New Here, Having Trouble With Ileostomy Reversal

Hi I'm new to this site.  I was diagnosed with a rectal tumor Stage I in February 2007.  Surgery was performed in March 2007 with no radiation prior to it.  I had a temporary colostomy which was reversed in June 2007and I was told no chemo was required.  Since the reversal I've had a lot of problems.  I had a lot of trouble trying to have a bm and only small pieces came out with very much pain.  I went to see a gastro doc for an exam and he said the opening is very very small due to scar tissue from all the stitches which were only about 1/2 inch inside.  They recommended having diliations performed every couple of weeks to try and enlarge the opening.  Not much success .  I am now incontinent and have almost no control over bm's or gas exiting.  I can only have a bm while laying down flat at night usually while asleep.  It's like it opens the door.  It's been 3 months now since the reversal.  The pain and pressure are unbelievable. I also pass a lot of fluid when there is gas expelling.  I never know what will come out.  I'm not sure what to do from here.  I'm looking for someone that's had this surgery or this problem and can give me some help on what to do.  Will this ever get better or am I looking at permanent incontinence?  Any help would be appreciated.  I'm also experiencing a great amount of gas and never had this problem before.  

Hi Jack,

Have you tried posting at www.ostomyland.com ? You may find some infos there. I know there are posters there with rectal ca.

My husband has stage 4 colon ca, but it is located higher (in the sigmoid).

Hello,

I too am new to this site, though I was diagnosed with Stage III/2 rectal cancer in May 2005.  I had 6 weeks 24/7 chemo on a pump plus 6 weeks 5xweek radiation to shrink the tumour as it was very close to the anal verge and in more than three lymph nodes.  Developed every possible complication, including radiation proctitis, klebsiellla septicemia (from the feeding tube in my port), MRSA, but despite this, finished the radiation as I had heard that stopping the radiation prematurely  could make your prognosis worse.  Had the full mesorectal excision and anterior resection end August 2005 with an ileostomy, six weeks recuperation, and then 6 rounds of FOLFAX (oxaliplatin, leukovorin & 5FU) over 14 weeks.  I had my ileostomy reversal in late April 2006.  It took my system a week before it was stable enough to release me from hospital, and I was going to the toilet up to 30 times a day for the first month (I would sleep on an airmattress on the floor of the bathroom).  But, I did go to Alaska with my two children and my husband in late June (wore Depends on the plane) and was able to go hiking (don't hike in Depends - they chafe).  By the end of the year, I was able to rely just on a pad, and my BMs had slowed to anywhere from 2-20 a day.  The unpredictablility is the worst.  I can eat most everything now, though I have regretfully concluded that legumes (black & white beans & lentils in particular) and brussel sprouts or cabbages, are NOT recommended.  I have terrible gas and still have days when my bms are small and multiple.  At the advice of my surgeon, I take metamucil caplets (2 in the morning) and that seems to help somewhat and I tend to take 2 lomotil at night if I have been having difficulties.  Night is definitely worst - I have not had an uninterrupted night sleep since this all began.  But, IT DOES GET BETTER.  I am back to teaching (substitute) - and have learned how to either control or disguise the large gas eruptions (in a middle school, much cause for hilarity), usually can tell when it is going to be gas or when it is liquid, know that if I have more than two glasses of wine at night, I may well have bowel incontinence later that night.  But I am alive and am doing almost everything I did before I was diagnosed. 

hi

my name is chelsea and I had a head on collision when I was 15.  I am now 17.  I had internal bleeding which resulted in exploratory surgery and a colostomy for two months.  I had it reversed. But, ever since then I have had severe pains and uncountable problems.  I have been to the doctor about it too many times to count.  I have tried everything to help it.  I believe the best thing that eases it is eating small meals, that are low in fat and not greasy or spicy.  And drink LOTS of water.  I hope it might help you.  tell me if you try it how it goes.