Newbie with Microscopic CC

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Camie
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Newbie with Microscopic CC

Post by Camie »

New here to this forum.I am grateful for the info and support.

I have been recently diaginosed with Micro CC. I was in the denial mode with the chronic D. I was sure i knew just how to cure it. I am a retired R.N. lol

Well, after a few weeks of anti depressants and antianxiety med I was able to finally get a colonoscopy.


Dx confirmed and I was sent home with a script for Bentyl and a high fiber diet.
I understand the concept of a high fiber diet.......
not working.

So, in the interval that I first sought treatment.........my lost his job of eighteen years. So what about health insurance.There are few jobs for him in our city. We have a son ready for his senior year in highschool and two elderly parents in nursing homes. Relocation is really not an option.


New job for my husband but in another city Away mon- thur.



This past weekend friday the 13 my mom passed.


I am so new to this disease and I am getting slammed with stress after stress.

So right now the intestines are so out of control. I am being held prisoner by my bowels.

I have been trying to eliminate gluten............been lactose free for years............
tried pepto bismo

What a mess,

seeing the GI doc on July 21 post colonoscopy.

I welcome any advise

Thanks
Camie
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Post by Camie »

my mom passed on July13
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Post by Zizzle »

Wow, Camie, you've been through the wringer! My grandma-in-law passed this Monday. Wake is tomorrow, funeral Friday. My intestines are a mess, despite my diet. If you are trying to go gluten free, you will most likely see better results if you cut out milk/dairy/casein protein at the same time. For us, it's not just the sugar in milk, lactose, that bothers us. It's the casein protein, so even yogurt and cheese are off limits. Most here can't tolerate soy either.

Unfotunately, anti-depressants (SSRIs) and many other meds (NSAIDs, PPIs) are known to cause MC, so you may not get relief if you stay on them.

If you do want a medication to help you get this under control, endocort is by far the most effective option for MC.

Let us know what your doctor suggests, and be firm...fiber is not a treatment for MC! In fact the fiber in raw fruits and veggies is often too rough on our inflamed GI tracts. If you're lucky, your doc may be enlightened about the role of diet in MC. Heaps of research point to the gluten connection.

I hope you get some relief soon on all fronts!
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Post by tex »

Hi Camie,

Welcome to the board. I'm very sorry to hear of all the problems that have recently bombarded you, especially the loss of your mom. I wish I could tell you that controlling this disease is a simple matter of changing your diet, but while diet is indeed the key to remission, unfortunately there's nothing simple about all the changes that most of us have to make to get our life back. Except for some of us who have drug-induced MC, most of us are sensitive to gluten and (as Zizzle pointed out) casein, and at least half of us are also sensitive to soy. Some of us have many other food sensitivities, as well.

And the really bad news is that stress plays a huge role in this disease, and since the symptoms of the disease itself are extremely stressful, it often becomes a self-perpetuating syndrome.

Even if a drug did not initially causes your MC, if you're taking one or more that are causing inflammation, it will be virtually impossible to achieve remission without avoiding the use of that drug (or drugs). A few of us are lucky, though, and discontinuing the drug will bring lasting remission without further intervention. Drugs known to trigger MC include NSAIDs, PPIs, SSRIs, SNRIs, statins, antibiotics, bisphosphonates, calcium blockers, and a few others.

I also agree with Zizzle that prudent diet changes plus Entocort is the fastest route to remission. You can probably do it by diet alone, but Entocort will mask the symptoms and help you to get your life back sooner, because it usually takes at least several months (and usually more) for the gut to heal enough for the diet to begin to suppress 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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Post by Leah »

Welcome Camie. I'm so sorry for all the bad things that have hit you all at once. However, you have come to the right place for advise. I also have CC. Was dx in February. This site has been a god send! High fiber? Are you kidding me? You should be doing the exact opposite! it's truly amazing how clueless GIs can be. Mine wasn't much better. There is a lot to learn and the best thing to do is go back in the history of this forum and read, read, read what everyone has to say.

In a very condensed version:....you will soon see that we ALL are gluten free. Most of us are dairy ( not just lactose) free, at least half are soy free and some are also egg free. Those are the big four and they are the ones that case the inflammation in your intestines. Then there are the "aggravators". These are fiber foods such as raw fruits and vegetables ( salad), tomatoes, peppers, corn....etc. Some have more intolerances than others. Your gut just cannot handle these foods right now. When in a flare, we all scale back to "the basics" again.

Many of us also take a drug called Entocort ( budesonide). I started taking three pills a day when this all started and it worked wonders... BUT if you don't take the offending foods out, you will never truly get your life back. I am now down to one pill every OTHER day and am starting to "test" some of the aggravators. Sometimes I go into a mini flare,but I can usually get back to being pretty good within a week. What is good you might ask? Well, for me it means that I only go once a day. It's not always a perfect "norman", but this is the nature of the beast.

Dealing with this disease takes time, planning,and PATIENCE!

You may be thinking right now "what can I eat"? Well, the best approach is to eat a simple as possible at first. Chicken, COOKED veggies, rice. For some people, potato works also. I can eat all meats successfully. Others have problems with certain ones. Homemade chicken soup with carrots feels wonderful when you are at your worst.

One more thing, there is a food intolerance test you can do from a lab called Enterolab. Check out there website.It is a faster way of finding out what you should and should not eat. But it can be costly.

Good luck Camie and feel free to ask anything
PS Stress makes this disease much worse

Leah
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Post by wonderwoman »

Camie, Gee you do have a full plate. But you have come to the right place. Just hang in there and ask questions. You will find the help you need right here. We've all been there.
Charlotte

The food you eat can be either the safest and most powerful form of medicine, or the slowest form of poison. Ann Wigmore
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Post by maestraz »

Camie, I am so sorry about your Mom. My mom died last August after 12 years of Alzheimer's. I managed to hold it together until after her memorial service, then my LC flared big time. In my experience, there is a definite MC/stress relationship.

If you have MC, fiber is probably not your friend--too irritating to the colon, and you probably need to be reducing fiber, not adding it. I was diagnosed with LC in March 2011 and I still have to be careful about limiting fiber/salad/raw veggies and fruit to a couple of servings a day. Others here will tell you they can't even do that.

I have been gluten/dairy/mostly soy free since my diagnosis. I cannot describe to you how much better I feel.

Also, in the experience of many on this board, including me, you need to have a conversation with the GI doc about Entocort ( generic name is budesonide) a steroid that targets inflammation in the gut without the whole body side effects of other steroids. It helped me immensely to get things settled down and regain control.



Lucky you, to have found your way to the many knowledgable
folks on this board. You will be glad you did, as I have been.
Suze
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Post by fatbuster205 »

Welcome Camie and condolences! This disease seems to court adversity and stress! I too am a relative newbie and have ongoing problems but the people on here are really supportive and provide amazing advise which has already enabled me to have a really good consultation with my doctors who are being very supportive - I am in a minority here in that my consultant and my GP both listen to me! I haven't gone GF yet - but we have discussed it so at least it is on the radar! However, they want to rule out (or in) a few things and have asked me to take it one step at a time. The only diet change I have initiated so far is caffeine and alcohol as the dehydration is causing impaction with me. I figure they too are trying to take onboard what I'm telling them but they need their scientific blanket! I totally agree with chicken soup with carrots - I have been eating a lot of it lately and while I have ongoing symptoms the comfort that soup gives me...!
I'm really glad you have found this site and the amazing people on it. Take care! Anne
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Post by nancyl »

Camie,
I am so sorry about the loss of your mother. I was thinking of mine today who has been gone for many years. Still miss her.

The others have said it all. I just want to add that until I gave up gluten, dairy, soy, and at that time eggs, all veggies, fruits, sugars then went on Entocort, I couldn't see the light at the end of the tunnel. Now, after a year of healing and some medication (Imuran), I am able to tolerate salads, fruits and a lot of the foods I stayed away from for a year.

Whenever I get stressed I don't usually have D, but do have several bm's. I can feel the difference.

Don't give up. My advise would be to ask your doctor for Entocort and read all you can on this forum and ask as many questions as you want.

Nancy
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Post by Lesley »

Camie,
I am sorry you have so much to contend with, and MC on top of it is insult to injury.

I am one of the people who was eating chicken and rice and NOT getting better. I discovered via enterolab that chicken and rice are the very worst foods for me. I also discovered that ALL poultry is bad for me.
I can eat mostly lamb and beef, and white fish such as cod and tilapia. I am fine with WHITE potatoes. Red, purple and sweet potatoes have way too much fiber for me.

If you try the chicken and rice diet and are not getting better then change your source of protein and grain. I also can't do corn, so my only starch is white potato.

Every one is different, and what is a safe food for one is not a safe food for others, including those deemed safe almost universally, like chicken and rice.
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Post by carolm »

Welcome Camie,
I am sorry to hear about your losses. You are also in the 'sandwich generation'-- still raising your own kids while caring for elderly parents. What could be more hectic?

Like the others have said -- fiber is counter-indicated. I also lived on chicken broth, baked chicken, white rice, potatoes and well cooked vegetables like carrots and green beans. Eventually I added ground beef. Eating simply is key. Entocort was also a huge help for me-- it reduced the inflammation so that I could function while I figured out what to eat and not eat. I had my diet in order by the time I titrated off of Entocort.

Take care of yourself more than ever at this time. Cut yourself some slack. Don't expect perfection or expect that you are going to be able to keep up with the usual demands. Stop and deep breathe, meditate, whatever helps you get calm and centered.

Keep in touch,
Carol
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Post by C.U.B. girl »

Camie,
I am so sorry about the loss of your mom! You certainly do have an enormous amount of stress going on right now, but you have come to the right place for help. I am relatively new to all of this too -- symptoms started in March but dx didn't come until late May, but by then, thanks to all of the info on this forum, I pretty well had figured out it was some form of MC (I have CC, like you, plus celiac disease). I can understand how, as a retired nurse, you may have come to put your faith in doctors knowing what they are doing, but when it comes to MC, most GI docs are clueless! Most of the helpful info I've gotten has been on this forum; there are some wonderful, compassionate folks on here who have "plowed the field" before us and can offer far more helpful advice than our doctors.

I agree with Lesley, that you definitely have to find out what foods are your triggers and aggravators, because our systems are all so unique. Certainly gluten, dairy, and soy need to go -- but if I tried the chicken, carrot, and rice therapy that are helpful to some, I'd be running to the potty again, because I am intolerant to all three of those! Testing for your food intolerences may have to wait a bit until some things settle down around you, but in the meantime, when you go back to your GI on the 21st, be insistent that he/she looks into Entocort instead of Bentyl. And fiber? Oh my gosh. Prescribing that for someone with MC is like prescribing acid to treat a bad burn! In the case of this disease, you will have to educate yourself so you can educate your doctor, who may or may not be willing to listen.

At any rate -- I pray you find comfort and peace in the loss of your mom, and that you find the help you need with your CC here on this forum.
Blessings,
Cindy
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Post by Polly »

Hi Camie and Welcome!

I see you are a fellow medical professional. I am a pediatrician who has had MC for about 12 years now, managed with diet alone. You will likely find more info here to help you than you will from your health care providers. Despite being Hopkins-trained, my GI doc was clueless about the food connection to MC, although in recent years she seems to be more interested when I tell her how I am managing. If not for this website, I think there's a good chance I would still be sick.

Here is something I wrote some time ago - a list of what we wished our GI docs knew about MC (which was compiled from our collective experience here):


What We Wish our GI Docs Knew About MC

1. Suffering from diarrhea 24/7 is a life-altering experience. It is NOT a “minor inconvenience”, nor is it something anyone would wish to “live with”.

2. Every colonoscopy MUST include multiple biopsies from various areas of the colon.

3. A diagnosis of Irritable Bowel Syndrome (IBS) cannot be made without multiple biopsies of the colon that rule out MC.

4. MC can affect anyone…..from toddlers to pregnant women to seniors. Even dogs have been diagnosed with MC and prescribed Entocort!

5. Fiber does not help MC.

6. MC does not “go away” or resolve after several years. However, its symptoms can be managed successfully over the long-term with ongoing diet or medication or both.

7. Almost ALL with MC also have food intolerances, primarily gluten, but often other intolerances like dairy, soy, yeast, etc.

8. The gluten sensitivity that goes along with MC is NOT picked up by the classic tests for celiac disease (endoscopy, blood tests for IgA antibody or tissue transglutaminase). These tests will be negative. However, it is just as severe a sensitivity as it is in full-blown celiac disease.

9. Entocort must often be used longer-term than the literature would indicate………up to a year and even longer if an elimination diet is not being followed. Also, it must be maintained for longer periods before it is tapered.

10. The research, lab tests, and recommendations that have been most helpful to date to those with MC (after initial diagnosis) are from Dr. Kenneth Fine (www.finerhealth.com). Dr. Fine performs STOOL antibody tests for gluten, soy, yeast, dairy, eggs, etc. to determine food intolerances which must be eliminated. He also performs genetic testing and has found specific genes (other than the classic DQ2 and DQ8 for celiac disease) that predispose to gluten sensitivity.

Looking forward to future chats as you devise your own, individual path back to health.

Hugs,

Polly
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Post by coryhub »

Hello Cami,
Welcome!
I'm sorry you are dealing with the reality of this disease and at the same time you are dealing with other stresses.
You may want to get a prescription for Entocort to help get this flare up under control and then roll off it slowly. I am on Entocort now and wish I could stay on it forever but then I would become immune to it, plus I would never stick to my diet of safe foods and start to heal.
I've been working up my list of "safe" foods two years now so it is not a quick fix but an ever shifting and sifting of information process.
Good luck and hope you get some relief from everything soon,
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Camie
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Post by Camie »

Thank you for your kind words and thoughts. What a wonderful group of people. I am a stranger to you and yet you have all been so kind and supportive. This is an amazing group of people!

There is no doubt in my mind that my current flare is defintely related to the level of stress in my life. It is a circular pattern. Stress leads to flare......flare leads to more stress......and then more stress leads to more of a flare up.

It is unfortunate that I need to be on antidepressants. I know this can be a contributing factor, but at this point in time there is no other option.

I am glad that others think a high fiber diet is just so wrong. I liken it to being asked to add razor blades to your diet.
:(


I have been lactose free for many years
except when I cheat........and then pay the piper of course.

I am going gluten free...........and I dearly love gluten.

I am eating so little these days I am happy when I eat...........hard to imagine with so little eating that I have to restrict myself.

Chicken and rice here.

Need advice or a link to the elimination diet

Thanks again for your kind words and support
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