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I thought I could use my catheters forever, but I learned on this forum they need to be replaced because the end of the catheter (by the holes) becomes weak and can start to wear off. So I use mine for about 6 months & replace. I use soap & water to clean, nothing else. It would be interesting to know how others clean their catheter. Kara

stoma nurse told me to replace every month. i get gunk the entire length, which best i can tell is from greasy food. i have one of the plastic coated wires from romex cable in my bathroom. first, stuff a small (2 sq in +/-) paper towel in the end and push through w the wire. then use a bobbi pin to dislodge the disgusting paper towel out of one of the holes in the bullet end. i'm open to other suggestions. for me soaking in vinegar, soap and water doesn't help. perhaps it is the food that i eat? janet

I've been using the same 4 catheters (in different kits: home, purse, 2nd bath...) for about 5yrs...no joke. I can't get them here so I keep them until they start to crack...once they crack they go...I rinse with tap water, on occasion when at work I use the hand soap to wash my hands and cath at the same time...gunk doesn't stick too much and when I get home I rinse well...never had a problem or infection... the only problem can be the odour.

No special soap. Bleach makes the cath stiff and dry and more likely to crack. 

After nearly 38 yrs I am pretty relaxed and cool about it...(sort of like a woman with her 3rd kid...no more stress...just old habit!).

Relax, it is easier than you think!

Sharon

 

I use the solution once or twice and that's it because of the bleach. But most of the time I use a cleaning brush. I purchased a (ME6032) Continent Catheter Cleaning Brush. I then purchase pipe cleaners and wrap the pipe cleaner around the brush and cut the excess off. Depending on the diameter of the catheter that works well (if the catheter is 30 FR). I remove the pipe cleaner and discard it. Hope this helps. Mary

 I just wash it out in the sink as I figured nobody knows for what the catheter is used.  If I am with a friend then I am more discrete and put it in a baggie and wash when home. 

 Is the incontinence the only reason that the J pouch isn't working for you? What does your doc think  is causing the incontinence?  

The catheter used to empty a BCIR is about 18 inches long and most people have no idea what it is.  It can be washed in the sink in less than 15 seconds, placed in a bag or case and you leave the restroom before anyone realizes what you have done. I have done it many times.  You can also bring a bottle of water and a syringe and flush the catheter in the stall.  When water is not available, the catheter can be put in a plastic bag and washed later.  Although the BCIR is an excellent solution for a failed j pouch, you should get a second medical opinion to determine if other treatments can correct the problems you are having with your pouch.

Bill

JLH- I have seen 2 colorectal surgeons in my home time - waste of time - no answers and just told me to try konsyl. 

My Longtime GI doc just scoped and did say there is a stricture. I asked about dilating but he said it would not help incontinence and that it would come back. He also did biopsies to again rule out Crohn's as there were a couple of ulcers in terminal ilium above pouch. 

It is frustrating because there is no one in town that specializes in j pouches etc. my surgery was done at Mayo in 1992 - 

let me know if you have any suggestions. I have just been doing a lot of online research to try to determine best course. 

Thanks!!

 To answer your question about incontinence, I went to a pelvic floor physical therapist – – I think that's the  specialist name. After lots and lots of biofeedback, some manual therapy and considerable amount of core exercising  I mastered the incontinence.     It was a lot of work, which is all for not now, as I have a k pouch.  I'm sorry you're going through this as I know how incredibly terrible of an experience it is and how unbelievably frustrating to try to manage your life when you're incontinent also.

 I will be curious to hear what the biopsies indicate. If it is pouchitis, then that may be one of the causes of incontinence. It was one of my symptoms but not everybody who has pouchitis is incontinent. 

This is not the sort of problem that a surgeon deals with, at least  in my opinion most surgeons deal with surgical problems/solutions.  There are many other difficulties with J pouches  and a  G.I. Doctor, Who is familiar with J pouches,  is a better type to scope you and brainstorm on what is possible. If that  dr doesn't see  many J pouch patients,  perhaps he or she can contact mayo, even though it's been 25 years. Just a thought.  

Lisa,

One of the reasons that I ended up with a pouch was incontinence....i was born with what they now tell me was called anal atresia...my rectum didn't reach all the way down to my sphincter.

Many surgeries later they had essentially attached the rectum but slit the sphincter through in a few places...they gave me a colostomy at 2.

After reconnect 1yr later I was partially incontinent. It only got worse as I grew up. They tried everything to no avail. They even did 2 separate gracillis muscle flap surgeries to create a sphincter.  In the end I ran out of spare body parts and gave in. I was 18.

I also had something between IBD,  IBS and UC.  That turned a horrible situation practically suicidal. 

My k pouch saved me...no question about it...it gave me a quality of life that I had never known.

38yrs later I still don't regret it.

Sharon 

Thanks Janet,

I wouls like to say that God doesn't give us more than we can bare but sometime I am not so sure.

Being trained since birth to deal with this may make you strong but as the years go by you realise all if the things that you've missed out on.. .graduation, movies, camping, dancing...having children...the list goes on...and we don't seem to get a free pass on the normal stuff either....we still break bones, get sick etc...

The best thing that ever happened to me was Dr Cohen and the k pouch....

He didn't give me "back"my life.. ..i had never had one...he gave me a whole new one.

Although he greatly deserves his retirement I cringe at the thought that he has no replacement.

Sharon

I purchased my Medina Catheters from Vitality Medical. You may need a prescription. If you go onto Vitality medical website and search for 'catheter' you may get urinary catheters. I just did it. But when I searched for 'Medena Catheter' I found the catheters I use. Medena Catheter 30 french. I hope this is useful. Good Luck.

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