#1
From: shali9 (shali9@icdc.com)
Mon Aug 20 23:16:38 2001
Okay, here is my history. I have revamped a letter I mailed to a doctor
before any diagnosis, so disregard the questions at the end as far as
answering it right now. However, it is still my main question. I'll be
sending in 4 emails so wait until you get all of them before replying cuz my
current questions are in that email.
I have been [deathly] sick for 8 years even though I have made progress on
my own. It started with massive amounts of gas and bloating for a couple of
years and in 1993 I began losing a pound per month. By January 1994, I had
intolerable distention, not to mention all the classic symptoms of ‘yeast.’
I am 46 years old, 5’3" and 110 pounds. I was 119 lbs prior to getting sick
with a total weight loss at the time of 14 pounds or so over the course of
that year.
In January 1994, I went to Mayo Clinic [Scottsdale] where they did a
colonoscopy and said nothing was wrong. I then started a natural course of
action. I’ve been on an indescribable amount of products per capsule; costs
that exceeded $500 per month for an extended period of time [as in years].
In March of 1995, I went to Loma Linda University where they did an
endoscopy and small bowel series. The most I was diagnosed with was
gastritis but was told again, nothing was wrong.
By 1996, the bowel totally shut down and I couldn’t move anything out. Even
prior to this, it was getting impossible to move the bowels. I had all the
classic symptoms; fatigue, memory loss, lack of concentration, feeling of
collapse, etc. I was totally toxic to the point of 'drunk'. No I dont drink
but I was intoxicated for sure! I was forced into colon cleansing; namely
colemas using 10 gallons of water twice per day. I could not keep up with
the amount of waste that had accumulated and continued to accumulate because
of the lack of digestion. I was helped by colon therapists who had the same
extent of the problem years prior. The amount of negative material I removed
was extensive and took a total of two years to remove the majority of it. I
have done eight liver flushes in which a lot of chaffe was removed along
with some stones. I was deathly ill. I fought to save my life with energy I
didn't have. I had to quit my job, and mom came to do household chores while
I was in bed. After so many years, my fiance, who was extremely supportive,
split up with me because he couldn't do the illness anymore.
In September of 1998, my acupuncturist said I needed a doctor as she felt a
mass in the pelvic area. It ended up to be the size of a cantaloupe on the
left ovary with a small invasion - so small, the doctor was not satisfied
with his diagnosis of borderline and sent the frozen section to Harvard
where it came back with small invasion - not enough to warrant chemo and
have had no signs of cancer since, on my CA-125 tests. This is when my
fiance decided to let me know we were done - two days before surgery. I was
still sick. I questioned the doctor THEN on adhesions but he said I didn’t
have adhesions because I didn’t have nausea [I didn’t have nausea because I
was doing colonics and keeping the bowel moving as much as possible!]. DUH.
In June AND September of 2000, I was in emergency surgery for adhesions. The
June surgery was in Phoenix, Arizona where 4" of ileum was also removed due
to strangulation. The September surgery was in New Jersey and they claimed
Phoenix didn't address any of it except for the 4" section. Again, I was
discharged to be left with the same symptoms. I have been carrying around my
barium enema xrays of 1998 [taken prior to the pelvic mass surgery] but no
one would acknowledge the problem as even I can see the [structural] problem
on these xrays.
[NOTE: Reason for relocation: After I got my own place, I was IMing with an
acquaintance in GA I met on a list serve years before for intestinal
cleansing. He wanted to help me and he was working with someone who ALSO
wanted to help me on another level. So I talked to this person and we kept
the issue at hand but knew we were fond of each other. It was something that
indeed, just happened - clicked. IM's, along with phone calls increased and
after a year, he flew out to AZ so we could meet, knowing we would end up
together. So we made plans and by the time 6 more months went by had
everything in place for him to fly out and drive us back as he felt he could
help me and that we were meant to be together. He was only in GA for 6
months to work with his friend, but was born and raised in the same state I
was which is NJ which is where we are now]
I have seen other doctors [gastroenterologists] in the course of the years
and had other testing such as a digestive marker test in 1999 [shortly after
the pelvic mass surgery], CAT and MRI scans in 2000. I would have to look at
the test again, but on the digestive marker test, I remember 11 of the 21
markers released the next day [was doing colemas] and there was one that was
stuck for a few days on the right side and released on the sixth day. This
is the area I have the most trouble with.
A couple of naturopaths here definitely see the problem and one of them
referred me to a colo-rectal surgeon. However, upon consulting with this
surgeon, HE saw nothing wrong.
I finally found another colo-rectal surgeon [recommended by another
naturopath] that viewed the ’98 xrays and said my colon was not normal;
FINALLY! however he wanted current testing. Looking at those xrays, he is
in a quandary whether there is a problem in the sigmoid colon and/or a cecal
volvulus. The sigmoid definitely shows problems on this xray and I'm sure
the pelvic mass was the cause of it as it was smashing it up against my hip
bone and it is looped, flattened and narrowed. However, my problems occurred
before the pelvic mass appeared and I have had much trouble in the hepatic
flexure area and the section before this particular area. The SOUND of gas
being expelled thru colonics is definitely demonstrative of it being
restricted not to mention trouble with getting waste past a certain point.
There is ballooning/dilation over in the ascending/transverse area. He
recently ordered a Virtual Colonoscopy upon our request. It took all I had
to have this test done as the doctor wanted a barium enema and my fiance
asked him about the Virtual because of my intolerance to testing due to
colonic pressure. The doctor was not familiar with this test, therefore, not
sure if the test would give him the information he needed so we asked him to
call radiology and find out [talk about doing their JOB!]. Radiology said it
would. Unfortunately for me AGAIN, the script from the doctor to radiology
stated Dx: obstruction. Therefore, the radiology report SAYS no obstruction
and the doctor doesn’t know how to read the xrays because he isnt familiar
with a virtual colonoscopy!!! All that needed to be done is write Dx: cecal
volvulus. Something this simple can screw you over and you dont even know it
unless you are 150% involved in their inadequacies. There is no excuse for
this. Oh sorry, almost forgot there was and thats to keep spending our money
on other tests.
Upon researching, many websites implicitly state the Virtual Colonoscopy
will reach the cecum, one of which is Boston University Medical Center; ‘. .
. it includes the ability to examine the entire colon from rectum to cecum
when conventional colonoscopy failed; which is in line with Oncology News
International which states ‘Virtual Colonoscopy always reaches the cecum.’
Now this doctor wanted to do a conventional colonoscopy. My body tells me
there is no way it is going to tolerate any more pressure than it already
has in it. The medical establishment's own reference materials tell them
these tests are contraindicated in patients like me! I dont NEED a book to
tell ME that! Have my own book - called my body. When the colon is fully
distended, a test using NO air would be impossible. It is always in a state
of dilation. I would only be able to MAYBE undertake this test on a less
distended day but that would involve scheduling and cancelling appointments,
as I do not know how much distention there will be until immediately after a
colonic and I do not last long, regardless. If I dont want to explode, I
have to do colonics.
My symptoms are of a definite obstructive and explosive nature, inability to
digest vegetables, paralyzation, bloating/distention, impactions. There is
also a feeling of perforation at times and as the day goes on, the pressure
increases. I also never feel ‘normal’ after removing waste matter after
colema treatments. I have been able to reduce a lot of inflammation with the
intake of Ambrotose to decrease nitric oxide, and also Ellagic Acid which
seemed to be at least half effective, thanks to my fiance who came across
this connection a couple of months ago while searching the net in an effort
to help me. I also could never pinpoint why I would go through many days -
sometimes over a week of being blocked with the inability to gain relief
even with colon irrigation and then all of a sudden massive amounts of
impacted fecal material moves out with the colemas which takes about a total
of 2 days, 5-6 colemas to remove all that is coming. I am having to do these
4 times per day, every 4 hours or so because of the pressure in the system
[10 gallons each time]. I am in major discomfort between therapies. Gas is
definitely trapped and the structure [colon] feels stationary.
I HAVE BEEN UNABLE TO PASS GAS OR FECAL MATERIAL NOW FOR 5 YEARS WITHOUT THE
USE OF COLONICS, which I am having to do many times per day due to constant
colonic pressure. I am taking a limited amount of supplements at this time.
I’ve pretty much given up on ridiculous amounts of supplements; money doesn’
t grow on trees! Looking at the hepatic flexure area on the Virtual
Colonscopy, there is a definite ‘fold’ as a couple of inches of the
transverse ‘lays’ on top of the ascending colon. It seems the bulkier the
food, the more trouble it has passing through, but I have trouble with ALL
food.
That is my history but my real concern has to do with the way in which a
surgery is performed based on the fact there is no function and that is: If
a Cecal Volvulus [or any structural problem that requires a resection] is
found and the surgery of choice is a resection, I have had no function for 5
years. What are the chances it is going to resolve after addressing the
problem? Because this time, with surgery on the colon, I will not be able to
relieve myself with colonics for at least 6 weeks. Is a resection a mistake
in this situation? If a resection was done yesterday, am I going to be
laying in a hospital bed with dilation because the stationary section is
actually a pseudo-obstruction, not being able to even relieve myself this
time? Because the other option would be a total colectomy and my fiance is
convinced there is an answer to this dilemma without going this route. I, on
the other hand, want my life back at whatever the cost.
I need to know if this option [resection] is smart or if I am making a
mistake and should decide on the other option [colectomy] under the
circumstances. It is imperative I find this out if at all possible and I don
’t know who would have the answer as how many people would have really
experienced no diagnosis for so long that included the shut down of the
bowel for such a long period of time, only to face a surgery like this
forced into colonic irrigation? While a colectomy may be a procedure that
some believe are [too] drastic, I am after complete resolution, a full life,
and being independent of colonic irrigation or anything that would impair or
withhold me from normal everyday functions, such as employment or travel in
a case of a family emergency. This is a must. What I don’t want is to
continue to work on something that cannot be resolved or would take too long
a period of time to resolve nor continually tolerate the symptoms that go
with it as I am passed the tolerance point. I am unable to travel and have
seen enough doctors and been through enough tests.
Shali
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