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Irrigation question

Posted by carol5, on Thu Apr 21, 2016 10:07 pm

So I finally did it! I gave irrigation a try.  Everything went fine except I don't think I am completely cleaned out.  I started with 500cc of water so should I increase that on day two?  Also, do most people reuse the drains?  They seem pretty sturdy but I don't want to trust them if they are not made to be reused.  Manufacturing says nothing about it.  I am excited for this change.  I am a high school teacher and the stress in the classroom with "things happening" and not being able to leave the students is so stressful and has been making me not go to work (I typically love being a teacher).  I am really hoping this does the trick.

Reply by Bill, on Fri Apr 22, 2016 1:42 am

Hello Carol.

Congratulations on giving the irrigation a try. I fee; sure you will not regret it in the long-term. (no pun intended).

Your question about reusing the drains is not a straightforward one to answer because some of them are designed to be for one-off use and others are designed for multiple use. Personally I use the Dansac Irridrain which are single use but they suit me better because they are a decent size at the top and I like the longer length because of how i operate the procedure. However, I have also made a device that they can stick onto so that I can multi-use them. Not that I need to, as I get all my stuff for nothing on the NHS. It's just that very occasionally one will not stick properly to my skin and I have the 'gadget' ready for an emergency , should it arise.

As for the water. this is a very personal choice(as with most of these things.) I could not get along with the small hanging bag which held nowhere near enough water for my needs and did not have enough pressure to get the water past my hernia.. Thus, I adapted a 5 litre pressurised container  using the same cone-nozzel which now pumps the water in without too much difficulty. I do not use all the water at once as I have found that if I pump some in and it becomes a little uncomfortable - I remove the cone and get a release of fairly hard feaces along with the first lot of water. I then continue as per normal and the process takes its course.

This technichique of irrigating twice in  one session was  a tip I read on here some years ago and it works well for me. I think it's because overnight there is a residue of faeces in  the colon that has the water extracted and so goes hard and could cause a blockage. Getting rid of this first allows the water to go into the intestines without any obstruction and therefore is more effective. ( That's the theory anyway!)

As for the amount of water I use,  well I've never really measured it because my body tells me when I've had enough, I certainly do not use 5 litres but it is useful to have that avialable under pressure because I use it for cleaning the inside of the drain when I'm finished emtying out.  I would estimate  that I probably use a litre on each 'swill' but that's just a guess and it probably varies from time to time because I simply take notice of how I 'feel' down there, rather than watch how much is going in. I am always careful not to ever feel 'uncomfortable' before I stop the input. After all, I can always let some out and start again if I feel that is necessary.

It's all a matter of trying different appraoches to see what works best for you. Every now and then I change my routine to see if a different way might be more effective and that way I can be confident that I have got it reasonably right for me.

I hope these comments help you in your own decision making.

Best wishes

Bill

Reply by mild_mannered_super_hero, on Fri Apr 22, 2016 11:52 am

congrats on your first irrigation. i use 1.5 liters of water. i reuse my sleeves several times. before you start place a quart sized container of warm soapy water were you can reach it. i wait 1 hour for return. when you are finished pour the warm soapy water thru the sleeve and rub the outsides together, then refill the container a few times and rinse the sleeve. hang where it can drip dry without making a mess. i will add that if you watch your fiber intake it helps extend your "clear" time. i also avoin grains and cereal as it eliminates a lot of gas in my system.  regards mmsh

Reply by veejay, on Sat Apr 23, 2016 4:38 am

I do hope you persist with the irrigation Carol. It is well worth it

Irrigating does take some practice to get mastered but once you get into a routine, you will wonder why you didn't try it sooner. You may never wear a bag again!

And to all ostomates with a colostomy, irrigation can be a saviour. It was for me. You have nothing to lose butt (bad pun) your bag.

V.J.

 

Reply by carol5, on Mon Apr 25, 2016 5:34 pm
carol5 wrote:

So I finally did it! I gave irrigation a try.  Everything went fine except I don't think I am completely cleaned out.  I started with 500cc of water so should I increase that on day two?  Also, do most people reuse the drains?  They seem pretty sturdy but I don't want to trust them if they are not made to be reused.  Manufacturing says nothing about it.  I am excited for this change.  I am a high school teacher and the stress in the classroom with "things happening" and not being able to leave the students is so stressful and has been making me not go to work (I typically love being a teacher).  I am really hoping this does the trick.


Thank you for your responses, they have really helped.  I am on day 5 and the last couple of days I've run into some problems.  Is it normal to not quite make it 24 hours at the beginning?  I am up 750cc's of water but the last two days I haven't made it the full 24 hours before my colostomy started emptying on its own.  Both days, I got a lot of pulling for a couple of hours before and then the colon starts emptying with cramping.  The first day it didn't completely empty and I went ahead and irrigated at regular time.  The second day, I had a little come out in the morning and then 1/2 before my irrigation time, I had the worst cramps I have ever had (fetal posiition and pretty crying-it was bad) and I pretty much emptied all the way out.  I still did the irrigation at regular time and it was mostly the water I had put in with yet more cramping(although not near as painful).  I am not sure why I am cramping this bad, any ideas?  Also, is this something that will pass as my body is trained?  Is there a different way I should eat (I eat a relatively low cal diet with a mixture of fibers, proteins, and carbs).  This also might be important, I have never been regular and my stools are more loose then solid.  Even before cancer, it wasn't unsual for me to go twice a day.  During cancer, of course it became more loose and a lot more often and since colostomy, I have been loose and all over the map.  Probably average 3-4 times a day.  I'm worried I might not be a candidate for this and I want it so bad.  Teaching is a very hard career to do while dealing with colostomy doing its thing.  No way to leave the students to take care of business.  Irrigation seems to be my best option.

Reply by mild_mannered_super_hero, on Mon Apr 25, 2016 9:37 pm

the cramping concerns me. i will ask a stupid question...the water you put in is EXACTLY the right temp?? {body temp}

do not eat high fiber foods...... every bit of fiber you put in comes right back out. high fiber diets are for folks with a full colon who need to keep things moving...not for you.  there should be no cramping, irrigation is painless if done correctly and the remaining bowel is healthy. try eating a high protien diet with low/no fiber, watch the carbs and grains. eat several small meals a day, NEVER eat till you are full, satisfy your hunger with the protien and it will take a lot smaller portions to make you feel full. keep us posted please. regards. mmsh

Reply by carol5, on Tue Apr 26, 2016 12:02 am
mild_mannered_super_hero wrote:

the cramping concerns me. i will ask a stupid question...the water you put in is EXACTLY the right temp?? {body temp}

do not eat high fiber foods...... every bit of fiber you put in comes right back out. high fiber diets are for folks with a full colon who need to keep things moving...not for you.  there should be no cramping, irrigation is painless if done correctly and the remaining bowel is healthy. try eating a high protien diet with low/no fiber, watch the carbs and grains. eat several small meals a day, NEVER eat till you are full, satisfy your hunger with the protien and it will take a lot smaller portions to make you feel full. keep us posted please. regards. mmsh


I believe I have the right temp but my irrigation bag does not have temp gage on it.  I think I will order the colosplast one as it does.  I currently use the hollister brand.  I did fine today, looking back to yesterday, I did take benefiber about 4 hours before irrigation (I take it to balance the fiber as I often have to much, my doc says benefiber does that and it has worked well) and I had some wheat thins with hummis.  Maybe between the wheat thins and the benefiber, it was too much fiber.  I see my doc tomorrow so I will talk with him.  It is hard because I am doing this alone as I was not approved by insurance for a home health stoma nurse because I work so that disallows me from home health (stupid to penalize someone who wants to work in my opinion) so I am pretty much going by videos and packaging instructions and of course, these post.  I appreciate your advice and will make some changes to my diet and try to eat less, but every couple of hours.  I think that is healthier anyways.  Thank you for the help

Reply by Bill, on Tue Apr 26, 2016 1:20 am

Hello Carol5.

When I first atarted irrigation I had the same problems with it not lasting 24hrs. However, I persisted with doing it at the same time every evening and eventually it settled into a routine and I got a full 24 hrs. I had heard that some people get two days so I tried it but it did not work for me so I went back to a daily routine whether I needed to or not. As for cramping, I find that the worst cramp comes when I have trapped wind that needs to be expelled before it goes away. I figured that a lot of this was because my peristomal hernia was blocking the exit so I used the stoma plugs and that helped by allowing the wind to pass through it. There is lots of advice on how not to get wind in the frst place but my diet is just how I like it and I don't want this condition to dictate the whole of my life  so I just eat what I like and try to overcome the consequences at the other end. Another reason I like irrigation is that for me the water seems to release large amounts of wind all at the same time as I'm irrigating so that makes me think that it will cause less problem once the procedure is over. I hope you keep persevering and get some satisfactory results soon.

Best wishes

Bill

Reply by veejay, on Tue Apr 26, 2016 6:50 am

You have to train your insides Carol, remembering that not everyone's insides work the same. Try and irrigate at the same time every day. DO NOT miss a day. 

The water temperature should be luke warm. Feel it with your hand. Too hot or too cold will not work. The trick is to get all the water in. Sounds disgusting I know but don't be afraid to put your finger into the stoma so the cone can do it's job properly. You cannot hurt the stoma. It is dead. It has no feeling.

The cramping is an issue. There should not be any pain at all when irrigating just the feeling of "release" when your stoma is about "evacuate". 

You could try lying on the floor on your back. I have done this at times to help with the evacuation.

As the others have said, stick at it. It is worth it in the long run. 

Good luck.

 

V.J.

 

P.S. As we are told as children...chew your food well. 

 

 

 

 

Reply by carol5, on Thu Apr 28, 2016 3:46 pm
mild_mannered_super_hero wrote:

the cramping concerns me. i will ask a stupid question...the water you put in is EXACTLY the right temp?? {body temp}

do not eat high fiber foods...... every bit of fiber you put in comes right back out. high fiber diets are for folks with a full colon who need to keep things moving...not for you.  there should be no cramping, irrigation is painless if done correctly and the remaining bowel is healthy. try eating a high protien diet with low/no fiber, watch the carbs and grains. eat several small meals a day, NEVER eat till you are full, satisfy your hunger with the protien and it will take a lot smaller portions to make you feel full. keep us posted please. regards. mmsh

Thanks again for the feedback, it is really helping.  I have run into another problem.  I am having a lot of indigestion and pain (pulling from left side area and in front on stoma).  I have taken tums with little help.  The other day, prior to this problem, my doctor told me to quit taking benefiber because he thought it might have contributed to the really painful cramping I had.  He said since I usually have loose stools and not regular I am probably getting too much fiber out of it even though it is suppose to balance either way.  Could this have something to do with these new symptoms?  Sorry to ask so many questions, my insurance won't approve a stoma nurse because I work (all in my area are through home health) so I am on my own except all of your helpful responses and my occasional trips to my surgeon.  The only reason I am still seeing him is because of failed attempt to fix a fistula that is causing me to still not heal from the removal of rectum and colostomy, so I ask when I am there.  

Reply by Bill, on Fri Apr 29, 2016 1:34 am

Hello Carol5. Your doctor is probably right in his advice. I have all sorts of pulling sensations akin to pain. Sometimes I put them down to the peristomal hernia, other times I get the feeling that it's actually the peristalsis itself causing the sensations. Maybe a bit of both!

Because I like to know my stoma as much as I am able I do poke my finger in  there to try to feel what is happening. ( My stoma nurse did this very early on and told me that it does no harm whatsoever) Anyway, what I found was the pulling sensation and some mild pain comes when the muscles causing the peristalis contract really hard and in my case block the exit rather than pushing stuff out. They act almost like a sphincter would in the anus. I found that by making the muscles crush my finger for a while they eventually 'give-up' and relax - the sensation diminishes and I don't concern myself with it again until the next time. Because I find this works for me, I also use stoma plugs - which act a bit like the finger would but they allow wind to pass through whereaas my finger does not. My thoughts are that the stoma and the bowels need to be 'trained' to do what you want them to do rather than just letting them do their own thing. Having experimented with all sorts of things to get it right (for me) I then stick to a routine that seems to work. Without this experimentation I think that I would have needed several extra surgery procedures to put things right. As it is I know that things are not perfect but I 'manage' the problems myself and have more or less mastered the irrigation and therefore reap the benefits that this procedure offers.

I hope you work things out and gain the same sort of control  for yourself.

Best wishes

Bill

Reply by mild_mannered_super_hero, on Fri Apr 29, 2016 7:28 am

i am not a doctor, so this is just a suggestion. try 2 days with zero fiber......low or no carbs. EAT meat,fish,cheese ,eggs...the stuff no doctor will ever tell you to eat. see what happens when you irrigate after the 2 days. keep me posted

 

Reply by carol5, on Sun May 01, 2016 9:09 pm
Bill wrote:

Hello Carol5. Your doctor is probably right in his advice. I have all sorts of pulling sensations akin to pain. Sometimes I put them down to the peristomal hernia, other times I get the feeling that it's actually the peristalsis itself causing the sensations. Maybe a bit of both!

Because I like to know my stoma as much as I am able I do poke my finger in  there to try to feel what is happening. ( My stoma nurse did this very early on and told me that it does no harm whatsoever) Anyway, what I found was the pulling sensation and some mild pain comes when the muscles causing the peristalis contract really hard and in my case block the exit rather than pushing stuff out. They act almost like a sphincter would in the anus. I found that by making the muscles crush my finger for a while they eventually 'give-up' and relax - the sensation diminishes and I don't concern myself with it again until the next time. Because I find this works for me, I also use stoma plugs - which act a bit like the finger would but they allow wind to pass through whereaas my finger does not. My thoughts are that the stoma and the bowels need to be 'trained' to do what you want them to do rather than just letting them do their own thing. Having experimented with all sorts of things to get it right (for me) I then stick to a routine that seems to work. Without this experimentation I think that I would have needed several extra surgery procedures to put things right. As it is I know that things are not perfect but I 'manage' the problems myself and have more or less mastered the irrigation and therefore reap the benefits that this procedure offers.

I hope you work things out and gain the same sort of control  for yourself.

Best wishes

Bill

Hi Bill, thank you for the great advice.  The finger seems to help a lot and I know the direction to put the cone to make sure water goes in.  I am doing better.  I have cut out the benefiber and I am not having as much pain, no indigestion, and making it 24 hours for the most part.  I didn't make it yesterday but I had some sausage for breakfast and think it just ran through me, today much better.  I even went camping with my family and survived.  I have only had this colostomy since June so everything is still settling but I am committed to making this irrigation work.  I can see the freedom it is going to offer me and I think I will be able to be in the classroom without so much stress.  Thanks again

Reply by carol5, on Sun May 01, 2016 9:11 pm
mild_mannered_super_hero wrote:

i am not a doctor, so this is just a suggestion. try 2 days with zero fiber......low or no carbs. EAT meat,fish,cheese ,eggs...the stuff no doctor will ever tell you to eat. see what happens when you irrigate after the 2 days. keep me posted

 


Thank you, I am eating a very high protein diet.  I eat all of those things you listed.  The biggest thing is that I don't eat to much of any of it at one time and that I chew my food (I have always been a really fast eater so this is hard for me).  I am starting to settle in to irrigation and it is freeing.  Thanks for the advice

CH
Reply by CH, on Wed May 11, 2016 3:33 pm

Hello..I'm new to this site and it sounds like we have a similar situation..I am interested in irrigation but have never tried it..I have all the supplies but not the courage! Any advice or suggestions? Thank you! 

Reply by mild_mannered_super_hero, on Wed May 11, 2016 10:00 pm

i learned by watching this video many years ago... 

 

https://www.youtube.com/watch?v=g14kbuw1fU8

CH
Reply by CH, on Wed May 11, 2016 10:13 pm

Thank you..I'll check it out! 

Reply by carol5, on Wed May 11, 2016 10:47 pm
CH wrote:

Hello..I'm new to this site and it sounds like we have a similar situation..I am interested in irrigation but have never tried it..I have all the supplies but not the courage! Any advice or suggestions? Thank you! 


I was really nervous as well but it turned out to not be bad at all.  I also watched a video several times and then did it exactly that way.  I used one with a real person doing in his everyday life, not a nurse giving a step by step.  I have been at it about a month now and I am having success now.  I went a whole week making it a full 24 hours until I had a bad day yesterday, but overall I think I am through most of the hurdles.  You just have to commit to doing it at the same time everyday no matter what.  Also the advice I got on this site about eating small amounts several times a day really worked well for me.  If I eat big meals, it just goes through me to fast.  I know I am going to have to be diligent about diet because I was never regular before and had loose stools, but it is worth it to me.  It has been freeing to get control back again and for the first time in a year, I think I will be able to teach without too much stress.  I'm looking forward to that.  

CH
Reply by CH, on Wed May 11, 2016 11:15 pm

Thank you Carol..I appreciate your help...I'm still thinking about it and may give it a try..thank you! 

Reply by carol5, on Sun Jun 05, 2016 12:47 pm

Hi All,hope all is well with you.  I am doing great with the irrigation process now and committed to the same time everyday.  For the most part I make it the full 24 hours.  Thank you for all the advice, it has helped a lot.  My only problem now is that I have stomach aches about an hour after I eat anything ( I eat small amounts, several times a day). While if I pass a little gas, it gives some relief, I do not really feel gassy.  It feels more like my intestines are tender or irritated and it is just dense, achy pain.  I have played with foods and have found some things are worse then others, so I stay away but overall it seems that almost everything gives me this reaction to some degree.  I pretty much eat a high protein diet with no fresh veggies and fruit ( too much fiber is not a good thing for me as things easily run through me),and sometimes can get away with eating something for a while with minimal pain and then that stops working and starts to cause more pain, for instance eggs. They were my best food for a while and now can't eat at all.  Any ideas? Other than this problem, I love irrigation and the freedom it allows me.  I appreciate your advice, it has been so helpful. Take Care!

CH
Reply by CH, on Sun Jun 05, 2016 2:07 pm

Hi Caro5...I'm  afraid I don't have any advice but I do have a question..I am thinking of starting irrigation soon but I'm concerned about some of the issues you're having becoming my issues. I'm wondering if you ever had reactions to certain foods before irrigation? I can ( and do!) eat anything and everything I want and have never had any stomach issues at all since my colostomy in 2014. I want the freedom but am kinda worried about this type of thing..thank you! CH

Reply by carol5, on Sun Jun 05, 2016 8:46 pm

I didn't have any real problems with food before irrigation once I got past the the first few months after surgery, however I have always been a little sensitive to food moving through me quick.  I discovered today that I have using water that is a little cool, so from now on I will check the temp.  I'm hoping that makes a difference.  I am also thinking I may see a dietician/ nutritionist for advice as irrigation is so much better then before and I want it to work.  Not giving up yet, you should definitely try it.  From what I can see, everybody is different.

CH
Reply by CH, on Sun Jun 05, 2016 8:56 pm

Thank you! I want to try it so much I'm just nervous about the commitment of having to do it at the same time every or every other day..and I do so well with the bag in terms of eating whatever I want and just managing the bag in general..it's just a big commitment in some ways. I'm really interested in all the pros and cons so thank you for any advice you may have! 😊

Reply by Bill, on Mon Jun 06, 2016 1:39 am

Hello carol. You are so right about everybody being different, which makes it important for people to experiment to see what suits them best. I suppose that goes for life ingeneral as well as dealing with stomas.

Best wishes

Bill

 

Reply by Bill, on Mon Jun 06, 2016 1:50 am

Hello CH.

Your nervousness is understandable but until you try something you will never know if it will work for you. I used to have to watch my diet very closely but since irrigation I eat more or less whatever I like without any adverse side effects, but as stated above we are all different. I'm having difficulty understanding why you would prefer having to tend to your bag during the day when the output can be so unpredicatable. Irrigation could free you from that chore and its associated potential disasters. What I found was that when I calculated the actual time I was spending tending to my bag during the day and night and compared it to the time spent irrigating - there was no contest! The irrigation takes up far less of my overall time, even though it can seem like an age when I'm actually doing it.  I distract myself by finding something else to do (writing) while the irrigation process is taking place which makes it more bearable and it then feels like time well spent.

There's pros and cons in almost everything we do but we don't usually know what they are for us until we have a go.

Best wishes

Bill

CH
Reply by CH, on Mon Jun 06, 2016 1:57 pm

Thank you Bill...I'm having a hard time understanding that myself..haha. I think it's because I don't really spend that much time "tending" to the bag...I have adjusted pretty well to having it ( a year and a half) and I think my biggest concern is making sure that I am ready to commit to 45-min to an hour every or every other day to the irrigation process. I surely can see the benefits of not wearing a bag so if for no other reason than that I'm willing to try it. I appreciate all the encouragement on here and the more I read the more I know I have to try it...you're right..if I don't try I'll never know!  CH 😊

Reply by Bill, on Tue Jun 07, 2016 1:22 am

CH.  It reminds me of the tee shirts that seem to be popular at the moment with the caption 'JUST DO IT' emblazoned across the chests.

Best wishes

Bill

Reply by veejay, on Tue Jun 07, 2016 5:24 am

"I love irrigation and the freedom it allows me"

What a great quote. It should be posted on all sites.....especially for all 'newbies'. 

Congratulations Carol.

V.J.

CH
Reply by CH, on Tue Jun 07, 2016 8:12 am

Haha...yes Bill...JUST DO IT...I think Nike made at famous...there's a "slash" ✅ (that's not it but you get it) that goes with that...maybe ours could have like an irrigation bag with wings! We should market that...SURELY we would sell those..haha. I can't say enough for how much I appreciate all of the encouragement...I am going to give it a try...and (fortunately or unfortunately)  y'all you will be some of the FIRST to know how it's going! Thanks again all! ❤️

CH

CH
Reply by CH, on Tue Jun 07, 2016 8:50 am

Once again my "emoji" turned out to look like a secret code..that was supposed to be a "Nike slash" that I was describing in my post about JUST DO IT! :) CH

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