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MICROSCOPIC COLITIS SUPPORT
Discussion and Support Forum for Collagenous Colitis, Lymphocytic Colitis, Microscopic Colitis, Mastocytic Enterocolitis, and Related Issues

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Mia lee

unknown IP

Joined: 03 Jan 2018
Posts: 4
User's local time:
2018 Jan 21 - 7:58 PM


Food Intolerances : Not sure: Inthink mushrooms, corn, red peppers. Still figuring it out.
Location: Ontario, Canada

PostPosted: Wed Jan 03, 2018 7:08 pm    Post subject: New member Reply with quote

Hello all. Just wanted to introduce myself.
I have had CC for about 17 years now. I once tried sulfadalazine, but had terrible stomachs pain with it, even though it stopped the D, so stopped ithe drug after only a few weeks. I was on the SCD diet for over Six years. That was totally gluten free, grain free , dairy free. The diet did not stop the D. I have refused all steroid drugs. I read that the Budenoside ( spelling?) resulted in over an 80 percent incidence of relapse after the drug was stopped, which seemed like very poor outcomes. In 2015' I finally tried the Pepto Bismol routine, with good results. The Pepto seemed less frightening than the steroids. Within a week, I had no more D. After the 8 weeks on the Pepto, I did have some episodes of D, but much less frequently, and I enjoyed significant remission periods with normal BMs. The gas, pain, etc had all disappeared, and a colonoscopy showed the extra collagen band had disappeared. I think that collagen band appears and disappears with some regularity actually. Over these last years I have had a few significant flare ups, but overall, much more under control. Recently however, I had a two week flare up.
I started the Pepto routine once again ( this past week), and now no longer have D, but have burny pain in my left back side just above my waist, and some burny pain in my lower left abdomin. I looked back in an old diary, and saw that years ago I had similar pains. So it must be my colon. It is worrying me though. I've had it for about 10 days or so. Why is it burny like that? I couldn't even sleep on that side because of the 'pinching, burny' feeling.
For a long time now, I have given up on going to my doctors for this. They clearly know little, and generally only can offer steroids. I have given up on gastroenterologists; as they only offer more invasive tests and steroids. I also will no longer have any more colonoscopies. I read medical publications that indicate MC can be susceptible to tears in the colon with colonoscopy procedures. A bit scary. I am not confident regarding Enterolab testing either.( I know many here swear by it; so please, no offence intended ). There are reports and criticisms of Enterolab because of a too low threshold applied regarding food sensitivities ( resulting in many eliminations of food choices that could very well be unnecessary. ) After reading some statistics about the high incidence of sensitivity findings in their clients , it appeared to me that the criticisms were not without some merit. Given their high cost for testing, and having some doubts, I felt it wasn't a great option for me.
I have recently been keeping a food diary to try to discover what my triggers could be. Of course that's very slow going.
By the way, they are wrong when they describe MC as non visible inflammation except if seen with a biopsy. My original colonoscopy did show visible inflammation. And then biopsies revealed I had CC.
So I am now worried about this burny pain I am having. Why does it feel like that? What can I do about it? I am thinking of maybe just trying a plain bone broth for a few days. Probiotics were awful for me, as is fiber.
Why do I still have this burny pain if the D has stopped? Why does it feel burny?
I want help, but I don't want to go to the doctor; I know exactly what they will suggest: steroids, a referral to a gastroenterologist; a colonoscopy.
:(
Please forgive my rambling. I don't talk to anyone about any of this. I just feel worried and wanted to tell someone about it, and about all of my mixed up thinking. I actually feel helpless right now.
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Erica P-G
Rockhopper Penguin
Rockhopper Penguin


Joined: 08 Mar 2015

Posts: 1294
User's local time:
2018 Jan 21 - 5:58 PM


Food Intolerances : Gluten, Dairy, Eggs, Soy, Tuna, Beef, Oat, Almonds, Walnuts
Location: WA State

PostPosted: Thu Jan 04, 2018 11:37 am    Post subject: Reply with quote

HI Mia,

What have you been eating lately? Those pains sound like perhaps too much fiber in the diet.

Are you on any VitD3 or Elemental Magnesium regimen?

Welcome, and ask anything Very Happy
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
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Mia lee

unknown IP

Joined: 03 Jan 2018
Posts: 4
User's local time:
2018 Jan 21 - 7:58 PM


Food Intolerances : Not sure: Inthink mushrooms, corn, red peppers. Still figuring it out.
Location: Ontario, Canada

PostPosted: Thu Jan 04, 2018 1:01 pm    Post subject: Reply with quote

Hi Erica. Thank you for your reply.
You may be right about fiber. I have been recently been eating green beans,broccoli, and a kind of Chinese green that seems fairly fibrous.
I take Vitamin D3, wild fish oil, a multi vitamin, as well as a stinging nettle infusion every day( stinging nettle is a good source of vitamins as well as being a natural anti- inflammatory). I made a good bone broth, and am taking that right now. I would just like this to start feeling normal again.
The Pepto is working though, and solid mobs right now ( at least that).
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 31007
User's local time:
2018 Jan 21 - 7:58 PM


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 Jan 04, 2018 6:46 pm    Post subject: Reply with quote

Hello Mia,

Welcome to the forum. Abdominal pain is common with CC, but when it can be felt on the back, that suggests two possibilities:

1. If the pain is near the center, at or just below the rib cage, it might be a gallbladder issue, or your common bile duct might have a blockage (gallstone).

2. if the pain is a little more toward the side, it might be a kidney infection.

Normally, though the pain associated with CC might be just about anywhere in the abdominal area, but it's seldom, if ever, noticed at the back.

I'm not saying that this is what's happening, I'm just suggesting possible issues that might exist, according to your descriptions. Again, welcome aboard.

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.
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Mia lee

unknown IP

Joined: 03 Jan 2018
Posts: 4
User's local time:
2018 Jan 21 - 7:58 PM


Food Intolerances : Not sure: Inthink mushrooms, corn, red peppers. Still figuring it out.
Location: Ontario, Canada

PostPosted: Thu Jan 04, 2018 7:15 pm    Post subject: Reply with quote

Hi Tex.
Thank you for your reply.

The pain is more on the side. A possible kidney infection is a bit concerning. I don't have any other symptoms though ( blood in urine, fever or chills, etc). I've also wondered if I had pulled a muscle doing yoga. I'm not sure what is going on.
I am imagining that the pain is now somewhat lessened this evening ( I hope). I guess if things don't settle down soon, I will have to go see a doctor ( especially if there is any possibility of a kidney infection).
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 31007
User's local time:
2018 Jan 21 - 7:58 PM


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 Jan 04, 2018 7:35 pm    Post subject: Reply with quote

If you don't have any other symptoms that might be associated, it's not likely to be a kidney infection. It might be a kidney stone stuck in your ureter (that goes from the kidney on that side to the bladder a kidney stone can be felt at the back), but usually a kidney stone is a pretty serious pain event, and again, you should have had other symptoms (such as fever) by now. That risk is higher if you have been taking calcium supplements, or you have a chronic magnesium deficiency.

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.
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Mia lee

unknown IP

Joined: 03 Jan 2018
Posts: 4
User's local time:
2018 Jan 21 - 7:58 PM


Food Intolerances : Not sure: Inthink mushrooms, corn, red peppers. Still figuring it out.
Location: Ontario, Canada

PostPosted: Thu Jan 04, 2018 9:02 pm    Post subject: Reply with quote

Thank you Tex.
You have thoughtful input.
I'm hoping it's not a kidney infection.
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