Need advice on irrigation for better quality of life

Well, I just heard back from Coloplast and was told that the ostomy plug was not sold in the USA but a European product!! WTH! Lol, oh well, it sounded good!

Puppyluv56, same here in Quebec, Canada. No company does not want to send even a sample mini-cap without a plug (because it costs between $2.50 and $4.00 each mini-cap...so once a day or two, it's a lot of money).....they only plug in Europe....lollll. Even B. Braun does not sell in Canada their electric machine for irrigation: IryPump® S Set Irrigation by electric pump - B. Braun...I presume they think we will have a SHOCK because of the price...lollll.

Have a nice evening! :)

Shit happens, wow. I do not have any problem getting samples from anywhere. They have been very accommodating. I keep changing product and trying lots of different styles and makers so I guess it is worth it to them to send a sample if they get my business where insurance pays a really high price for these supplies! I have some sleeves, caps from 2 places, a belt and 2 piece bags on the way. I have received strips, bags, adhesive remover wipes, barrier wipes, deodorizer oil, all as samples and have ordered more of most of what I have received so it really is beneficial for them to send the samples! It is a shame you are limited in Canada. Do you have access to an Ostomy Care Nurse at your local hospital? They can sometimes help.

Puppyluv

Hello Shit Happens and Puppyluv.  Sorry to hear that you cannot get these things in north America. It's not often that Europe do stuff that the US doesn't - it's usually the other way around. I'd like to inform you, that I have made my own alternatives to plugs and irrigation machines, so if you are handy with DIY there is no reason why you could not try these out for yourselves. The irrigation machine is simply a pressurised water system and I have used a garden sprayer to good effect and now use a battery operated portable camping shower, which I ordered from the US. online. The plug is made of an old nasal spray drilled in the end and sides, with a baseplate which fits on the screw end. I cut the inside section out because it is not needed.

There is often a solution to most problems - if we don't reply entirely on manufacturers.

Best wishes

Bill 

Thanks Bill, yep, the FDA approval of anything is a slow process! Thanks for the alternative, but I'm pretty sure I am not proficient in making my own stuff!

Puppyluv,

I think I did not explain correctly in my last email. Yes, I did receive a lot of stuff from companies (same stuff) like you did, but when it's an expensive stuff, I'm not sure they are willing to send it. Yes, my stoma at the hospital gave me 1 gel, 1 belt, 3 sleeves, and 5 mini caps, but as she says: she has been a stoma for 10 years but she has never done irrigation on someone... I have been doing mine for 5 months now... I think I'm better than her now... lolllllll

Bill, can we see photos of your invention so I can try my own, please?

Shit happens, I gotcha! That is understandable! I can see their point! Send samples for the reordering and cheap stuff! Lol thankfully insurance pays for everything for me. I have found no limits to what I have ordered and I keep changing up things! Lol

Hello Shit Happens. There is a shot of the pressurised system on my profile and, as soon as I get the time, I'll put one on of the DIY plug.

Best wishes

Bill

I am relatively new at this (Dec 2017), but I seem to have regular days when my bag fills and then when I don't want it to, like when I go on a trip. What do I buy in the way of supplies to try this irrigation thing? Is it a baster-like thing you use or what? I want to try this.

Dandy Dan, I have had my friend just since April and pouches have not been kind to me when I needed them most! Luckily, I have not had a total bust in a public place or with friends. Several times in the car on a trip or around town. Started to use the Y shape adhesive strips on both sides of the pouch for full coverage and you can see a leak coming before it breaks the pouch adhesive and the strips. I have not started irrigating yet but my supplies are on the way. I use Edgepark for all my supplies because they file to my insurance. On my first order, they sent me a catalog of all supplies they carry for all makers so I ordered a complete kit with everything I need, I hope! I always call my orders in versus online because the reps are very helpful in making sure I have everything I need. I have also requested samples from other companies of the Stoma cap to wear in case of leakage after irrigating and a sample sleeve. I hope I am prepared when I get my kit in! This will be life changing!

Mmsh. I ordered and received the stoma caps you suggested! I cannot wait for my kit to arrive so I can start this! The caps look to be very small and liberating. I hate the big, long, wide pouch that I currently have to make room for in my clothing! Will keep you posted and more suggestions as I progress in irrigating!

Thanks,

Puppyluv

Great, I buy those from Mega Medical since my Medicare won't pay for caps. They are the cheapest place I've found. Good luck.

What kind of Medicare do you have? An Advantage plan? They do not pay for them! That is crazy! I have insurance through BCBS from my husband's company and my Medicare starts Oct 1 but my BCBS will be primary until I turn 65 or my husband retires but he is 5 years younger than me so I am guessing he will not retire. My BCBS has not denied me anything! They are great! Scares me when I turn 65, I plan to drop the BCBS and pick up AARP Supplemental plan. It will cost a lot less but if they are not going to pay for certain things I now need, I may have to rethink that.

Thanks for the heads up so now I will be checking on that prior to any changes!

Weird new life, ain't that the truth! I was in the same spot for a while, but thankfully after some really bad experiences with the bags, I found one that lasted 8 days, so I knew there was hope! Irrigation definitely sounds like the path to freedom! Good luck! I will keep you posted once I start. Will need everyone's advice!

Puppyluv

Shitt Happens,

I have posted pictures of the supplies (on my profile) that I received for irrigation. I also posted several samples that I received of different type caps. I think I saw you posted something similar with just gauze and a medical strip. Your way may be cheaper unless your insurance pays for everything like mine does.

Let me know if you have any questions.

Puppyluv

Puppyluv,

No, unfortunately my insurance does not pay for cotton and film adhesive, they pay 80 for bags and collars with product numbers in their list after a deduction of 50.00 from us each year. The Government of Quebec gives us 700.00 / year for our bags ... etc ..... So if I pay attention with my irrigation with all my products, I would say that it costs me about 1000-1200 per year .... and oh yes + the stress ...... lollll it, it's too expensive for the government .... lollllll

Wow Danelle, that is pricey. Well, I say that but I have a $5000 out-of-pocket that I have already met for the year, and now my BCBS pays 100%. Luckily, my Medicare will start in Oct, so I will carry this as secondary, and they have no say in what my primary pays for! That is still apt for Ostomy stuff. I have not paid anything! Glad too! Hospital bills were enough! Chemo was paid at 100%, so that was good!
Candy

Puppyluv,

In Quebec, we do not pay for the hospital. For a stay of 2 days or 2 months, it is always free, and also all treatment like chemo, radio is also free. And I have insurance at my job that pays 80% of drugs (pills etc...) However, if our banks or our disability insurance request a medical report, which is requested every 3 months, the oncologist charges $45.00 for each company that requests it.

Yes, please do keep me posted on how the irrigation thing works out. It can take a couple of months to really get it down pat, so have patience with the process. If everything works out for you as it should, it's something you will never regret. It is the path to freedom. It's as close as it's gonna get, anyway, for someone with an ostomy. Good luck on it!

Hey weird new life,

Things are going well so far. My time to irrigate has lessened to less than 15 minutes with no mishaps, then another 30 or so to wait and clean up with pouch attached and ready for bed. I have not gone the full 24 hours without output yet but have not used a full 1500cc yet either. I tried last night but for some reason, it did not want to take but 1000cc. The night before about 1250cc. Guess I just have to play with it! At least I do not fear any leakage when I go somewhere as I did before. Getting better! Only on day 5 so things are looking up! Cannot wait till my colon has been trained and I no longer require a pouch! Your medical coverage sounds pretty good. My husband still works so I am fortunate to have his insurance. It gets more expensive every year but once I have Medicare as well as his insurance, I will not have any out-of-pocket expenses. That will be nice. I always had two insurances when I worked so was spoiled at never having to pay anything!

Puppyluv

Puppyluv,
A little thing that I do every day now, I introduce my index finger with gel in my stoma to make a way to my cone and let my stoma relax. It only takes a few seconds to relax the stoma with the index finger and the cone is introduced much better. And as a bonus, no water leak. This is how I managed to put 1500 cc now ... :)

I did that the first time to feel the direction of the colon but will have to make that a habit nightly! I don't think I will achieve at least 24 hours without getting that 1500cc in!

Puppyluv

Hi all,

Just to keep you posted. I have irrigated for 5 days now! Yay! It has gotten much easier and finally last night I was able to use a full 1500cc's. I had output during the day for the first 3 days but none yesterday or yet today! Glad for that because I really want to go to using a cap versus a pouch! Still being cautious for now and just using up a boatload of supplies I have. Thanks for all the advice and encouragement because this has changed my life already! Not afraid of leaks and ready to go anywhere now.

Question: There was a member that was asking for supplies for their mother that Medicare had cut her off and would not pay for supplies. So many advised her and offered to help, me included but I cannot find any of these posts. Did anyone see them or know who this member is? I thought it was Anonymous and then I think it said Past Member. Not sure?

Puppyluv

Hi everyone, I am on the 9th day of irrigating! I find getting the wheel to continue spinning is an issue. Sometimes it seems it is not the issue of direction but of pressure, and I think I tend to put too much pressure on the cone. But sometimes lessening the pressure is a fine line between a nice flow and it spewing back out! Working through that, but my question is: how long will it take before I can be assured there is no output the following day so that I can wear just a cap? Mine has varied. The first few days with 500 to 1250cc of water, I understand it may not have been a complete irrigation, but I have been at 1500cc for about 5 or 6 days. The first few days of 1500cc, I had no output, but the last two, I have had to empty my pouch several times. I would expect it to take time, but I'm just looking for your experiences on that time frame to be confident with a full pouch.

Puppyluv

Hi Puppyluv. Congratulations on the irrigation thing. Sounds like it's going pretty well for you.

As for how long to wait... well, I'd give it a couple of months at least. It takes that long for you to really get the whole process down and for your colon to be completely trained in. Think of it like you would if you were house training a puppy. You're going to have a few accidents before you can completely be sure the puppy has got it down pat. Haha

It took me at least, I think it was about 4 months, before I got brave enough to just wear a stoma cap. Before that, I continued to wear the pouch... just in case. Just nervous, I guess. You'll know when the time is right for you. I imagine it varies a little for everyone.

Thanks for the encouragement! I was hoping before my cruise on Nov 1. But glad to wear a pouch as long as it is not constantly producing output. I feel confident just knowing that, if there is output, I am not going to leak everywhere! Time will tell and I can't wait! Have a great night and Labor Day!

Puppyluv

Hello Puppyluv56. Like most things  stoma related, irrigation is a very personal thing and techniques vary for each of us. I could never get on very well with the cone or the gravity feed system, or the amount of water in the bag. With a lot of experimenting, I came up with a portable camping shower attached to the normal control mechanism, with an adapted anal catheta to get the water past my hernia. I also use 3 ltrs of water but, a lot of that is wasted with splashback. I appreciate the initial splashback because it pushes out any hard residue output from the day before, which might otherwise cause a blockage. I need to irrigate every evening because I cannot go for more than 30 hours without output and I dont' want that happening midday.

I would suggest trying all sorts of things to find the best approach for yourself.

Best wishes

Bill 

Well, irrigating has become routine. I think I am about 3 weeks in! I have changed things up a bit by irrigating only every other night. I continue to have output every day. I had gone as high as 3 consecutive days without output when I was irrigated every night. I may consider going back to every night but am in hopes of training Betty to behave in between irrigations. I find it a pain in the butt to do every night and enjoy those nights off! My savior has been switching to a two-piece appliance, currently Convatec because that is what came in the irrigation kits I ordered. Waiting on the Coloplast two-piece sample to come in the mail! I love their one-piece better than anyone else's so I may like this two-piece better as well!

Hey...I use SenSura Mio 2 pc from Coloplast with disposable liners. This is my 11th day and I didn't really need to change it yet but thought I better. My Dr told me the longer you can keep it on the better...less chance of getting sore. I also use Eakin seals...have you tried them?