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Lifetime of GI issues and here I am....
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Janet794

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Joined: 13 Sep 2017
Posts: 15
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2017 Oct 21 - 1:40 AM


Food Intolerances : Gluten, Wheat

PostPosted: Wed Sep 13, 2017 5:37 pm    Post subject: Lifetime of GI issues and here I am.... Reply with quote

I have started reading the Microscopic Colitis book and it reads like it could be my diary. My GI issues started in my late 20's and continued clear through my 60th Birthday. Since turning 60 this past June I am in a bad place with watery diarrhea, loss of appetite, weight loss, fatigue, etc, etc. I have been following a gluten free diet for over 15 years. I don't do processed foods, but thought my diet was pretty healthy. Colonoscopy revealed both Lympho and collagenous Colitis. I had Lymphocytic Colitis about 15 years ago, which I thought resolved based on colonoscopies since then. I have had over a half dozen duodenal ulcers, Barrett's esophagus (resolved?) and have been taking Nexium for over 10 years. Newest plan, starting tomorrow. Stop the Nexium, start Endocort. I also take Cymbalta for anxiety and generalized arthritis pain. I think past past includes any of the treatments listed in the book. I have altered my diet many times. So, again I will eliminate dairy, no soy which won't be a big deal and gluten free is my way of life. No fruit, sugars, or fibers ( no more Fibercon). I sure hope this latest "new thing" does it for me. I am so tired of not feeling well....
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starfire
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Joined: 25 May 2005

Posts: 5161
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2017 Oct 21 - 1:40 AM


Food Intolerances : Gluten, Soy
Location: Pennsylvania

PostPosted: Wed Sep 13, 2017 5:57 pm    Post subject: Reply with quote

Don't try to do cold turkey on Nexium. You need to wean off it. Rhizinate 3X by Integrative Therapeutics can help with the heartburn. I use German Chocolate flavor. I have stopped using Nexium 2 or 3 times but have never been able to stay off it long term. I also have Barrett's E. I hope you have better success than I have.
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Janet794

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Joined: 13 Sep 2017
Posts: 15
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2017 Oct 21 - 1:40 AM


Food Intolerances : Gluten, Wheat

PostPosted: Wed Sep 13, 2017 7:03 pm    Post subject: Reply with quote

So when you say wean off, how? Every other day for a week, then every three for a week, something like that? I quit taking the Nexium in May and had terrible stomach issues. Told the Gastoenterologist that, but the instructions I received just said stop. My stomach has never been my friend......
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tex
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Joined: 24 May 2005

Posts: 30593
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2017 Oct 21 - 12:40 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Wed Sep 13, 2017 8:01 pm    Post subject: Reply with quote

Hi Janet,

Welcome to our Internet family. The reason why you can't just stop taking Nexium is because research shows that when proton pump inhibitors are stopped abruptly, they cause a rebound effect. The acid production in the stomach will be much worse than it was originally. You need to slowly wean off using H2 blockers and antacids to allow your body to adapt to the change. You may gain some insight of the extent of the problem and how to deal with it by reading this article (which is available for download on the Microscopic Colitis Foundation website):

http://www.microscopiccolitisfoundation.org/upl...evised_112716.pdf

To achieve remission from MC, we have to avoid all of our food and drug sensitivities, not just most of them. It can be tough to do, but it's doable and so worth it in the long run. You have a head start with the GF diet, and by eliminating the remaining items (with some coaching from us) you should be able to stop the symptoms.

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

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.
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Janet794

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Joined: 13 Sep 2017
Posts: 15
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2017 Oct 21 - 1:40 AM


Food Intolerances : Gluten, Wheat

PostPosted: Wed Sep 13, 2017 8:35 pm    Post subject: Reply with quote

Thank-you for the excellent article. I will follow the advice and hopefully avoid further discomfort. Ordered supplements. Will pick H2 blockers tomorrow. Been trying to figure out my GI system most of my life. Currently eating mashed potatoes and drinking Ensure, Gatorade, and drinking lots of water keeping dehydration "at bay". The horror of wearing diapers at night and not going too far from any bathroom are at it's pinnacle. Tomorrow is another day....
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tex
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Joined: 24 May 2005

Posts: 30593
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2017 Oct 21 - 12:40 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Wed Sep 13, 2017 8:53 pm    Post subject: Reply with quote

I also drank a lot of the Ensure and Gatorade early on before I figured out what was happening, but the problem with Ensure is that it's loaded with dairy derivatives and other problems, and the Gatorade contains way too much sugar for us to be able to digest it, so it just fuels the diarrhea fires.

Here's a link to an old post on dehydration and electrolytes:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=992

We have to eat as much protein as we can in order to promote healing in our intestines. Some people have problems with potatoes, but they've always been a mainstay in my diet, and most of us tolerate them well.

You have to kind of take life a day at a time while recovering and yes, look forward to a better day tomorrow.

Tex
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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.
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Janet794

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Joined: 13 Sep 2017
Posts: 15
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2017 Oct 21 - 1:40 AM


Food Intolerances : Gluten, Wheat

PostPosted: Thu Sep 14, 2017 6:20 am    Post subject: Reply with quote

Oh, my! Seems there is always a problem with foods that are processed. Take those off my list for awhile. I was eating mainly a quality white rice, but got very bored eating the same food. I will switch back to the rice today. How about the sprouted rice? Gabba rice. It has more fiber than white rice, so that may be a problem. I have no problem eating gluten free, as I have been GF for about 15 years. I read every label. If it has more than a couple ingredients back it goes. I avoid additives and preservatives. Dairy will be my stumbling block. I love cheese. I am guessing no matter what I eat, until the inflammation is treated, I will continue to visit the toilet😜 I pick up the Endocort today. I am a bit anxious about taking a steroid again. When I was treated for Lymphocytic Colitis about 15 years ago they had me on 80mg of Prednisone a day for about 9 months. I got better, but it was no fun. Also took a long time to get off it. Hopefully this newest variation will be better tolerated. I have tremendous insurance, thankfully, so I won't have to pay out of pocket.
The adventure continues🐸
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tex
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Joined: 24 May 2005

Posts: 30593
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2017 Oct 21 - 12:40 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Thu Sep 14, 2017 8:16 am    Post subject: Reply with quote

Hi Janet,

Only up to 21 % of the budesonide is absorbed systemically (the rest is absorbed by the colon, so at least 79 % of it cannot cause systemic effects). And some patients absorb less than 21 % systemically (that varies by the individual). So budesonide is much more "user-friendly" than prodnisolone. It usually won't begin to affect your adrenal functioning until about 6 months to a year.

I'm not familiar with sprouted rice, but maybe someone else can offer some insight on that.

Tex
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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.
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brandy
Rockhopper Penguin
Rockhopper Penguin
United States

Joined: 16 Oct 2011

Posts: 1930
User's local time:
2017 Oct 21 - 12:40 AM


Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Thu Sep 14, 2017 10:27 am    Post subject: Reply with quote

Stick with white rice, less fiber. We are usually ok with salt and pepper.

Welcome!
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Janet794

unknown IP

Joined: 13 Sep 2017
Posts: 15
User's local time:
2017 Oct 21 - 1:40 AM


Food Intolerances : Gluten, Wheat

PostPosted: Thu Sep 14, 2017 5:59 pm    Post subject: Reply with quote

The doctor prescribed Endocort 9mg daily for 30 days, then 6mg daily for 2 weeks, then 3mg daily for two weeks. I see her December 1st. Does that sound routine?
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tex
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Joined: 24 May 2005

Posts: 30593
User's local time:
2017 Oct 21 - 12:40 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Thu Sep 14, 2017 8:07 pm    Post subject: Reply with quote

Yes, unfortunately. It's about one-third long enough according to the experiences of most people who've successfully used budesonide. But that seems to be the popular prescription regimen among GI Docs.

Tex
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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.
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Pam V
Little Blue Penguin
Little Blue Penguin
unknown IP

Joined: 11 Jun 2017
Posts: 47
User's local time:
2017 Oct 21 - 1:40 AM


Food Intolerances : Gluten, Casein, Soy and Egg
Location: Boston, MA

PostPosted: Fri Sep 15, 2017 6:31 am    Post subject: Reply with quote

Janet - After reading other people's experiences here on the board, as well as Tex's book; when I met with my GI for a f/u appt. after my colonoscopy, I told her that I wanted to do a slow taper with Budesonide. She was pretty agreeable to letting me decide how I wanted to use the medication. She is very nice but, I think, is more into doing the scoping procedure and less about managing the disease. I took 9 mg of Budesonide for one month and have been on 6 mg for two months - I am now going to drop to 3 mg/day with the hope of tapering off by early 2018. Honestly, she didn't care how I did it and said she would keep refilling the Rx if I needed it. Also, at Tex's advice in the book, I started taking my Budesonide all together in the AM rather than spacing it out during the day. The supplements (Magnesium, Vit D. and B's) I take three times/day.

Best wishes -
Pam
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Janet794

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Joined: 13 Sep 2017
Posts: 15
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2017 Oct 21 - 1:40 AM


Food Intolerances : Gluten, Wheat

PostPosted: Fri Sep 15, 2017 8:17 am    Post subject: Reply with quote

Biopsy report: Final Diagnosis
1. RANDOM COLON BIOPSY:
A. COLONIC MUCOSA WITH MULTIFOCAL BORDERLINE INCREASE IN SUBEPITHELIAL COLLAGEN, EPITHELIAL DEGENERATIVE CHANGES AND INCREASED LAMINA PROPRIA PLASMA CELLS CONSISTENT WITH COLLAGENOUS COLITIS
2. TERMINAL ILEUM BIOPSY:
A. SMALL INTESTINAL MUCOSA WITH NO PATHOLOGIC DIAGNOSIS
B. NO ACTIVE ENTERITIS OR ARCHITECTURAL DISTORTION DETECTED
3. RECTAL POLYP:
A. COLONIC MUCOSA WITH MUSCULARIS MUCOSAE HYPERPLASIA AND SUBEPITHELIAL FIBROSIS
Three doses of Entocort down and I didn't poop the bed last night, yay! Based on my prior experience with Prednisone, 9mg is under the dosage of Prednisone that is associated with the Adrenal issues I had when I came off 80mg/day for 9months. Great they have developed a medication and done research, that should, in theory, not cause Adrenal issues. Taking one day at a time and this day has started well. :)
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Janet794

unknown IP

Joined: 13 Sep 2017
Posts: 15
User's local time:
2017 Oct 21 - 1:40 AM


Food Intolerances : Gluten, Wheat

PostPosted: Sat Sep 16, 2017 6:53 am    Post subject: Reply with quote

Spoke too soon......I may have added too many variables to know why the diarrhea started again last evening. I took Magnesium and Vit D supplements yesterday and this morning, so will stop those for now. I skipped a day of Nexium, but took one yesterday, won't do that today. Fortunately, my diet is really not a question as gluten free has been my life. No wheat, dairy, or soy yesterday. I did have baked chicken, which I have had no meat in months, so that may be suspect. And the solutions continue to be elusive....
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Janet794

unknown IP

Joined: 13 Sep 2017
Posts: 15
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2017 Oct 21 - 1:40 AM


Food Intolerances : Gluten, Wheat

PostPosted: Sun Sep 17, 2017 8:25 am    Post subject: Reply with quote

I am thinking I need to be more patient. After 3.5 months of wd, I doubt I will be cured in two days😂 This morning was much better though, despite sharing popcorn with my Grandson last night. Who can watch The Gruffalo with a two year perfect little boy without sharing popcorn?
I am limiting my meds to the Entocort, Cymbalta, and Tramadol until I have a change in my bm consistency. Then I will try one new supplement at a time. I have been taking B Complex, so I will continue that too. The Vit D and Mg can wait.
Of course sticking to the GF diet, limiting dairy, sugar, and I rarely eat soy. Have a great Sunday!🌞
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