Indiana Pouch

7 years 3 months ago #51640 by MLGmary
Replied by MLGmary on topic Indiana Pouch
Thank you, this makes me feel,better. I'm still not sure what will happen yet but I know I'll have more questions.

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7 years 3 months ago #51638 by Cynthia
Replied by Cynthia on topic Indiana Pouch
Mary, I hope that my story will help with your fears a bit. I did everything I could not to have an RC and lost sight of what was really important. I forgot that the war was to stay alive and not to keep my bladder. By the time I had my RC my quality of life was not great I had constant discomfort and was completely inconstant but still I feared the RC. On May 3rd 2005 I had my RC with an Indiana Pouch done at Chicago Uniniversity Hospital by Dr. Gary Stienberg he does three to five RC's a week. (My local Urologist did three to five a year.) Yes it was a big surgery but five weeks later I flew back to my home in Massachusetts, was doing a conga line at a wedding in August and drove by myself to and from Tennessee to help my sister who had surgery in September. As a side note it was there that the first conference calls took place that lead to our founding this organization. I have danced, hiked, snorkeled and traval frequently it has not slowed me down. It has not been without complications or frustrations but you bull through because that is what you have to do. Today my diversion is just a part of who I am and I really don't give it a great deal of thought. I carry disposable catheters in my purse in a makeup case. I have noticed that in a public restroom that my girlfriends and I tend to finish up and hit the sink for wash up at that same time and if I didn't tell anyone they would never know. Life goes on after RC and you adjust. I tend to think that the IP is a great choice it is continent and convenient. I don't have to sit down on dirty toilets in gas stations and having to go while hiking is great now in comparison. I can look you in the eye and tell you that my quality of life is better without my bladder. This would not have been any of our first choices but with time it is amazing what becomes normal. I hope this has helped a little and we are here for you. As you go along the questions will change and if we know we will share with you all you have to do is ask.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
The following user(s) said Thank You: MLGmary, lynette

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7 years 3 months ago #51634 by sara.anne
Replied by sara.anne on topic Indiana Pouch
So sorry to hear about your issues. However, I do think that consideration of a radical cystectomy is appropriate, perhaps even overdue. CIS is not something that you fool around with.

I am sure that you will be hearing from our President, Cynthia. She has had an Indiana pouch for years and, if you didn't know about it, you would never guess. She is a font of information on this and leads a very active life.

One thing to keep in mind...and the most to find a surgeon and facility that does a LOT of cystectomies and is familiar with all types of diversions. Someone who does five or ten a year is NOT experienced enough! This is critical to the success of the surgery and to the QOL for the rest of your life.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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7 years 4 months ago #51629 by MLGmary
Indiana Pouch was created by MLGmary
I'm new to this forum but not new to bladder cancer. Here is my back ground. I was 51 at the time of diagnosis in Oct13, i was shocked, I'm a healthy active non-smoker, who had never had any health problems. I had seen blood In my urine off and on for 2 years prior. (I beat myself up everyday for not seeing a urologist when I first noticed it). The first TURBT found T1 HG several tumors and CIS. Six weeks of BCG and another re-occurrence in April14 with several superficial LG tumors. Another round of BCG w/ interferon. Third re-occurrence in Aug14 again LG papillary tumors. Due to shortage of BCG went to MitomyicinX6. I Was cancer free until March 16, found CIS HG , BCGx6 and then cysto, TURBT seen more LG papillary tumors. This past week had first mitomyicin treatment. I usually tolerate treatments fairly well but I have been a prisoner in my house for 4 days, horrible spasms and in the bathroom literally every 15/20 minutes. After UC showed no infection, the nurse called to tell me a Cystectomy would be the best bet, since I'm not tolerating the treatment. I know this is a huge change in QOL, but my QOL is not so good right now, and for the past 3 years with urgency and frequency.

After my long story, I think it's time to look at an Indiana Pouch. I just want to know if I can still have a very active life with this? I heard recovery is very hard. I'm in sales so I don't have a office, I will be cathertizimg in public restrooms. How do you live with this? How long does it take to cath? Can I still enjoy my life? I haven't stopped crying, Im sad, angry and hopeless. Any help would be great.


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