New to Forum: Colonic Inertia Thoughts and Questions

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one willow
New Member

Date Joined Jan 2011
Total Posts : 6
   Posted 1/31/2011 2:55 PM (GMT -6)   
Hello to all!  I am new to the forum, after stumbling upon it when I looked up a question
about the diagnosis of colonic inertia on google this morning.
First, after having read through hundreds of threaded discussions today
regarding symptoms, sufferings, surgeries and such, I want to say how
encouraged I am at the level of knowledge and support that exists
in this format.  Too bad the internet wasn't available to me 20 +
years ago, when I began to have increased problems with severe
Just to give a brief summary of my situation:   I was in my late teens when I had my first
really serious bout of constipation, but I struggled with it during my youth
as well, and my parents just tried to help me by giving me senna and
occasional enemas.  At times I was a very miserable kid/teenager, but I
always managed to work around it.  Nothing was known about this disease
20 years ago, so I was mis-diagnosed and very mis-treated by well-meaning
specialists until I finally diagnosed myself 2 1/2 years ago.  Ironically, and I'm
sure others dealt with this, too, previously I was told to eat a high-fiber diet and learn
to relax.  I figured out after many years of suffering on that diet, that high
fiber was not at all good for my unique situation.  The relaxation skills I learned
were so valuable, however, and I don't know what I'd do without the ability
to truly and deeply relax, after all I've been through.  So... I went through
a series of tests at Mayo, based on my severe constipation history,
and after many tests, manometry, biofeedback, etc., I was 'officially' diagnosed
with colonic inertia.  Finally getting a correct diagnosis and appropriate medical care
was a huge relief, and I'm sure many can realate. 
After being given the option to have a total colectomy or just try to use tap-water
enemas with miralax and see how I got along, I chose to give the enemas
and miralax a go.  This worked
very well for me, for about 1 1/2 years, but then the constipation began to worsen
again very slowly over time.  Based on tests, my upper gi seems normal, (as per
sitz), but when the markers hit my colon they just sat there for days.  Like many
others, I get very distended, have great amounts of foul gas, and when I do
have a bowel movement, it has to be enduced via enemas and it usually takes a
while to get things going.  Hard ball-like stools are produced first, followed by
more normal-looking stools.  At times it can be very difficult, painful, and humiliating.
You know the story...
My thoughts lately are that my gi is more affected by the kinds of foods I eat , than
I once thought.   I notice popcorn, nuts, lettuce and other harder raw vegetables
make my symptoms worse.  Sugary foods seem to make it worse, too.  I read that
sugar really makes peristalsis slow way down, and that this has been studied
medically.  I think wheat flower might be something to aviod a lot, too.
In writing, I am looking for some input from others, because from my personal
experience I can learn a lot from what others have tried that works or doesn't work. 
Can anyone suggest nutrition ideas that might benefit me?  Also, is anyone aware
of any specific nutrients/pro-biotics, etc. that might benefit?  I am taking high
levels of vit. D, as I recently had this tested and mine were very low.
I'm trying to be as pro-active/preventative as I can be, as I'd like to postpone
surgery for as long as I can. 
I'm also wondering about
laxatives that might be better tolerated.  I have a great doctor that I trust now,
thankfully, and at the same time, I value learning from others in the trenches, too.
If you have any knowledge of other sites or resources that might be of interest, I would appreciate
your suggestions.
Thank you,
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