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Iliostomy plus colostomy

Posted: Mon Sep 21, 2009 11:45 am
  I have three outlets in my stoma. One is an iliostomy that is VERY liqued unless I take immodium or something to slow down my gut.  The second is what they call a mucous colostomy that for the most part just has clear mucous but from time to time has stool.  The third is a tiny colostomy outlet that backs up and has resulted in three or four ilius situations.  The stool that comes from there is large, very firm and dry.

Most of the back ups seem to come after I've had a surgery or some procedure where anesthesia and pain meds are needed.  My poor gut is either too fast or too slow, so I drink lots of water, avoid popcorn, mushrooms, peanut butter, tomato skins, etc.  and use both stool softeners, and stool firmer-uppers (Immodium) but worry and wonder what the result will be.  Sort of a crap-shoot.  (Pardon the pun.)

My surgeon who is Chinese, used to prescribe tincture of opium for me.  It is a liquid that you can titrate, (take drop by drop) to slow down your gut and firm up the ilious output and help you avoid dehydration.  It is an old med that is very inexpensive to make, but Medicare no longer covers it at all and if you can still find a pharmacy that dispenses it, it costs $400 for four ounces.  (Codeine is a an opium based drug that also slows down the gut, but you can't adjust the dosage.)

I've been fighting Ovarian cancer for three years, and must admit that coping with the ostomies, the chemo, a kidney complication and the surgeries has been a real chore.  What I have found however is courage, endurance, faith, and the knowledge of how much I am loved by friends and family and God.  What more can you ask from a life?
Posted: Mon Sep 21, 2009 6:12 pm
my doc prescribed this to me.  I pick it up tomorrow.  I have a prescription plan so hopefully it won't be too expensive!!  Does it work to slow down your bowels??  Nothing else I've tried has worked.  I also have 1 iliostomy and 1 mucas fistula, and was diagnosed with cervical cancer three yrs ago.  Been thru the chemo,!  we have ALOT in common!  Nice to know we're not alone!
Posted: Mon Sep 21, 2009 9:17 pm
Janice, thanks for responding to my post.....Are the children in your photo all grown up now or still young.  I have sympathy for young parents who are fighting must make it even worse.  You didn't say which med your dr. had prescribed.
Posted: Tue Sep 22, 2009 12:25 am
Have you tried Lomotle?  It will slow down your intestine.  Been around for a long time and Medi-care will supply it.  Lomotle is also narcotic drug, however it has an inhibitor in it that limits the drug effects.
I have to use it daily, if I don't I can't get away from the tiolet. Now days I am a J poucher.  I have tried all kinds of fiber additives to get any kind of stool at all, nothing seems to work execpt the Lomotle.

Posted: Tue Sep 22, 2009 12:27 am
I am sorry I forgot to mention.  When i went on Lomotle, it took 10 days of the maximun dosage before it kicked in.  I didn't think it was going to work.  If you try it and it does not give the desired effect you want, give it several days.

Posted: Tue Sep 22, 2009 7:13 am
Yes Pete, I was on lomotil, immodium, & cholestromine powder all AT THE SAME TIME! It did nothing!

Sierragoldi, the children in my photo are my grandchildren. The med my doc prescribes was the tincture of opium you were speaking about. Did that work for you?  Was it addictive?
Posted: Mon Sep 28, 2009 9:15 am
When I first tried the tincture of opium, I put several drops in my mouth and soon my lips turned numb.....funny.  I didn't ever feel addicted to it, and it seemed to help within I was addicted to the good results!   Hope this is working for you, and that perhaps we can turn things around with insurance coverage for people like us who really need it.  

I wrote something the other day I'd like to share with you all.  It's about Ovarian Cancer, but for me that's how all this osotomy adventure began.  Read on.

Ovarian Cancer is one of the most deadly of women's cancers. Each year, approximately 21,500 women will be diagnosed with ovarian cancer. In 2008, approximately 15,500 women will die in the United States from ovarian cancer. Many women don't seek help until the disease has begun to spread, but if detected at its earliest stage, the five-year survival rate is more than 93%. Recent research suggests that together the four symptoms of: bloating, pelvic or abdominal pain, difficulty eating or feeling full quickly and urinary urgency or frequency may be associated with ovarian cancer.

Hi there!
September is almost over, Ive had another birthday, and celebrated my third year of fighting ovarian cancer in August.  When I was first diagnosed in 2006 we asked the doctor what my life expectancy might be.  He said Youll probably have two yearsbut not five.  

However, what Ive found in the past three years is that my life expectancy is not just about time.

Ive written before about courage, but now I am in the school of endurance.  Fighting cancer is ingrained in my very bones now.  Each moment that I cope with the grief that cancer brings my resolve grows stronger.  Each time I go for treatment I squint my eyes, grit my teeth and hold on tightly to Genes strong arm.  I have pain, I throw up, I submit to endless needles, and overwhelming exhaustion.  And my resolve grows deeper.  

This drive to fight the cancer has nothing to do with desperation, or with a fear of dying.  Believe me when I say that death would be a welcome relief for me much of the time.  

I just want to add my spirit of endurance to those who need it.  To be the voice on the phone that gives encouragement, to show up at the grocery store, the post office, and at church to be a presence against the ravages of this horrid disease.  Im still here.  

I know that cancer will not win because I have already won what is most important in life.  I know that I am loved deeply and enduringly by God, by my family and by my many friends.  I know that endurance is who I am because of my faith.  I know that God has had a plan for my life, and the cancer has taught me to say Yes to that plan on a daily basis.  My life expectancy is timeless, calm, strong, and whole.  

Recently, a good friend said, We pray every day for your healing.
Thanks, I replied, its working! I may not be cured, but I am healed.
Love, Kay
Posted: Mon Sep 28, 2009 12:43 pm
I still haven't received it yet goldie!  Pharm says only 3 places in the entire country carry it!
Posted: Sun Oct 04, 2009 8:22 pm
my heart goes out to you and every body else who suffers anything like you do i couldnt  even start to give you any advice on medication but what i would like to say is the one i tell my self every day is......yesterday is is a gift.....tomorrow is a mystery so good luck.. take care god bless
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