Struggling with Life After Colostomy Surgery

Hi all, I'm a 58-year-old male. I was diagnosed with Stage 3 Bowel Cancer in October 2012, and had a fist-sized tumor in the lower bowel which was restricting bowel movements. I was given an ileostomy to bypass the back passage while undergoing radiation and chemo to shrink the tumor prior to operating. When they operated to remove the tumor, the area removed was too large to rejoin the bowel, hence they removed all my backend, reversed the ileostomy, and gave me a full colostomy. I have had nothing but major issues ever since. I pass pebbles anywhere from 2 to 4 days, then I get very bad stomach cramps and everything lets go. My colostomy bag can't hold what follows, so I have to sit on a stool in the bathtub with a plastic bag taped to my stomach for 2-3 hours or stand above the toilet bowl for the same amount of time. The next couple of days I just have no energy whatsoever. This cycle just continues every few days. I have explained this issue to my specialist numerous times; he just tells me that this is normal for some people who go through this surgery. His last advice was to take some lactulose to empty the bowel, then take Metamucil daily, and things should settle into a satisfactory routine. Well, that was done and there was no change whatsoever. I am about at the end of my tether; I cannot continue life like this. Prior to all this, I was a very active person, now I'm a couch potato. I'm not game to leave my home for fear everything will let go. My day begins with a painkiller to ease my aching stomach when I awake in the morning; 30 minutes later my day begins. I sit on the couch watching TV, now and again I wander outside for a cigarette, looking around my yard and garden wishing I could do something, but I can't, so it's back to the couch. Is there anyone else out there that has gone through this that can suggest something that will possibly work to alleviate this issue so I can get back to living a normal life?

Hi there,

Being almost the same age and through a similar operation I hope you don't mind me writing.

I was shocked at reading what you are having to go through.  My tumour was also too close to my rectum that I had to have my rectum permanently and fully removed and also I'm now fitted with a permanent colostomy.  

A there are a couple of things I can think of that may be of help, but before acting on anything I say, please seek professional advice.  I am sure other folk can come up with other suggestions, especially if they have a similar problem as you.

First it sound as if you may have a constriction in your bowel - possibly where your colon comes through your abdomen wall.  The other thing could be you are not drinking enough fluids.  Have you tried using self irrigation? The hospital should be able to help you with this.  Or there may have been a problem with the operation itself that you are unaware of.

It's now been 18 months since your operation - things should have settled down by now.  You really need to seek a second professional opinion, there is definitely something wrong.  Have you asked if there was any complications during your operation that you have not been informed about?  Do you have a Colorectal Nurse you can contact?  Can you press for another CT scan to see if there are any internal complications?  I had to do this over a couple of different issues I was having.

Added to this, the emotions are knocking the stuffings out of all those who have gone through such a life changing major operation.  Lack of being able to work is another killer.  I've been unemployed/unemployable since my last op two years ago and this is what I am finding most difficult.

I hope some of this is of help - Sorry, I'm in the UK and its been 40 years since I wandered around Australia and New Zealand - so can't visit.  Please feel free to send me a direct message - would be happy to correspond.

Wishing you all the best,  Paul

Oh my goodness
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  I also strongly advise you to seek another opinion.....there could possibly be a slightly twisted segment of bowel or maybe another slighter problem in there that can be taken care of....
Do everything you can think of to relax your tummy and all your muscles.....ask your doctor if it's ok for you personally to take a spoonful of codliver oil once a day ( I know some people are already gagging at that idea, lol, but id DOES help some people depending on the circumstance) ....if you like tea, I encourage you to drink DE-caffeinated Green Tea, 3 or 4 cups per day.... eat a softer diet for awhile and no raw veggies for a bit..... chew very well, small amounts at a time...in fact, eat less at a time but more frequently throughout the day....drink a full glass of water before a meal, then after every four or five bites chewed very well take another sip of whatever you're drinking.....'UP' the liquids....soften the diet....also try hard as best you can to get up and force yourself to move around a little bit more....trust me I know how hard this can be sometimes.....but force yourself into a little more movement as this also helps with proper digestion as well as maintaining a healthier body in all other respects as well......

.......and definitely get another professional opinion and keep us posted........

Good luck to you!!  Try best to get your rest and keep your mind occupied with happy things, happy visuals and find things that inspire you regardless of your situation......even those of us who gave up on that idea a few times ourselves, have found ways to find more Inner Peace again
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I know you can too
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~Everybody's Sistah DOE
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