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Ileal Conduit, Colostomy, Quadriplegic.

 
Posted by Past Member, on Sat Nov 22, 2014 2:12 pm

Anyone here have an Illeal conduit? Colostomy?
The love of my life broke his neck in 1992. So, 22yrs+ post injury. C5/6 incomplete. He used a condom catheter until 2006. Indwelling catheter placed during emergency surgery to remove kidney stone stuck in right ureter where it connected to bladder in 2006. Woke up from that surgery with incredible burning pain in his bladder that has never subsided. In 2008 he got a suprapubic catheter. Again the burning pain, pressure, and reflux to his kidneys has never subsided. Since getting the suprapubic he has been treated with IV antibiotics twice for Pseudomonas. Easly we want to reduce or eliminate the infections to extend the quantity of his life. However, the pain is robbing him of the quality of life. If anyone has an illegal conduit, we would love to hear any and all details, the good, the bad, the ugly. We know that if we do this there's no going back. Try Botox injections to his bladder walls once and it didn't really help but for about a week and even then it only took the pain down from a constant eight to about a seven. Since his last trip to the hospital for treatment of Pseudomonas the pain is still higher than ever and constantly 10 out of 10.

The doctors are suggesting an Illeal conduit. He already has a colostomy and has since 2009. The colostomy has been great.

 
Reply by chet8625, on Mon Nov 24, 2014 9:32 pm

I have had an ileal conduit for about 40 years. The doctor told my mother that without it I had maybe 4 years before kidney failure.

After reading other posts here and elsewhere I have to think that an ileal conduit is the "easy" one of all the ostomies. I have almost no problems with it. I run, work out, bike, have sex all without problems.

 

Ask any questions you may have.

 

Chet

 
Past Member
Reply by Past Member, on Mon Nov 24, 2014 9:35 pm

Awesome. You so much. Are you able bodied or paralyzed? If you ever had kidney infections? How often does your bag leak? Do you change it about every three days? Do you still have your bladder?

 
Past Member
Reply by Past Member, on Mon Nov 24, 2014 9:39 pm

Duh! I should have read that slower. Clearly you are able bodied.

 
Reply by chet8625, on Tue Nov 25, 2014 9:41 am

No problem. Yes, I'm able-bodied.

I used an appliance that I glued to my skin for most of my life. It was OK but the more active I got, the less the glue held. I recently started using the Coloplast products and have found their adhesive qualities much better. If I'm doing a lot of bending, etc... the adhesive can break down but I have found that the additional ashesive strips help a lot. The base against the skin can last up to two weeks and I change the snap-on bag every 4-7 days. The bag itself is durable but I wouldn't push it past 7 days.

I do still have my bladder. I'm not sure why they didn't take it out while they were rearranfing the plumbing but it hasn't caused any problems just being there.

 
Reply by SheliaBaby, on Thu Dec 04, 2014 12:37 am

Hi There!  My name is Shelia.  I am 49 and have had an illeal conduit since I was 5.  I have had no major problems with it over the years and consider myself  lucky.  Not that I \"wanted\" it but at the time it was a have it done or she will die choice given to my parents.  Like another person mentioned, I also used the appliances with glue/paste for the first part of my life.  I currently use one piece that just \"sticks\" on to your skin.  And the adhesive strips are helpful.  I have used Hollister but also some Coloplast and Convatec recently.   I have only had a few problems with infection through my life and they usually cleared up with antibiotics.  I did have one problem a couple of years ago that was pretty bad.  I got kidney stones that were probably caused by a medication I have to take.  They were too large to \"pass\" and I had to have surgery to remove them.  I even had the opportunity to have it \"reversed\" or done away with.....where it would be indwelling or something like that when I was MUCH younger and I said no.  I had become accustomed to the ostomy and did not want to have to catheterize several times a day.  I guess that might be hard for some to understand.

I understand that your boyfriend has some severe handicaps to deal with but I can honestly say that from my experience the illeal conduit has been a positive experience.   I am sure it is different for every individual but I wish you both all the luck in the world.  If you ever want or need to contact me I cannot leave info on here but maybe you can reach me.

 

PS:  BTW...I have a wound on my foot right now and just getting over a psuedomonas infection...say it is common ....but must be a booger.....I\'m one of the people that are antibiotic resistant.....LUCKY ME! LOL

 
Reply by chet8625, on Thu Dec 04, 2014 5:22 pm

Hi Sheila,

Sounds a lot like me. I got kidney stones and they were also pretty big. Three weeks in the hospital with lithotripsy every other day. Finally put tubes in with a drip to dissolve them.

 

It was also suggested to me to reverse it but like you I chose not to.. Met a guy who did and was happy with it but to each his/her own.

 

What products are you using now?

 
Reply by iMacG5, on Sun Dec 07, 2014 6:17 pm

Hi Mandg.  There are many bright, caring people on this site who would jump at the chance to help but there are sites more specific to situations such as your love\'s. 

http://sci.rutgers.edu/forum/index.php seems to be a good choice. 

Respectfully, Mike

 

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