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New ostomate with question about irrigation

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(@joeann)
Joined: 2 years ago
Posts: 7
Topic starter  

I have still got issues with my ostomy and would like to know if anyone out there does the irrigation method. From what I have read it is time consuming and you need to be very religious on the timing you do it. I lead a busy life and would love to try it but not sure I have enough time in the day.


   
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VeganOstomy
(@veganostomy)
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Joined: 10 years ago
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Hi @joeann thanks for joining the forum!

I'm hoping that other members who irrigate can chime in with some advice.

I do believe that @tigerlily has or does irrigate.

My suggestion would still be to speak with your stoma nurse before actually doing the irrigation so they can give you personalized instructions. 

One of the benefits of irrigation is that you can go a day or longer without having to worry about output, which may help with your pancaking challenges. ?

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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Tigerlily
(@tigerlily)
Joined: 3 years ago
Posts: 330
 

@veganostomy Hi Joeann, and welcome to VO. Yes, I do irrigate, but not all the time. You are correct in that it takes a lot of time to irrigate, but I think if you do it regularly (which I don’t) you and your bowels become more efficient, which cuts the time. But for anyone just starting this, I would recommend a couple of hours until you get the hang of it. 

I am retired, so accessing the bathroom any time I want is not an issue for me. If I want to have a long period without frequent trips to the bathroom, I will irrigate. So, a long travel day, or an evening out with dinner and theatre would be good examples. 

I irrigate in the evening. First, it gives me a fair bit of time when I’m not in a hurry to be somewhere else. Second, I have had all day to hydrate myself, which is critically important for irrigation. It won’t work as well if I’m dehydrated - my colon steals all that water I’ve just put in.

 

Eric is right about consulting a stoma nurse before you try irrigating, but honestly, the best information is on YouTube. My stoma nurse, who has a stoma herself, told me she didn’t know much about irrigation since she has an ileostomy. She said she doesn’t get many requests for information on it, which surprised me.

 

There are many factors that influence how long you can go without output after irrigation. Diet and metabolic rate are 2 big ones. Generally, I can get about 48 hours before I start to have output, and it starts slowly. So that gives me a heads up to change my stoma cap to a regular appliance. 

Feel free to ask me any questions you might have about this; I’m happy to help if I can.

 

Laurie

Just a semicolon


   
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(@joeann)
Joined: 2 years ago
Posts: 7
Topic starter  

@tigerlily thank you so much for your input. I found a few videos on irrigation and it is something I am willing to try. I am 4 months with my ostomy and am still having a few issues I need to address before doing this so will have to ask my surgeon first. I am very excited to try this as I work in an office all day and am always wondering when I will have output and it anyone can smell it so is hard to focus on my job. This would make a world of difference for me.


   
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Tigerlily
(@tigerlily)
Joined: 3 years ago
Posts: 330
 

@joeann Just to give you some preparatory info - I like the Coloplast irrigation kit, but I prefer the Hollister sleeve. I find the Coloplast sleeve too big and unwieldy, but you might not find that. Coloplast actually sent me a free irrigation kit, which was a surprise - they’re pricey. So you might think about calling them to ask about any irrigation samples. If you find that you like irrigation and start to rely on it, it would be worthwhile to have a backup kit. I once had something break off the water bag, which rendered it useless, and I had to wait until I could get another one before I could irrigate again.

 

Let me know when you’re ready to start, and I will be happy to walk you through the process. It can seem a bit daunting at first, but after a couple of times, you will be a pro at it. I’m here for all your questions.

 

Laurie

Just a semicolon


   
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(@joeann)
Joined: 2 years ago
Posts: 7
Topic starter  

@tigerlily I just emailed my stoma nurse and told her I would like to give this a try and I am very interested and she doesn't really think this is a good idea. I really don't understand why she thinks this any imput on that. And thank you for the heads up on the supplies as I am not the wealthiest person in the world. Will keep you posted.


   
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Tigerlily
(@tigerlily)
Joined: 3 years ago
Posts: 330
 

@joeann I would ask your stoma nurse for specific reasons why you shouldn’t irrigate. Don’t accept vague discouragement  - you deserve concrete specifics. There is a myth that irrigation contributes to forming a hernia. Before I started irrigating, I asked my surgeon whether there was any truth to this myth; she said no. Later, I had the opportunity to ask the same question of one of the most respected colorectal surgeons in Canada; he also said no. So if that is what your stoma nurse is concerned about, you might want to ask for a second opinion. 

Having said that, I have to tell you that I do have a hernia. I am convinced that it is the result of heavy lifting in the garden (those darn big ceramic pots weigh a ton!) without taking proper precautions to support the area around my stoma. NOT from irrigating.

 

Don’t give up. If you put 10 medical professionals together and asked them a question, you’d get 10 different answers. Since I started this journey in 2015 with my cancer diagnosis and ostomy surgery, I have learned that I must be my own advocate, and that means that I must turn over every single rock looking for answers to my questions. That perseverance has ALWAYS led me to a better solution than I was given initially. So ask for specific reasons why you shouldn’t irrigate - if you don’t get them, look elsewhere for help.

 

Laurie 

Just a semicolon


   
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VeganOstomy
(@veganostomy)
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Joined: 10 years ago
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Posted by: @tigerlily

I would ask your stoma nurse for specific reasons why you shouldn’t irrigate. Don’t accept vague discouragement  - you deserve concrete specifics.

I completely agree. If your nurse isnt experienced enough with the process and is just passing it off as "not worth doing" then they are doing you a disservice. 

If there is a real concern, then you should be told about it specifically. Great advice @tigerlily!

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@joeann)
Joined: 2 years ago
Posts: 7
Topic starter  

@tigerlily thank you for all your helpful advise. My stoma nurse said there is a risk of puncturing the stoma and we shouldn't be putting things into it. Like seriously#@#@# I will be talking with my colorectal surgeon in a week or so and I am going to ask them for help in this matter I am very determined to do this. I think this is the only solution for me.


   
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Tigerlily
(@tigerlily)
Joined: 3 years ago
Posts: 330
 

@joeann I don’t believe there is a risk of puncturing the stoma while irrigating. You will be using a soft rubber nipple, and inserting water. I think you are right to look to someone else for advice. It is shocking to me how much misinformation is out there, even among medical professionals. Turn over every rock Joeann, eventually you will find information that is helpful for you. 

Laurie

Just a semicolon


   
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Redwiner
(@redwiner)
Joined: 2 years ago
Posts: 3
 

@tigerlily thank you for you tips on irrigation. I’ve only tried it twice. I have a peristomal hernia so my ostomy nurse thinks that is what makes irrigation more challenging for me. Can’t wait to have it repaired. It makes my stoma stick out so far. 

My ostomy nurse does not have an ostomy herself, which would make her a more effective nurse and resource. She also told me she knew very little about irrigation because very few of her patients ever asked about it and I’m one of the few that actually wants to do it. That really surprised me. Her instruction appointment with me was a fumbling mess as she had never done it before. Ahhh good times!


   
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Tigerlily
(@tigerlily)
Joined: 3 years ago
Posts: 330
 

@redwiner I too have a parastomal hernia, which does make irrigation take longer. Lots of twists and turns of the bowel. However, it still does work. I have spoken with three different ostomy nurses, one of whom has an ileostomy, and all of them admitted they knew very little about irrigation. I find that perplexing. I understand that perhaps they get very few requests for help with the process, but still - they are supposed to be the experts to whom we all turn for information and assistance. ?‍♀️ 

My first couple of irrigation attempts were a bit of a fumbling mess too - don’t be discouraged by that. It’s a skill, and like any skill, it takes practice. For that reason, I recommend doing it in the bathtub or shower stall, in case there’s an accident. It really does get better with practice.

 

 I will be interested to hear about your hernia repair. I am waiting for one too, so I want to hear about your experience. 

Laurie

Just a semicolon


   
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VeganOstomy
(@veganostomy)
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Posted by: @redwiner

She also told me she knew very little about irrigation because very few of her patients ever asked about it

This is incredibly frustrating to read. 

How would patients know to ask, if they aren't being told that it's an option??

I can't imagine how many colostomates are living with a poor QOL, simply because their nurse isn't providing that option.

I may put together an article or video at some point about irrigation, with the help of colostomates who do it, and perhaps that will give patients an opportunity to learn then ask their nurse for help. ?

Good luck with your surgery!

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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Redwiner
(@redwiner)
Joined: 2 years ago
Posts: 3
 

@veganostomy Eric you hit the nail on the head! If you don’t know that is an option, how would you know to ask? Like Laurie said you HAVE to be your own best advocate. Before my colostomy surgery, I watched so many ostomate YouTubers and took notes. My surgeon and WOCN were amazed at my knowledge and specific questions. I hit them with questions and scenarios that they weren’t even going to mention at that point. Be the squeaky wheel and do your own research. Eric I would love to see you tackle this topic. Even if you improved the QOL for a dozen people it will be time well spent.


   
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sjlovestosing
(@sjlovestosing)
Joined: 6 years ago
Posts: 651
 

Though I have never attempted irrigation, I applaud those who have done it! My bowels are very irregular. I never know when I will do the "big one". ? Sometimes it happens during the day at any hour or at night. (What a surprise that is when I wake up with a FULL bag!)

Stella


   
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Tigerlily
(@tigerlily)
Joined: 3 years ago
Posts: 330
 

@veganostomy Eric, I would be happy to help you with this. I was thinking about posting a step by step on irrigation, if that would be helpful. There is just so little information out there about irrigation. 

 

I am truly saddened by professionals who pass on opinions and myth as fact. That results in unnecessary suffering. It happened to me too; I had an unhealed perineal incision that nobody seemed to know how to fix. One oncologist even told me to learn how to live with it. (I actually could not sit because of the pain of that open rectal wound. Imagine being told to learn to live with not being able to sit for the rest of your life!) Not being satisfied with that ridiculous suggestion, I began turning over rocks for answers. That led me to Mount Sinai in Toronto, and Dr Zane Cohen, who immediately told me that I might be a good candidate for hyperbaric oxygen therapy. I didn’t even know what that was, even though I had consulted about 8 doctors already. He was right, of course. Six weeks of daily hyperbaric “dives” allowed my 2 1/2 year old open incision to finally close. The truly sad part of this is that I had suffered needlessly for that long because my doctors neglected to mention this as a treatment. I can’t imagine how many others are also suffering because of this.? So Eric, if you want to put together some information on hyperbaric oxygen therapy, I’d be happy to help you with that too. It was a life saver for me, and it is so poorly understood, even by the medical community.

 

Laurie

Just a semicolon


   
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VeganOstomy
(@veganostomy)
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Posted by: @tigerlily

who immediately told me that I might be a good candidate for hyperbaric oxygen therapy. I didn’t even know what that was, even though I had consulted about 8 doctors already.

"You should have asked"? I'm glad you finally found a competent doctor (and Dr. Cohen is one of the best!) who could help.

Posted by: @tigerlily

I was thinking about posting a step by step on irrigation, if that would be helpful.

You're more than welcome to do that if you like - and if you wanted me to put those steps into an article, then we can certainly work together to get that done and reach a wider audience :)  Email me and we'll see where we can go with this.?

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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(@joeann)
Joined: 2 years ago
Posts: 7
Topic starter  

@veganostomy I bet there are hundreds of colostomates out there that haven't even heard of irrigation. I came across it on a video. Before I went for my surgery I did watched hundreds of videos including all of yours LOL to help me better understand what I was going to be dealing with. They surgeons don't tell you enough for sure. I have a permanent colostomy so I just want my life to be as normal as I can. I work in a vets office so going to the bathroom 6 times a day is not in the books. People need to be better informed about the options out there and I would have to say you are on a roll. I also use inserts in my bag because I don't have the time at work to empty and rinse.


   
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LLNorth
(@llholiday)
Joined: 5 years ago
Posts: 525
 

@joeann Do you use liners (inserts) every day?  Do you like them, and are they easy to work - and where do you get them? Thank you! LL

Colostomy 4/30/18.
I love the smell of coffee in the morning. It smells like .... victory.


   
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Fred
 Fred
(@fred)
Joined: 7 years ago
Posts: 81
 

Hello,

I have had a colotomy for 6 yrs. and was introduced to irrigation when my first bowel blockage (I have had several) occurred to attempt to loosen blockage. It was in the hospital with the aid of an Ostomy nurse. However, like you was discouraged from using it regularly. The cause of the blockages are adhesions that resulted form the original ostomy surgery which occurred on an emergency basis due to complications from a sigmoid colon resection. My most recent blockage occurred this past April and I was hospitalized for 8 days.  I was determined not to have surgery to clear the blockage as I was told the surgery would probably cause additional adhesions. After draining with a nasogastric tube, the surgeon was ready to do surgery, I suggested that we try irrigation. He agreed sent me home with instructions to irrigate daily at first and try to wean myself off the irrigation as I thought appropriate. I was also given instructions to eliminate any type of food that with pulp, seeds, nuts and peel all fruits. In addition, to use Miralax daily to keep the stool soft. He also told me that I would possibly have to irrigate regularly but not necessarily every day. Through trial and error from every other day to max of 7 days, I found that every six days is best for me.  After irrigating  I usually go from 1 to 3 days without any output except gas. After which I have regular bowel movements until the next irrigation. As stated in the the other replies being well hydrated is very important. It took a bit of getting used to once you get into a routine and having all your supplies ready it can be very efficient when you get to know how the elimination occurs i.e. time and amount to expect. My point is that irrigation can be flexible and my take some trial and error. I hope this helps. Here is a link to the UOAA website and a an article on Irrigation that I found very helpful.

https://www.ostomy.org/search_gcse/

https://www.uoaa.org/forum/uoaaxt/files/Phoenix_Irrigation.pdf


   
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