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Welcome to MeetAnOstoMate
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Irrigation

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Posted: Thu Oct 26, 2017 4:36 pm

A couple of weeks ago, some of you suggested irrigation. My surgery was this past April and this was the first I had heard of irrigation.  I looked it up and can't for the life of me understand why it is not presented to people at the outset as an option for bowel management. I have my appointments next month to see my doctors and I am hopeful there will not be any contraindications to trying this.  I'd like to thank everyone for suggesting it. I am sure there will be questions down the road but for the time being, my main question is why isn't this brought up as an option? It seems like it is a real lifestyle changer (for the better).

Posted: Fri Oct 27, 2017 1:58 am

Hello Ali.

I couldn't agree more. It doesn't make sense for us not to be informed about the possibilities of an easier lifestyle. However, given that many medics have not even grasped the basics of stomas , it is not surprising that some of them have never even heard of irrigation. 

I used to anally irrigate prior to having a stoma so I insisted on irrigation as soon as was physically practical. 

Best wishes

Bill

Posted: Fri Oct 27, 2017 12:51 pm

Hi Bill,

At my last appointment, when I spoke of my frustration adapting to this colostomy - it was compounded with the post-op chemotherapy complications - my doctor spoke of some of her patients being able to train their bowels. In retrospect, I think those of her patients who can do that must be irrigating. I feel like a poop factory now, going all the time. It deters me from leaving the house and has certainly affecting me in many levels. I finally found appliances I like which I must now purchase (holy smokes the expense!!) but still want to try irrigation which is another expense but I think will give me some freedom to live life which I am certainly not really doing now.

 

Posted: Sat Oct 28, 2017 3:46 am

Hello Ali.

I am not sure if irrigation is possible while youare having chemotherapy but it is worth asking. 

Certainly irrigation at regular/routine times will help to train your bowel but I have read many posts on hear where people who are not irrigating have also trained their bowel to behave better than if they just let it do its own thing. The trick is to be patient and not expect the changes to come about immediately. The autonomic system does not react to the brain stimulation in the same way that other parts of the body do but that does not mean that it will not respond at all. Intense thought, such as is accomplished in yoga and other forms of meditation seems to have some impact in affecting those parts of the system that are slower to respond to the normal cognitive messages.

As for the financial side of things, I think you will find that irrigation 'can' be a lot cheaper than wearing bags if you are willing to wash out the sleeves and reuse them. I had problems with the Dansac sleeves not adhering to the skin properly and leaking (sometimes coming off altogether during the process) so I stuck one on a solid flat flange with a belt to hold it in place, that I made myself. This worked perfectly well and lasted a few weeks before needing to be replaced. I have since tried a Coloplast two-piece Assura sleeve, which is similar to the one I made for myself but it is professionally manufactured. I can get these to last upwards of two months before they become to disgusting to continue using. The baseplate is still being used after six months so I think that this would be a much cheaper option than wearing bags. However, being frugal is not the reason I would recommend irrgation. Being free of bags and output during the day lifts anxiety and gives us confidence to do whatever we want in life without the drag of a bag and everything that goes along with that sort of management of the condition. Irrigation has its own drawbacks, but they pale into insignificance when compared to the alternatives.

I hope you get the opportunty to try irrigation and I hope it is successful for you. If so, I can guarantee you won't regret the change.

Best wishes

Bill 

Posted: Sat Oct 28, 2017 3:01 pm

Hi Bill,

I finished chemo in July so I should be good to try the irrigation.

Thank you for the irrigation information.  I watched several videos on irrigation, an excellent one being "Adventures in Irrigating" which showed how to irrigate. I did wonder if people recycle the products or not. I noted it takes 6-8 weeks to train the colon to perform so that you only need to irrigate every 48 hours. During that time, you would still be wearing the same appliances but after that I see that what people wear varies: small pouches, stoma caps, and bandaids. If you are still wearing small pouches, then the sleeve would snap onto the wafer as one would still be used. I know nothing of stoma caps.

I have had a lot of problems with finding an appliance that works for me and am currently using a 2-piece convex system from Convatec; I have sensitive skin. Their diamond sachets also help tremendously with odour control which is a big issue for me. I am producing stool all day long and it rarely drops inside the bag unless I have diarrhea or I have blow-outs like this week (I am out of the Convatec and using flat system from Hollister).

I find this whole bag situation depressing, demoralising and making me insecure to leave the house. I go back to work in December and I can't imagine it at this point. The irrigation seems like a more viable option for me.

Ali

Posted: Sun Oct 29, 2017 12:26 am

 

 

Hello Ali,

As an irrigator for 18 years, I would like to make some comments that may be helpful for you.

 Firstly I suggest you look into getting some Imodium or similar to "harden" your output. I had the "loose" problem too after my operation. This will be a big help for you.

 Secondly there is no hard and fast rule for ostomates who irrigate. Everyone is different and everyone's insides work differently. I wouldn't be aiming to irrigate every 48 hours. In reality it is more likely to be every 24 hours. (Because of a parastomal hernia I irrigate every 12 hours. It only takes half an hour and then a wonderful shower....God I love it)

 Thirdly I do know that after treatment, your insides need time to settle down from the trauma of the surgery. It was over 12 months from my op. to when I started irrigating although I agree with you it is something I should have been told about before they started cutting. Don't start me on this subject!

 Lastly, when you do begin irrigating, stick at it. It does take time to master and it can be very frustrating but if you persist you will not look back and you will be able to put a bit of tape over your stoma like I do everyday. No more bag!

 I wish you the best of luck.

V.J.

 

P.S. Remember irrigation does not work with illieostomy, only colostomy. 

 

 

Posted: Sun Oct 29, 2017 3:33 am

Hello Ali.

I agree with everything that V.J. has said. The people who can go 48 hours between irrigations are very fortunate. I experimented at the beginning, only to find that I went for about 36 hours, which took me half-way through the next day. That was pretty useless as far as I was concerned because I still had to wear a bag and the output came right in the midle of a working day. I irrigate every evening so that the next day is completely free of output. Unfortunately, I appear to suffer from colonic inertia, which means that it takes me longer to get rid of the output than some others. The process takes about 1,5 hours but I stay on the loo for the full 2hrs just to be sure.  At the beginning, I was having alast burst of activity about an hour after that which would have been disconcerting and annoying if I hadn't kept the irrigation sleeve on and folded it up to form a bag until I went to bed. At nights I swap the sleeve for a loosely fitting hernia belt and a tissue over the stoma to soak up any mucus. The advantage if this is that it gives the skin around the stoma a chance to dry out by the  morning and I'm not as sore as I used to be. I could probably get away with wearing a tissue during the day but I also have a problem with the peristalsis muscles closing tightly over the hole and stopping anything getting out. This includes gas, which is very painful when trapped, so I wear a stoma plug duirn the day which keeps the hols open and lets the gas out. It also has a built-in filter so there is no smell.   

As for your present situation. You might like to have a look at the Convatec stoma collar, which is made from very soft rubberand , like the label implies, it acts like a collar.  I found that these fitted fairly well round the sides of the stoma, guiding the output into the sleeve/bag and away from the surrounding skin. Thus, the skin did not end up as sore as when the faeces came into contact with it. 

Best wishes

Bill

 

Posted: Sun Oct 29, 2017 1:08 pm

Hi VJ and Bill,

 

Thank you for your comments. 

I don't want to be irrigating every 12 hours nor do I want to spend 2 hours in the bathroom daily. This is a blow to this system of bowel management.  So I guess I start off with every 24 hours and see how that works? Ideally, I'd like every 48 hours so I hope that will be what my body agrees to. I work full-time and have a house to maintain alone.  I'm pretty tired at the end of the day and don't know what to expect when I go back to my demanding job.

My next question is, once you've irrigated, how long do you keep the sleeve on for? If it takes, say, an hour, once it's done, is it done and I can take everything off or what?

At the beginning, in between irrigations, I suppose people wear pouches as usual for the first few months?

 

Ali

Posted: Sun Oct 29, 2017 4:06 pm

Hello Ali.

As with most things to do with stomas, everyone seems to have different experiences so it's a case of trying things out to see what suits you best.

I only keep the sleeve on because invariably I have an output about an hour after it should all be finished. This is a precautionary measure to save me having to clean up if and when it does happen.  I explained that my bowel seems to be rather slow at emptying so I've adjusted to that. The two hours on the loo is also a precaution so that I can get it all over with. However, if I have other things to do, I simply fold the sleeve up to form a bag and get on with whatever else I want to do. (It's no worse than wearing a bag in 'normal' stoma circumstances.  The main reason I stay on the loo is that I have a computer up there and I work during those couple of hours so for me it doesn't seem like a long time and I feel I am productive during the process. after the couple of hours I can be confident that I am all finished with stoma stuff until the next irrigation. In the beginning, I did wear bags during the day, which turned out to be quite unnecessary and it wasn't long before I stopped that practice in favour of plugs.

I sometimes ponder on the time factor and have concluded that I probably spent in the region of three to four hours tending to the needs of the stoma during the course of a day before irrigation. but that was complicated and aggravated by having to find loos everywhere I went and most of the time they were not suitable for my needs. The irrigation freed me up from all that aggro and I now live a relatively normal life with the stoma playing no part in my daily programme and routine. I could not affords to tend to the needs of a stoma during the course of my daytime jobs and I'm really grateful for the opportunity to irrigate.

I hope this is helpful.

Best wishes

Bill 

Posted: Sun Oct 29, 2017 5:24 pm

Hi Bill,

I start back at work at the end of December and as it stands now with the pouch system, I don't have much confidence in being in public more than 1-2 days a week or for a few hours a day. I am nervous about the irrigation method until it gets to a routine but it has to be better than the crap I am living now. I just don't want a sudden outpour, if you know what I mean.

Ali

 

Posted: Mon Oct 30, 2017 2:01 am

Hello Ali.

I feel sure everything will be okay once you get used to the new way of managing, whether that is with bags or with irrigation. Something like having a stoma is such a drastic and profound change to our dialy routine that it is bound to be a worry until we adjust. If you stick with it and try to keep a positive attitude, you will find that it all fits into place and you will be able to look back and wonder why it caused you so much concern in these early days.  It is worth bearing in mind that the alternative could have been far worse!

Best wishes

Bill

Posted: Mon Oct 30, 2017 8:33 am

Hi Bill,

After close to 7 months, I would have expected a better routine with the pouches than this. It's been a nightmare and I don't call this living - it's existing. It is so demoralising. It is a constant battle to keep the morale up. I don't want the rest of my life to be like this. 

Ali

Posted: Tue Oct 31, 2017 2:32 am

Hello Ali.

You seem to sum it up rather well with regard to using bags. It did not suit me at all and was added incentive for me to irrigate.  The irritating thing about it was the fact that there appeared to be virtually no routine at all, except that I had to empty the bag an interminable number of times per day, which kept me tethered to the nearest toilet facility and created constant anxiety about whether there was one nearby. Invariably, they were not suitable for stoma users as the washing facilities were not adjacent to the toilets but on the way out, in full view of the public. That method relies on the stoma doing its own thing with very little chance of influencing the outcomes other than cleaning up after it. I am not a control-freak but I certainly needed more control than that and, yes! you are absolutely right, it's 'DEMORALISING'. I won't pretend that irrigation doesn't have its own frustrations but lack of control is not one of them. There is a definite routine which takes time and can occasionally be a drag, especially when I would rather be doing something else at the time allocated. However, the advantages far outweigh the irritations so I continue with irrigation and am pleased that this is an alternative on offer.

I look forward to hearing how you get on.

Best wishes

Bill.

Posted: Tue Oct 31, 2017 2:26 pm

Hi Bill,

I am rather envious of those postings where the writer states that there is only a BM once every day or every other day. If only. I think then that the pouch system would not be so bad. I have come to view my stoma as "Shimi" as it is a mill producing stool round the clock. I can eat the same thing twice and get two separate reactions. Today I fight with myself to leave the house as I am out of milk and cream and have to go to the store.  Do I have to? I certainly hope irrigation will work for me.  I am so discouraged and it is not like me. I have been "let's do this" from the get-go and now, not so much. Talk about sucking the life out of someone.

Ali

 

Posted: Thu Nov 02, 2017 2:42 am

Hello Ali.

I agree, the chronic nature of ths condition can be both discouraging and draining especially if there is no end in sight. However, if life is to go on and have some positive meaning, then it is useful to strive to find and hang onto the positive aspects of what we've got. Whenever I get into a low mood, I think back to what it was like immediately before the stoma and try to imagine how I was coping then (not). Comparing the before and after and thinking about how my condition would have deteriorated without the operation, helps me to put the present circumstances into a more balanced perspective. The other thing I try to do is find a distraction to take my mind off my self-pity and onto something more positive.  In my case, I take the adversity and write rhyming verses about it, which helps me to express my negative feelings at the same time as getting something more positive from the experiences. I do believe that any distraction is better than focussing on the negatives because by doing the latter, those negatives assume a a greater significance than they need to.

I also believe that once you get the hang of irrigation, many of the present negative aspects of having a stoma will fade into history and you will be able to enjoy your life again.  When that transformation happens,  I hope you will take time to support the people who come along with the same problems and concerns that you are having at this time.

Best wishes

Bill 

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