Need advice on irrigation for better quality of life

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Puppyluv56
Aug 15, 2018 1:27 am

I have had a heck of a time with pouches. I have tried several different companies' products and am totally disgusted that none of these products are reliable. One pouch I get 8 days out of it and the next one may not make it but one to three days! I need better than this to live an active life and right now feel like a prisoner in my home due to this. My output is very liquid so it seems I am covered in poop a lot! Lol I have ordered the irrigation kit and was told by my doctor it may fit my life better. I understand that you irrigate every day or every two days to train your colon and do not have to wear a pouch, just something to cover for drainage if there is any. I am interested in hearing any advice in this adventure. I will try this when my equipment comes in!

mild_mannered_super_hero
Aug 15, 2018 3:36 am

Yes, I agree with your doctor. Irrigation will give you back control of your life. I have been irrigating for years and it works well for me. It's a pretty basic routine, you put the water in and wait for it to return. It takes about an hour. After that hour, you may should be "clear" that day and the next. Diet will play into the amount of time between irrigations. Eat a low residue diet, high in protein and low in fiber for longest "clear" time. If you need any help, I'd be glad to help you. Regards. MMsh

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Bill
Aug 15, 2018 5:35 am

I am a firm believer in irrigation, if you can do it. For me it's a regular evening activity as I can only go for about 30 hours without output, which would mean breaking the cycle midday and that seems to defeat the object of the exercise. Like most things stoma-related, irrigation takes some getting used to but I have found it is well worth it for the peace of mind that I won't have output during the day and I therefore don't have to faff about with bags/pouches or whatever you want to call them. I also no long feel the need to carry supplies or look for every available toilet en route. My life is back to relative 'normal' until the next irrigation session. I eat whatever I like, which (as MMSH says) is probably why I cannot go for 2 days without output, but that's my choice!

I hope you give it a try and feel the benefits

Best wishes

Bill 

Past Member
Aug 15, 2018 11:59 am

Irrigation saved my life! I could never get the skin barriers to stick right. They kept coming loose. I was about to lose it when I discovered irrigation. When you do that, they don't need to stick all that well because there is no output once your colon is trained. Once you get irrigation down, you almost feel normal again. Go for it!

Shitt Happens
Aug 15, 2018 3:05 pm

Google translation French (Canada) to English... lolllll

Hello Puppyluv 56,

It's really worth learning how to do a good irrigation, it's about an hour in a day of 24 hours, when I think I spent several hours cleaning my bags every frangin day. I will never return with bags if it is possible, believe me. The most important thing is to tell yourself that you can do it ♥ and take your time, it's really worth it. Good luck!t'

 

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Shitt Happens
Aug 15, 2018 4:00 pm

Can you write me a typical day of what you eat in a day so you do not have a lot of residue?

Many thanks :)

mild_mannered_super_hero
Aug 15, 2018 5:19 pm

Breakfast: bacon/sausage and eggs

Dinner: Meat and cheese, Atkins candy bar. Atkins is a low carbohydrate diet and these are sold at my Wal-Mart.

Supper: Small salad with lettuce, cucumber, and green onion. Main course: meat or fish.

Things to avoid: bread, pasta, bulky veggies, fibrous fruits.

Note: Men tend to do well on Atkins, but women not so good.... Since humans are carnivores, your body is designed to run on protein. Once you get used to it, you will do fine. But be advised that giving up bread and pasta is rather challenging. I find that gas is almost totally eliminated once you cut out the bread/cereal/pasta. Atkins must be supplemented with a daily vitamin, preferably without iron. I also avoid caffeine. Develop the habit of checking fiber content of foods. Fiber in the diet is intended for people with normal colons to keep everything moving. It has no nutritional value nor vitamin content. Remember, I am not a doctor. This is just what works for me based on trial and error experience. Sorry for the typos, but it's been a long time since I was in school and my spelling was never great even back then. Regards, mmsh.

Puppyluv56
Aug 15, 2018 10:21 pm

Mmsh, that sounds like a healthy diet! I have gone on the Atkins diet before and found it easier than most! A high carb diet is definitely bad, causing gas and liquid stool which I struggle with. My doctor did say to take half of an Imodium, but then the stool was like sludge and would not drop in the pouch but go under the wafer for a big leak! Wish I had instant solid stool! Diet is going to be the only way out of it! Once I start irrigating, it won't matter as much!

Puppyluv56
Aug 15, 2018 10:56 pm

Thank you for the encouragement! What do you put over your stoma? Anything?

Puppyluv56
Aug 15, 2018 11:01 pm

I feel like my stoma is a full-time babysitting job! My pouch fills with gas or poop, so I am always in the bathroom. I am not scared of irrigation, and my son had a tracheotomy when he was young, so I am experienced in some aspect of irrigation! Being in Oncology also helps! Bring it on! So ready to start cruising without fear again!

Puppyluv56
Aug 15, 2018 11:05 pm

Thanks Bill, I was also thinking about evening time just because of the time constraints of having an early morning appointment or activity scheduled! Once I get my supplies, I may be asking for advice from all of those that irrigate!

mild_mannered_super_hero
Aug 16, 2018 2:09 am


I use Hollister 1796. It's a stick-on cap with a tiny reservoir. It lays very flat and helps when you are wearing lightweight summer clothes. I suggest you request a few as samples from them before you start irrigating. The tiny size will encourage you! Good luck.

Bill
Aug 16, 2018 5:29 am

I use a Coloplast stoma plug- mostly because I find it helps with keeping the hole from closing over and it stops the noise from farting! which I do a lot of.

Puppyluv56
Aug 16, 2018 3:39 pm

Thanks, Bill! I just asked them for samples of their stoma caps, will have to call back to get a sample of this as well!

Puppyluv56
Aug 16, 2018 3:45 pm

I have ordered samples from Hollister and Coloplast! Also, I am looking into the plug that Bill suggested and emailed my Coloplast agent for a sample too! You guys are great! Thanks!

Puppyluv56
Aug 16, 2018 10:37 pm

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!

Shitt Happens
Aug 17, 2018 12:11 am

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! :)

Puppyluv56
Aug 17, 2018 12:53 am

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

Bill
Aug 17, 2018 5:27 am

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 

Puppyluv56
Aug 17, 2018 3:00 pm

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!

Shitt Happens
Aug 17, 2018 8:14 pm

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

Shitt Happens
Aug 17, 2018 8:16 pm

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

Puppyluv56
Aug 17, 2018 11:32 pm

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

Bill
Aug 18, 2018 8:02 am

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

Dandy Dan
Aug 22, 2018 12:22 pm

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.

Puppyluv56
Aug 22, 2018 3:44 pm

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!

Puppyluv56
Aug 22, 2018 3:57 pm

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

mild_mannered_super_hero
Aug 22, 2018 6:08 pm

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.

Puppyluv56
Aug 23, 2018 1:11 am

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!

Puppyluv56
Aug 23, 2018 1:19 am

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