recovery from ileostomy reversal

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recovery from ileostomy reversal

by Carol_jb on Tue Jul 08, 2008 12:00 AM

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I'm new to Cancer Compass, and hope I can get some suggestions from others who have had an ileostomy reversal. I had chemo and radiation for 6 weeks last May/June, rectal resection in September (removal of 2/3 of the rectum), and ileostomy reversal in December. My oncologist told me it would be 6 months to a year to recover "normal" use of my bowels, "normal" being a relative term as I've come to discover. I do have gradual improvement, but it's so slow! I also try to continue with many of the activities I love, but I still have a level of anxiety every time I leave the house and the security of my own bathroom. It's only been 6 months since reversal surgery, so I'm trying to be patient.  Does the feel of urgency ever go away or at least improve? Does the frequency ever level off or decrease to fewer than 5 - 7 times a day? Is radiation proctitis a common problem after radiation treatment?  Is there any treatment for it?  Ant dietary or supplement suggestions? And lastly, is using baby wipes to avoid irritation something that will have to go on for years?. The doctors don't seem to have any answers to these questions...

Carol

RE: recovery from ileostomy reversal

by SurvivorLou on Tue Jul 08, 2008 12:00 AM

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Carol,

I had about half of my rectum removed in 2001.  I know exactly how you feel as far as having the feeling of urgency most of the time.  I had a lot of inflamation from the radiation, chemo, and surgery and it took longer than six months for it to fade (more like a year or two).

Over the years, I found a few things that helped me.  First, be careful with the Lomotil.  It works for a day or two for me, but then I get a terrible rebound for the next few days.  If I can get by with just one or two for a day, then I usually get relief for a couple of days.  Also, I find that I now have a strong gastro-anal reflex after I eat.  I find that it helps me a lot if I just eat two meals a day.  Two meals means less stimulation of the bowels.  Besides the relief of not having to "go" all the time, it helps give time for the inflamation to reduce.

Be careful with what you eat.  For me, onions and beans cause terrible gas.  Things that cause you gas should be avoided.  I can't tell the difference between having gas and really having to "go", so I wind up trying to "go" a lot more than I need to.  Also, I find that taking Metamucil capsules (4) with each meal helps keep the stool more solid which helps with control.

Finally, I have to watch how much fiber I take in each day.  With the inflamation, the fiber causes more stimulation which starts the vicious circle all aver again.

Best wishes,

Lou

RE: recovery from ileostomy reversal

by Carol_jb on Tue Jul 08, 2008 12:00 AM

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On 7/8/2008 SurvivorLou wrote:

Carol,

I had about half of my rectum removed in 2001.  I know exactly how you feel as far as having the feeling of urgency most of the time.  I had a lot of inflamation from the radiation, chemo, and surgery and it took longer than six months for it to fade (more like a year or two).

Over the years, I found a few things that helped me.  First, be careful with the Lomotil.  It works for a day or two for me, but then I get a terrible rebound for the next few days.  If I can get by with just one or two for a day, then I usually get relief for a couple of days.  Also, I find that I now have a strong gastro-anal reflex after I eat.  I find that it helps me a lot if I just eat two meals a day.  Two meals means less stimulation of the bowels.  Besides the relief of not having to "go" all the time, it helps give time for the inflamation to reduce.

Be careful with what you eat.  For me, onions and beans cause terrible gas.  Things that cause you gas should be avoided.  I can't tell the difference between having gas and really having to "go", so I wind up trying to "go" a lot more than I need to.  Also, I find that taking Metamucil capsules (4) with each meal helps keep the stool more solid which helps with control.

Finally, I have to watch how much fiber I take in each day.  With the inflamation, the fiber causes more stimulation which starts the vicious circle all aver again.

Best wishes,

Lou


Lou, thank you so much for the feedback. You've had several years living  with this, so I appreciate learning from your experience. 

 Carol     

RE: recovery from ileostomy reversal

by Jillpls on Sun Jul 20, 2008 12:00 AM

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HI,

I had the takedown last June 2007, and I was able to dance every dance at my  daughters wedding in July 07.  I took immodium and I still do usually about once or twice a week.  Try to eat rice and also some probotic pills.  They helped to heal the rectum.  

RE: recovery from ileostomy reversal

by Carol_jb on Mon Jul 28, 2008 12:00 AM

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On 7/20/2008 Jillpls wrote:

HI,

I had the takedown last June 2007, and I was able to dance every dance at my  daughters wedding in July 07.  I took immodium and I still do usually about once or twice a week.  Try to eat rice and also some probotic pills.  They helped to heal the rectum.  


I tried your suggestion about eating rice, and amazing changes are happening. I eat one bowl of rice every evening along with 6 Pringles (the Pringles were another suggestion I saw on the Message Board). The frequency as well as urgency have both improved to the point where I no longer take Imodium. I bought some Probiotic capsules today. My DO suggested that I get the kind that is not derived from milk and contains no gluten. She also suggested taking l-Glutamine in conjunction with the Probiotics. I start the regimen tomorrow. Things are looking up, finally! Thanks so much for your help.

Carol

 

RE: recovery from ileostomy reversal

by Journeyback on Thu Aug 28, 2008 12:00 AM

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Hi Carol

I am one month into my iliostomy reversal.  It was unpleasant at first with lots of urgent runs to the bathroom, diharrea, burning anus...and it was unpredictable.  So, like most people with reversals, I stayed close to home and security of its big white throne.

 But, as time passed my bowels began to develop pouching abilities again. During this month I have gone from over a dozen trips a day between 6 and 10 trip. (I  was having about 6 movements a day  and there were Many times, there when I would make the quick trot and learn that it was  Much Ado About Nothing). And, now at the end of the first month , I seem to have about 4 meaningful movements a day and a couple of insignificant ones.  There are also, no more night time trips.

 The reversal is on track for me, and I now enjoy being able to go out for dinner in restaurants, and to go the theatre, and feel comfortable about these excursions.

 I had to wear adult diapers for a while to avoid soiling bedsbeets and undergarmets. But, that is no longe rnecessary.

 I suffered from the infamous, "Ring of fire" syndrome for a long time.That wasn't nice and it seems to have been related to the amount of acid which I was passing with loose movements. I have been recently tinkering with my diet. The first two weeks, were cautionary times, and I avoided a lot of foods.  I am now able to eat anything I want without problem.  I took a psyllium pill the other day and am focusing on bulking my stools. This contributes, I expect, to a recent reduction in my number of eliminations.

 A home care nurse told me that most people return to a pretty much normal life within a couple of months time.  I don't know how much of the colon they removed from me. I expect that there is a relationship between that and the success of one's recovery. .But, my sister in law had yards removed due to major surgery and over the years she has been able to adjust her lifestyle and develop enough pouching abilities to be able to have  an active social life, and to travel away from home.  So...I live wth hope.

I look forward to a successful reversal, and returning to my familiar lifestyle.

Win

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