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beltgrl
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Joined: Mon Feb 22, 2016 11:09 am
Location: california

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Post by beltgrl »

Hi there. After 6 years of struggling with CC, I've come to the conclusion that I need more help and info from those with this condition. I found this site and I hope to get this nasty thing under control. I am completely frustrated and sick! I feel that my life is over and I'm only 48! I also feel that my marriage is suffering and I've been married for 25 yrs. I am trying to do the brat diet now (banana, rice, applesauce, toast) and I'm trying to go gluten free. I LOVE to cook and eat, and it's depressing knowing I cannot eat/drink anything i want. I know I need to do the elimination diet, but I don't know how to start. I guess a good book would help.

I was diagnosed with Cdiff after having a hysterectomy in 2009. I didn't go to the ER until 7 months of diarrhea and was about to pass out from 50lb weight loss and dehydration. The test came to show Cdiff and so I though that everything would go away after taking the medicine flagyl. When the diarrhea didn't stop, I went in for colonoscopy. The test came up as Collageonous Colitis. I don't know if Cdiff caused this disease, or if pain meds are to blame as I am a chronic pain pt who took norco for 10 years prior to diagnosis. So, don't know really what caused this, and that is frustrating too. So my CC comes and goes. But when it comes, it can last months!! Right now it's been 5 months of severe, watery, undigested food diarrhea. Sometimes nocturnal and I need to wear, ahem, diapers! I hate this!

So, here I am. Glad to be with people who know what I'm going through.

D
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Adelaide
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Post by Adelaide »

Hi D

I really feel for you. My problems started after antibiotics just over 4 years ago but I was only diagnosed with LC two months ago.

It is nice to be on this site where people know what you are going through and can help and support. As I am a relative newcomer to this site I will leave it to some others to help. I just wanted to say hello and that we are there for you :grin:
‘I have decided to stick with love. Hate is too great a burden to bear.’ – Martin Luther King Jr
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tex
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Post by tex »

Hi D,

Welcome to our Internet family. Trust me, most of us here have felt exactly they way you described, at one time or another because of this disease. I can still remember how hopeless I felt over 15 years ago when I discovered that my gastroenterologist was unable to help me. But yes, you can get your life back if you're willing to do what it takes to stop the inflammation in your digestive system, and it appears from your post that you are ready to do that.

A good place to start when designing a recovery diet is to read the diet guidelines that can be downloaded from the following link:

http://www.microscopiccolitisfoundation ... loads.html

Some of us here have been in remission for many years (I've been in remission for over 12 years now) and others are in all stages of recovery. It takes work and dedication, but it is definitely doable and so worth it to be able to sleep, leave the house, travel, or whatever, without fear of an accident. And you are correct — no one truly understands this disease unless they actually have it.

Unfortunately the only book ever written about the disease is the one pictured in the upper right-hand corner of this page, and I can't recommend it — not because it's not a good book (it is), but because I wrote it, so it wouldn't be appropriate for me to promote it here. :oops:

Again, welcome aboard, and please feel free to ask anything.

Tex
:cowboy:

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.
Blueberry
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Post by Blueberry »

Best of luck beltgrl! Hope you find answers and I imagine you will. Don't let the disease defeat you. You have come to the right place. Before the age of the internet I developed the worst of MC around the age of 18. It was devastating, quickly loosing 40 pounds and remaining sick with explosive painful D for around 20 years. The many doctors I saw didn't know what to do. About all I heard from them was "buck up kiddo, you'll have to learn how to live with it." Not exactly encouraging helpful directions.
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Erica P-G
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Post by Erica P-G »

Hi D,
I'm 48 and had on an off WD since 2007, Colonoscopy in 2012 -LC and no one could help me and by the Spring of 2015 I knew I needed to start healing myself.

Here is my post...as I was just as devastated with my health as you are, but the great people of this forum have helped so much, I am forever grateful to them.... http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173

Ask lots of questions...that's how it all begins around here :wink:
Cheers
Erica
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
beltgrl
Posts: 2
Joined: Mon Feb 22, 2016 11:09 am
Location: california

Thanks!

Post by beltgrl »

I appreciate your posts! I ordered the elimination diet from amazon, and will probably order your book too tex. The one thing I'm really concerned with is my marriage. My husband is highly sexual, and this disease is a sex killer. YUK. But, I am working on remission.
Thanks again
D
Blueberry
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Post by Blueberry »

Remission would be most helpful, obviously. I've read a few books from Amazon of late about low dose naltrexone (LDN). It's is often prescribed for autoimmune diseases, such as MS and MC. In a few of the books was mentioned that LDN increased sex drive, when drive had been lost due to the disease. It might be something to try and see if it helps. A little bit about LDN can be read here:

http://www.lowdosenaltrexone.org./index ... useful_for
crervin
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Post by crervin »

Hi D, so sad you are here. Good luck with everything, read, read, and keep reading! You will begin to know more than your GI dr about this disease, sadly!
Martha E.

Philippians 4:13

Jul 2008 took Clindamycin for a Sinus infection that forever changed my life
Dec 2014 MC Dx
Jul 15, 2015 Elimination Diet
Aug 17, 2015 Enterolab Test
Dec 2015 Reflux
Sept 2016 IC
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Gabes-Apg
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Post by Gabes-Apg »

Hi D
welcome to the group and sympathies that you had to find us and that you have spent months with nasty symptoms...

I was 40 when I was diagnosed (and we have many members younger than that) it is rough going to be having chronic symptoms no matter what age you are.

if you need book guidence for a diet protocol, maybe the Wahls protocol is a good start or the Lyme Disease protocol - this still has to be adjusted/tweaked to suit the uniqueness of MC. (remove raw nuts, raw salad, raw fruit) and your individual safe foods.

resolving symptoms and healing for MC is pretty easy, doesn't need a book;

at first , small amount of ingredients, well cooked, bland. soups and stews work well for this... lots of good animal protein
lots of Vit D3 and magnesium to optimise healing/reducing inflammation (no other supps at first)

once there has been healing then you can start to add ingredients in.
thats it! that simple

as to what ingredients, well there is no set plan that works for every body. as you read posts you will see that there are food items that work for quite a few. but there is no set ingredients that work for everybody, so it is a bit of trial and error to figure out your safest foods.

Please take the time to read erica's post (she posted the link above) and other posts and subsequent discussions aimed at new people, this will help you see how important a bland, small amount of ingredients eating plan is.

hope this helps....
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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