"When Sunny gets blue...."

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sunny
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"When Sunny gets blue...."

Post by sunny »

Well, I went to GI Doc on Mon. and she said there was no connection of MC to celiac or gluten, thank you very much!! :???: If anything, it would be classified as a "food allergy." I kind of expected this as I have read so many posts where you all have had your docs say basically the same thing. She wants me to go back on the Entocort, and thinks that it will be OK if the c-diff is gone. sigh....but first I need to have another sample checked for c-diff. We discussed treatment if c-diff is still there, and she prefers me to stay with the FLagyl. She thinks the mystery item that shows up in the t-bowl once in a while (that I described as looking like the tip of a finger) is a vitamin pill that is not dissolving. So I then asked about malabsorption....no...if I had a malabsoption problem I would look like the little kids in Africa with the scrawny legs and swollen bellies. She said it was not unusual for meds or vitamins to pass through quickly and not be dissovled; when I described my adventure with the spinach omelette that showed up 6 hours later in the middle of a furniture store....well, that was not unusual either. :roll: And cetrtainly not an indication of malabsorption. When I spoke of the study Mike posted aobut celiac being common in patients with MC, she said there was not enough empirical evidence. I didn't scream or rant or turn red....just smiled and thanked her for the visit and left. I decided it just wasn't worth the stress of arguing with her . This AM I got the call from my primary care doc that the c-diff tests were positive. So called the GI doc this afternoon and talked with the nurse...they didn't get a copy of the results....imagine that!! the physician requestng the test didn't get the results!! :shock: SO the nurse faxed a request over to the primary care doc for results....and then later they called in Rx for vancomycin. ( I guess she changed her mind about round 2 of Flagyl.) Local pharmacy has to order it and Vanco will be here tomorrow. so.....there we are....another episode of As the world turns in the Days of Our Lives in General Hospital!! :wink:
Just gotta lalugh!! or else I'd cry!! :sad: Meanwhile I have been reading thru the c-diff support group and learning about various probiotics and some names were familiar as folks here have mentioned them...like culturelle and VSL3. I already am on Florastor and will be looking for some others too. Thanks for listening....I want some chocolate or something sweet....think I''ll make a nice gooey Sugar free and flour free lsomething or other!! and yes, i think i am an emotional eater!!!!!!!!
Oh! forgot this...the test kit from Entero labs came but I will have to wait to send in a sample till Monday as Mon thru Wed are the only days they want you to ship , so will have to wait some more for Entero Lab's report.
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Post by Mars »

My goodness Sunny!!!!!

You are sure having a time of it, aren't you? I like your sense of humor though - if you can't cry - laughing sure helps!

Oh, your "soap opera" comment had me laughing my butt off! Good one!

Take care - you WILL get better!!!! Here's a :hug: from me!

Love,
Mars
"Let us rise up and be thankful, for if we didn't learn a lot today, at least we learned a little, and if we didn't learn a little, at least we didn't get sick, and if we got sick, at least we didn't die; so, let us all be thankful." -- Buddha
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Post by mle_ii »

Uh oh, everyone duck while Sunny's poo flies accross the US. ;D

Oh and as far as MC and CD, there most certainly is a connection, all they have to do is look at the various studies showing this to be the case. I've submitted many of them to this site so there are definitly more than one and it's definitly not just the random musings of us folks here or crackpots. Though like you said, I expect this sort of comment from most GIs. Some times I wonder if they've pulled their head out of their own... err... pulled their head out of the sand yet. ;D LOL

As far as probiotics go I'd stay away from culturelle, I had bad reactions to it and it's definitly not a strong probiotic, meaning I think the numbers were pretty low in the count of bacteria. Can't remember what Florastor was, but I think it was somewhere between VSL#3 and Culturelle in numbers. Oops, just looked it up, I'm not sure I'd recommend it or not. I know that it helps some, but I would thing a probiotic with Lacto and bifido bacteria would be much better for folks like us, rather than a yeast based probiotic. But then that's my opinion.

Mike
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Post by mle_ii »

Crap, didn't read through your entire post before sending my post. They were going to put you on a medication that decreases your immune system while you had C-Diff, based on a guess. That is just insane!
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Post by mle_ii »

Oh and just for giggles I went to PubMed and entered a query for Microscopic Colitis (and LC/CC) along with "Celiac Disease" and I came up with 83 results. Seems they need to read a bit more.
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tex
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Re: "When Sunny gets blue...."

Post by tex »

Sunny,

Wow! Your GI doc still has a lot to learn, doesn't she. LOL. But, I'm glad to see that she decided to go with the Vancomycin - that's the best choice. And, the fact that she's willing to prescribe Entocort shows that there's still some hope for her.
sunny wrote:...the test kit from Entero labs came but I will have to wait to send in a sample till Monday as Mon thru Wed are the only days they want you to ship , so will have to wait some more for Entero Lab's report.
Hahahahaha. I guess they don't want any "spoiled" you-know-what showing up at their lab. LOL. Actually, I'm sure that part of that is to be sure that the delivery company doesn't get caught with a thawed sample over the weekend, and I'm sure the diagnostic tests are more reliable when done before the sample has a chance to "degrade", but it does seem kind of humorous to be worrying about that stuff spoiling. LOL.

Thanks for the update, and good luck with the treatment.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Pat
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Post by Pat »

Sunny,

Hopefully the Vanco will knock the c-diff out!!! And if you get the Enterolab report back and it is neg. You will be good to go!!!! If it helps any my GI doc is in a big group and he recommended Enterolab to me. (The first two GI docs that I have had were clueless) His experience is that about 50% of people with MC have gluten intolerance. He says it is possible to not necessarily be Celiac but non-celiac gluten intolerant. He is keeping me on the diet even though I have not responded to the diet and I have been on it since July. Good luck!!!!!

Pat
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mini
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Post by mini »

Hi Sunny

Sorry to read things are still not good, wish I could say positive things about doctors to reassure you but, my experiences are not good! I think everyone else in the group will no doubt feel the same no one seems to really have much of a clue about this condition, it's related problems or treatment. Hope things improve soon for you x
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Post by ErinD »

Hi Sunny,
Sorry to hear about your disappointing dr. visit. Isn't it frustrating to have all this evidence and proof yet the doctors think its all garbage??? I just don't get it. I got the same from my doc when i saw him. errrr.

I am sorry to hear you tested positive again for the C-Diff. Hopefully this round will knock it out and you will be feeling better again really soon!
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
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Post by Polly »

Hi Sunny!

LOVE your attitude! What you are experiencing with your GI doc is par for the course, as you know from this website. Unfortunately it is to be expected. :roll: If only all docs could be as informed as Pat's.

The good news is that you WILL get well - as you know from reading our stories here. You will be able to figure out the best way to diagnose (hurray for Dr. Fine's mail-in POOP lab) and treat your MC, and support is available here any time you need it. One of the reasons so many of us stick around long after we are well is to serve as an example that there IS life after MC. Also, in my case, I want to "give back" to repay those kind souls who were here for me when I was in my darkest period. If not for them, I truly believe I would still be sick.

I'm glad you've been switched to vancomycin - I'll bet it does the trick. Do you think the C. diff. is at least partially treated? IOW, have your symptoms improved any?

Your GI is definitely not well informed about food issues. A "food allergy" means an anaphylactic (life-threatening) reaction to a food - immediate hives, itching, trouble breathing. Food intolerances (like MCers have) are not the same kind of reaction - they result in diarrhea, mental fog, muscle and joint aches and pains, etc. And many here were found to have malabsorption by Dr. Fine. What your doc describes is end-stage malabsorption, a rare finding.

I think you are extremely wise to get Dr. Fine's tests. Have you decided which ones yet?

Hang in there. Remission is just around the corner. I just know it!!! :grin:

Love,

Polly
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Post by Gloria »

So sorry that you still have c. diff. I've read that Vancomycin is the better drug, but isn't prescribed as much as Flagyl because it's more expensive. Hopefully it will work for you and you'll be done with the D. If not, Entocort is usually very effective and keeps the D at bay while you're determining your food intolerances.

Gloria
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Post by crranch »

I'm so sorry that your having a rough time, hopefully things will turn around soon for you. Rick recently had the full testing done at Enterolab, and we feel that it was the best money that we have spent in years. It gave us answers on a direction to follow as far as his diet. I hope you find your answers there as well.

Hugs,

Carrie
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Post by annie oakley »

Gee Sunny........Sorry you are having a tough time, but as everyone said you have a GI that needs to read more and it is par for the course. I even had a doctor tell me I was nuts and all the informayion out can't be true. Stick with us sweetie>>>>>>>Our collective Knowledge and all those lovely souls here that research for us plus Polly's Great Knowledge , we end up knowing more than the GI"s
I know Doctor's have a certain way they learn and believe and I am not bashing Doctors!!! Polly is a doctor and I think she brilliant>>>>It's just that we have to take our research into our collective hands and do it ourselves. Most Doctors have no Idea what to do with us. I have never gotton better answers or resolve than Right here. So here's a big :bigbighug: for ya. Love Oma
May I be more compassionate and loving than yeterday*and be able to spot the idiots in advance
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sunny
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thanks to everyone

Post by sunny »

Thanks for the hug, Mars!! Needed that!!
mike, appreciate link to studies of MC & Colitis...think I'll give the doc the link ...
Tex...glad to hear that you think vanco is the way to go...125 mg 4x day is the RX....
Pat....so glad to hear that your GI doc recommneds Entero lab!!! will wonders never cease!! also found that 50% of those with MC having gluten intolerance verry interesting!!
Erin amd Mini...thanx for the good thots...
Polly...I requested Entero labs "all inclusive get a loan from your bank test!!! "and thanx for the explanation of allergies vs intolerances...I knew that...somewhere in my brain fogged brain... and not sure if the flagyl got the job done since the Sx started immediately after stopping the flagyl.I appreciate the reminder that I WILL get better...some day...
Gloria...you are right ...the vanco is very expensive to the tune of $1,000...I was on entocort and had to stop because of the c-diff...
ccranch....i think you are right that the entero test will help with diet direction...nice to hear that you thin it ws money well spent.
And Oma...thanx so much for my great big hug...i've been pretty blue today.
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Post by Polly »

Oma,

Thanks for the kind words .....:oops: One of the best ways for a doctor to REALLY understand a disease is to actually come down with it. LOL! It's easy for a doc to be unconcerned about MC without ever having experienced that old familiar "bathroom boogie", with all of the associated fear, embarrassment, and anxiety. Only those of us who have been there/done that really know what it is like. That is a major reason why we are a family here....we have walked in each other's shoes and KNOW how miserable MC can be.

You are such a sweetie-pie!

Love,

Polly

P.S. Sunny...here are some more hugs:

:hug: :bigbighug: :hug: :bigbighug:
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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