Newbie --thanks

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Cyn
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Joined: Fri Mar 28, 2014 10:02 am

Newbie --thanks

Post by Cyn »

Hi Everyone!
I am a Newbie! I had a colonoscopy this past Monday, for diarrhea, cramps, since September of last year. I have biopsies which showed microscopic colitis. I will be seeing the GI doc at the end of next week.
I have had somewhat of a lactose intolerance for years. I cannot do milk. Lactaid milk also reacts with me. Greek yogurt had been great. Ice Cream -ok, soft serve --depends on where I get it. I love cheese-no issues with it. At least to my knowledge.....
I stay away from the cabbages.
I have loved salads--sigh-have not had one for months!
Immodium, even at 3-4 times a day did not help me with the D and Cramps..
I started some probiotics. I think they helped a bit, but I was eating blander then.
Never had a problem with bread, or baked goods.
I use almond milk for coffee.
Ok--enough of my previous diet.
I have been searching this site and the web, since the diagnosis. I have learned a lot.
I have taken a lot of NSAIDS for a broken upper arm (2 years ago) and recently some because of the Surgery I had on that same shoulder, in early Feb.
I originally attributed my D, C, and G to starting Cymbalta---that was prescribed to help with muscular skeletal pain and my long standing depression and anxiety. It seemed the minute I started the Cymbalta, is when the nausea and MC symptoms started. I stopped it in December and still continued with the issues.
I also have hypothyroid, osteoarthritis, Raynaud's, Asthma and allergies--seasonal and to my cat. It seems my resistance to bugs is just about nil. I have recently said that my body is giving up! I have wondered if I have an autoimmune issue---and that was before the MC diagnosis!!
I have been under a lot of stress for the past 2.5 years...too much to go into....

It seems the past couple of days the MC symptoms are returning....I am trying to wait until Thursday, when I see the doc, to see what he says..He did the colonoscopy. When I mentioned the reason why I was having the procedure (not just routine or overdue), He said that it was good I did tell him about the D because he would do biopsies, otherwise he would just have done his routine. I am sure my PCP did put the request in a diarrhea.. I just followed up on it. I was expecting polyps, which is what my dad had...although the last years of his life, he seemed to have colitis type symptoms..He passed 2 years ago and I was his caregiver. He lived with me. He was 3 weeks shy of 91 yrs old. enough of that....

sorry for being so long winded...

I really wanted to know if there are specific questions, thoughts, ideas which I should be aware of when I go to see this GI doc?
New territory for me. You guys seem to be so knowledgeable.
thank you for adding to your group....

:pigtail:
Cyn
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Zizzle
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Post by Zizzle »

Welcome Cyn!
I hate to say it, but you have quite the recipe for MC:

NSAIDS and antidepressants can trigger MC.
Raynaud's is considered an autoimmune phenomenon.
Have you been tested for anti-thyroid antibodies so Hashimoto's Thyroiditis has been ruled out as a cause of your hypothyroid?
Being allergic to your cat means you are in a constant inflammatory state. Do you take antihistamines daily to deal?
And then there's stress -- a biggie for all of us MCers and those with other autoimmune issues.

Welcome to the family!!

First off, make sure you get a copy of your pathology report from the GI doc. Your doc will advise you to quit all NSAIDs, as they are totally contraindicated in MC. If you're really uncomfortable, you'll want to talk about possible meds. Entocort, a steroid that stays somewhat confined to the GI tract, is effective for many people, but you'll need to adjust your diet to wean off of it (it's generally not a forever drug). As you've probably read, we all have to identify our food sensitivities, which often start with gluten, dairy, soy, and sometimes eggs. There can be many others, but you may want to start there. Your GI may be willing to send you for food allergy testing, which may not turn up anything, but since you have some known allergies already, you may have some food ones. A doc could order IgG (delayed food allergy) and IgE food allergy testing. If you're really lucky, your GI may be willing to write you an order for food sensitivity testing from Enterolab.com. A doctor's order makes insurance coverage more likely.

Don't be surprised if your GI says diet, particularly gluten-free diet, have nothing to do with MC. If he acknowledges diet, you've found yourself a good one!
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
Leah
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Post by Leah »

Welcome Cyn.
I first want to advise that you buy Tex's book about MC. Just click on it in the upper right hand corner of this page to get to Amazon. it will make understanding this complicated disease easier.

Don't be surprised if your doctor doesn't believe in the food connection to MC. Most don't. But we here, on this forum, know better. Entocort will help with the symptoms, but if you don't rid your body of the foods that cause inflammation, remission will be short lived. When the MC gene is triggered, so are food intolerances…. some of which you were not aware of before. Over 99% of us can't have gluten. The antibodies we produce to it can last up to 120 days, so it's hard to see the connection right away. Dairy should also be taken out of the diet.

We are all different in what we can and can not eat and if you can afford it, the test at Enterolab ( google them) will help you get to the answers more quickly. It sounds like you have a tremendous amount of inflammation throughout your body. it will only get worse if you don't get a handle on your diet.

It takes a while to heal. Even those of us who eliminate everything we think might be a problem, don't see the the results the'd like to. Over two years ago, I was dx. and did decide to go on Entocort. It worked great for me, but I overhauled my diet at the same time so that when I weaned off of it, I didn't relapse. As I healed more and more, I was able to test foods back in with success ( like salad, raw vegetables, beans, spicy foods, some sugar…etc) but still remain gluten dairy, and soy free. I am happy to report that I only have one morning BM a day and the only drug I take is anti-histamines.

Ask any question, we are all here to help.
Take care
Leah
Cyn
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Post by Cyn »

Thank You Leah and Zizzle!
It has been a warm welcome...
Yes, I know it is a long road ahead of me. It seems so daunting.
I forgot to add that I had a case of shingles in December!!
It has been tough...a lot of auto immune things happening to me.

I do dread going on the elimination diet. I am not fond of chicken, plain potatoes or bananas.
Bananas always seem to give me gas...and bloating.

I adopted my cat about a 3 months after my dad passed. I felt lonely. I even discussed it with my dad before he passed. My Cat is my 'therapy' cat....He has helped me so much with my loneliness...

Well, I guess this is going to be a new chapter in mi life..

So, docs do not believe there is a link between food sensitivities and MC? What about the IgA???
the genetic factor?
Yes, I have been lurking and reading around....

I do have a notebook with a list of things to ask. Hopefully, I will not be intimidated.. I have a tendency to...

FYI, I also forgot to add that I was terminated from my job of 15+years, two weeks before surgery from a job induced accident which broke my arm.. and, I was employed at a major teaching hospital in Boston.
I have added stress because I have to re-invent myself...I know I will not be able to perform the job/career which I have been in for 30+ years......so more added stress to me.....I ams till undergoing physical therapy and are still under workman's compensation!
so sorry to vent...
The past 2 years have really been a physical/emotional strain to me--no wonder I came down with some kind of GI issue.

I have had thyroid problems for years. Started out as an infection, Thyroid burnt out (was hyper) then turned to hypo..Sounds like Hashimoto's to me.....

Thank you for listening to me. I do ramble....
I am really kind of scared of this new diagnosis; especially when my own PCP referred to it as a 'disease'....sigh..
thank you again
:cat:
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Gabes-Apg
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Post by Gabes-Apg »

Cyn
healing hugs for what you have been dealing with these recent years

:bigbighug:

take some deep breathes and dont be scared. Feel reassurance that others have faced similar journeys, and have come through AOK.
take it a day at a time.

There are some wonderful, supportive people who have done the 'hard yards' of MC, and can guide you.

Try to embrace the idea of plain bland diet, and working from there. It works, it is affordable and listening to your body is the best indicator that you have.
agreed -the sucky part is that it takes time, then again for those of us that stayed with the plan, majority get the full benefit, our bodies heal and the sun shines again!

take your time, there is loads to try and digest (pun intended :lol: )
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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Lesley
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Post by Lesley »

Cyn, welcome. We have all been where you are. Many of us have actually reached a level of healing that allows a normal life, e.g. working, socializing, traveling, eating out etc.
For most people it takes time. Some of us, though much improved, have not reached that level, and man of us suffer flares.
However, once we discover what makes us sick and cut it out we can vastly improve.

The people here are super supportive and helpful. You will never be without a place to bitch and moan and receive warm hugs in return.
Leah
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Post by Leah »

You don't have to eat bananas Cyn. I don't. They have always given me problems. Actually, almost all fruit does in any quantity.
Chicken isn't the only protein you can eat either. When I did my elimination, I ate all kinds of meat ( beef, pork, fish, chicken, lamb…etc.) … and still do. I also kept eggs in. It was one of those decisions that I made because I was so use to starting my day with them, I figured I'd try to heal with them in and if not, THEN I would get rid of them. Luckily, I never had to drop them.

Some people here have had to also drop most grains, ( Paleo) but many of us ( me included) can eat rice and corn products, so that helps a lot. GF Chex with almond milk was another mainstay when I was healing. Some of us can eat white potatoes ( nightshades), some can't. I didn't for the first 6 months, but have been able to add back in. As you can see, it's not an exact science, but there are some definite similarities to our MC diets.

Take a deep breath. You can do this. And if you do find the right anti-inflammatory diet, then maybe some of your other AI THINGS WILL GET BETTER ALSO! Wouldn't that be great? I know that some people have had a huge reduction in their arthritis symptoms after being gluten free for a while.

Again, don't worry about rambling. We have all been there. It's daunting at the beginning. One step at a time.
Leah
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tex
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Post by tex »

Hi Cyn,

Welcome to our internet family. We consider ourselves a family because no one truly understands this disease unless they have it. You've already received some very good, supportive suggestions, so rather than to add to those, I'll just mention that whenever a food (such as the bananas that you mentioned) cause you to have gas and bloating, then just as Leah pointed out, that's a sign that you would be better off avoiding them, and/or replacing them with another relatively bland food choice that you can tolerate (IOW, one that doesn't cause such symptoms).

Wow! Your former employer certainly handed you a raw deal. With all the combined stress that you've been under, your situation has provided a perfect storm for the development of MC and other autoimmune-type issues. I hope that you will be able to turn the situation around by determining which foods in your diet are still causing the inflammation, and avoiding them, so that your digestive system can heal, and allow you to get your life back.

Please be aware that as Zizzle mentioned, if you are having allergy issues, then taking one or more antihistamines can not only help with the allergy symptoms, but doing so may also help to reduce some of your GI issues, because mast cell activation releases histamine that not only causes allergy symptoms, but the excess histamine can also cause GI symptoms. This is another issue that your GI specialist is not likely to be aware of, and he may deny the connection.

Again, welcome aboard, and as Leah mentioned, please feel free to ask anything. Yes, until we get it under control, MC tends to be an isolating, debilitating disease that can cause us to feel hopeless, and all alone in the world. But you're no longer alone — as Zizzle pointed out, you're now a member of the family here, and together, we learn improved ways of controlling the symptoms of this syndrome, so that it no longer controls our life.

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.
Don Allison
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Post by Don Allison »

Hi Cyn
I am new like you at least to this so far great group of very understanding young
People. I am 78 and have no children. Now far a number of years I have had to TRY
to deal with my wife either with Alzheimer's or schizophrenia. As many people really
Do not understand schizophrenia and so the very few kin and other people prefer to
Treat us as if we had leprosy. Back in Sept of 2013 I was told I had MC. But with the
stress I continue to deal with I feel Wayne is right that could my main problem. But
Of course now the MC has gotten me to the place sometimes I think about getting
A smaller bowl to sit on for fear of being so weak I might just flush myself. I need to have
Test run to help pin down if it is now gluten or something else PLUS STRESS!! And I
Feel very lonely more and more because my wife has very little emotions or interest.
I must be on guard all the time to what she may be doing. She talks about people
In the closets or elsewhere but there is no one. I am beginning to think I am like a
Dog going in circles chasing my tail.
People are quick with what to do because they do not understand. See a doctor
But that is a real problem with mental problems. The person will not go because that person
As my wife claims nothing wrong. No doctor no medicine so here I am. Oh, she has
Been in the hospital about seven times and now worse for having been.
I now feel that I to have been saying too much, but thought maybe you Cyn
Might realize most of us have problems and I will try to be comfortable reading what
Others share. We did get a small dog couple of years ago and his is a comfort. He senses
Something wrong with my wife at times and sticks close to me. So Cyn, my age with MC
And a wife with her problems does not help you really as it is my burden but I will
Say no more than to say I as you am pleased to have found fellow folks with MC that
Do understand and their sharing has eased me because now we can agree we are not
The Lone Ranger!!
No idea what you mean!!
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nerdhume
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Post by nerdhume »

Hi Cyn,
I am new here also. You story sounds a lot like mine.
I have my MC under control with Uceris. I will be taking that for 2 more months and try to modify my diet so I will be able to come off it without a major relapse. After WD since November I am just enjoying being able to have my life back right now.
Anyway welcome aboard, this group has been a godsend for me. There is a world of good info here, and everyone is so nice and willing to answer questions.
Theresa

MC and UC 2014
in remission since June 1, 2014

We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Cyn
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Post by Cyn »

Thanks again.
I just ordered Tex's book from Amazon.

Now to get some meal ideas....I will keep searching!!

You guys are so supportive!

Yup, it started up again late yesterday. Immodium last night. Grumbling again today. Will stay around the house with a short trip for errands.

I need to decide how to make up a food journal.
Yes, I do attack things; then I 'poop' out--- :razz:

Thursday is the day for the doc...don't know how much info I can get from him---it is only 15 min appointment!!!! ugh!
His secretary assures me that he will spend as much time as I wish with me?????!!!!!
I don't know about that. My PCP is in the same group.
It is a group of internists with interests in GI issues. He is the main one..so I will check him out. The office is affiliated with a major Boston Teaching Hospital and this guy is a instructor at Harvard Medical....we will see....
ttyl--now to lurk some more!!!
:didimiss:
Leah
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Post by Leah »

Cyn, you can do your journal any way you'd like. It's probably a good idea to make sure you put the time you eat/drink something and also record any feelings of discomfort, pain, gas, bloating, noises, and of course BMs and their consistency. I know, weird…. but it's a great tool for figuring it all out.

Let us know how your doctors appointment goes. You might want to write down everything you'd like to discuss with him/her so you don't miss anything.

Leah
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Post by Pat »

Cyn,

If bananas bother you don't eat them. I never did well with chicken and rice and I thought it must be the rice. No, it was the chicken! I also can't eat beef. I can eat turkey and some fish. You will have to play around with it or get the Enterolab tests.

Check out www.Stopthethyroidmadness.com I have recently been dx with low thyroid (low T3) and have been on NP Thyroid for a month now. Am doing so much better! I also am taking Low Dose Naltrexone (LDN). My doctor thinks the thyroid med will help my colitis too!

Pat
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tex
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Post by tex »

Hi Don,

Welcome to our internet family. I certainly agree with you that stress is a major part of your MC. Any type of chronic stress is bad, but the worst type seems to be the kind over which we have no control. And unfortunately, life sometimes throws us a curve ball that we simply cannot dodge.

All we can do is hope that someday, someone will figure out a way to neutralize the effects of stress, and when they do, IMO the current epidemic of autoimmune-type syndromes will promptly begin a steep decline.

Some communities offer special services on a county or municipal level (or through certain churches) that can provide assistance in the form of caring, qualified caregivers/companions who can take over for maybe half a day or so, a few times each week, to allow caregivers such as yourself some free time to devote to their own needs, and to just relax for a while. Sometimes that free time can do a world of good to help relieve stress. And as you point out, just sharing time with others who have similar challenges can help to lower the stress level.

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

Tex (Wayne)
: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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