Tex need help

[connie]

Hi Tex,
I have continually getting worse even though I am on 9 Entocort and 8 pepto bismo. Went to a herbalogist this morning that I saw two weeks ago. He got on his machine and told me I had colon cancer. He said it is contained to my colon at this point but that I would need surgery to fix it. He gave me the number of a Doctor at a medical wellness clinic and said to tell her it was urgent that I have the blood work done for colon cancer. He gave me some herbs to help calm things down.
When I tried to call I found out the Clinic is closed on Friday. So I guess I wait for them to call me next week. I understand that I am not yet diagnosed but I am very very ill and don't seem to be getting better even though I think I am eating the right food and following the doctors instructions.
My husband is out of town and I am wishing he was here. I know CC does not usually turn into cancer. Any thoughts? Thanks Connie

[JLH]

Connie, please get a second opinion. Why wasn't it diagnosed two weeks ago. He is an herbalogist not a doctor. What magic machine does he have? I'd think you'd need a colonoscopy for a diagnosis........

[JLH]

Call your GI's office and speak to someone.

[JLH]

Also, suspect soy as another possible intolerance. Half of us have it. It was the last (so far) piece of the puzzle for me.

Also check all your vitamins and supplements for your intolerances.


I hope Tex gets here soon to help you.

[MaggieRedwings]

Hi Connie,

That is not good news but I honestly don't feel it came from a good source - he is not a doctor. What in heaven's name kind of machine does he have? Skip the wellness clinic and get to a doctor who deals in this type of thing. MC to my knowledge does not turn into colon cancer.


Please call someone else immediately.

Love, Maggie

[connie]

thanks. I am going to urgent care and see if they will do the test. I'm sure they will think I am nuts. Connie

[barbaranoela]

Connie-----I couldnt believe what this herbalist said to U-----
How could he diagnose U----!!!

Please do get to see an GI ---and skip the Urgent Care--they cannot diagnose this condition either---I hope U got to your ER unit of a hospital!!!

Call a friend or family member to stay with U also!!!

Do let us know how U made out!!

Worried--
Barbara

[JLH]

Good ideas, Barbara.

From about.com

"There are five tests to choose from when performing routine colon cancer screening: stool testing, barium enema, virtual colonoscopy, sigmoidoscopy, and colonoscopy. Each has benefits and drawbacks, so it's best to ask your doctor which is most appropriate for you.

When colon cancer is suspected, a colonoscopy is a good option because it allows your doctor to inspect the entire length of your colon with a little camera. A colonoscope (the instrument used in a colonoscopy) can also be used to biopsy any parts of the colon your doctor thinks may be cancerous."

[tex]

Hi Connie,

I'm sorry that your symptoms seem to be getting worse, but if I recall correctly, you were showing signs of bismuth subsalicylate toxicity, and I suggested that you needed to stop taking the Pepto, and then your doctor virtually ordered you to resume taking it, claiming that only "old people" who are overdosing, have to worry about bismuth toxicity. Your doctor is wrong - anyone can get bismuth subsalicylate toxicity. She is probably referring to a single case study, (available on the web), describing a gentleman who took unknown amounts of the medication, and subsequently developed encephalopathy. That's not the risk I'm concerned about. We've had many members here who have developed neurological symptoms from Pepto, such as balance issues, weakness, dizziness, disorientation, etc., and they developed those symptoms after the first few doses, and most of them were/are not "old". This issue is exactly why Dr. Fine stopped recommending Pepto as a treatment for MC.

Concerning the cancer "diagnosis" by a herbalogist: I have no idea what kind of machine an herbalogist uses to diagnose colon cancer, (or any other type of cancer, for that matter), and anything is possible, I suppose, but I have a hunch that his diagnosis is Maybe I can relieve some of your concerns, by telling you what I have experienced personally, regarding cancer diagnoses.

When my symptoms of MC first began, I would only get sick occasionally, every month or so, and after about a week of major flu-like symptoms, (including D), I would feel mostly normal, for a while. Then I began getting sicker more often, and one day, the D started, and wouldn't stop, no matter what I did, (I tried some of the OTC remedies, including Pepto, but nothing helped - I was having uncontrollable, liquid D, usually almost like dirty water. After a couple of weeks of that, I went to my doctor, (a regular MD, a family practitioner), who examined me, and told that I had colon cancer. He sent me to a GI doc, at the biggest and most prestigious hospital in the area, who also examined me, and told me that I had colon cancer. After giving me every test he could think of, (including blood tests, several types of scans, a sigmoidoscopy, and ending with a colonoscopy), he told me that there was nothing wrong with me. So, both doctors, both well-respected in the medical profession, were wrong. That was about 9 years ago.

When I had emergency abdominal surgery, (which was discussed on this board), in the fall of 2005, a similar thing happened. I started in the ER, where at least 2 or 3 doctors examined me, (I had a blockage), and decided that I had colon cancer. When the surgeons removed a mass from my Sigmoid colon, about 17 cm in length, they were convinced that it was malignant. Subsequent biopsies showed that it was not, however.

So, I have been actually diagnosed with colon cancer, on two separate occasions, in the last 10 years, by at least 5 or 6 highly-competent doctors, and every one of them was wrong, (thank goodness). They were using the best, state-of-the-art equipment and know-how, at the time, and most of them were very experienced in cancer diagnosis, and yet they were all wrong.

What I'm trying to say, is that unless you're passing blood, and you have a history of colon cancer in your family, I wouldn't be the least bit concerned about a cancer diagnosis, until you have a valid reason to be, and a herbalogist, (with all due respect), making a diagnosis based on what his "machine" shows, is certainly not a valid reason, IMO. Even if you're passing blood, I wouldn't be more than ever-so-slightly concerned, even in that case, because I've been there too, (both blood in the stool, and blood in the urine). The blood in the stool was only due to hemorrhoids, and nothing ever came of the traces in the urine - it disappeared in a few weeks.

So please don't worry unnecessarily, it never helps, especially when you've got D already, because of MC. I would suggest that you mention this to your regular doctor, and at least have some blood tests done, to see how much your white cell count is elevated, but be aware that it will be elevated, from the inflammation caused by the MC, so your doctor will have to be aware that MC causes an increased white cell count, and use some judgment, but I believe that colon cancer will normally cause a significantly higher white cell count than MC would cause, though that may not always be the case. There are, of course, many other tests that he can use, to rule out colon cancer, the most reliable, of course, would be a colonoscopy.

How long has it been since you've had a colonoscopy? If you've had one within the last year or two, the odds are very low that they would not have caught any signs of malignancy, or pre-malignancy, when they did the last one.

Obviously, I can't say that there is zero chance that you have cancer, but from what you've told us, I would think that the odds are very low, so I hope that putting all this in perspective, will allow you to relax, and stop worrying about it.

Also, I agree with Joan, if you have not eliminated soy from your diet 100%, it certainly might be the reason why your symptoms are not improving.

And please don't worry about cancer, unless you have a verified reason to worry - worry just makes us old, and gives us gray hair, (or rather, more gray hair. ).

Tex

[JLH]

Or takes gray hair away in my case.........

[connie]

Thank you so much for your responses. I was on driving to the county road when my husband called and after talking to him, I went back home. He is going to try and call an MD he knows.
I came back home and read the posts. Thanks so much for your kindness and support.
I am feeling like I am completely crazy.
Tex, I know you did tell me about the Pepto Bismo problem but just as you said the Doctor was very stern with me and said "get back on it" and she said don't mess with my medication. I have been very weak and shaky. The doctor said it was anxiety. She said my problem was that I thought I could cure myself with my diet.
I am so depleted that I took a short leave from work. I will quit the Pepto Bismo again, maybe since I am back on 9mg of the Entocort I won't get so physically sick. I did get D and horrible pain when I quit the Pepto but I was only on 3mg of Entocort then. I increased the Entocort myself about 1 1/2 weeks ago and the doctor agreed that for now I need to stay on it.
I am not having D and I really have had very little of it for weeks. Mostly the neurological symptoms and lots and lots of pain and swelling in my abdomen. I think the good doctor will be very angry that I have quit the Pepto again.
I will check for soy again, I thought I had gotten rid of it completely.

My colonoscopy was in April so it has only been 7 months. It was normal but the biopsy showed CC. As far as I know there is no family history. My Dad died after suffering horribly for a year but he would not see a doctor so we don't know what he had.

Tex, you have reassured me beyond belief. I cannot thank you enough.
I am okay now, sorry I flew off the handle and acted like an idiot. Love to all of you Connie

[JLH]

No reason to apologize at all. You were told something quite scary. Most of us would have had the very same fears and reactions.

So what is the name of the magical machine? Inquiring minds want to know........

[connie]

Joan, I don't know what kind of machine it is. It is about the size of a briefcase and has a bunch of dials on it. There is a cord with a metal end on it. The patient holds the metal end in their hand and he reads the results. I will see if I can find anything on the internet and will let you know if I find anything.

I had started a post to you and then my husband called me so I didn't get it finished.
I wanted to tell you that I went to the dermitologist yesterday. She said the ferritin blood test is very important in looking at hair loss. She called my doctors office and got a copy of mine. The normal ferritin level for females is 12-150 ng/ml. She said a demitologist wants to see a level of about 75 for hair to grow. Mine is 57. She prescribed an iron pill. (don't know if those mix with MC) Anyway she said it would take about 3 months for the level to come up and probably 6 months before I see any results. I don't know if that is something that will help you or not? I haven't picked up the prescription yet because the pharmacy had to order it.

Thank you so much for your support.
Connie

[teagirl]

There are many sites detailing these machines and why they don't work. No one, especially someone who is not a doctor, should be telling someone they have colon cancer by using such a machine.

http://www.quackwatch.com/01QuackeryRel ... ectro.html

http://www.devicewatch.org/

He may be sincere but he's no doctor.

[connie]

Thanks for providing the websites. The herbalogist was referred by a friend I trust. I feel like an idiot tonight. I guess after months of getting worse instead of better I am grasping at straws. Thank you. Connie