Colonoscopy and an I don't Know diagnosis

kitty16 · Post by **kitty16** » Mon May 21, 2012 4:07 am

Thank you all so much for you kindness I'm so blessed to have found this site.

I'm still a little upset by his attitude towards me. It was almost like he wanted me to not come back. Like he does not know what to do for me so maybe if he is rude I will not be his problem anymore. I also freaked because I'm off all meds and don't know how I will do during my day without any help.

I'm going to go for the other tests he has ordered, cat scan, upper GI, because I will probably need them anyway, and go to my next appointment to find out the results of the biopsy, and then I will seek another GI.

I'm going to post the rest of this again under a new topic after I have been on the meds awhile. I went to my PCP, she is very good, I asked her again what I have been asking the GI from day one could my gallstones have anything to do with the diarrhea, I have looked up a thing called Habba Syndrome. You can have HABBA syndrome and other IBD together, She is going to put me on Questran said it can't hurt and if it helps .......she also ordered a HIDA scan.

Oh and for all who asked I live in Queens, New York right near JFK airport

Thank you, Bless you one and all may we all have a great day.
Hugs,
K

Thank you all

MaggieRedwings · Post by **MaggieRedwings** » Mon May 21, 2012 5:32 am

Hi Kitty,

Can hear the despair in your initial post but your last sounds a bit more uplifting. I can only reiterate what others have said and that is diet is really the most important thing with this disease. Over the course of the years with this disease - 12+ - I have tried all of the meds and now take none - nothing worked for me. I still have some really bad days and this weekend was one of the worst. Things will get better and please rely on this board and all of us when you are down.

Love, Maggie

JFR · Post by **JFR** » Mon May 21, 2012 6:42 am

kitty16 wrote:

I'm still a little upset by his attitude towards me. It was almost like he wanted me to not come back. Like he does not know what to do for me so maybe if he is rude I will not be his problem anymore. I also freaked because I'm off all meds and don't know how I will do during my day without any help.

Kitty,

I have had this experience with doctors. I have often thought that if doctors could just learn how to graciously and compassionately tell patients that they are very sorry but they don't know what's wrong with them or what to do about it, then at least the experience of having no diagnosis and no treatment would not be compounded by the unpleasantness of being treated rudely by the doctor and dismissed, as if it were all the patient's fault that he or she were sick.

Several years ago I developed a new attitude that I try to bring to doctors' appointments. I will expect nothing, be pleasantly surprised if they have something of value to offer and will not take personally any rude or dismissive treatment, just chock it up to the doctors' personality defects not mine. Granted this is hard to do when you are really sick and looking for answers but it does seem to help me negotiate the often imperfect world of medicine. One of the side benefits of this attitude is that it makes me much more proactive in figuring things out for myself, like finding this great site chock full of useful info and not an unpleasant word to be found.

Jean

Post by **tex** » Mon May 21, 2012 8:33 am

with Jean. Most specialists seem to have a huge ego that appears to destroy their ability to feel compassion.

Kitty,

I'm not sure if the GI specialist listed below is knowledgeable about the importance of diet in treating MC, but he is a lot more compassionate than the doctor that you have been dealing with, and he will listen to what you have to say.

Dr. Mark Chapman
The Mount Sinai Medical Center
New York City, NY
(212)861-2000

http://www.mountsinaihospital.org/profi ... -l-chapman

Hugs,
Tex

Joefnh · Post by **Joefnh** » Mon May 21, 2012 12:04 pm

Kitty I forgot to mention earlier that an upper GI series is probably a good idea as Crohns often presents in the small bowel. In my case, similar to yours, they had found MC in the colon and then a small amount of Crohns in the last part of the small bowel (terminal ilium) but at the time the Entocort while it helped some did not provide the full relief that was expected.

I had a hard time with my first GI doc getting the Entocort prescribed, my PCP had to call it in. It was not until after a small bowel series and a pill camera that the second GI doc found the Crohns in the middle part of my small intestine (jejunum). This is why I needed to take the Imuran as the Entocort only addressed the MC not the Crohns given its location. The Entocort only treats the last part of the small intestine and the colon. During a colonoscopy they can only see the colon and the last few inches of the small intestine which would not detect Crohns in the other areas of the small intestine.

As you are finding little relief with the Entocort and modest dosage of prednisone it may very well be that your Crohns may have involvement in the small intestine. Typically depending on weight, dosages of prednisone may be up to 60mg per day to treat active Crohns. Hopefully though by addressing diet now, you can minimize the need for meds.

Take care

kitty16 · Post by **kitty16** » Mon May 21, 2012 3:40 pm

Thank you

Tex Mt sinai is a great hospital I will keep the name.

Joe thank you for your explanation Im going for the upper gi small bowel follow through tomorrow. I was almost going to cancel it til I read what you said.

I also found out from my primary that my GI told her he was hoping to find a section that was the problem and then he could remove it through surgery and resection. REALLY!!!

So was he disappointed he could not follow his plan???

Thank you one and all I'm ready to start the fight again. My plan is to continue with the present GI for a few more week (he is convenient being a few blocks away) once he has finished ordering all the tests move on to someone else.

Hugs,
K

desertrat · Post by **desertrat** » Mon May 21, 2012 4:19 pm

Kitty, when you move onto another GI specialist, don't be discouraged if he/she is "not the one" you are hoping to find. Many, many GI's are still with the same mindset as your current GI. Simply move on, find another, and another, and another if need be. Once you find "the one" you will be so much better, physically and mentally. The stress of having an incompetent doctor is beyond frustrating; you need to find a doctor that listens and is willing to try a variety of things, so that you can move forward with healing. Believe me, I have moved on to so many doctors, searching for one who is openminded and caring. Once you find that doctor, you will relax and be able to concentrate on what makes you better and not having 24/7 confusion and irritation over an inept doctor. I know it's so hard, I understand. Just don't give up. There are doctors, PA's out there who really do understand....it's just such a trial finding them.

God bless,

Mandy

maestraz · Post by **maestraz** » Mon May 21, 2012 5:46 pm

Hi Kitty,
We have a member named Robin, who lives in your area. Maybe she will read this thread and chime in, though we haven't heard from her in quite a while.

FWIW, my GI doc, who I think is great, did a fellowship at MT. Sinai. I have heard good things about them.

I'm glad to hear you sounding better. I hope you will shortly regain some sense of control, which I think is crucial to tackling things in an optimistic way.

Leah · Post by **Leah** » Mon May 21, 2012 6:32 pm

Hi Kitty. Joe is right. If they don't find anything with the next set of tests, then you need to do the pill/camera thing. I remember when I first was talking to my GI, he had said that if nothing showed up, then the camera would be the next step. That was when he was suspecting Crohn's for me. Hang in there.

Leah