I order in bulk so always get free shipping. And there is usually a discount code available for 10% off. $1.30 each is better than 1.50 for me, as I use several tubes a week. So I order as many as I need to get free shipping.

Lot's of interesting information here...

I use mini bottles of natural oil with a spray top (like a mini suntan spray bottle) and spray the tip of the catheter...Easy at home. When out I either have miniature tubes of lube that the hospital gave me (they are 1/4 the length of my baby finger!) or the mini packets that I only open a tiny bit and fold to reuse. (I am very frugal...no insurance coverage for any supplies here).

As for stoma coverings, I do not leak but dribble. My valve got an elbow in it when my pouch had fallen off of the wall and every time that I intubated I would 'hit the side of it '...it created a sort of divit...that catches gunk whenever I intubate...it releases about 1/2 tsp of gunk about 1/2hr later...So I need to catch it.

Then it is just mucus and moisture depending on how often I intubate. The more often you intubate the more you create mucus and dampness.

1/2 minipad stuck to my underclothing and a folded kleenex placed against the stoma (the damp sticks it fine) or taped down at night...no expensive patches or supplies (they did not exist back when mine was done so this was the only way).

Other than tubes and syringes, I spend less than $25/yr on supplies.

Sharon

Hi : Sharon: You responded to a post of mine and I was wondering if you had a j-pouch and now I have come across this post and see that what I thought was true. You don't have a j-pouch. So, while it was nice of you to respond to my post, some of your advice was coming from a situation where you yourself don't have a j-pouch so your advice was unhelpful! I kept thinking.. how can she suggest these things cause if she had a j-pouch she would understand they don't work. So again, thanks for your concern but your suggestions were ridiculous and unhelpful and assuming.

 

Good luck with your situation, and I'll keep searching for folks who are dealing with my specific situation and might have some RELEVANT tips.

 

Last edited by Dancing Girl

i'm  not sure who or what you're referring to. But I would suggest that your anger and resentment about whatever it is, is misdirected and probably not helping your health. This is a supportive space of sharing and connection and your post, whatever it was about, is quite inappropriate. FYI, your post appeared on the K Pouch Korner.

 

I know where it appeared. It's a reply to Sharon, who replied to me.. I have a J POUCH and Sharon gave me advice as IF SHE HAD A J pouch and her advice was extremely ridiculous and unhelpful. And I just happened to see her advice to a guy who has UC and she was really off putting to him as well. I would like to suggest that if you have a certain situation and have advice for THAT situation, you give advice for that situation and not assume anything. I would never ever assume to know anything about a K pouch and suggest some thing for someone with a K pouch when I have a J pouch. They are not the same thing!!! And if I gave someone advice with UC, it would be because I had UC for some 28 years before I got a J pouch and I would only give such advice because I can remember every detail clearly!!!

 

littlered--thank you for naming the situation so well.  i concur.

sharon is, far and away, the most knowledgable, helpful and giving person within this support group.  she has helped me immensely, and from reading her other posts i know that many others benefits from her generous gift of support.  that's what support groups are about.  each of us has, in some form or another, difficulties that we bring to the board.  then we help each other.  we are a family that is there for each other.  families do disagree, but please keep those disagreements to your biological/adopted family.  thank you, i appreciate it. jan

Dancing girl, 

I do sincerely apologize if you misread or misunderstood some information that I may have transmitted. I try hard to help people in need, in distress or need of a laugh. I do not always succeed, but I do my best. I have a k pouch, not something that I hide or even pretend to hide, I have had it for 40+yrs and thus have a little bit of experience with it and having had a large number of revisions,  I had to deal with it in a world that did not have internet and social media to turn to for help.

So now, I do my best to help those that feel isolated in their medical issues...again, if I misspoke or missed the mark, I do say that I am sorry.

But we pouchers (and yes, a K pouch, a BCIR and a J pouch are pretty much identical except for where they are placed in the abdomen and their exit strategy) are a rather peaceful bunch. We have been through hell, have survived it and wish to live the rest of our lives happily and healthily. 

Thank you for your input, I will take it seriously to heart.

Sharon

Thank you for your apology. I really appreciate it. Yes, you are right.. we have all been through hell and are now living our best possible lives. If I wish to make any further points with you, I'll do it privately. Again, than you for your apology. Certain ways I need to deal with the J-pouch is not at all like you deal with in the K-pouch or someone else deals with during an ileiostomy and even a loop reversal iliostomy (This I know for sure cause I had both BEFORE the J-pouch.. one for a year and one for nine months.. all three experiences much different.)

 

Last edited by Dancing Girl

Hi all!

My 2 cents here! On lubricants, I have for the last several months used McKesson tubes from Vitality and find better thickness in this products than others , I order in bulk when they have specials. 
If only we could get a better catheter now??

I appreciate anyone’s input at any time, even if it won’t help me at that time.  
Be kind and thankful for the ones taking their time to reach out to offer us help

Janice

 

 

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