Ileal Conduit to Continent Reservoir Urostomy?

[janeeotoole]

I had this on the main post but it's probably better here. I have an ileal conduit urostomy to which I use an external pouch, although I am very prone to UTIs and kidney infections, some so severe they have required emergency hospital visits and morphine for pain. I'm afraid of kidney damage. Have any of you out there had a reversal on an ileal conduit and switched to a continent reservior diversion (Koch pouch, I think it is called) to which you externally catherize yourself? How do you like it in comparison? Do you have infections?

[Lynne]

Jane,

There is someone here that I'm hoping will respond to your post soon.

Squid ..................are you out there ?????

[squid56]

Hi Jane
I like you had an ileal conduit to start with. I had mine for 6 years and due to repeat chrionic septic infections as well as other problems I had it switched over to an internal pouch. That was 16 years ago. It has made huge difference in my life. While I do at time still get infections they are no where near as frequent. Having the internal pouch protects the kidneys because when they create they make valves so that urine does not relfux back into the kidneys like it does with an ileal conduit. My kidney function got better. I LOVE my internal pouch, it is as close to feeling normal as you can get without a bladder. I had mine done at Lahey Clinic in Burlington, MA. I'd be happy to answer any questions you may have. Judith

[JMA]

Hi Jane,

I to started out with an external pouch and after 5 years went to the internal pouch. I cath through my belly button. I had that done over 2 years ago. I love mine! The first 8 months to a year, your pouch is trying to get used to its new job. I had a few infections in the pouch at first but I have never had a kidney infection. There is no comparison between having a external and internal pouch. The internal pouch is awesome. I was on 50 mg of macrodantin at bedtime and that kept the infections away. I use one time use catheters so they get thrown away after each use. Insurance covered their portion so that was good. My doctor had me use those from the get go so that is all I have used. He just felt that one time caths help to cut down on infections. I make sure that my hands are clean and I don't have a problem with infections. In fact, I recently went off of the antibiotic to see how I do. I do not want to take them if I don't have to. In the beginning as your body is healing, I think that you are more prone to them anyway. With my external pouch I never had one infection in the 5 years so I can not compare the two. Like Judith said, the internal pouch it is as close to normal as you can get without having a normal bladder. I think it would definitely be something to discuss with your uro.

Jeanne

[jrickard]

Jane, just 9 weeks ago I had my ileal conduit changed to an internal pouch (Indiana Pouch is one name for it). I lost my bladder to cancer two years ago - I was 47. I've got to tell you - at first I thought I had maybe made a mistake having the pouch- but now - no way! It's great not having a bag hanging on my leg or a bedside bag a night! I know it will get even better over the next 10 to 12 months! At this point I go every 2 - 3 hours (more frequently when I drink coffee - unfortunately) but I believe that will get better as time goes on. I just have to train the pouch to hold more. My doctor told me eventually it will hold more than a regular baldder! Heck, the other women at work get up more during the night that I do. I get up once. Yes, there are times when it's a bit inconvenient - but overall I wouldn't go back. I did a lot of praying before making the final decision to have the surgery - God led me to make this positive decision. If I can be of any help to you, just let me know. I will be praying that you make the right decision for you.

[squid56]

Yeah, as far as how much mine will hold- it is about 1,300cc's! Way more than any bladder can hold

[janeeotoole]

Wow, you ladies are VERY encouraging about making the switch! I'm meeting with my urological surgeon in a few weeks and I'm going to bring it up. Everyone I've talked to so far about it have had very positive things to say about the internal pouch. Thank you so much! This site is just awesome! What an incredibly supportive group of people.

Oh, how bad was the surgery to reverse it and what did that entail -- do they just remove your old stoma and sew up the site? I can't image that it is as bad as a full radical cystectomy, is that right? Did they cut into your old scar site? How long was your hospital stay and what was your recovery time? I know everyone is different but just so that I can get a feel for it.

Sorry I have a zillion questions.

[janeeotoole]

I talked to my urological surgeon and he said that it would be difficult to reroute my plumbing to switch over from an ileal conduit to an Indiana pouch; he could do it if I had a problem but right now where I am experiencing only minor problems with the ileal conduit that I should leave well enough alone.

He did say that there were some problems with the pouch mostly leaking. Just curious out there how many of you with the pouch do have problems with leaking? I have got my external bag supplies under control and rarely have leaks so would hate go back to dealing with them.

Thanks!
Jane

[DebbieD]

Have you got your Leaks fixed? I have a urostomy -ileo-conduit for 24 years. No leaks at all. same applaince for all those years also.

DebbieD

[Sutton]

I was looking into making the big switch too and I went to see Dr. Anderson about it in Aiken. I had a parastomal hernia and while researching it I was beginning to think I was going to have major surgery which would involve relocation of my current stoma just to fix my hernia.

I thought, well if that is going to be major surgery just to fix the hernia I may as well go for broke and look into going continent. The uro Dr. said he would need to get a general surgeon involved to fix the hernia and he set me up an appointment to chat with a Dr. he knows right around the corner from where I was. I went to see that general surgeon and he looked me over and checked out my CT and told me that he would like to get a plastic surgeon involved too.

I had extrophy of the bladder birth defect and no pubis bone. I had several surgery's during my life my life one of which allowed me to have control of my urine but, my bladder would not expand. Now that I am older, I have had 4 different incisional hernia's all in different locations in my lower abdomen. Each one of these was a week long hospital stay for me. It seems now that my bowels like to shut down for about 5 or so days when they go into them and move them around. Also I have no muscle for them to work with due to my birth defect and that tends to make things even tougher for them to fix me up which is why the general surgeon was wanting to get a plastic surgeon involved.

All three Dr.'s talked and decided that I was simply too high risk and that they did not have the proper team of surgeon's there in Aiken to fix me up. They referred me to MUSC in Charleston to a Uro Dr. Fryer. When I went to see him he had reviewed things and asked me if I was having any problems with my current stoma. I told him other then the hernia and occasional UTI's no, not really. He then told me that if it isn't broken then lets not fix it. Just keep what I have for now and that leaves me with the continent procedure option later on down the road if I ever need it.

I was concerned and very uncomfortable about the hernia and wanted to get it fixed but, I did not want to hear lets not do the continent procedure and lets just fix the hernia thing. I voiced my concern about if it was going to have to be major surgery that I wasn't going to be happy with simply relocating the stoma to fix the hernia. He refereed me to a Irish Dr. Byrne there at MUSC and told me that this Dr. could fix it without having to relocate my current stoma. He even got on the phone and arranged for me to take the CT disk over and to see him right then. That was awesome considering MUSC is about 100 plus miles away from my home and the current gas prices.

Dr. Byrne was awesome. He had fixed three others using synthetic lab grown skin, which the body doesn't reject and the body readily includes it as part of my body supplying it blood etc.. and keeping it alive and well. This is a huge advantage over the traditional Kevlar mesh material normally used to repair hernia's because this synthetic skill will stretch grow shrink etc.. with my body unlike the traditional mesh. From now on any hernia's I need to get fixed I am going down there to Dr. Byrne to get the synthetic skin. I am patient number 4 he has fixed with it and I am here to tell you I think it's awesome.

Just like normal I have to be different when it comes to hernia surgery. Dr. Byrne learned why my hernia was so bothersome to me when he got into it and discovered that my hernia had attached it's self to my stoma and had to be cut away from my stoma. Dr. Byrne also figured I would be out patient surgery too but I then began to tell him about my last 3 adventures with hernia's and how each one was a week long stay in the hospital each time and that I didn't expect this hernia repair to be any different. Dr. Byrne then based on this knowledge said ok we'll plan to admit you for one night and then take it day by day from there.

I went in on 08-12-2008 and was operated on then I was discharged from MUSC on 08-18-2008. I am extremely pleased with the hernia repair and would recommend looking into the "Skin Fix" to my family and friends who would need to get a hernia fixed. It may not be for everyone but I am very pleased especially since my stoma did not have to be relocated like I was thinking was going to have to have happen.

I still would love to go continent one day but for now the Dr's I have spoken to are thinking I am way too high risk to try that with now. Perhaps I will be able to go continent one day, but for now looks like I am still stuck with my illeal loop urostomy.

Now that my huge bulge from the hernia is gone I now have to find a new appliance to wear or figure out some kind of combination that will work for me. I am contacting distributors and asking for samples of different things. But being deathly allergic to latex also helps limit my choices.

By the way in case anyone needs cheap uro supplies, I saw some on EBay

http://cgi.ebay.com/ws/eBayISAPI.dll?Vi ... EF:US:1123


and

http://cgi.ebay.com/ws/eBayISAPI.dll?Vi ... EF:US:1123

[jeff25]

I had this on the main post but it's probably better here. I have an ileal conduit urostomy to which I use an external pouch, although I am very prone to UTIs and kidney infections, some so severe they have required emergency hospital visits and morphine for pain. I'm afraid of kidney damage. Have any of you out there had a reversal on an ileal conduit and switched to a continent reservior diversion (Koch pouch, I think it is called) to which you externally catherize yourself? How do you like it in comparison? Do you have infections?

Hi, I'm new here and came accross your old post first. did you ever get a new pouch? and how about the leaks.
I'v had my koch pouch since the summer of 1984. I was 14. I can't believe its been 30 Yrs.!! But I was irresponsiable with my sterile habits as a teenager
and had many infictions. I thought all I had to do is pop some antibiotics for 3 or 4 days and I was as good as new. How simple is that? I was very active,
went to the beach every summer for years. I ran 4 marathons and for 7 yrs. I did Triathlons. I could pedal my triathlete-bike for 100 miles on the weekend.
and swam laps in the pool every day. but those infections would come up every 2 to 3 yrs. and as you probably know they come on very fast. Very painful
and I would bee in the emergency room 3 hrs. later. almost instantly I would feel beter with a an I.V. of Levoquin and saline. But all those years
I didn't know that every infection was doing a LOT of permanet damage. So now I need a kidney transplant.
My qusetion is, has any one here had the same thing happen to them?
Thanks for reading this, looking forward to all replies.
Jeff

[squid56]

Jeff, wow this is an old thread! I got my pouch in 1992, so hard to believe it is 20 plus years old! I also got infections with my pouch, but not as many as I had with the conduit. Sorry to hear you need a transplant. I also see a nephrologist. I was told I have CKD (Chronic Kidney Disease). I am not bad though, I only have to go see him once a year. I get labs and other tests done to keep on top of things. I do have kidney stones, rather decent sized ones, that are also being watched. I did have one give me trouble by getting trapped in my ureter 2 yrs ago, but otherwise I am fine.

[jeff25]

Do you know what your creatninine level is? Mine is 4.4 I'm slowly learning what all the numbers mean there a lot of measurements to look at.

[squid56]

I have no idea what my creatinine level is. I do get it checked regularly when I have my lab work done. It is usually ok, the only times it gets off is when I have an infection or my kidney stones are acting up

[Iversonlc]

Will insurance pay to have an ileal conduit changed to a continent reservoir? Also, any recommendations in the Washington/Baltimore area? My original surgery was done at Johns Hopkins by a surgeon that's no longer there. The urologist that is at Hopkins now doesn't want to revise the previous surgeons work.