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Indiana Pouch
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Linda,
So glad we had chance to talk; I am here for you to help in whatever way I can; sometimes we just need to hear the reassurance of others who have been there an done that. If you feel so inclined, please give me your home address on a P.M. and I will mail out to you some “get well” “stay strong” cards, etc., info. and samples that might be of help to you. Keep a strong, optimistic attitude and you will be fine. You will be in my prayers…on my daily list but especially tomorrow during your sugery time. God bless and take care. Hugs being sent to you.
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightGood choice Linda. I was just guessing as i remember Dr. Huang from my visit to USC/Norris some geez..9 yrs ago now.
Dr. Hrebinko seems to be very popular with his patients and is also rated as one of the Best Docs in Castle Connolly and i’m always looking for someone who can do the Indiana.
I wish you the best. Please know that everyone experiences it a bit differently..and you will do well with this diversion.
Happy Go-Lytely to you :laugh:
pat
Linda,
I have sent you a pm (personal message) so check your inbox for mail; put my work and home phone number, and if you don’t get me, please leave a message with your ph. number and I will try my best to reach you.
Certainly you have a lot on your mind; and probably moreso, after reading our recent posts. We just want you to have the best care possible and to be as prepared as you can for the challenges ahead. I’m not qualified to comment on the qualifications of any of the surgeons, not even my own, but I do believe one should feel completely comfortable about their doctor and as good as they possibily can about what may happen during surgery. I am a person of faith and prayed alot about that subject, and by the time I was three days away from surgery, a complete peace about it settled over me. I was completely at peace and very much at ease when I checked into the hosptial the night prior and did not need anything to relax me. If I had not been at peace, I would have cancelled the appointment.
Linda, I’ll check my phone throughout the day. Wishing you all the best and you are in my prayers…especially tomorrow.
God bless. Hugs to you.
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
No, It’s Ronald Hrebinko.
Sorry Linda..you did mention in your first post…its not
George J. Huang, MD by any chance? I know he trained at USC/Norris which is a top bladder cancer facility.
pat
Pat,
Certainly, I’m having it done at the University of Pittsburgh Medical Center.
Linda
Linda…i just hope you’re at a major university or cancer center…there are some contraindications for continenet reservoirs…and one being IBS depending on how severe it is. Many surgeons will not do it.
Contraindications
The major contraindications to urinary diversion are bowel-type specific. Because of refractory metabolic abnormalities, jejunal segments should be used only in the absence of another acceptable type of bowel segment. Bowel injured by radiation should not be used for diversion. Patients with poor renal function, severe metabolic abnormalities, and significant proteinuria should not undergo diversion with continent reservoirs. Additionally, patients who lack motivation or are unable to catheterize a continent reservoir should not undergo diversion in this manner.Because of the potential complications of a continent reservoir versus a noncontinent diversion, the urologist must be aware of the following specific contraindications prior to performing continent diversion:
Elderly age and spinal cord injuries associated with poor hand coordination are absolute contraindications for continent urinary diversion (including neobladder) because of the need for intermittent catheterization and the potential for catastrophic complications should these individuals fail to do so.
Bowel abnormalities such as Crohn disease,
Severe Irritable Bowel Syndrome, fat malabsorption, and, potentially, ulcerative colitis preclude the surgeon from taking long segments of bowel.Patients with a preoperative creatinine clearance of less than 60 mL/min should not undergo continent urinary diversion.
Those with a prior history of high-dose radiotherapy to the abdomen and/or pelvis should not have long lengths of small bowel used.
You may find yourself with an irritable pouch syndrome.
May i ask where you are having this done. I know a little late but i’m the devils advocate here and just wanting the best for you……Pat
Hello Linda,
I can’t emphasize enough that the most important part of this surgery is the skill of your doctor (specially with an Indiana pouch). I am comforted to hear that you have checked out your surgeon so thoroughly.
No one on this forum can make a case for this surgery being any fun. Its not a walk in the park. But the right pain management will make it more tolerable.
Walk, walk, walk as soon as you can. Each day you will feel better. Don’t be shy – if you need something – ask. If a nurse isn’t kind to you send her packing! This is the one time when you can demand the best from others.
And know you will get through this. Just keep reminding yourself that this too will pass.
Let us know how you are doing.
Best,
Gracie
Hi Melanie,
I think I’ve just been overwhelmed. I start my bowel prep tomorrow for surgery Friday and the reality has certainly set in. I do have a highly recommended surgeon and I did speak with one person who he performed an RC on, although he did not have an IP. I was also made aware that while the Indiana Pouch is the intended diversion, the possibility exists that it may not happen. I have suffered from irritiable bowel syndrome but he’s very hopeful that the pouch will work. There are some times I think I should have explored alternative therapies but I feel I’m up against the wall with regard to time. I also realize that some of that is due to my fears. I truly appreciate all the info everyone has provided. I also read your web site and it was truly helpful and informative. You offered to speak with me by phone, if that offer is still good, can we talk tomorrow?
Linda
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.
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
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. :)
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightHormone 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
Volunteer Coordinator
ABLSC
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. :side:
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
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.
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightSign In to reply.
