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.


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