Hello to all ☘️

I am running into serious issues finding lubricants for inserting my tube to empty. I use Edgepark and when they became a part of Cardinal, the individual packets are now so tiny, I use at least 2., sometime 3 a time.

The least expensive OTC is not available anymore and KY is just SOOOO expensive as I must entubate appx. 10 to 12 times a day!!  I have contacted numerous suppliers and am being told the same thing, Sorry we can no longer obtain the item.

My Dr. is offering no suggestions and Ostomy nurses are not either.

i fear I will soon be in the Poor House trying to cover supplies, as cover pads also run out well before I remove more.I drip a lot of mucose 

Hey on second thought, , I may also be in the Nut House if the supply issue doesn’t improve, my newest 30 Fr tubes are still too flimsy to insert, so bleaching old ones.

Any ideas? Appears not many people on this forum these days 😢 Miss you all!

Happy St Pat’s Weekend ☘️

Thsnks in advance, Jan

 

Original Post

By being creative, I have been able to keep my supply cost under $100 per year. I use mineral oil as a lubricant and a 16 oz bottle costing about $2.00 at Walmart lasts about a year. Vegetable oil (like olive oil) can also be used.  Put a small amount of it in a medicine bottle for use when away from home. I use generic incontinence pads cut in half to cover my stoma.  Others have used nursing pads, which are a bit larger and more absorbent.  Although they are sticky on the reverse side to hold them in place, sometimes tape is needed.  If taken care of, catheters can last 6 months or more and will become stiffer with use. Although they turn brown over time, that does not affect how they work or present cleanliness issues.  Just flush them out after each use.  By using plenty of lube and gently working the catheter in, a “flimsy” new catheter should work OK.  I have had no problems with the Marlin 30fr curved catheters.

I use vitamin e oil, works well.

 I also use a thin washcloth instead of pads. I don’t have much output, so it doesn’t get that wet. The washcloths are very cheap at Walmart, I think it’s $4 for 18 or more. 

Medicare pays for the catheters.

Hope this helps.

i use the lube jell.  recently paid 18$ for box of 12, 4 oz each, on amazon.  one tube lasts almost a week.  that's much cheaper than using the single packets.  checked and the packets are available on amazon.

i also use the nursing pads.  occasionally i forget to take remove them before washing and what a mess for the rest of my laundry!  kim might be referring to a different  type.  i go through two a day as i produce lots of mucus.  to cut cost you can put a fresh one at night, cover your stoma with half a paper towel that's folded up several times and put the protective packaging from the pad between the pad and the towel.  then, in the morning, you still have a fresh pad.

try putting the catheter in the freezer to lessen the flex.  also, relieve your bladder, inhale, exhale, relax and then insert the catheter.

keep us posted.  janet (formerly jlh--had sign in probs and set up new account )

Lubricating Jelly... https://www.vitalitymedical.co...=lubricating%20jelly

30f Catheter... https://www.vitalitymedical.co...er-30-french-dc.html

I use cheap store brand sanitary napkins/pads. The kind with sticky tape on it to put on my underwear. And I add some double sided tape from the dollar store to keep it in place better (that's optional). I cut the pads in 3 equal parts and one large pack last awhile. I also cut and fold a paper towel to put between the sanitary pad and opening. 

I buy the lube tubes in bulk and I can usually get a better deal when I do that and sometimes add free shipping. I use an old prescription bottle for at home and I purchased a travel bottle for on the road (the size the TSA like). I squeeze some of the lube in the bottle and dip the catheter in.

I also purchase coverlets band-aid to cover the opening at other times. I put a folded paper towel under the band aid to soak up more discharge. I also purchase both in bulk to hopefully save some money.

I mostly use the sanitary napkin/paper towel for the most part. Depending on the situation, I may use the band aid/paper towel for other occasions. But I found that pulling off a band aid 10 to 12 times a day isn't really fun. So that's why I mostly use the sanitary napkin/paper towel combo. 

But the reusable bamboo pads seems intriguing. I think I'll look into that as well.

Thanks to all for all the info. Good luck and peace of mind to everyone. Have a most beautiful day. 

Hi, 

Happy to be getting all the responses. I use a tube every 2 days. Only use the packets  when on a longer journey, or more now as I can’t keep the tubes in supply. Presently both on back order I am told!

I do order in bulk and buy every one on the shelves I can for of 3 inch padded bandages , waterproof,and add the extra padding of soft layered gauze , then cover all with folded paper towels taped on me and still many times am leaking through. 

I have had 2 Jpouches and now the  Kpouch, a year and a half, do you all think this has to do with  having very little bowel left, that I have to empty about 12 times a day? 

Also, huge amount of gas adds to difficulty of entubating, also adding to the cost of clothing, big clothes, little clothes😳😂,But all women get that issue. Hmmm?

2 months ago ago I had a fecal transplant for C diff and at least my poop 💩 doesn’t stink anymore ( well that’s what I think anyway🤷‍♀️) I’m kinda restricted for awhile on what I can put in me.

Im gonna try Amazon again today.

Thanks for the tips! Always appreciate 

JanW 

 

 

 

 

Hi Kim, 

No , had recent check up because of the C diff , all ok. It’s just me they say and brought up the short bowel.

I am dehydrated , most of the time,constantly working on that. It’s a true pain in the —-, oh I mean belly to do it that much , that’s what it is though. 

 

 

 

 

I don’t use any lube, just dip in water.  Also, I cut up mini pads into 3s (all natural, no bleach) makes 90 pads for $2.50.  I drain about 5x day so one box of pads lasts about 2 weeks or so. Secure with micropore tape - get box from Amazon for under 10.  

any way to get free shipping on vitality?  otherwise the price is relatively high.

still cheaper on amazon.  just got box of 12 for 18$ and free ship.  that's 1.50$/4 oz tube.  amazing how different the pricing is for the same thing.  

what type of pad one uses depends--sorry for that pun--upon how much one drains.  at times i drip constantly and go through several nursing pads in one day. previously i also could use the mini pads.

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.

 

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.)

 

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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