Saturday, September 11, 2010


I have been putting a lot of thought lately into what my blog consists of. My blog is not one of these happy, warm and fuzzy, “it’s all going to be okay” blogs. It’s real, I try to not sugar coat things. To me, my blog is where I go to blow off steam when I frustrated with my GP, keep track of my progress whether it be good or bad and hopefully help someone who has the same condition that I do. I remember when I was first diagnosed, I was clueless. I was continually searching on Google and then I ran up upon a GP site and the rest is history.

I have had three doctor appointments over the past two weeks and they have been a lot to take in. I went to my gynecologist and I somewhat filled her in on what has been going on this summer with my GP. By the end of the appointment I had been told I needed to see my gastroenterologist for more than five minutes because since he was spending so much time with colon reconstructive and colon cancer patients he should give me more of his time because I was going to be one of “those” patients. (Not to mention that my father and grandfather had colon cancer.)

As for my gastroenterology appointment, I was a little on edge. We had the gastric pacemaker, the possibility of a feeding tube and my magnesium citrate rituals to discuss. We go back and I step onto the scale, I weighed wearing shoes and two layers of clothes (every little bit helpsJ)… I weighed in at 104.8. At the last appointment I weighed more than that and I was told to gain weight to avoid getting a feeding tube, today I was under that ideal weight. We wait for him to get come into the room but he never does, some other doctor is filling in for him today, he’s busy. I have waited four months to see him. I have been told that we do not share doctors. I frankly don’t care if he’s busy, I’ll wait all day if I have too. I realized when listening to this doctor that I would have to wait another four months to speak to my doctor and that just didn’t go over to well with me, not to mention I didn’t like this doctor’s bedside manner. The only thing I learned at my appointment was that I am dehydrating, my intestines/colon are as bad as my stomach and that two vitamins are enough. Hello?..... one third of my hair is gone!! As we were leaving he came back to stop us and told me that my normal GI doctor was in the office and wanted to see me. THANK GOODNESS!! I spoke with him for about ten minutes about several other things that had been bothering me. When he had told me that I was on the pacemaker list, he gave me the option of going to another hospital for the surgery. I wanted to talk to him about that but it did not seem like the time or place. The pacemaker or feeding tube was not brought up. I left angry and confused.

My last appointment that day was with my neurologist. I have had migraines for several years. Whenever my neurologist found out that my GP was affecting my diet, he wanted to keep a closer check on my migraines. I told him that I have been having an average of two headaches per week. Growing up, I never had headaches or migraines. When the stomach issues started, here came the headaches and migraines. He said that the headaches were from a lack of nutrition. He referred me to a nutritionist. I told him about what was going on with my GP as well as with my GI. He told me that I might want to consider going to the Mayo Clinic. He said he would be willing to do the referral for me. The choice was up to me, the Mayo Clinic or Duke for a second opinion.

So now I am extremely confused. What do I do? I am worried that if I do decide to get a second opinion, I may not be able to continue to see my GI in Winston-Salem. The waiting list at the Mayo Clinic is six months which is a long time but I have a four month wait until my next gastroenterology appointment. What to do… what to do??


  1. Jennifer,
    Boy do I understand what your saying. It is so comfusing going between these doctors. I went to Iowa City, Ia. in July to see Dr. Satish Rao in July, my GI sent me there. He is here from the UK doing research. He is a motility specialist. People come from all over the world to see him, he also has a 6 month wait to see him. He was very direct, but personable. After he gave me an exam and he had already read my reports, he talked with my husband and I and ask us what I expected from him? I really didn't know what to say to him, finally my husband said," well she can't eat anything, only liquids and that makes her sick. And she gets tired after being up and out for only a couple hours and has trouble in the mornings and doesn't have bm's without having a day to have cleanouts, should I go on?" Dr. Rao says, "I can't give her any quality of life back." But then he says that he wants me to come back for a week, from Friday to Friday and have test done. I can give you the list of test he wants me to have done. He told me as soon as I got home to call and set up the week. Well I haven't done it because I can't decide if I am going to do it. The test are very painful and why if he can't improve my life? Plus, you know I live in Va.
    I did google and found that a Dr. at Chapple Hill can do all but one of the test, so why wouldn't I go there, sooooo much closer. But still why? If they aren't going to make me any better. Dr. Rao said he wants to rule out a couple things. And we ask after he ruled out things will he be able to do anything for me, and he said not really, exept if I happened to have a bactera overgrowth or something like that. But won't be able to do anything for the GP or 0% motility in my intestine.
    So why would I go through all those painful test?
    If you come up with a good answer let me

  2. Jennifer,
    Meant to tell you, as you can see in my picture I have always had hair half way down my I have hair just past the bottom of my ears!!!! It just kept falling out. Thank God for my Irish heritage, I had a nice thick head of hair to begin with. First I cut it to my shoulders, then a little more, then once again. Taking the weight off of it has helped.
    I too have a family history of grandfather dieing from colon cancer, and an uncle, and three cousins. And now several cousins that have had surgery on their colons. Not a good sign for a person with the problems like I have.
    I come from a very LARGE family. But no one lives past their late 60's, everyone dies of cancer or heart disease. My mother and father are both alive (thank God) but have no siblings and have had no siblings for a long time. And have had to bury their nieces and nephews. My father has lymphoma cancer, but is in remission.
    Let us know what you decide.