Colostomy irrigation not working, need suggestions

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CH

You're doing great, BettyJoe... and you will inspire others with your willingness to share your experience... paying it forward! :) CH

Bettyjoe

It's always great to hear from you. I have been feeling down lately. Sadness seems to creep in when least expected. I think my job may have a lot to do with it. I hope you are well.

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CH

Hey friend! I'm so sorry to hear you're feeling down...unfortunately, irrigation is a nice alternative to what we deal with on a daily basis, but it's not the "end all" and "be all" to all life issues...I hope that you will bounce back soon and yes...I'm sure your job can be somewhat wearing...my daughter is in a similar field and I know it can be emotionally taxing. Keep your head up and you can be proud of yourself...you've taken control of your life in a positive way and before you know it, this will be your new normal...I'm very happy for you and I hope you have a better day tomorrow! Blessings :) CH

Bettyjoe

Good morning, thanks for the encouraging words which really make a difference. Yes, better days are to come. I have been here before and have been able to get out. I am striving and looking forward to the new normal.

Beshlie

What a great topic. Thank you to all who have posted.

I had my stoma nearly 4 months ago, a colostomy (which sometimes behaves like an ileostomy due to not having a full colon left), and I am hoping that later I will be able to irrigate. I would enjoy the freedom that it could give me. Bettjoe, thank you for taking us on your journey with irrigation with you, much better than reading an article.

I don't know yet if I will be suitable because my output can, at times, be a bit watery, but we shall see. It may be early days yet.

 
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CH

Hello Beshlie...I too hope that you're a candidate for irrigation. It's sort of hard to say about an individual situation but "painting with a broad brush" I can tell you that you need to have some colon and some healthy bowel in order to irrigate...it sounds like you may be able to. For me it's life changing and I highly recommend it. This forum is full of people experiencing many of the same things and most are very willing to share...answer questions...whatever you need. If I can help in any way it would be my pleasure...blessings..CH :)

WAB
Colostomy irrigation (for descending and sigmoid colostomies only)
letsrock

I sure would like to try the irrigation process, does it really help with gas?

Bill

Hello letsrock. Perhaps a little explanation wouold be worthwhile as to 'how' it helps with gas - Or at least with the gas that I have as I cannot speak for others.

Being a vegetatian,  I eat a load of stuff that generates gas so irrigation doesn't help in that sense.

However, what I have found is that once I have filled up with water so to speak, the first thing to come out is not so much water, as lots and lots of gas. My theory is that, the bubbles of gas rise to the surface, just like it would if it was not in your gut. Anyway, It always feels satisfying to know that so much gas has escaped at a time when it doesn't matter, rather than when I might be in company. After irrigation, I leave the sleave on overnight as a bag and plenty of gas continues to escape at periodic intervals. In the mornings, after a bath, I apply a stoma plug which, during the day, keeps the stoma open whilst letting any gas seep through the plug without making that embarrassing farting noise. It also has a filter so there is no smell.

This is my take on how irrigation 'helps' with gas. When I was wearing bags, the gas was so excessive, it used to fill up like a balloon and feel like it was going to burst like one as well, or suddenly take off and fly around the room, farting as it went - just as ballons do when you let them go under pressure! A bit of an exaggeration in 'fact' but not in my perception. I'm sure you get the picture. 

So, from my perspective, Irrigation helps me to 'manage' gas effectively, rather than prevent it developing.

I hope this helps.

Best wishes

Bill 

letsrock

Bill,

Thanks for the lesson, I appreciate it. I see on here it varies greatly as to the time how often people irrigate. My biggest challenge would be the timing.....I was thinking about every other day and not on the weekends....not sure if it would work that way....I plan on giving it a try this fall as things slow down for the winter months...



Thanks again,

John

mild_mannered_super_hero

Your diet will determine how often you irrigate. If you eat a lot of fiber, it could be every day. A low fiber, low residue diet should get you by for 2 days. How much and what type of food you eat is the key...what goes in must come out. I wouldn't worry about the timing issue. Once you try irrigation, you will look forward to getting it done so you can be free from worry for a few days. Good luck and keep us posted on how it goes.

letsrock

The timing was about whether to do it in the morning or evening... I guess I should get after it and get some sort of "irrigation kit" ordered... any suggestions?

CH

It's not possible to not irrigate on weekends...if you're on an every 48-hour schedule it's just that...every 48 hours...one week it's Saturday and the next it would be Sunday. I think Coloplast has the best irrigation supplies...the bag has a temperature gauge and the water flow regulator works well...having said that I find that I really don't need the temperature regulator now...I can sort of gauge how warm I need it to be now. Good luck and always ask questions...this forum is very helpful! :) CH

Bettyjoe

Hello guys, I am irrigating every other day, but it does include weekends. That can't be avoided. My system seems to be responding, although on two occasions very little output, but it is much better. The gas, I too agree that it depends on the foods and I don't think it can be completely eliminated. At least not in my case. I am looking at my diet. I do believe that will determine the success. Thanks.

Beshlie

Sorry to sound ignorant but, when you irrigate does the water just go into your colon or does it go into your small intestine too?

I lost 2-3 yards of small intestine, terminal ileum and all the ascending colon. So I'm just left with transverse colon and about 4" of descending colon and my stoma is at the end near my naval. It is a colostomy which behaves like an ileostomy because of lack of enough colon. My surgeon told me this and he was right! As I understand it, from what I have read, your output needs to be firm to be able to irrigate? If so, I will be stuck with my bag.

Beshlie

Sorry, that should be colostomy!

Bill


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 

 

Beshlie

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.

Bill

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  

CH

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

Bill

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

CH

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

andyd

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

mild_mannered_super_hero

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.

Bill

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

CH

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:)

Angelicamarie

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

Bill

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

Angelicamarie

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

andyd

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