New to this and facing RC

15 years 4 months ago #22695 by Jeff F
Replied by Jeff F on topic New to this and facing RC
I have an ileal conduit. For 6 months post surgery I had healing problems. My wound would not heal, I went through wound pacs, and other procedures for 4 months, then I underwent a revision which pretty much "trenched" my stomach and removed all the tunnelling that had occurred. Anyway, I am now 10 weeks post-revision and am completely healed.

That being said, if I had chosen a neo bladder I probably would have been in a lot of trouble due to the post op problems I had. One never knows. Now that my wound has healed, my bag appliance stays on with no problems. It is a disability, no doubt, but minor compared to many others. I read an Italian study recently that said people with all 3 options seem to adapt themselves equally to whatever they have chosen.

Best of luck with your choice.

BC diagnosed 01/2007
Cystoscopes and Miomyacin in 2007
R/C ilial conduit 04/27/2008

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15 years 4 months ago #22693 by Melodie
Replied by Melodie on topic New to this and facing RC
Wow - all good comments - that's what I like most - is learning more about how we warriors are handling our new operating systems - we are all so different - we are all so lucky to have something that works for us. I, like Pat, am very alergic to the adhesives...I did not know that until I came out of surgery and we saw the outcome of the bandages...fortunately for me, I found that the expensive dressings that are made in Finland work for me. I have not had to empty from an auto but have practiced just in case to see how my Indy would server me...and I did fine. I carry 4-5 catheters with me to work daily as I tend to consume about 60 oz. during the day but I just put them into a sandwich baggie and toss them in my purse. Thanks all for sharing. Melodie

Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright

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15 years 4 months ago #22673 by Patricia
Replied by Patricia on topic New to this and facing RC
Bali..i sure didn't want to say anything disparaging about an ileal conduit..i just wanted to let you know that over time that carrying a couple of caths is no big deal...and hey i emptied into a mayo jar in traffic on the way home from Cleveland while stuck in traffic...we all learn the tricks of the trade!!!
I understand we don't all have choices in the matter.
Pat

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15 years 4 months ago #22666 by balihigh
Replied by balihigh on topic New to this and facing RC
I did not choose the illeal conduit. It was chosen for me since I had colitis and they could not use my colon for a neo or IP. At first I was disappointed but I wanted to point out that there are advantages and disadvantages to all diversions. As RAH said, most people seem very satisfied with whatever they end up with. I think that says something about us survivors. We are adaptable and positive and we seem to make the most of what life throws at us. My friend has a colon bag and she too is allergic to latex but they do have adhesives for that problem. I saw her skin around her stoma once and it was horrible-looked like raw meat but once she got the proper appliance, she doesn't have that problem. Just research and get the right one for you and if you don't have a choice like me, you will make the best of it.
Balihigh

female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduit

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15 years 4 months ago #22660 by Patricia
Replied by Patricia on topic New to this and facing RC
Just a reply to having to carry around catheters.....i like carry 2 and my pouch is so well trained i rarely have to empty when i'm out. I'm also super allergic to any latex or anything affixed to my body..including the non latex bandaids i use over my stoma...I would never have been able to affix a bag to my body ..it would have been a nightmare for me. The temporary bag i had to wear while the bladder was healing was a pain for all involved..the poor stoma nurses were pouring powders and whatever they could under it.....yikes.
Pat

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15 years 4 months ago #22652 by balihigh
Replied by balihigh on topic New to this and facing RC
I too have the illeal conduit and am very happy with it. I agree with RAH but have a couple of other advantages to add to his. With the bag, you can empty just about anywhere. My husband and I do a lot of hiking and outdoor activities. I would not like to carry around the catheters needed with the Indiana pouch. I even emptied in a NY cab on the way to the doctor's office into an empty water bottle because we were caught in traffic since it was UN day. The "bag" does not limit my activities at all and sleeping through the night is a big advantage for me.

Many people are completely satisfied with the neobladder and the Indiana pouch and as RAH said, most seem satisfied with whatever diversion they chose. There is no ideal diversion but it is important to know all the advantages and disadvantages so you can make a decision that fits your life style.

By the way, I am a 60 year female and I know men and women are different. My surgery was in Sept. and I was back to doing most everything I wanted to do 6 weeks after surgery. Now I feel 100% and I am amazed. I think I was in fairly good shape for my age. I walked 2 to 3 miles a day and am back to doing that again. In fact I feel better than I did before the surgery. Part of that is emotional I am sure. The anxiety of having cancer and facing surgery can deplete your energy. My path reports were excellent and I feel everything bad is behind me now.
Good Luck,
Balihigh

female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduit

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