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complications of untreated MC

 
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lpete301

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PostPosted: Fri Sep 30, 2011 4:31 pm    Post subject: complications of untreated MC Reply with quote

Can anyone tell me if there are any complications that are related to under-treated or untreated Microscopic Colitis? I have searched the boards for that question and have not been able to find it. I finished the antibiotic that my doc gave me and a few days after the pain, gas, diarreah, and not wanting to eat began. I cant sleep, am losing weight again and am afraid to eat. I have been dealing with this for almost 6 yrs with no real treatment. My doc just figured out the MC, but it has not been dx'd by colonoscopy and microscopic exam.

I am worried that if I dont get this under control that some kind of permanent damage could be happening.

Besides being dehydrated and malnourished and afraid to eat that things could get worse.

Linda
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dx'd with IBS and Fibro 2006, MC 2 days ago. prob have combo mostly MC and slight IBS. I knew it was not IBS. Linda Peterson
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tex
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Food Intolerances : Gluten, casein, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), grapes, peanuts, cashews, almonds, (probably all nuts)
Location: Central Texas

PostPosted: Fri Sep 30, 2011 7:45 pm    Post subject: Reply with quote

Hi Linda,

Well, besides the suffering and inconvenience that goes with not treating the disease, the odds of developing additional autoimmune diseases are increased. If you're sensitive to gluten, (which most of us are), you run the risk of neurological damage. I have ataxia and peripheral neuropathy, for example, that I'm almost positive was caused by too many years of being sensitive to gluten, and not treating it, (because I didn't realize that was the cause of my symptoms). The doctors claim that it is a benign disease, but I believe that's only true if no complications are present, and most of us have complications. It's definitely a life-altering disease. Be sure you stay hydrated, because dehydration can get serious in a hurry, sometimes.

There's also a risk of damage caused by long-term vitamin and mineral deficiencies, due to the malabsorption problem that the disease causes. Vitamin B-12, and vitamin D, are especially prone to becoming deficient, and that can cause various other health issues. A vitamin B-12 deficiency can cause anemia, and a severe deficiency can also cause damage to the central nervous system, and the brain. A vitamin D deficiency tends to compromise the immune system, which make us vulnerable to other diseases, and infections, and interferes with healing. During a flare, most water-soluble vitamins are lost, and the malabsorption problem usually causes problems with fat absorption, also, which can cause a deficiency of fat-soluble vitamins, as well.

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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lpete301

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PostPosted: Fri Sep 30, 2011 8:40 pm    Post subject: Reply with quote

I guess I am wondering this:

If Microscopic Colitis is inflammation on a microscopic level, can it cause scar tissue or any other permanent damage?

I understand that it is unlikely to cause cancer so that really isn't a concern. I am already on Vit D and a decent amount of B vits. I drink water all day long mainly to avoid ending up getting IV fluids again, which happened a couple of years ago. It just seems odd to me to have inflammation all the time with out it causing any long term problems if the inflammation is not relieved.

Linda
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dx'd with IBS and Fibro 2006, MC 2 days ago. prob have combo mostly MC and slight IBS. I knew it was not IBS. Linda Peterson
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sarkin
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Food Intolerances : Gluten, dairy, eggs (maybe more?)
Location: Brooklyn, NY

PostPosted: Sat Oct 01, 2011 7:11 am    Post subject: Reply with quote

Linda,

The nature of MC inflammation is not limited to the gut - it can affect virtually every system in the body. So arthritis, migraines, osteoporosis, skin problems, thyroid issues, lupus, fibromyalgia - and many more autoimmune issues - can all be caused or exacerbated by untreated MC. Untreated celiac patients have an increased risk of lymphoma as well (and quite a few of us, by no means all, are probably undiagnosed celiac patients - along with some who do have a celiac diagnosis... again, that's not all of us).

Once your gut begins to heal, those risks are drastically reduced, and some issues may resolve entirely.

Hope this helps,
Sara
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tex
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Food Intolerances : Gluten, casein, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), grapes, peanuts, cashews, almonds, (probably all nuts)
Location: Central Texas

PostPosted: Sat Oct 01, 2011 9:35 am    Post subject: Reply with quote

Linda wrote:
If Microscopic Colitis is inflammation on a microscopic level, can it cause scar tissue or any other permanent damage?


No, just as you surmise, MC will not cause gross intestinal damage, per se, in the way that the other inflammatory bowel diseases do. And, while there is a slight chance that it can lead to one of the other IBDs, that chance is very, very small and only slightly higher than for someone in the general population.

It is causing some degree of long-term damage, though - it's just a relatively small effect, so that the damage is accruing at such a slow rate that it's usually not noticeable. You will notice the effects over the years, as you slowly add other autoimmune disease diagnoses to your medical record.

The primary risk lies in the fact that it forces your body to deal with a general state of inflammation, on a long-term basis, which can have very detrimental effects on long-term health. And, probably the greatest risk, is that it forces the body to survive with a chronic malabsorption problem, that can either selectively, or globally, interfere with the absorption of vital nutrients. In addition, it also causes the accelerated loss of certain nutrients, such as electrolytes, which are actively secreted into the lumen, during episodes of secretory diarrhea. The effects on the body can be devastating in some cases, and very slight in others. When I was reacting, I aged more in 2 years, than I had during the previous 10 or 20 years. And much of that was permanent - I didn't suddenly become "young" again, after I controlled my symptoms, though getting my symptoms under control definitely did make me look and feel much better. It definitely behooves us to control our symptoms, because there is nothing to gain by not controlling them, and there is a lot to lose, if we don't control them, not the least of which is quality of life, itself.

As Sara mentioned, every organ in the body is vulnerable to the threat of damage caused by a state of chronic inflammation. Which organs sustain permanent damage will depend on genetics and environmental factors, of course, so the effects are different for each of us. Which autoimmune diseases will be acquired, will be determined primarily by genetics, and by the length of exposure to inflammation, and other influences, such as chemicals.

In general, the GI docs are correct - MC is a benign disease. Unfortunately, though, some of the side effects, (satellite issues), that develop along the way, are not benign, and the sooner we get our symptoms under control, the sooner we cut the chances of developing those other issues.

That's just my opinion, of course, and as I hope you're aware - I'm not a doctor.

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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lpete301

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PostPosted: Sun Oct 02, 2011 5:46 pm    Post subject: Reply with quote

Tex, Your help is really really important and although your not a doc, you probably know more than most docs out there. I worked "against" a gastro doc for two years. He was no help other than finding out that I do not have the major IBDs. He ended up just sending me home with tons of different medicines, alot that are on the list of offenders for MC. He dx'd IBS, yet as I recently found out it is not just IBS. But I still need to have the biopsies to be absolutely positive about the MC. I have been under-nourished for years as I haven't been able to eat much of anything. I really am fearful of food. Ice water and coffee are my best friends and high calorie corn chips and 3 musketeers. I take multiple vits and minerals to try to keep something in me. But I never know what is going to set me off, its scary. The pain is severely debilitating. I have even been dx'd with Bi-Polar...of course who wouldn't have mood swings and bite everyones heads off when you are in so much pain. I have been hurting so much for so long that I dont know what it means to be pain free. I know I am always in a state of pain...every moment of every day. My home life is miserable and my family is paying the price. My husband is not happy at all...he doesnt get "fed" hardly at all. He tries to be understanding, but it is really difficult for him. My kids, well they are kids and want to be kids, so my house is messy and only gets cleaned well when I feel good enough to move.

Golly, I am rambling again...

Thank you so much for the information. I do feel better. At least I know that this wont cause so much scar tissue that nothing will be able to move through my gut at all.

I will be asking my doc this week to do the biopsies and get a positive dx. I am on SSD and only have 2 1/2 years before I come up for reconsideration. They will be looking at my case to see if there has been any improvement and I want to do everything I can to be absolutely positive of what is causing my pain and symptoms. I miss working and having a life and just being happy. I really hope that there is something I can do to resume some semblance of my life before all this. I hardly remember what it was like....
_________________
dx'd with IBS and Fibro 2006, MC 2 days ago. prob have combo mostly MC and slight IBS. I knew it was not IBS. Linda Peterson
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tex
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Food Intolerances : Gluten, casein, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), grapes, peanuts, cashews, almonds, (probably all nuts)
Location: Central Texas

PostPosted: Sun Oct 02, 2011 6:22 pm    Post subject: Reply with quote

Linda,

I hear you. My GI doc failed to take biopsies, also, 11 years ago, when my symptoms became intolerable. It seemed that anything and everything made me sick. I finally started keeping a food/reaction diary, and I cut gluten out of my diet, and eventually I figured out that I was sensitive to a bunch of other foods. I cut them all out, along with sugar, fiber, etc., and within a couple of weeks, I was in remission.

Incidentally, an MC diagnosis does qualify for SSD, whether the applicant has the symptoms under control or not - proof of disability is no longer necessary for someone with an IBD diagnosis.

I hope you can find a way to get your symptoms under control, and eventually, find a way to get your life back.

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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Lesley
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PostPosted: Sun Oct 02, 2011 7:19 pm    Post subject: Reply with quote

Linda,
I have also only recently been diagnosed, or properly diagnosed. I was given the dx of lupus and FMS in 2003, because they didn't know what had put me in the hospital, very, very ill. Biggest danger was my electrolytes, and I have been struggling to control them ever since.

I have been in pain so long I really can't remember a time when I felt well, and had none. I can only remember feeling relatively less pain, and that was before my back injury. At that time I was working and doing stuff, and generally functioning, although there was a lot of pain, and less and less energy.

Now? I have aged so much since then. I am always in so much pain, and so exhausted that doing anything some days is impossible.

I know how you feel. I understand how difficult it is to function in a family. I also understand how hard it is to figure out what you need to do to control this and not allow it to control you. I am not there yet, but the people on this board make me feel it's possible, eventually!
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mar516

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PostPosted: Thu Oct 06, 2011 12:16 pm    Post subject: Reply with quote

How can I tell if I'm sensitive to gluten?
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Mary Caridi
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karenswans
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Food Intolerances : gluten, dairy, soy, egg

PostPosted: Thu Oct 06, 2011 12:25 pm    Post subject: Reply with quote

You can have tests done here: http://www.enterolab.com/. Another option is to to do an elimination diet where you take your diet down to a very small group of foods, eliminating all the potential offenders including gluten. Then you test yourself by adding the food back to see if you react.

I'm pretty new here, and I'm sure the other members can give you more information, but you might want to start looking into Enterolab. I did it and just got my results back about 10 days ago.
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tex
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Joined: 24 May 2005

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2014 Aug 22 - 6:47 AM


Food Intolerances : Gluten, casein, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), grapes, peanuts, cashews, almonds, (probably all nuts)
Location: Central Texas

PostPosted: Thu Oct 06, 2011 5:58 pm    Post subject: Reply with quote

Mary,

I can't add much - Karen summed it up pretty well.

Here's a link to a description of the elimination diet, if you want to consider that approach.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=732

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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Sharaine
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Food Intolerances : Gluten, dairy, some soy, legumes, almonds
Location: Colorado

PostPosted: Thu Oct 06, 2011 7:33 pm    Post subject: Reply with quote

Linda,

Your eating habits scare me. I do understand how food scares you, truly I do. BUT, I would encourage you to eliminate all bread and cereal (wheat, rye, and/or barley), pasta, and so forth. Read labels and become familiar with what has gluten in it. You're going to be amazed. It's everywhere!

If you like traditional bread, go to Whole Foods, Vitamin Cottage or another health food store and buy gluten free bread. There's a Brown Rice Bread by Food for Life that I like.

Also, Sara hasn't mentioned this yet, but she lived a lot on chicken soup for a long while. I'm doing that now. Just do not make it with noodles. Chicken soup is comforting and it is also nourishing. There's no way 3 Musketeers bars are nourishing you.

You also mentioned your pain. I've found that giving up gluten and dairy has resulted in, generally, less pain in my joints including my hands that have carpal tunnel syndrome.

Last item ... you drink a lot of water and coffee. Water is good and coffee is okay in moderation. I'd encourage you to add a drink that has electrolytes like Gatorade or Sportsade. With your colitis flaring, the D pulls electrolytes out of your system. Electrolytes are important for your heart and your system to operate properly.

Good luck!

Sharaine
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