Ileostomy Planned based on Motility study done while I was impacted?

[JCatGuy1]

I've had severe constipation for a couple years now and after trying everything RX/OTC/Mineral oil retention w/Tap water enemas...many ER visits and hospital stays...I went to hospital 4 months ago (again) and they did SCINTIGRAPHY MOTILITY TESTING and after the 4th day, radioactive isotope was still between Cecum and Transverse colon.  RESULT:
"Severe Global Colonic Inertia".   On the 4th night (after test ended) they did or tried to clean me out w/pulsed irrigation and all kinds of meds w/mineral oil every 4 hours.  I did get some ROCK HARD stools and felt better on right side.  For some reason, next morning they extende d SCINTIGRAPHY TEST (nuclear medicine MD said "he just had to know) and afterwards he said, "guess where you're at now"?  I told I don't know.  He wouldn't tell me though.
   Bottom line, was that most people by 48 hours it's usually at rectum ready for evacuation.
   Mine was just coming between Cecum to Transverse, 1.0 and 72 hours, 1.4 and from then on in, 'RETAINED ACTIVITY" constantly!

THE TEST WAS DONE WHILE I WAS STILL IMPACTED THOUGH!

Now every GI and now 2 surgeon's look at results and don't even exam me and say "SURGERY".  FIne...but I forgot about the fact, I wasn't disimpacted before they did test.

So I wrote to my surgeon and asked if that may confound the test result which you are basing surgery on me.  He said, "YES but you have no choice".  I don't understand that answer?

Shouldn't the answer be, since he said "YES" that he might've said:
1.  To be sure, we should disimpact you now and run Scintigraphy Motility again (to see what your geometric center of activity is under normal conditions).
2.  Finally, Perhaps, if I'm disimpacted...perhaps CYTOTEC and this new DRUG "RELISTOR" migth help me.

My other question is that I've scoured the internet to see what SURGERY's do they do for people w/SEVERE GLOBAL COLONIC INERTIA" can't found the surgery he's planning to do.
He wants to do "Ileostomy" full open surgery.  And leave my colon in.  I said, but it's my right side of colon which is killing me which is where pain is mostly, as well as rectum/sigmoid as  I also have severist of hemmorhoids, internal and external.  I can't even pass gas most of the timeand if do...it puffs outward.
    Anyway, I want to be sure and he doesn't respond to emails or phone calls and the time he did it was, one word answer and very short (no bedside manner).  Yet, his creditials are like the best surgeon of year and so on.
Anyway, he wants to do this ASAP probably due to my weight loss as it hurts when I eat, but I feel it hurts cause I"m so impacted.

But mostly, I cannot find where it says that Ileostomy is treatment for COLONIC INERTIA, and thhen 2-6 months later, he wants to, do full colectomy (remove entire colon) but promised if he saw impacted stool, he would remove it...first he said he'd remove the stool, then he wrote back and said, "cut out portion of impacted or necrotic stool".
    But, he warned me, I'm liable to have just as much pain as before and surgery doesn't always help and I called a former GI SURGEON and he told me that he stopped doing surgery's on those w/Colonic Inertia because only 13% were successful?
    So I'm terrified.  Absollutely terrified.
    Bad enough to have a life changing painful surgery...but, to add to this, there's no guarantee it will help me and it will leave me w/this unchangable surgery.  

     Sorry for the wordyness...but, I'm flipping out...just in my 40's and i already have severe ArBone Disease (necrotic hips) and Urine retention....and, it appears I'd have to go back to FOLEY catheter, if I have surgery, cause I need to do some tricks (squatting, tapping bladder, pressing lower belly, to urinate) and self catherization, never worked for me.  All I remember is al the infections and blockages from FOLEY and to have a ILEOSTOMY then TOTAL COLECTOMY, w/all those same possible problems, all for a surgery which is based on a test that was done WHILE IMPACTED and also, doesn't seem to be indicated for "COLONIC INERTIA" (unless I'm wrong) and so I WRITE and HOPE and PRAY I can geet some some good advice or help!!!!!!!!!!!

Should've written early have to schedule by tomorrow but just found this website.  JCATGUY1

[JCatGuy1]

Thank you Aryi,
   Well, I am not 100% sure...that's 4 sure.  However, due to the severity of inability to move my bowels...after going through the fiber, fluids, exercise, motility meds RX and OTC meds, enemas, miralax, golytlely, I basically have run out of options.
    On the other hand, I can't seem to understand his reply to my question and yet, he claimed to be top in the field, all the accolades, years of service to a well known nyc hosptal where he's Chief Surgeon.
    My insurance is lousy (the worst-city/federal) and yet, he accepted me, perhaps looking at me (lot's of weight loss, eventually the pain of eating and not eliminating caused me to eat like a pigeon...and even still, there's pain...perhaps he views it as "life or death".
   With all that said, "I still find it odd not to re-run the test which he admitted was confounded because I was impacted at the time of testing and not disimpacted first."  
    Therefore, the reply, "Yes, the test may have be inaccurate" ..."but you have not choice" leaves wanting to ask, "well then would it be prudent to disimpact me now, re-run the 4 day test" and take it from there?
     Now he's been doing this over 30 something years and he said, "you don't look too good, although he didn't do any physical examination or personal testing", but I look "bad-super skinny and at 6 feet, it shows.

    So, it's a terrible predictament.  Some have suggested, just listen to Surgeon, others have said what you said...and ultimately, I have to find out for myself.  Now, on top of everything...I just caught a flu, at mininum and am even weaker.

    I appreciate your help and your suggestions; and I thank you.
                                J

[ayri]

hello, i would seriously consider postponing any surgery for a little while anyway, the only time surgery should be considered, is when the patient is absolutely 100% sure of what procedure is taking place or that its immediate life-threatning, you should demand that every question you have is clearly answered, after all its your body not the surgeons. one alternative to surgery is a complete change of diet, remember the best healer for your body is your own body, try some of the alternative treatment for your condition with sherry brescia, look her up on the net, cheers.