Colostomy irrigation not working, need suggestions

Sorry, that should be colostomy!

Hello Belshie. What a great question you ask! I hadn't really thought about it before but here's my considered opinion- which is by no means authoritative.

They may have different names but the tubes are all joined together so I cannot see any reason why the water would not travel from one to another. The only thing that might stop it or slow it down woud be the peristalsis and this doesn't (always) seem to kick in straight away. I had not heard that your stools needed to be firm to be able to irrigate but I can confirm from experience, that after the first (tiniest) bit of output, the rest of it is very liquified. (Apart from things like sweeetcorn of course which seems to come out just as it went in. I often wonder if there is any point in eating the stuff at all!)

From your post, I could not quite figure out whether your surgeon definitely told you that you would not be able to irrigate or whether he was just describing what he had done.

 As I understand it, If you have a colostomy there is a good chance that you will be able to irrigate successfully but like all things stoma, everyone is different and you might be an exception. If this were me, I would be wanting to clarify the situation with a stoma nurse, who seem to be the ones who appear to know most about aftercare. Mind you, I would also choose a stoma nurse who was keen on irrigation, so that I did not get a negatively biased or an ignorant view.

Here's hoping that your enquiries will lead to the conclusion that you will be a candidate for irrigation. If not, then you still will not be alone in having to wear a bag and there are a lot worse things in life that can happen.

Best wishes

Bill 

 

Thanks for your answer, Bill. I didn't ask my surgeon if I could irrigate, this was something he told me just before surgery, to prepare me, I guess. I have had small firm stools but, more often my output is like overcooked porridge or looser. I'm only 4.1/2 months in so probably very early yet.

On one of my visits to see the stomas nurses I mentioned to one about irrigation later on and she said something like, 'Oh you need a lot of equipment for that', and that was it really. But I will bring it up again later on. I don't feel ready to try it at the moment as I feel I am still healing, both physically and emotionally. If it isn't possible then I will be OK with staying with the bag. There are people a lot worse off than me.

The reason I had a stoma was because scar tissue from previous ops. wrapped around parts of my bowels cutting off the blood supply and causing all that was removed to die and I developed gangrene. I was left bowel incontinent and spent nearly 2 years next to the bathroom. Maybe that is why my output has a tendency to be loose and more like an ileostomy. It would make sense.

Hello Belshie. Your reasoning sounds good to me. I spent more than ten years incontinent of feaces so I know how you feel about having to be near the toilets. If I knew then what I know now, I would have opted for a stoma right at the beginning but there is no point in worrying over decisions that might have been.

Stoma nurses seem to fall into several categories, from those who don't know about irrigation, so will not give positive advice about it, to those who don't want to get involved in showing people how to do it because of their own aversion to the process, right through to those who have the interests of the patient at the forefront and will give good advice and practical help in the startup process. Obviously, it is the latter ones that will be able to give you impartial advice on whether irrigation will be appropraite for you but first, you have to find one.

As you rightly say, there are always people worse off then us but that doesn't mean that coping with our physical problems becomes easier because of that fact. Although it may well help sometimes with how we view it all.

Best wishes

Bill  

So true, Bill... my nurse did say to me that I would be a good candidate for irrigation, and at the time, I thought she was simplifying it. But looking back, the process is pretty simple... but I see in this forum that you're correct about many of the nurses... physicians too. My nurse at my surgeon's office was extremely interested in learning about it... she said she didn't even know what it was, and I was her only patient that she knew of that did it! I think years ago, they discussed it with patients before leaving the hospital, but now they seem to not mention it... could be because appliances, etc. are much better than they were 30 years ago... but as you know, irrigation is not a new process... it has been around for decades. I had a wonderful oncologist that encouraged me from the beginning... he told me that many celebrities irrigate and continued on with their careers much easier. Even though he mentioned it, I'm not sure I would have tried it without the encouragement and help from a few people on this site... I'm definitely an advocate for it! :) CH

Hello CH. I have been reading all your posts with avid interestand can see that you are a great advocate for irrigation. It is so useful to have  someone  writing abaout it that had only recently begun using it as the new experience is that much more pertinent to those who are contemplating it for themselves.

Keep up the good work.

Best wishes

Bill

Thank you, Bill, for your always encouraging words and posts... This forum has been a great vehicle to share and get support! Blessings to you :) CH

I have really enjoyed reading these posts...thanks for sharing your experiences. I have just started the irrigation process. I have had a colostomy for 4 years now and am getting tired of always emptying my bag at the most inconvenient times. Because I've developed a hernia, I have a similar problem mentioned earlier in the posts.

My first attempt worked well and I managed to slide the cone in and drain water into my colon. At least...I thought I had. I'm sure I lost a lot of water due to it leaking out. I wasn't really paying that attention to where the water was going. I watched the bag slowly drain and figured all was well.

I didn't have a drain sleeve so I just put my 2-piece bag on and waited for it to fill. It was a messy experience but I figured I'd give it my best. I actually lasted 24 hours before I had another bowel movement.

48 hours later, I tried it again. This time I watched the water leak out and realized nothing was getting in. I tried using my finger to find the direction my colon was heading, but realized the muscles were pinching the opening. Having read these posts, I will try keeping my finger in longer and see if I can relax my muscles and keep the stoma open. I will wait till I get the long sleeve so there isn't the same mess issue I had earlier.

My ET nurse suggested I might use a catheter to attach to the cone and push past the hernia. I'm wondering if anyone has tried that method? I know one of the risks is pushing too hard and perforating my intestine.

So...if anyone has some advice, I'd appreciate the feedback.

Thanks,

Andy

Andy, congrats on starting to take control over your ostomy. What brand and size flange do you use? I might be able to mail you a few sleeves if mine will fit. The hernia will complicate things but irrigation is still possible in most cases. How high is the water bag? The bottom needs to be shoulder height. You can take the palm of your hand and gently work the hernia back into place, then put in the water. I find that irrigation on a completely empty stomach helps the water go in easier. Sometimes I place my right foot on the toilet seat and raise my left arm, this seems to straighten out my colon and lets the water enter easier. Tilt the cone and note the location where the water flows in the easiest, the sweet spot. Mine is slightly to the left and slightly up. Everyone is different and you will just have to find the right way for you. Don't give up, it takes persistence.....you can do it. Keep us posted.

Hello Andy.

A great start and bully for you for trying before the sleeve arrives. The whole process will be easier with a proper sleeve.

My ostomy nurse also suggested a catheter but she gave me a very thin one which is used for urinary purposes. Fortunately, I still have some that were for faecal incontence from way back. However, they were not suitable because they have a balloon contraption built in which expands to stop the water coming back out. It needs to be attached to the original device that separtes each part otherwise the ballon just keeps on expanding until it bursts. I did manage to heat-weld the ballon side closed, but I found the system was still not very good because, unlike the cone, there was no way to prevent the water from come straight back out. The second type of catheter is too big fix to the cone so I gave up on that idea and converted to using a pressurised water system based on a garden pressure pump. This water pressure helps to push the cone past my hernia, far enough to achieve irrigation success. It also holds enough water to allow for splashback in the early phases, until the cone get past the hernia. In my opinion it's still all  worth the effort!!

I hope this helps

Bes twishes

Bill

Hey Andy...lots of great information from both Bill and Mild Mannered Super Hero...fortunately I haven't had a hernia but I agree that maybe certain positions and a few "tweaks" can potentially help the water to flow in easier. Continue to ask questions and most importantly...don't give up!! Blessings CH:)

Re: (Irrigation Colostomy) Andy, I must say that was very courageous of you for trying. Yesterday, I went to see my ostomy nurse who taught me how. My first time, it was leaking at first, so it was put in the off position while she moved the cone to find my spot. And then it was off to the races, quite a different experience. It wasn't messy. I was in there for about an hour. She introduced me to the sleeve, a very long one that I needed. But I was instructed to do it every 2 days, although I did have a little output yesterday and this morning. I decided to ask because listening to my fellow ostomates, there is such a wide range of experiences on this site. I'm truly glad I found it. However, I felt like perhaps I need to get control instead of Claudia controlling me. So, good luck Andy, and I'm going to continue to push on, not giving up. I did ask her about the pump, but she said she didn't know anything about a pump. However, it was an experience!!! Keep at it, Andy!!!! Angelicamarie

Hello Angelicamarie.

It's great o hear that you are giving irrigation a go. I feel sure you will not regret this decision once you get into a routine of your own.

I tried extending the period between irrigations but I could only stretch it to 1.5 days before I had output. I therefore decided that I would Irrigate every night, so that I did not have to think about it at all during the days.

Best wishes

Bill

Bill the nurse said two days, but as I said, I had output yesterday and today. Perhaps I need to talk to her again, but she did say it will take a while for the stoma to react. Again, as usual, thanks my friend. Angelicamarie

Hey everybody, thanks for the encouragement. I received a sample sleeve and tried it out yesterday. The results were a lot better than before and I tried a few things to assist.

Getting past the hernia is still an issue, but once I manage...the water gets in. This is pretty experimental as the stoma wants to close and I get water backing out.

I got a pitcher of water to help flush the stool down the bag. I found that handy to have beside me. Lots of toilet paper near as well. I used an old colored towel by my feet to keep them warm and also to absorb any errant spills.

The hardest part was trying to figure out when water was going into my stoma and not just trickling down the bag. I'm sure I lost more water from leakage. I also broke the clip for the end of the bag 1st try (lol)

I irrigated 3x and noticed the 2nd had good results and the 3rd try really cleaned me out. Pretty sure I evacuated all while sitting, so I got up and put my mini bag back on. 20 minutes later I voided a lot...good thing I kept the bag on.

Had a shower and cleaned up. For the 1st time, I tried a stoma cap to wear and go to work. I'm a nurse and work 12-hour shifts. Guess I was feeling brave. It was so wonderful to not wear a bag and look at my waistline like it was normal again. What a feeling of confidence! Got scared a few times when I felt some wet gas, but that little cap held on tight and the filter worked without churning the air.

I've had the cap on for 24 hours now. I have one more night shift and then will see how it goes. Just in case, I have some backup product in my pocket!

I find the whole bathroom procedure to be a bit on the long side and not without "it's gotta be easier than this". But......how wonderful to walk in public without that big bulge in my tummy....it's worth every minute!! Someone actually asked me if I had lost weight! I will be ordering a box of sleeves and if those go as well as it seems, I can see some of my social activities really change for the better. I've walked on beaches with my big bag hanging out, but I'm looking forward to the day I just have the cap on.

Thanks once again for sharing your tips and experiences

Andy

So wonderful to hear, Andy...you're navigating through the process! I think you will find that as you progress, it will be less time-consuming and your confidence will just escalate...know this...irrigation WORKS...you can be confident that you won't need a bag eventually...you just have to learn your own "process" in terms of how long it takes and when you can be confident that all is well and you can put the stoma cap on with confidence. Personally, the whole process is basically finished for me within about 45 minutes...at first, I waited an hour just to be sure, but now I know I'm safe within the 45-minute time frame. Everyone is different, and you will learn what works for you. So proud of you for not giving up and tweaking what you needed to...you will find that your post will help someone else! Blessings :) CH

I have a few more questions about irrigation. Do you continue to irrigate until you don't have any more stool voiding, or just do it once? I see that people are using different amounts of water. I used 750 mLs today and I continue to void. I used another 500 mLs and am still voiding remnants.

Time-wise, I see different times like 24-48 hours. Last time, I waited 48 hours and did not have the slightest indication of needing to void, except for some gas. I irrigated and did not have any results. The next day, I irrigated again and was voiding a lot.

This time, I went another 48 hours and did not have any indications I was voiding, so I started irrigating after 36 hours, with results.

Does anyone wait, or do you keep the irrigation process to 24-48 hours?

I'm using a Hollister stoma cap and find the opening too small for my stoma. It doesn't work well for keeping odor away despite the filter. I ordered a sample stoma cap from Coloplast. It looks like it can accommodate a larger stoma.

The convenience of a stoma cap is great as the profile is almost invisible on my clothing, but it seems you use a lot more ostomy product. I replace the cap every 24 hours, and when it comes to irrigating, I use a flange with the sleeve attached. I can't leave the flange on as the liquid leaks under it while voiding. So every 2-3 days, I replace a flange and go through 2-3 caps. I'm replacing the cap daily as I thought the adhesive was only meant to be a temporary use and was afraid it might come off. Any thoughts on that?

Thanks for your encouragement and advice.

Andy

P.S. As far as what I learned, I keep a pitcher of warm sudsy water close by to flush the sleeve of stool. It makes it much easier to reattach the clip with much less mess. I use vinegar to rinse everything after to provide sterility and cut down on the plastic becoming odorous.

Andy, the frequency of your irrigation will depend on how much you eat and what you eat. A high protein and low fiber diet should help you get 2 days between irrigations. I just irrigate 1 time every 2 days with 1.5 liters of water. Your results may vary. Try to irrigate at the same time each day if possible. I find for me that early morning on an empty stomach is best, that way you can wait 1 hour for the water to return, then have breakfast which should stimulate your bowel, and if you didn't get completely clean, that should coax anything remaining to come out. You might want to clip the bottom of the sleeve closed and keep it on until you have breakfast, at least until you get your bowel trained, that should save on supplies. I no longer wear the caps but rather I now use the "patch", another member told me about them and they are even smaller than the 2-piece cap system. They have no "flange" and just stick on like a large bandaid. I use Hollister 1796.

I irrigate without a flange, just fasten the sleeve with a tight-fitting ostomy belt to hold it in place and it will seal fairly well to the skin around the stoma. I have had no leaks using this method, but like you, I use an old towel to stand on in case I do. I do the same warm soapy water trick that you use and the sleeve will last a few months. Stick with it until you get everything figured out and you will reap the rewards of a more active and normal lifestyle. Keep us posted. Regards. MMsh

Hey mild-mannered superhero, received your reply to rookie irrigating, the nurse told me every two to three days, each time I get a little more. !!!! But my sleeve had a tear. I used it this morning and while cleaning it, it tore, so I called my nurse who told me she ordered it from Edge Park. On the 21st of Nov, I called Edgepark. They claim they didn't have that prescription. So it was ordered again yesterday, in which they said it should be a week. So it looks like I'll be starting over again. But thanks for the instructions. Angelicamarie

I haven't started the irrigation process yet, but plan on it in the future. I always wondered if there was another way that might last a little longer... Most of us on here have had a colonoscopy, I have had a few, one last week through the stoma. One thing that hasn't changed is the good stuff we get to drink prior to the procedure. I have noticed that I don't have much of anything coming out for about a week after, except maybe some clear liquid the next day (a very small amount). This may be a dumb question but why couldn't you take a 1/2 dose every 4-5 days and be done with everything in between? It may not be good for you? Just curious if anyone has thought of this or tried it? It would be great if you were going on a trip for a few days, if it could work, nothing to deal with for 6 or 7 days would be great.

Hey Letsrock, you said you have never irrigated so I don't quite understand when you say you had a few, what, and what good stuff. What are you doing the last 4-5 days cause I'm irrigating, and I still have output. Angelicamarie

Sorry if that's confusing, I was referring to a colonoscopy that I have had that procedure a few times, the good stuff is in reference to what you have to drink prior to the procedure........

Letsrock, hey I received your message, now I understand, sorry that you had to have that done more than once. It is very painful, at least it was for me. Thanks for responding, letsrock.?angelicamarie

No problems, I was just thinking that if you drank that same mixture (the one that you drink prior to the scope) once a week, you wouldn't have any output for a few days....

Lets rock, I have to have a colonoscopy on the 7th so they go through the stoma?

Angelicamarie

I don't have any other way... I have a Barbie butt... a colostomy... I was really no big deal... painless... pretty quick

Hey Andy...I agree with Mild Mannered Super Hero...I think every 48 hours is the best way to go...the idea is that the colon eventually is essentially "trained" to only go when irrigated..having said that I would stick to the every other day schedule. I also drink a lot before...about 16-24 ounces of water seems to help the process...good luck and continue to ask questions...lot of good information in the forum! Blessings-CH :)

I started irrigation 1 month ago and mainly do it at the same time every evening. It works great and I have no output for 24 hours. However, sometimes after irrigation, I only put a paper towel on and I have a little output every 10 minutes or so which is terrible. I do not want to waste so many bags. Mostly irrigation has given me my freedom back and I am very happy to never empty bags during the day. I usually use 500 ml warm water and am done after 30 minutes. It is frustrating if you have something come out every 10 minutes after irrigation.

Does anybody have the same problem? As I said, it has been great 90% of the time, just once or twice I had this happen to me.

Hello Susanne. 

You don't say how long the 10 minute outputs go on for.  We are all different in this regard and many people are fortunate enough to finish irrigation in under an hour. I, on the other hand, usually have to wait for a couple of hours before I feel comfortable that I've finished and even then, occasionally I have a small amount of output for an hour or so after that. Sometimes I even find that I've had  a little output during the night (I irrigate in the evening). 

My solution to this frustrating state of affairs is that I leave the irrigation sleeve on and fold it up so that it makes a temporary bag. What I have also found is that once I get up from the loo and move around, it seems to encourage the last of the output so, although it is a bit of a fag, I then have to empty the sleeve later because of the small amount of extra output. Nonetheless, I still think that the irrigation is well-worthwhile because I DON'T HAVE ANY OUTPUT AT ALL THE NEXT DAY. 

Best wishes 

Bill 

Hi Bill,

Thank you for your response. And yes, considering everything, I am very happy to not have any output during the day while at work and that gives me more of a better control and I feel free again. I guess a little output once in a while is no big deal but I also think it will all work eventually.

I am very glad that irrigation lets me have more control over my life again which is so important and I feel much better in the gym etc. and all the activities I do enjoy.

Thank you.