I'm Back...Update From Mayo

cludwig · Post by **cludwig** » Tue Dec 12, 2006 4:10 pm

Hi Friends,

I have a lot of news and will do this in multiple posts since I am a slow typist and this still takes me forever. First I have to say that the people at the Mayo Clinic were amazing. Dr. Pardi (GI) was a dream. I went there prepared with limited expectations and was very pleasantly surprised. Dr. Pardi was extremely intelligent,compassionate, and helpful.

Back up to 6 days before our trip....I suddenly was having formed stools. After the colonoscopy I am still having formed stools. Go Figure, D for a solid year and now It's formed. I have many thoughts on this and will go over another time. Thank goodness for poop, food and med journals as I can track exactly what happened.

First big moment was when he read my biopsy report from my colonoscopy that I had in Jan and said that my biopsy had a few lymphosytes in it but not near enough to meet the MC diagnoses. He stressed however that there is a lot of gray area in diagnosing MC...biopsy sites etc. and that I possibly could have a touch of it. Then he actually did a physical exam, my first ever since my surgery and asked me about my symptoms ( recall the zebra story from my last GI when I asked if we could go over my symptoms and he wouldn't even let me....yes I am bitter). During the exam he zoned in on the fact that my lymph nodes in my neck were swollen and I have a rash down the back of my neck and after listening to what my symptoms were said it sounded as though my body is fighting an infection. I then got my second colonoscopy results and there was absolutely no inflammation...however I have been on 6 mg entocort for quite a while so this is not a 100 % thing either. So, Dr. Pardi said there could be some LC, but given both biopsies and my not responding to entocort. he believes the colitis was the result of an infection.which is slowly clearing up and Irritable bowel syndrome as well.
He said much research is being done on probiotics and he wouldn't be surprised to see IBS treated with probiotics in a couple of years.

We also discussed Dr. Fine and my test results from him. He has not only heard of him but has great respect for his work. He said my long list of food allergies has played a major role in my illness and while I clearly don't have celiac disease, my long standing mysterious anemia could most likely be the result of having a sensitivity to gluten all my life.

I also had a CT scan while I was there...they are the only ones in the country to have this newest most sensitive ct scan. Unfortunately for me they found 2 cysts on my pancreas. There is a possibility that these machines are just so sensitive that they are picking up things that they were never able to before. He said they see a lot of cysts on livers and kidneys but not so many on pancreases. He said these could either be benign or precancerous. this all leaves me in a strange spot. One can wait and do a repeat scan in 6 months to see if the cysts have changed or there is another test were tubes are put down my nose and into my stomach were they can get a better picture of the cyst to determine what the cell walls look like as benign and cancer cell walls look differently. I am still thinking about my options but am leaning towards doing the additional test as pancreatic cancer is not one that most people survive...so giving it an extra 6 months to grow doesn't seem wise. Even so I think it is probably benign...I just can't imagine gambling on it. That is the problem (or maybe a blessing) with these new scanners...they pick up everything.

That's my trip in a nutshell. I am sure I will remember lots more and will add later. It's good to be home.

Love,
Cristi

Liz · Post by **Liz** » Tue Dec 12, 2006 4:23 pm

Well Cristi, you have certainly had a good going over at the clinic. It would be a difficul descision to make re the tests on the pancreas. It is pretty invasive & you probably would not want to have it unless necessary. Even so, the possibility of cancer would undoubtedly be on your mind & it is probably better to be on the safe side & have it done. Hope it all turns out well for you. Good news about the normal poos though.

We don't always get that too often.

Love

Liz

barbaranoela · Post by **barbaranoela** » Tue Dec 12, 2006 7:29 pm

And its good to have U home also~~~

Sounds like U had a complete going over--not Xpecting to hear of all these cysts---
What type of CAT was it Cristi?

Ive heard of this PET CAT which picks up a zillion things---was it that??

Am sure all the cystic issues can be taken care of----and once again

home--

luve Barbara

mle_ii · Post by **mle_ii** » Tue Dec 12, 2006 7:43 pm

Wecome back Cristi!

Glad you found someone who listens to you. It's very hard to find in a GI Dr that's for sure.

I was wondering if you brought up the missing bifidobacteria. Did you and if so what did he say?

Thanks,
Mike

Post by **tex** » Tue Dec 12, 2006 9:34 pm

Hi Cristi,

Wow! That's a gangbusters report. Dr. Pardi sounds like a one-in-a-million GI doc. I'm so glad you finally found a GI doctor who actually has his ducks all in a row.

I think you're wise to have the pancreatic cysts checked out. In gluten sensitive individuals, gluten seems to have a knack for "modifying" various organs in the body in ways that appear to be malignant when they are not. Even so, it's best not to take chances with such a vital organ.

Love,
Tex

starfire · Post by **starfire** » Wed Dec 13, 2006 7:00 am

Welcome Home Christi........
And it really does sound like you had a great doctor. I'd probably have the extra test myself - just to KNOW.

I'll be looking forward to some more posts about your visit/exam/ect.

Love, Shirley

barbaranoela · Post by **barbaranoela** » Wed Dec 13, 2006 8:19 am

Cristi-----

I keep re-reading your post-----

How did U come across this GI---was he recommended or was it someone U found on your own---

I thought I had a great GI---but your report held my interest---

You are a go-getter-----U have to be so very proud of *U* as we all are

luve Barbara

Carrie · Post by **Carrie** » Wed Dec 13, 2006 11:45 am

Hi Cristi. I am SO happy you went to see Dr. Pardi. If I had not gone into remission (almost 2 years now), I definitely would have elected to go to Mayo to see him. What he told you makes a lot of sense to me. I agree with the others that you should follow through with biopsies of the pancreas - deal with it sooner rather than later. And good luck.

Love,
Carole

P.S. To Cristi and everyone - I haven't been here in a long time and think of you often. Truth is...I have been feeling super with no GI symptoms. But I'm still here and always enjoy hearing from you, either a PM or my regular cmail. MERRY CHRISTMAS and HAPPY HOLIDAYS TO ALL!!!!

cludwig · Post by **cludwig** » Wed Dec 13, 2006 2:42 pm

Hi Friends,

Mike...we did talk about the lack of the bifidobacteria and he said that was really interesting and then said that there was a lot of research going on with probiotics and in a couple of years it will be the main way they treat many bowel diseases. He wasn't any more specific than that unfortunately. I think researchers are reluctant to commit to anything until there are studies to document the validity.

Barbara...I don't know the exact name of the CT scan they used...but I will be getting a written report from Dr. Pardi and it should say in that what it is called....I'll let you know.
I think I just got lucky finding him. After my awful appointment with my GI, I went to my GP and complained that the GI wouldn't even listen to me...nothing happened. Then my husband sent the GP an email saying how crazy it was that the GI would get so pissed at me for this diet when he was doing absolutely nothing for me. Did he really blame Cristi for trying to heal herself. So finally the GP got a list of GI who actually study MC for us. I got online and read some of their publishings and Dr. Pardi seemed to look at other things going on that could be causing the MC. So that's how we chose him...that and it is the #1 ranked gastroenterology department in the country. I really did get lucky.

I really do think there is a huge gray area here and like many of you have said that a lot of these bowel diseases are intermixed. Interestingly, I think I learned the most about my condition from Dr. Fine and all of you....even if LC isn't my worst offender. What makes you all better as far as the diet goes has certainly helped me as well.

Love,
Cristi

Liz · Post by **Liz** » Wed Dec 13, 2006 2:45 pm

Great news Carole, so glad you are in remission. And a

to you as well. Hope you continue to stay healthy & happy in 2007

Love

Liz

artteacher · Post by **artteacher** » Wed Dec 13, 2006 7:53 pm

Hi Cristi,

I am so happy for you. I'm wondering if it's ok to post the names of the doctors who study MC on this site somewhere? That way, if anyone wants to see a doctor in their area, they might get a head start on finding someone good . . .

Love, Marsha

Polly · Post by **Polly** » Wed Dec 13, 2006 9:39 pm

Welcome back, Cristi!

So happy to hear about your positive experience. It validates everything I know and believe about Mayo.

Love,

Polly

Post by **tex** » Wed Dec 13, 2006 9:54 pm

Marsha,

As long as posted information is accurate, (IOW, as long as it's true), and it's not derogatory in any way, I see no reason why that information can't be listed. It's probably a good idea to not attempt to rate them, (although citing the ratings of other qualified sources should be acceptable, so long as those sources are also listed).

Do you think we should have a special forum just for that information?

Love,
Tex

grannyh · Post by **grannyh** » Thu Dec 14, 2006 9:08 pm

I think it would be great to have a place to list a doctor you think knows his stuff. and where they are located... since there are so many losers out there! I would list mine for sure...
grannyh

Jean · Post by **Jean** » Fri Dec 15, 2006 9:56 am

Grannyh

I think that would be a very short list! LOL

Jean