Indiana Pouch

Linda,

I was hoping to see you had responded to some of our comments. We're here to help. Pat was my mentor when I first came to the forum...and then I tried to mentor Gracie as best I could. I hope your experience goes as well and you later feel inclined to coach someone else along.

As Pat said, the qualifications of the doctor are critical. Not all doctors are created equal; some have the talent for surgery and some don't. You absolutely must have one who has lots of experience with doing the Indy pouch and who had performed them recently. You should also try to find out something about his track record. Can he provide you with the names of a few of his patients who you can talk to personally? I asked my doctors and got names. If you aren't feeling very good about the doctor, I would suggest you cancel your surgery appt. and find another doctor. There is only one you, and you want the very best you can locate and afford.

And not meaning to scare you but the doctor should have told you that we patients also are not all created equal. I have only heard of a few occasions but I do know it happens; sometimes the doctors get in there to perform the surgery and something isn't quite right, the layout of the land, so to speak, and they end up having to do an illeal conduit, the bag on the outside. One of my warrior friends wanted a neo-bladder and woke up to find out he had the bag. He has adjusted very well and now thinks it is a better diversion than the neo. My doctor never mentioned that to me that I might not end up with the Indy but I was aware of it from reading info. on this website. Anyway, hopes all this helps. Just concerned about you since we didn't get too many details.

I think my doctor also said that a couple of her older patients had suffered strokes after using the creams for a period of time, but I could have that all wrong. I have noted there are a number of expensive over the counter products now available. And yes, you are so correct; if you don't use it, you lose it. What we always thought should just happen naturally, now becomes something one has to work at....doesn't seem fair. Then again, I didn't think it fair when I had a bone density test done this week and learned I am now 2 inches shorter than I was at age 20, and of course heavier too. Oh well, I do have a wonderful bladder that does the job and the most beautiful stoma in the entire universe and lots of great friends I have made as a result of having had cancer...so overall, I know I am blessed.

Hormone vaginal cream such as Premarin cream appears to be well absorbed into the blood stream. In a study published in JAMA, it was shown that the estrogens in this cream quickly and effectively enter the blood stream. This means estrogen cream could exert similar effects to taking hormonal therapy by mouth, although it's unlikely that blood levels would be as high as when hormone replacement therapy is used in pill form. Most sources admit that the long term effects of using a hormone vaginal cream aren't known.

pat

Melodie and Linda,

The estrogen cream used for vaginal moistness is very small and stays in the vagina it is not the same as taking a oral pill. I did a lot of online research on women's sexuality and bladder surgery several months ago. I found that it is important for the surgeon to do nerve sparing surgery on women as well as men. It is important the clitoral area still has the nerves and the rich blood supply. Also if the cervix is retained seems to help.

I also read that there is a product called a vaginal moisturizer which is over the counter I looked at it at the drug store and I thought it was expensive. It seems to offer a better result than just lube.

Also to be blunt use it or lose it.

Julie

Linda,

Forgot to talk briefly about the sex issue. My doctor left the vagina per my request as my spouse and I had hoped to resume our lives back to what we considered normal for us. I had chemo prior to my surgery which had an even more drying effect than menopause was having; then following surgery, maybe six months later, the lower unit was so terribly dry, it just became increditably
painful. My doctor had suggested estrogen creams but I have held back on that idea due to the possibility of breast cancer. So, I am still working on how to overcome that problem...even using lots of lube, it's still not enjoyable. I haven't given up the idea, so there is still hope.

Linda,

Welcome! So glad you came to the forum for information. You have lots to digest before survery. The doctors can't begin to give you all the details in regard to recovery - you have to "live" them, as we have.

I, like Pat and Gracie, have the Indy Pouch. I had mine done at age 57 and am now almost at my three year anniversary. I feel very fortunate to have an Indy and have done very well. Gracie is right, it is about life, but I will add to that by saying, for me, life needs to be of a good quality...and I have that as a result of the Indy.

Each person and situation is somewhat different...unlike Pat, I have a 9 inch scar, from just along the belly button all the way to the pubic bone...done the old fashioned way. My stoma is not in my belly button but rather a couple of inches over and down from the navel. It's a bit tricky finding just the right panties so the elastic doesn't fall right across the stoma. I use pads to cover the stoma and even after all this time, I still tend to be more protective of that area.

Pain...I had a block for the first couple of days and then afterwards was given the chance to control my own intake of pain meds...my pain was very well managed. If it had not been, the entire urology floor would have known about it because I am a big baby when it comes to pain. I spent 10 days in the hospital; won't let you go until you have a BM.
Going home with tubes and the discomfort of feeling like you have been kicked in the abdomen by a mule a couple of dozen times...well, that is something to mentally prepare for and know that if you make up your mind to handle it, you will.

Please go to my website; click on the link just below my name and it should take you there. I felt so blessed by this website and all the help I received from Pat and others, that I felt inclined to write my own story and tips for dealing with cancer and how one might adjust to an Indy Pouch. Let me know if you would like to talk via phone and we can exchange numbers.