Surgery in two weeks

[dicecat109]

I am receiving an Indiana Pouch in two weeks and hoping some of you might have advice from your experiences that you wish you had known before surgery.
One of my concerns is the correct placement of the stoma. My doctor suggested my navel or my side. It seems my naval would be too restricting when I have a tight waistband. What are your thoughts?
Have you all heard of too many problems with the Pouch instead of a bag? Are there follow up surgeries I may have to schedule?
I am also concerned about the physical and nerve damage changes that may effect intimacy. Judith from your site suggests she enjoyed finding new positions She also suggested I inquire on continent diversion page, so here I am. My surgeon is very vague saying he will try not to damage nerves. Will my size change?
Also, what trials will I have during recovery? Will it be more or less pain than I might think? Will I get frustrated with things not working right? How can I be prepared mentally?
Every time I read of someone who had this procedure years ago, I am encouraged. I guess I am looking for happy stories, or what to avoid to have a happy story.
I am an active 58 year old woman. Love to boat, golf, ski and still work fulltime.
CJ

[rikki]

i only read your post today. how did your surgery go? i pray you are doing well. it takes a while to feel better but better is on the way

[DebbieD]

I have a Ileo-conduit for 24 years. I had a couple of Problems. But considering what I went through with IC I will Gladly wear the Bag. Back then they were not doing to many internal Pouches. Plus I do not have any spare parts to go that way.

I hope things go okay for you. I will keep you in my Prayers. Let me know if I can help in any way okay

DebbieD

[Chuck]

Hi dicecat109, I've had my Indiana Pouch since 04/04. I had invassive bladder cancer I've had very little problems. You need to know that your life has changed and the way you go potty is mostly by time. I have to keep track of where i'll be and make sure a bathroom is available. I've had urinary infections and kidney infections. I believe those to be pretty common because of your self catheter. I'm also 58 yr.old and I'm very active. I am very shy about my long scar and stoma so i don't take my shirt off. I still work, camp, fish, boat, swim(with a water proof bandage). Almost everything is the same in my life except for little inconviences. Being a male, I could go to the bathroom in less than a minute. Now all the cleaning & careful handling of your equipment, it takes about 10 minutes. I wish you well and hope to hear how your surgery went. God bless you, Chuck

[squid56]

I hope all went well. I did not have any nerve damage, but as mentioned before I could no longer use certain positions. So where did they end up putting your stoma? Before mine, the ET nurse came in and marked two places where it would be best for my surgeon to put it. Did that happen with you? Post when you can, I know most likely you still feel pretty lousy as it is a big time surgery. We are all here to help you through the rough spots. Judith

[dicecat109]

Thank you all for answering my pre-surgery questions.

I had surgery Sept. 2 and was in hospital 10 days and full care center another week. Felt like I was hit by a Mac Truck.

Now I am home, walking, driving, working. I feel like I've rejoined the human race! I still have my overnight bag drain to be removed next Monday. Overall, I am thrilled with how things went.

I am also pleased with how easy it is to go to the bathroom using my illeal conduit . . . so far. I've only used it every two hours since Sat.

I received the Indiana Pouch and my stoma is in my navel, which I love. I don't feel disfigured like I was afraid I would. Actually, I feel blessed. My path report said the cancer had not reached the bladder muscle and that 69 nodes were removed; all tested clear. I should lead a long productive life, which is just what you all are reporting. I love the outdoors; boating, snow skiing, golf.

I am told it is best to wear a medical ID, but not to engrave "Indiana Pouch" on it, because most medics will not recognize the term. Do any of you wear an ID? What does yours say?

Cathy Jo

[Carl W]

So glad to hear that all went well. We forget how rotten we felt after that invasive surgery. But, face it. With your "innards" laying outside your body cavity in a pan with sterile water in it, you bet you feel badly! But we live through it. I had mine done in Indianapolis by Dr. Kock, and caught a plane back to Ft. Lauderdale the day after getting out of the hospital. Man, was that rough! But we live through it.

I've had two other major surgeries since then, to repair surgical hernias. Neither was as bad as the pouch surgery. But we live through it all.

It's a great alternative in my mind to having the bag, but we all have our own preferences. Three years cancer free, and feeling great!