problem they are a little afraid. What was so bad was as soon as I had the needle put in my spine I was in awful pain and they pumped me full of morphine on my trip home I was in pain with my foot and leg they sent me to a pain clinic to cut a long story short it was only when I ended up in the Emergency room they knew what the problem was. Have to admit have learnt a lot going through all thia about doctors and hospitas and know you have to stayy on top of all your own records.
regards fallon -
Fallon,
I’m fumbling a little too :D I haven’t been moderator for very long, but I moved your thread to the Cystectomy section of the forum. Not that you did anything wrong, but you may get more response from that area. Also, you can always use your “modify” button, if you feel you want to change anything in your post.
I’m not sure, but I am thinking that you may be given a general anesthesia for a more prolonged surgery such as a cystectomy. Has your doctor told you that you will have a spinal?
I am wishing you the best.
With warm regards,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Please forgive me jmeba I wrote your name wrong at the top also think I might have stsrted this thread in the wrong place sorry.
fallon
Thank you Nanaca sounds like you are doing well and have a very positive artttude. I try to be positive and stay strong for my family but at times I do get a little scared at the thought of the surgary.
Reading through your messages helped me gave me a little more insight.
I am a little afraid of the spinal as I have had about 10 with no problems but is was after the last one my legs did not wake up for 5 hours should have been awake afer 20 min. thats when the blood clots developed.
I also had a knee replacement while inbetween treatments but still worry about being able to handle the surgary.
I do hope you legs are feeling better and they find an answer for you.My doctor is an hour away so still a good drive but the thought of having to fly somewhere for the Indiana pouch is what stops me going that way.
My heart doctor said he did not think I could make it through the Uro bladder surgary because of my problems with the blood clots.
Thank you for all your kind words
Regards fallonSign In to reply.
