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First GI visit since diagnosis. Huge thank you to all of you

 
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pieroaj
Little Blue Penguin
Little Blue Penguin
unknown IP

Joined: 21 Mar 2017
Posts: 26
User's local time:
2017 May 28 - 11:27 AM


Food Intolerances : gluten, caesin, soy, and eggs
Location: North Carolina

PostPosted: Tue Apr 18, 2017 6:46 pm    Post subject: First GI visit since diagnosis. Huge thank you to all of you Reply with quote

So I had a colonoscopy mid-March 2017. Results came a week later. The nurse called and told me I had LMC and scheduled a follow up appointment for today. All I can say is this site is invaluable. Tex's book is invaluable. Because of this board, I did not have high expectations for today, but I was still surprised.

The doctor asked me a few questions about symptoms and pressed on my belly. She then asked if I had any questions. I told her that I had not seen her since the diagnosis over the phone, so I would just like her thoughts on MC. (I felt I should not have needed to ask that question). I won't repeat verbatim - but I heard things like...don't know cause, take Uceris, it may go in remission, it may not, take Uceris for 3 weeks if symptoms come back, avoid artificial sweeteners, may have gluten issues and you may not, eat healthy.....and "you are a smart woman, you will figure it out". She added it is not as bad as say Crohns or ulcerative colitis. I asked her about Vit D, she said it was not a concern because it is absorbed in the small intestines .... maybe she did not understand my question. At this point I didn't ask anything else. She left. Total time with physician, less than 5 minutes. Oh...and no need to schedule follow up, just call if I have any issues. Colonoscopy repeat in 10 years.

Well, I guess she was a means to an end. I do have a diagnosis now. Thank goodness for the internet. And a huge thank you to all of you for keeping this site up and running. There is so much needed and valuable information here. Thank you! Thank you!

I am thinking a new GI may be in order, but no rush on that I guess. Ordered Mg oil and already taking Vit D. I just ordered the Enterolab tests. I think that will help guide the elimination process. I "officially" restarted the Stage 1 eating plan yesterday (traveled for a bit and it all went out the window).

Guess that is it for now....mainly needed to vent. This made me a bit sad today. Again, a huge thank you to all of you! You are an invaluable resource and you provide direction when no direction is provided.

Many thanks,
Angela

p.s. I would have thought she would have given me a brochure, leaflet, pamphlet, something...... Confused Razz
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Marcia K
Rockhopper Penguin
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unknown IP

Joined: 03 Apr 2014

Posts: 788
User's local time:
2017 May 28 - 10:27 AM


Food Intolerances : gluten, dairy, tuna, chicken, oat, cashew, salmon
Location: PA

PostPosted: Tue Apr 18, 2017 7:16 pm    Post subject: Reply with quote

Hi, Angela. Welcome to our internet family! You've come to the right place for information and advice. You'll find, as most of us have, that we had to figure this out on our own. This group knows much more about dealing with LC than GI's do. Sit back, search the forums and don't hesitate to ask questions.
_________________
Marcia
------------
My mission in life is not merely to survive, but to thrive and to do so with some passion, some compassion, some humor and some style. - M. Angelou
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 6730
User's local time:
2017 May 29 - 2:27 AM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Wed Apr 19, 2017 5:02 pm    Post subject: Reply with quote

Angela
sorry that was your experience, sadly it is a very common one that we have seen others experience.

good luck getting back into the Stage 1 eating plan,

take care - happy healing
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Erica P-G
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Rockhopper Penguin


Joined: 08 Mar 2015

Posts: 1068
User's local time:
2017 May 28 - 8:27 AM


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

PostPosted: Wed Apr 19, 2017 5:45 pm    Post subject: Reply with quote

Hi Angela!

Boy have I been down that road....if you have been reading a lot you will have already come across a post I started when I first had to figure out how to do things that I couldn't get answers from a Dr. about http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21173

Hang in there, it takes time and healing will take perseverance and before you know it you will be feeling so much better Wink

Read, read, read, and ask lots of questions, that's how I maintained my sanity thru the last 24 months. I have made it to a more stable place in MC world. It helps to put yourself with like minded people who understand, it makes this journey seem to pass much more quickly and it keeps us on our toes to want to maintain healing Very Happy

I enjoy the friendship of this forum, more than many will ever know pulsing hearts
_________________
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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pieroaj
Little Blue Penguin
Little Blue Penguin
unknown IP

Joined: 21 Mar 2017
Posts: 26
User's local time:
2017 May 28 - 11:27 AM


Food Intolerances : gluten, caesin, soy, and eggs
Location: North Carolina

PostPosted: Thu Apr 20, 2017 4:50 am    Post subject: Reply with quote

Thank you Marcia, Gabs and Erica! It is really great that the people here know so much about healing. Also, I love the phrase "Happy Healing". Attitude is a huge part of any healing.

Erica, I had not read that post yet. I am about half-way through it now. Wow! It chronicles the beginning of your journey all in one post. That is really insightful. Also, the amount of support that is on the board is overwhelming.

On a funny note, I am laughing a good bit at how I interpret some of the info. Just as I thought Mg Oil Spray needed to be delivered via your nose, I also thought that when I read "eat the same thing every day" that it meant eat a bowl of white rice, maybe cooked in broth, with a meat you can tolerate. Every day for 3 meals. I know there is more info on the board for a little more variety.....but for whatever reason that was my take away. Then in reading Erica's post, she listed out 5 days of meals.....I thought "look at that variety" Very Happy

Again, a huge thank to all of you.

Angela
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jlbattin
Rockhopper Penguin
Rockhopper Penguin


Joined: 30 Jun 2015

Posts: 555
User's local time:
2017 May 28 - 10:27 AM


Food Intolerances : gluten, soy, dairy, egg, green beans, olive oil, raw nuts, and probably more but I'm still discovering
Location: Colorado

PostPosted: Thu Apr 20, 2017 7:52 am    Post subject: Reply with quote

Quote:
I also thought that when I read "eat the same thing every day" that it meant eat a bowl of white rice, maybe cooked in broth, with a meat you can tolerate. Every day for 3 meals.


Angela, that is exactly what that means. Many of us, myself included, ate the same thing for 2-3 months until we managed to get things under control. For me, that was chicken and rice (3-4 times a day). Nothing else but a banana. Once you get things under control, you can slowly add things back in and see how you do.
_________________
Jari


Diagnosed with Collagenous Colitis, June 29th, 2015
Gluten free, Soy free, Dairy free, and Egg free since July 3rd, 2015
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pieroaj
Little Blue Penguin
Little Blue Penguin
unknown IP

Joined: 21 Mar 2017
Posts: 26
User's local time:
2017 May 28 - 11:27 AM


Food Intolerances : gluten, caesin, soy, and eggs
Location: North Carolina

PostPosted: Thu Apr 20, 2017 3:04 pm    Post subject: Reply with quote

Ahhhhh.....thanks Jari. Maybe it was just wishful thinking on my part. Embarassed
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Erica P-G
Rockhopper Penguin
Rockhopper Penguin


Joined: 08 Mar 2015

Posts: 1068
User's local time:
2017 May 28 - 8:27 AM


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

PostPosted: Thu Apr 20, 2017 3:14 pm    Post subject: Reply with quote

HI Angela,

I resort back to the few foods eaten daily as often as it takes to have 'good' days, even after all the healing time I have worked hard at, I still have off days Wink

I know a lot of this info you will read will seem like the most bizarre stuff...but in reality it is healing many with intestine issues. It takes an open minded person to give this healing technique a try, and once it starts working and we start feeling better it becomes second nature to continue it.
_________________
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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skp
Little Blue Penguin
Little Blue Penguin
United States

Joined: 12 Jan 2017
Posts: 45
User's local time:
2017 May 28 - 10:27 AM


Food Intolerances : Gluten, dairy, eggs, soy

PostPosted: Fri Apr 21, 2017 10:06 am    Post subject: Reply with quote

My NC gastro doc has also not been helpful. Because this large group of docs is the only game in town, I am hoping for better from my internist in June when I have my physical. He is more in tune with diet and nutrition. I was diagnosed with LMC in early January of 2017. The doctor would only give me 2 1/2 months of budesonide so I am weaning off, thanks to encouragement from Tex and just started 1 every 4 days.

I commend you for committing to the Stage One Diet early on. I had given up gluten and dairy but was still making mistakes with those. My Enterolab results, because I had delayed in testing, didn't come back until mid February. I learned that not only did I have to be gluten and dairy free but also soy and egg free. Needless to say, I had been eating eggs and soy.

Basically, I lost more a month and a half of doing the right thing, due to my own mistakes and not having the tests back in a more timely manner. So, you are ahead of the game. The Stage One Diet, while sometimes hard, is crucial, I think. I do buy gluten free potato chips kettle cooked in avacado oil and munch them to bits, slowly. They are my crunch. Boulder brand from Whole Foods and Green Life.

This group is priceless. You'll never have better friends.

Susan
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pieroaj
Little Blue Penguin
Little Blue Penguin
unknown IP

Joined: 21 Mar 2017
Posts: 26
User's local time:
2017 May 28 - 11:27 AM


Food Intolerances : gluten, caesin, soy, and eggs
Location: North Carolina

PostPosted: Fri Apr 21, 2017 1:58 pm    Post subject: Reply with quote

Thank you, Erica!

Susan- Thank you! But I do not know if it is well deserved. It has only been 4 days. I have stuck with the gluten-free, soy-free (again, just 4 days), but dairy has been a challenge. That tablespoon of half-half I put in my coffee hasn't gone away. I think my brain does not wake up before that first cup - it is a hard habit. I have had a bit of reflux too, I am thinking it is rice, based upon my limited diet (happens about an hour after my eating rice&chicken (twice) and rice&pork. Chicken and sweet potato was fine, so that is my thought process, but who knows. I did request the Enterolab testing, so that may shed some light too.

Funny, I called an integrative medicine practice, that actually accepts my insurance, to see about a provider to work with. They took my name and number. Someone will call me next week, take an inventory of my symptoms and any diagnoses, and see if I am a good fit for them. Ha! Maybe the medical community is just different than what I thought it was before I needed it.....but that made me laugh.

I hope everyone has a wonderful weekend!

Angela
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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 6730
User's local time:
2017 May 29 - 2:27 AM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Fri Apr 21, 2017 5:26 pm    Post subject: Reply with quote

Angela
embracing the bland low amount of ingredients eating plan can be overwhelming at first, so far as eating the same meal 3 times a day, if you can do it - great, otherwise having two or three meal types that you alternate between is ok to.
the main thing is to come up with something that you enjoy/ be ok with, so that you can follow it for as long as possible.

there are lots of MC safe options for coffee.. coconut milk, almond milk. I managed to convert to having black coffee, if you use a mild non bitter coffee bean, little bit of coconut sugar.
have smaller servings of the MC safe options until you adjust to the new taste

it can take 21 days to bed in new/modified habits, and up to 8 tastings to embrace a new taste. if you make a change to the coffee, dont give up after 5 days, hang in there.
also dont change EVERYTHING at once, come up with your safe meal options, be ok with them, and then make change with the coffee. A good motto is 'progress not perfection'

read posts, use the search function, ask questions..
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 29977
User's local time:
2017 May 28 - 10:27 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: Fri Apr 21, 2017 7:52 pm    Post subject: Reply with quote

I use 3 sugar cubes in my coffee.

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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pieroaj
Little Blue Penguin
Little Blue Penguin
unknown IP

Joined: 21 Mar 2017
Posts: 26
User's local time:
2017 May 28 - 11:27 AM


Food Intolerances : gluten, caesin, soy, and eggs
Location: North Carolina

PostPosted: Sat Apr 22, 2017 11:23 am    Post subject: Reply with quote

Thank you Gabs and Tex. A neighbor gave me some coconut/almond milk to try in my coffee. It was good, almost tasted like a flavored creamer. Funny thing is I thought it was a bit too sweet. I actually don't like sugar in my coffee. She told me they do have unsweetened coconut/almond milk so I will definitely get some of that.

Sweet potatoes seem to work well for me. I think that will be my go to for a while. I also really like soup. Before all of this, I would take soup with me to work. I work out of my car, so it works well, because a thermos keeps it warm and it is easy. Made a batch last night for next week. So in someways, I am sort of use to at least eating one meal the same every day.......thinking positive here Smile

Symptomatically, I did end up taking Uceris a week after diagnosis. I did want to try diet alone, but I caved. We traveled some. Symptoms became pretty bad. It did calm things down, not completely, but made things manageable until we got home. I stopped taking it on Monday, and symptoms aren't perfect, but manageable by my standards. I do not know how long it stays in your system, thus why I wanted to really focus on diet while things were better. We do have a big trip mid-June. I am not going to put the cart before the horse and start stressing now. Hopefully by then, I will be more knowledgeable and will have made some "progress" in knowing what a few good foods for me are. Bit by bit.

Thank all of you again!
Angela
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brandy
Rockhopper Penguin
Rockhopper Penguin
United States

Joined: 16 Oct 2011

Posts: 1756
User's local time:
2017 May 28 - 10:27 AM


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

PostPosted: Sat Apr 22, 2017 1:56 pm    Post subject: Reply with quote

It is good you know that Uceris is available as a backup and how you feel on it. We have several people that only take budesonide when they are on vacation.

And welcome to the forum!
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