Irrigation with a colostomy

I was very unwell yesterday. At midday, I started having terrible contractions and my stoma stopped working. Then the pain increased so that it was a constant pain for 1 hour. Then I threw up and the pain lessened only to increase again within 10 minutes. This went on until 9pm when air finally escaped from the stoma and the pain stopped. This scenario happens every month or so. I used to go to the hospital where they put me on morphine and keep me in for observation in case the bowel bursts, but I no longer do that. I keep my fingers crossed that the blockage will unblock itself. It always has unblocked itself. My surgeon said I had a lot of adhesions and there is nothing surgically they can do for me. I have palpitations anyway at the thought of any more operations. I take Buscopan for the pain, but it did not help at all yesterday.
Does anyone else have this problem?
I was thinking of trying irrigation. Before I make an appointment with my stoma nurse, I would like to know if other people irrigate and if it works. I am frightened of doing it, but I am terrified each time my bowel plays up.
I appreciate any help you can give.
Thanks
Maureen

Hi Maureen, sounds similar to my episodes when I actually get rid of a blockage which has formed in my colon beyond my ileostomy - often end up in the hospital overnight with a dose of morphine and cyclizine, and it clears itself overnight. Last time I was in, they gave me an injection of Buscopan, which didn't clear it as quickly but it did dissipate within an hour or so...... I have now got some of it to carry with me but suspect it won't be the same strength?

Not sure if I would be able to irrigate it and flush it downwards, there is a small hole next to my stoma down which I put suppositories last time - took 3 days to get there and move anything and then did it again a few days after when I got some bowel prep prior to a procedure - it was horrific .....

So, in a similar vein to Maureen, any thoughts?

Rach xx

Scarlet,

I was just in to see my surgeon late last week. This fellow is quite good. He takes on the mistakes of other surgeons.
Anyway, to make a long story longer, I have a similar problem to what you describe.
He says it is caused from the intestine getting kinks and collapsing mainly where there is scar tissue. After 6 surgeries, he says to go in and try and correct it, unforeseen problems with the scar tissue he is sure would arise. It's best simply left alone. He is of the thought things could only get worse if more scar tissue was created in trying to remove scar tissue.
He was also very concerned with a nick or accidental cut in the intestine. He said although they try and avoid any mistakes in nicking the intestine, it happens often.

I find if I have the problem, it's usually late in the day if it is going to happen. I think that is because I have eaten during the day. I eat tiny amounts of food at any one time. I have not had a meal in years. If I do eat more than say 4 oz., I don't feel well and tend to get very nauseous(sp).

I take very small bites and chew it almost to liquid, I stay with proteins. Trying to give my body as little to pass as possible.

I get full blood work ups every 3 months, except for Ferrin(iron). My blood levels are of a 30-year-old. I do take kids chewable vitamins and a few other vitamins.

I have also found walking late in the day helps me. It may be the movement is jarring my intestines a bit. Almost like founder in a horse.

I may not have the problem for weeks on end, then one evening I get it. I have oxycodone on hand for the pain. I seldom use it. I have vomited a few times, although nearly nothing came up.

I hope you can get a handle on it. Certainly no fun.

Sleep well, young lady.

Rick.....

Irrigation is a very helpful aid, but not everyone is a candidate for it. You must have a healthy colon remaining. In my case, the ostomy was the result of cancer surgery and it works well for me. Please contact your stoma nurse and see if you qualify.
It is painless and easy to learn.

Thanks for everyone's comments. They were very helpful. I sometimes feel I am the only one suffering these episodes, so it is good to hear I am not alone. I know that sounds terrible as I do not want other people to suffer either. It does not help that the medical profession doesn't really want to know as there is nothing they can do.
RACH - It sounds as if you go through the same as me. Blockages are so horrible and unable to predict. It sounds as if you get well treated in hospital. Anytime I have had to go to my local hospital, I felt I was a nuisance. I did not feel well treated at all. Irrigation is a method used by people with colostomies. I do not think it is suitable for ileostomists. It is used every day or every two days to empty the bowels. If I am suitable for it, then I would clear out my bowel with water and I should not get blockages. I think anyway.
Rick - Thanks for sharing that with me. I watch what I eat and always chew food thoroughly. But perhaps a lump of food goes down sometimes and this causes the blockage. Or my bowel just twists. Nobody seems to know. That is the frustrating part.
Mild Mannered Super Hero - I have an appointment in a few weeks to see my surgeon for a CT scan and I will also see my stoma nurse. I will discuss irrigation with them. So hopefully I am suitable. How long have you used irrigation? And how long does it take? Do you do it every day?
Maureen

It's now 6 days before my scheduled colostomy, and I've been reading some of the posts, trying to learn what to expect beforehand. What I'm reading about the blockages sounds so much like what I'm now going through, which is why they are removing the colon.
My colon simply doesn't function properly, and hasn't in years. I've already had a half-dozen abdominal surgeries, and all ran into severe complications due to adhesions. I've had numerous bi-sections of the intestine already.
It is my personal belief that the adhesions are what has "killed" the colon to begin with! But it's like one of you said; if they cut scar tissue or adhesions (basically the same thing), there is for sure going to be more to come back.
I think I'm at that stage where I'm fighting a losing battle with these things! Surely this next surgery will cause more, and I'm scheduled for yet another abdominal surgery within six weeks of the first.
It has been my hope that this colostomy would STOP the blockages I suffer from so badly. I know all about going to the emergency room, doubled-over in pain, sometimes for many hours before I can even sit up straight. After a while, you feel like an idiot for even going!
But everything I've read leads me to believe that I might still suffer with the horrible pain of the blockages. I sure hope not. I'm so tired of this.
The second surgery (Nissen Fundoplication) also requires that you chew your food very well and eat small portions. I guess I'm in for a double dose of everything!
Have any of you had your colon or small intestine removed for a reason other than cancer? Anyone had to have the surgery due to adhesions? I'd love to hear from you.

Still Striving - I have read other posts you have started. I think you have to have your operation and stay positive. You may not have any problems - indeed, the colostomy may be the answer for you. I feel you need to wait to see if there are any problems before you go down that road. All the best with your operation. Pseudomyxoma, the disease I suffer from, has affected my bowel and this could be another reason for my blockages. Pseudomyxoma is a mucus cancer and it attaches itself to abdominal organs, most of which I have had removed.
Take care
Maureen

I normally irrigate every 2-3 days. It takes roughly an hour of your time, but I can then go 2-3 days with very little or no output. I have a very physical job, and it's been a real lifesaver for working days. I have been irrigating for about 2 years now... I hope you will consider it if you are given the OK by your nurse.

I also irrigate every 2 to 3 days. I have an office job and since I started irrigating, I don't have to worry as much about having an accident and ruining my clothes and having to lose a day's work. I still keep a change in my office but so far it hasn't been needed.

I have been irrigating for over 6 months. Before I started irrigating, I was afraid to go very far from the bathroom at home. Accidents away from home tend to be messy, smelly, and embarrassing, don't they?
Now I go everywhere without the constant fear of leaks or the pain of skin breakdown. That can be a vicious circle itself.
Although a bowl of chili still makes me have to go "burp the bag," it isn't the mess it used to be.
If your medical professionals tell you that you can irrigate, go for it. It will certainly make a difference in your quality of life. Good luck!!
Pat.

Thanks, Mild-mannered superhero (what a mouthful of a name, by the way) and thanks, Pat. I feel hopeful now. Irrigation is definitely the road I am going down. My bowel rules my life at the moment. I feel irrigation will put me back in control as it has for you, Mild-mannered superhero, and Pat. My fingers are crossed that I am suitable for it.
Take care
Maureen

One stoma nurse told me about irrigation and said she had a friend who was an actor who was really pleased with it. Apparently, he said 'Great, now I can do things'. However, a year later when I asked another stoma nurse if accidents couldn't happen while I was out and about, she replied 'Nothing is perfect'.

Can anyone cast a bit of experienced knowledge this way?

Hi Lobster
I think having a bag for a bowel no matter what method you use is not perfect. I am going to try irrigation to hopefully solve my blockage problem. I think with a bag expect the occasional leak and it is a bonus if it does not happen. I have never had a leak actually with my colostomy bag, My urostomy bag .... well that is a different story.
The thought of irrigation is still scary for me but I remember when I thought my life would be over if I had a colostomy bag and it wasn't. So feel the fear and do it anyway is my motto. Nothing ventured nothing gained as they say. Take care
Maureen

Exactly... A short video on the subject... Been posted before but we never know who might be reading this thread and considering this option.

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

Hi: I'm unable to speak for other types of ostomy but, Generally speaking, those of us with Sigmoid Colostomies are good candidates for irrigation. I was recently contacted by
someone through this site who has irrigated for 10 years and look forward to gleaning a
few new tips from them. I've irrigated since surgery just over 5 years ago. The stoma nurses had suggested I wait a few months for things to "settle down". But Nooooo, I was
determined to irrigate, so I did. Right through 6 months of chemo, through 3 or 4 months
of its after effects and the slow return of more normal function.
The fecal accidents I created the first two years! Didn't know whether to laugh or to cry. Didn't have time to decide though as I was too busy cleaning the walls and floors!
Now I can laugh about it.
Without the chemo I am sure the learning process would have gone much more smoothly.
So what can I add? Well, for one thing I have never felt irrigation was something to fear.
Water is simply allowed to syphon into the bowel. It is not forced. When the bowel feels
enough pressure it simply expells the water back out and with it the water and waste. This is the same "colonic mass reflex" a normal bowel uses. I've just "triggered it", on my time schedule, through the use of the water. The warm water used seems to relax the bowel.
The hour or less it takes now seems to go quickly and if the evacuation has been complete I can cover the stoma with a light stoma cap rather than a larger appliance and repeat the
process in a day or two depending on diet.
Negatives? I wish I could use cool water rather than warm as the warm causes the waste
to really smell but my bowel doesn't respond as well with cool water, leaving waste and water I'm not aware of in the bowel, causing accidents an hour or more later.
Among the positives is that once a fresh stoma cap is in place, I pretty much forget I even have an ostomy.
The only two books I was able to find about irrigation when I was looking were both published a number of years ago in England. The process and diagrams in both are very
similar to those described in the irrigation kits but there is considerably more information.
I found both books encouraging and helpful.
Wishing you well. Fonz

Mild-mannered superhero. I watched the video and saved it as a favorite to watch again. Thank you so much for that. It is amazing.
Fonzi - It is great to hear about your experience of irrigation. I think now I know what it involves and that lots of others do it successfully, like you do, my fear is lessening. Thanks.
Take care
Maureen

Hi, I am new to the site, but thought I would respond to your question. I have had malrotation of the bowel all my life. This mainly caused small bowel obstructions. I have had eight abdominal surgeries. Adhesions are the culprit for the obstructions in the small bowel. Last year my large bowel just stopped working due to nerve damage caused by back surgery. I have had problems with my colostomy since. The opening is not very big, even though I have had revisions and they cannot get a scope through it. Because of the nerve damage, I still have a very slow-moving large bowel and a lot of pain due to adhesions and some type of narrowing. The docs are saying that I should get the entire large bowel removed and go with an ileostomy. If your large bowel is already so slow and causing so many problems, I figured the doctors would recommend an ileostomy. Just a thought. I know it is not easy making a decision about this or any type of surgery. I have been struggling with questions about whether to have an ileostomy to replace my colostomy. I hope you are able to be at peace with the decision you have made. I will be praying for you.

Thanks for your reply, Maryland Gal. You have been through a lot. It is not an option for me to have an ileostomy instead of a colostomy. I am going for a CT scan tomorrow to see the results of my last operation. (I had my spleen and gallbladder removed 6 months ago as I have abdominal cancer). I will see my surgeon and stoma nurse at the same appointment to discuss irrigation. I hope I am suitable.
Take care
Maureen

MIld Mannered Super Hero
I went to see a stoma nurse a few months ago and she said I was not suitable for irrigation as when my stoma did work it was diarrhea. However, I kept watching the irrigation video you recommended which is on YouTube so I went to see another stoma nurse. She issued me with the equipment and I have now been irrigating for 3 days. I have stopped taking my laxatives and for the first time in 2 years, my bowel is working.
Thank you so much for recommending that video. Brian is so straightforward about it all. It is amazing; I feel I have my life back. No more blockages.
Maureen x

Your very welcome. So glad it worked for you. It will make a big difference in your quality of life....