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Hi Cathy,
I have reached out to a Support Group member who has an indiana pouch to see if she would be willing to talk with you. Would you be willing to talk on the phone, if yes, please let me know by clicking on the ‘SEND A MESSAGE’ directly below my Nightingale name on the left hand side.
My best,
Hi Cathy,
I have not seen a private message from you so thought I would ask you to post a reply in here with your willingness to talk with a volunteer who has the Indiana Pouch and can share her story with you. Please let me know.
Thank you.
Hi Cathy,
I got your reply from the BCC webmaster, for some reason it went to him rather than me. Out of curiosity what did you do to send your reply? I’m asking, because I’m trying to help him figure out why it went to him. We’ve had several replies to to him in the past 2 weeks!
Regarding your situation…are you not being given options?…has it already been decided? The person who I contacted has agreed to talk with you if you’re still interested.
My best,
I am trying to decide on this same issue. I thought perhaps the Indiana pouch, which is what I told my surgeon. But as I wait the months for the surgery I am wondering whether the Ileal conduit would be better.
XandraXandra
Hi Cathy,
Thanks for the update. I understand from talking with our Peer Support Volunteer who has the Indiana Pouch that initially she too had complications, but today all of that is behind her.
Hi Xandra,
If you would like to talk with our Peer Support Volunteer who has the Indiana Pouch, let me know by posting in here and I’ll contact you privately to get your email information. Thank you.
My best to both of you,
<p style=”text-align: left;”>I would like to talk with a woman with an Indiana Pouch if possible</p>
Xandra
New to BCC Forum
Diagnosed first in July 2022. Was told that it is aggressive form but superficial so BCG treatment was prescribed. Then again biopsy on Aug 29, 2022 (urologist did not inspect the whole bladder in July). This biopsy determined cancer to be muscle invasive. Urologist referred to oncologist for chemo. Oncologist suggest straight surgery as chemo offers small benefit. Urologist again advised chemo before surgery as surgery cannot be scheduled before new year. Now taking chemo.
Surgery involves removal of bladder and possibly, in the worst case situation one kidney, as one ureter is suspected of cancer. Urologist talks about outside bag. Any info, support from members went through such surgery would be of immense help. How is it like to live with outside bag?
Hi Om,
Thank you for sharing your situation in the Forum. I am reaching out to one of our moderators to post a reply to you in here so others can benefit as well. Stay tuned.
My best,
I am 31/2 years post surgery for bladder removal and I have a urostomy. I can do almost everything I did post surgery but it did take a while. Presently, I get 5 days of wear time from each appliance and I wear a 2 piece. I can get more time but I just change on the fifth day after I have my shower. I am able to shower daily, go swimming and do normal chores same as before. I know some people who get more wear time and others who get less, everybody is different.
If you elect for the external pouch, you will wake up from surgery with an appliance on. They will change it once or twice in the hospital and hopefully they will send you home with some supplies. Homecare should visit soon after you get home and help you through the first period and get you more supplies as well as teach you how to change the appliance and take care of your skin and stoma.
Each hospital has a supplier of ostomy supplies and that is what you will be given. There are 3 main suppliers, Hollister, ConVaTec and Coloplast as well as Salts and Marlen. All have good products and I encourage you to talk to the suppliers from each and get free samples. The reps at the suppliers are very knowledgeable and will help you with any questions you may have. There are 1 piece and 2 piece appliances and the best one is the one that the user is most comfortable with as far as comfort on the body, wear time, ease of changing, etc. What one person thinks is the best may not work as well for another person. Experiment with the different companies and see which one is best for you.You may have accidents until you are fully used to your appliance. Don’t worry about it, accidents happen. Products fail, a cut in a pouch, night tube pulling apart because you rolled over too far have all happened to me. Do the best you can to limit these accidents but don’t stress yourself over them. One person I talked to didn’t want to travel in case they had an accident at a friends house. I told them that family and friends will understand. Be upfront with people and explain your medical condition, it is nothing to be ashamed about. You are still here to enjoy your family and friends.
I also encourage people with an ostomy to join a local Ostomy Association as you can pick up lots of tips there. There are usually monthly meetings and almost everybody there will have an ostomy or be a caregiver for somebody with an ostomy. Nothing to be shy about as everybody has some knowledge about the subject. If you go, don’t be afraid to ask questions. Remember, there are no bad questions, you might think that it might be a silly one but you need an answer. Most associations have a website with very valuable information on it. Ostomy Canada has a website where you can find where the nearest ostomy association is to your geographic location as well as information about anything relating to an ostomy.
Bladder Cancer Canada also has a very good support network and if you have questions, ask and you will be put in touch with someone who can help.
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