New GI

Lesley · Post by **Lesley** » Thu Dec 15, 2011 9:11 pm

A doctor who knows what MC is!!!!

I wish my head wasn't so brain fogged. I forgot to ask him some questions, and can't remember everything he told me.
But my first question - "do you have many patients with MC?" got the response - "more than I used to, but a lot of people are misdiagnosed with IBS. And some of those dx'd with MC have been improperly dx'd because both GIs and pathologists don't know where the biopsy should come from, left or right side of the colon, or what it looks like".

You can imagine how I felt. The relief was incredible! Someone finally talked MC!

He said that most people with stomach problems feel better if they do NOT eat gluten, which should be the subject of an evolutionary debate.

He told me not to take MoM because of it's osmotic effect on the cellular make up of the colon, and the fact that water is not absorbed properly with MC. He suggested Miralax and/or Senacot instead.

He understands that I won't take NSAIDS, so suggested Boswellia serata 300mg 1-3 twice a day or Bromalain 500mg three times a day, both naturopathic anti inflammatories. He says there is no real research to support their efficacious-ness (not a word, I know), but anecdotal reports say that they work.

He talked about histamines (something my previous doc didn't acknowledge at all) and asked if I wanted to do a mast cell test, which I did.
He also told me that pepcid is an antihistamine he considers safe and effective for GERD. Please opine!

He said he thinks my eosophagus is hypersensitive because the PH levels weren't horribly high prior to surgery. He didn't recommend doing another PH and motility test OR surgery because both will trigger more sensitivity.
He thinks that pepcid, being a antihistamine and NOT a PPI, is a good option for the GERD.

He also said getting off Norco is important, but my bowel motility may not improve. IHO I should be taking more Nortryptiline for pain control, and for the MC.

While he said MC is very often genetic he was unenthusiastic about looking at other labs for tests because of lack of scientific proof. He was less than convinced about leaky gut syndrome (according to him, the theory was advanced in Canada), saying that a lot of people are making a lot of money off this disease, doing a lot of testing, and selling a lot of drugs that also haven't been proved to be efficacious.
That was the the part of the meeting I didn't like.

While he accepts that MC'ers are sensitive to certain foods he thinks that figuring it out through elimination is the better course to follow.
I told him about being sensitive to chicken soup as a Jewish grandmother. He was amused and convinced. But not about Enterolab. There is no use in requesting a referral for MRT.

However, all things considered, the meeting was WAY better than any I ever had with the previous, now definitely fired GI!

draperygoddess · Post by **draperygoddess** » Thu Dec 15, 2011 9:32 pm

Lesley,

Sounds encouraging--at least he's willing to consider some other ideas. Hopefully you will begin to get some relief with his treatment, but if not, you can always do the testing on your own.

Here's hoping you're feeling better soon!

JLH · Post by **JLH** » Thu Dec 15, 2011 10:29 pm

Take in Polly's "Ta Daaa, My MC is Gone" post.

Were there 2 or 3 others who showed no signs on biopsy?

Lesley · Post by **Lesley** » Thu Dec 15, 2011 10:55 pm

Joan,

Take in Polly's "Ta Daaa, My MC is Gone" post.

He said MC sometimes resolves spontaneously, and no one knows why. But he made it clear that it is never cured, and will come back.

I KNOW Polly knows which side the biopsy should be taken from. And I KNOW she watches what she eats carefully, because she knows she can trigger MC again at any time.
I don't think he denied that. He was convinced that diet plays a role. He just can't accept tests that he feels are not science based. I know that medical folks need empirical evidence based on double blind studies before they endorse anything. And I know that "empirical evidence" is disproved daily. My last GI refused to connect diet to MC, refused to see that burning eosophagus GERD, gastroparesis and MC could somehow be part of a syndrome.
This guy seemed to get that much, at least.
He also connected arthritis, psoriasis and gluten. NP there.

It took me 1.5 hours each way (LA traffic, AND it's a long way!) but it was worth it to know that he had some understanding of what we go through.

Cynthia,
Tomorrow I will go get the stuff he recommended. I am curious to see if the natural medications help.

nancyl · Post by **nancyl** » Fri Dec 16, 2011 8:11 am

Leslie,
Wonderful news. Sounds like you got a pretty good doctor who at least listens and wants to work with you. I have taken Bromelain in the past, as a matter of fact, it's a great thing to take days before surgery because it cuts down on inflammation and infections.

I too travel to my doctor, but not quiet as far as you. It is well worth it.

When I go to my doctor (a good suggestion from Joe) is to type a list of things I want to discuss. I try to keep it as short as I can. I make a copy for him and we both go over it. I make notes on my copy. He seems to like this as we don't waste a lot of time, we can get right to the points I want to discuss.

Hopefully, your C will improve with the other medications.

Nancy

Lesley · Post by **Lesley** » Fri Dec 16, 2011 10:48 am

Nancy,
I did type it out, but I forgot it at home. That's one of the reasons I don't make shopping lists, the other one being when I write it down it's as if it is done!

My memory, never good, is worse and worse.

Kaiser has a great internet system, allowing you to email your doctor with questions. Generally I get answers very quickly. You can't type more than 1000 characters, forcing me to edit posts a lot, and to send 2 if I can't get everything into one.
I don't know how quickly this new guy will answer. I sent some questions yesterday. They have 48 hours. My PCP answers fast, even on the weekend. I don't know if this one will. We'll soon see.

Thanks again!

sarkin · Post by **sarkin** » Fri Dec 16, 2011 5:44 pm

Lesley, this is very encouraging - I can't blame your doctor for not agreeing with me on every point. It sounds overall more than positive, like you've found a partner who will work with you to optimize your health. I know that doesn't mean all of his suggestions will do the trick - but here's hoping.

I also take notes at the doctor's office... I have forgotten my notes in the past, but not any more (I put them in my smartphone, and I so hate the idea of playing with my phone during the appointment, I tend to remember the printout). I like being able to email my doctor - not an option with my PCP. My new gyn is wonderful about communicating - I'll be looking for a GI at some point, and hoping for that quality of communication!

Congratulations - sounds worth the long, trafficky trip!

Lesley · Post by **Lesley** » Fri Dec 16, 2011 5:54 pm

It was. And now I have to receive an answer to the questions I sent him yesterday. He might be one of those who takes his time in answering. My PCP answers immediately, even on a weekend. Also my old GI. I hope he answers soon.

Still. He KNOWS there is a connection between diet and MC. He KNOWS that gluten is bad for you. He KNOWS that people who don't have celiacs can have the same reaction to gluten. And he BELIEVES that certain foods send a person sensitive to it straight to the toilet.
That was refreshing!

I forgot everything at home. I borrowed a little tape recorder from Adam so I could record stuff he said, and I forgot it with my questions. Fog for brains.

And I found wonderful fish markets in that part of town. All sorts of fish I have never heard of before. I brought some back with me.

Gloria · Post by **Gloria** » Fri Dec 16, 2011 8:13 pm

He sounds like a keeper, Lesley.

a lot of people are making a lot of money off this disease, doing a lot of testing, and selling a lot of drugs that also haven't been proved to be efficacious.

I agree with him - it's one of the reasons I haven't tried to look for another doctor. I think we're guinea pigs for many of them.

Gloria

Lesley · Post by **Lesley** » Fri Dec 16, 2011 9:46 pm

My problem with that was I believe he was referring to tests like Enterolab and MRT.

Otherwise he was so much better than the other one - it was like night and day.

maestraz · Post by **maestraz** » Sat Dec 17, 2011 10:01 am

Good news about your new doc, Lesley. Hopefully you will find some relief to all the frustration you've been experiencing, and to your symptoms.

I have heard of Bromelain as an anti-inflammatory. Am I correct when I seem to recall that it is found in pineapple? Maybe I'll try it, as I don't like taking Tylenol. I haven't been eating pineapple because I don't want any irritation, but maybe I could do the Bromelain.

Lesley · Post by **Lesley** » Sat Dec 17, 2011 11:52 am

Yes, it's from an enzyme found in pineapples, well known for decreasing arthritic inflammation, or any inflammation for that matter.

I can't do pineapple because of the irritation both of the colon and of the GERD.

The one I got has turmeric, another well known anti inflammatory, one I add to numerous dishes. It has an extremely mild, almost undetected, but prized for it's properties, and for it's color.

I am starting it today. I HOPE it helps! All of us.

brandy · Post by **brandy** » Sun Dec 18, 2011 8:34 am

Hi Lesley,

Awesome on the fish markets! Glad you had a good GI visit! Brandy

Lesley · Post by **Lesley** » Sun Dec 18, 2011 10:41 am

Thanks Brandy!