Living With Post-surgery Complications: Seeking Advice

atlarge

Oct 16, 2013 3:34 pm

     I had cancer of the rectum and they removed my rectum. I lived with a ileostomey for 3months and then a reversal. Since then I have had all kinds of problems with my bowel. Constant leakage, irritations, and multiple bms. My latest problem is that a fistule has occurred between my prostate and my bowel. Is there any relief from this constant problems associated with this problem? I am of the firm belief that I should have rejected the operation on the cancer and lived and died with it. What say you?<

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Ewesful

Oct 17, 2013 12:18 am

It sure seems like either the reversal did not take or it is not working unless of course something else is askew -- Personally I am very pleased with the permanent ileostomy -- I had no choice but I am glad I didn't because just what you are experiencing plus the chances of more cancer--- I wish you but I would not let this run your life - there has to be a answer-- the best to you.

As for the cancer -- no you do not let it run your life either especially when there are good options ---can you have a permanent ileostomy now - also adhesions are a messy possibility -- keep the positive thoughts and make sure the medical team hears you....

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Posted by: iMacG5

About seven years ago, just about every aspect of my life was ostomy related. From the moment I was told an ostomy might be needed until some months down the road I existed as a person afflicted with a colostomy. I feared someone other than my immediate family might find out I had a bag. Ugh! What could be worse? Suppose it filled real fast when I was out with no place to hide and take care of myself. God forbid should it leak in church! Suppose I roll over on it in bed. I was a lesser creature, destined to a life of emotional anguish and physical routines different from most of the rest of the world. I felt like a freak. Then I found folks like you guys here, read your stuff, really “listened” to what you had to say and I began looking at things differently. We know perception is everything and I began to understand how good things were relative to what they could’ve been. So many folks had it so much worse than I did. That didn’t make my discomfort go away but it exposed how fortunate I was to be dealing with my stuff and not their’s. I felt a little guilt, maybe selfishness but quickly forgave myself by understanding I just wasn’t smart enough to fix my feelings. Then, I wonder what smarts have to do with feelings. My perception was warped so my perspective toward my existence was warped.
I learned over the last few years with the help of lots of folks right here at MAO that I could be better at living just by accepting some facts. It is what it is and so what? It’s not the worst thing to happen to a person.
I think everything is, in some way, related to everything else. I just put the ostomy thing in the back seat and drive forward.
Respectfully,
Mike

Mrs.A

Oct 17, 2013 1:05 am

I am truly sorry that you are having such a difficult time. I am no expert on reversals and will never be a candidate for one but if I were in your shoes now I would be all over the doctors for answers.
There is no guarantee if you would of rejected the operation that you would be any better off than you are now. I am not fearful of death myself but I believe there is an appointed time for each of us.

I hope your situation gets resolved soon!Hang in there and be as positive as you can, it helps.

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jodelin

Oct 22, 2013 12:49 am

There is nothing easy about any of this.
I had rectal cancer too.  Had many complications trying to heal up an anastomosis leak before they could reverse my ileostomy.  I had to have a flap surgery (to lose part of my stomach muscle to have a blood supply around the rectal area) to heal things up.  I was reversed after 16 months.
It will be 5 months tomorrow and I am still having accidents, more bad days than good days.  Hurts to go normally and hurts to have things run loosely.  Seems like you can't win.  I am on pain medication just for my butt pain.  I can tolerate the pain in the stomach from the missing muscle way more than I can the one in my booty.
I do not have the energy to work out that I did prior to cancer or even prior to reversal.  It takes so much out of you to go to the bathroom all the time.
Mine has improved some since I went to nutritionist.  She gave me probiotics and some enzyme to help my digestive system use the food I am giving it.  So, I can gain some weight.  Until I have a bad day and lose it all.
I have to not eat if I want to do something out of the house extensively.  I did make it through my wedding with a minor accident at the end of the night.  I probably wouldn' t have had that had I not drank beer, but it tasted so good.  And, it helped with my hunger.
But, I hear on this site that it will eventually get better in most cases.  I hope so and I will be optimistic for you too.
Hang in there.  Some days this really blows, but I can still be with my husband and see and hold my grandchildren.  So, I can tolerate the pain/inconvenience.

Be well and strong.
Jody

Living with Post-Surgery Complications: Seeking Advice