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I hope I was empathetic to all of you back then.. my new GI

 
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carolm
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Joined: 02 Sep 2011

Posts: 1001
User's local time:
2017 Oct 23 - 2:03 AM


Food Intolerances : Enterolab: gluten, soy, dairy, eggs, pork. MRT- Reds: Cola. Yellows: Capsaicin, sorbic acid, ibuprofen, Blue #2, maple, cherry, peach, pineapple, grapefruit, plum, papaya, pear, beet, string beans, cucumber, green pea, lima bean, walnut, tea.
Location: Kansas City

PostPosted: Fri Apr 07, 2017 6:08 pm    Post subject: I hope I was empathetic to all of you back then.. my new GI Reply with quote

Hi all,
It's been awhile since I posted but I want to share this story. Twenty months ago I moved to Kansas City which of course means new doctors. Previously I lived in a college town of 20,000 people in rural north central Kansas where I received a diagnosis of my LC within 6 weeks after I became ill. I also enjoyed being treated by a progressive ARNP of the area's GI docs. She was supportive of my diet changes and when I brought in my food and poop log we would pour over it together looking for trends. After 3 years of the strict GF, SF, DF, Egg free diet I had another colonoscopy where my biopsies showed that my immune system had backed off, there was no inflammation and the white blood cells were no longer clustered but spread out as they should normally be.

So, now in the suburbs of KC I landed with an excellent GP- she and her ARNP were very interested in my journey with LC and very, very supportive of the diet changes I made. They looked at all my tests with interest and were impressed with my progress (thanks to the advice I received here). However, I was starting to have nausea again and was waking up at night with chest pains. All this translated to upper GI issues and I was referred to a group of GI docs.

By now you should be smiling because you know where this is headed. I'm now well educated about LC and I've been treated and followed by docs who have been open minded and supportive, and have been in remission for 2 years. My first appointment was with the PA for the GI doc. I explain my symptoms that got me there (nausea, chest pain/reflux) and that we tried Nexium which helped with the upper GI issues but it gave me D. Her comment "but people with Lymphocytic Colitis don't have nausea. It's not a feature of the disease. They have diarrhea like 30 times a day".

Shocked Rolling Eyes Twisted Evil I thought "OMG I'm in twilight zone that you all told me existed!!! You warned me but I'd never been there. And now.... what the effing hell is she saying?" thatsit

So I said that my LC had been C prominent and but that nausea was always a strong feature of my LC. Then she questioned the diagnosis so I gave her the diagnostic biopsy report plus pictures. It's hard to fake those. I told her I had been on Dexilant when I was first ill and I tolerated it well-so she said she would prescribe it for me and then I could see the Dr. in a few weeks. Then she gave me a choice as to whether I wanted have an endoscope or not. I said 'let's try the med and see how that goes'. Who wants to be scoped?

When I met with the Dr he also questioned the diagnosis, I showed him the biopsy results. Then I shared my diet changes. He encouraged me to try to eat gluten again. I told him I had been accidentally glutened and the reaction was significant-- like having the flu. He then thought maybe it was too soon. (I know I'll NEVER eat gluten or soy again and I know that stuff is poison to me).

But holy crap, you guys! If these people had been my docs when I was first sick, I'd still be sick-- except for the help I received here. The diet is the reason I healed and the people here showed me the way.

I hope that when you struggled with your own docs, my friends, that I gave you the proper amount of empathy because-- GAH!! --

(as a side note, I have finally started lifting weights and doing yoga again, to build muscle back and get some stamina. I am also practicing meditation and the basics of Buddhism -which is mainly coping skills for staying in the moment, not worrying, keeping things in perspective and being compassionate. But working out again is like the last leg on the journey to wellness and I'm pleased to finally be at this point).

Warm regards, friends
Carol
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“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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Marcia K
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Joined: 03 Apr 2014

Posts: 864
User's local time:
2017 Oct 23 - 2:03 AM


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

PostPosted: Fri Apr 07, 2017 7:23 pm    Post subject: Reply with quote

Hi, Carol. Good to see you again. This group is what saved me - my GI and his PA were exactly as you described. He said that gluten free is a fad and the PA said something equally as lame. I haven't been back to him since my six week check-up after my diagnosis and I'm not sure what I'll do when the five year period is up for my next colonoscopy. You sound as though everything is falling into place for you and your post will help anyone who is just starting out on this journey. Thanks for the update!
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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
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Joined: 21 Dec 2009

Posts: 7138
User's local time:
2017 Oct 23 - 6:03 PM


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

PostPosted: Fri Apr 07, 2017 7:48 pm    Post subject: Reply with quote

Carol, I have moved 3 times since my MC Dx and have struggled to find good supportive day to day doctors etc each time

In Australia we dont have 'online' health records like you do in the USA and our health systems are state based. since moving interstate all the doctors in this state can not access previous notes, labs etc of my previous doctors and specialists. Even though I have offered 'copies' from my own records. They have an approach of we want to check for ourselves type thing.

The system is very 'silo'd' where they only look at the issues and symptoms in their category and they ignore the symptoms that cross over or that can be attributed to other disciplines. i had a dermatologist quiz me this week who is managing my MC - I replied me. She asked if I wanted a referral to a GI specialist and to do colonscopy so the information was on my file here, I said no thank you. Happy to wait until the need arises.
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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carolm
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Joined: 02 Sep 2011

Posts: 1001
User's local time:
2017 Oct 23 - 2:03 AM


Food Intolerances : Enterolab: gluten, soy, dairy, eggs, pork. MRT- Reds: Cola. Yellows: Capsaicin, sorbic acid, ibuprofen, Blue #2, maple, cherry, peach, pineapple, grapefruit, plum, papaya, pear, beet, string beans, cucumber, green pea, lima bean, walnut, tea.
Location: Kansas City

PostPosted: Fri Apr 07, 2017 10:35 pm    Post subject: Reply with quote

Thanks you two. I really was completely dumbfounded at the PAs very narrow idea of what MC was. Why would everybody only have one identical symptom? Where's common sense in all of this. That's like saying everyone who gets chemo will have the same reaction when in fact I may experience nausea and someone experiences headaches and joint pain.

Honestly I probably need to look around for another GI doc, in case I should ever need one.

Any way I just had to share my surreal experience. I'm not thrilled about being back on Dexilant but in two days the nausea went away and I found that once my upper GI issues let up, so did my remaining lower GI symptoms. I am as close to 'normal' as I've ever been since this started 5 1/2 years ago.
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“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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JFR
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Joined: 30 Mar 2012

Posts: 1280
User's local time:
2017 Oct 23 - 3:03 AM


Food Intolerances : gluten, dairy, soy, eggs

PostPosted: Sat Apr 08, 2017 7:00 am    Post subject: Reply with quote

carolm wrote:
Thanks you two. I really was completely dumbfounded at the PAs very narrow idea of what MC was. Why would everybody only have one identical symptom? Where's common sense in all of this. That's like saying everyone who gets chemo will have the same reaction when in fact I may experience nausea and someone experiences headaches and joint pain.

Honestly I probably need to look around for another GI doc, in case I should ever need one.

Any way I just had to share my surreal experience. I'm not thrilled about being back on Dexilant but in two days the nausea went away and I found that once my upper GI issues let up, so did my remaining lower GI symptoms. I am as close to 'normal' as I've ever been since this started 5 1/2 years ago.


The medical historian, Jacalyn Duffin, calls diseases ideas, and like all idea some are better than other. She also points out how these ideas can change as our knowledge evolves. So many doctors get stuck on bad ideas, like "MC is this way" and "it is not effected by diet". Luckily, because of this forum and our ability to keep our minds open and think for ourselves, we have been able to learn more than most doctors know about what we need to do.

It's nice to see you back here, Carol, and great to hear you are doing well.

Jean
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carolm
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Joined: 02 Sep 2011

Posts: 1001
User's local time:
2017 Oct 23 - 2:03 AM


Food Intolerances : Enterolab: gluten, soy, dairy, eggs, pork. MRT- Reds: Cola. Yellows: Capsaicin, sorbic acid, ibuprofen, Blue #2, maple, cherry, peach, pineapple, grapefruit, plum, papaya, pear, beet, string beans, cucumber, green pea, lima bean, walnut, tea.
Location: Kansas City

PostPosted: Sat Apr 08, 2017 7:28 am    Post subject: Reply with quote

Thank you Jean. Regarding other changes I titrated my self off of the 30 mg of Amitriptyline I was taking. I felt it had run its course and I was having some heart palpitations and wondered if those were a side effect. The outcome is that I wake up earlier and am more alert. I feel better off of it and my appetite has return to normal, so I've lost a few pounds (and needed to). I just feel more steady and relaxed without it.

Maybe GI docs are also like ideas- some are better than others and more thoughtfully developed.

C.
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“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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Deb
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Joined: 20 Nov 2010

Posts: 1543
User's local time:
2017 Oct 23 - 2:03 AM


Food Intolerances : Gluten, still determining others
Location: Minnesota

PostPosted: Sat Apr 08, 2017 2:28 pm    Post subject: Reply with quote

Quote:
Maybe GI docs are also like ideas- some are better than others and more thoughtfully developed
Very Happy
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starfire
Moderator
Moderator


Joined: 25 May 2005

Posts: 5162
User's local time:
2017 Oct 23 - 3:03 AM


Food Intolerances : Gluten, Soy
Location: Pennsylvania

PostPosted: Sat Apr 08, 2017 3:48 pm    Post subject: Reply with quote

Had to laugh at the "no nausea" comments of the health professionals. They don't know what they are talking about, that's for sure. MAJOR symptom for me and others. Good luck finding a better doctor. I truly wish you well.
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When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
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carolm
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Joined: 02 Sep 2011

Posts: 1001
User's local time:
2017 Oct 23 - 2:03 AM


Food Intolerances : Enterolab: gluten, soy, dairy, eggs, pork. MRT- Reds: Cola. Yellows: Capsaicin, sorbic acid, ibuprofen, Blue #2, maple, cherry, peach, pineapple, grapefruit, plum, papaya, pear, beet, string beans, cucumber, green pea, lima bean, walnut, tea.
Location: Kansas City

PostPosted: Sat Apr 08, 2017 7:54 pm    Post subject: Reply with quote

Exactly. I REALLY wanted to ask if she had ever talked to anyone with MC/LC. Why would anyone assume that inflammation would be limited to the lower GI tract, when it's all connected?
Oh well- I'll never understand it.

Just grateful for you all.
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“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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JFR
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Joined: 30 Mar 2012

Posts: 1280
User's local time:
2017 Oct 23 - 3:03 AM


Food Intolerances : gluten, dairy, soy, eggs

PostPosted: Sun Apr 09, 2017 3:51 am    Post subject: Reply with quote

Nausea was one of my major symptoms, long before the wd started. It's as if doctors believe their textbooks over their patients. If it isn't in the textbook it doesn't exist. What's the point of medicine if it ignores the patient?

Jean
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Rebecca2z
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Joined: 09 Mar 2017
Posts: 159
User's local time:
2017 Oct 23 - 12:03 AM




PostPosted: Sun Apr 09, 2017 11:26 am    Post subject: Reply with quote

Me too, before the WD started I had major nausea, and for the first 2-3 months after the WD started I was nausea, and then it went away. But this was a major thing going on at the onset of my MC. I also had pain on the soles of my feet when I got out of bed in the morning and major reflux. So just before or at the start of the WD I had
    1. Nausea, 2. Worsening reflux 3. soles of feet were painful when I got out of bed.


GI docs sure don't much about this !
Sad
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CathyMe.
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Joined: 27 Feb 2012

Posts: 584
User's local time:
2017 Oct 23 - 2:03 AM




PostPosted: Mon Apr 10, 2017 4:52 am    Post subject: Reply with quote

Thanks for the update Carol. it's nice to see you post again. Glad you're continuing to do well and that you've taken up weight lifting and yoga! Two of my favorite things to do. My GI doctor also suggested I "try gluten" again....no thanks!
Are you still working in schools? I'm looking at retiring within the next 3 years. Can't wait, especially with all of the changes I forsee coming down the pike with DeVoss in charge.
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Erica P-G
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Joined: 08 Mar 2015

Posts: 1232
User's local time:
2017 Oct 23 - 12:03 AM


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

PostPosted: Mon Apr 10, 2017 1:18 pm    Post subject: Reply with quote

HI Carol!

You go Girl!! I'm sure you were empathetic Wink

Remember that nausea could be from a hernia, food not digesting properly meaning not enough HCL to break it down, and also if you Vit D and Magnesium routine has taken a hit lately Very Happy

Cheers
Erica
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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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carolm
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Joined: 02 Sep 2011

Posts: 1001
User's local time:
2017 Oct 23 - 2:03 AM


Food Intolerances : Enterolab: gluten, soy, dairy, eggs, pork. MRT- Reds: Cola. Yellows: Capsaicin, sorbic acid, ibuprofen, Blue #2, maple, cherry, peach, pineapple, grapefruit, plum, papaya, pear, beet, string beans, cucumber, green pea, lima bean, walnut, tea.
Location: Kansas City

PostPosted: Mon Apr 10, 2017 8:20 pm    Post subject: Reply with quote

Thanks all- friends old and new!
Rebecca- I had pain in my feet when I was inadvertently ingesting soy in the form of alpha-tocopherols in a vitamin supplement. It was over a year before it left completely. It's a strange symptom but that's what we have, right?

Erica- thanks for the reminders- I need to be more consistent with my vitamin D. I'm sure I have a sluggish system. I was prone to C even before I developed LC. 😕 Eating smaller meals and exercising has been helpful too.

CathyMe- I went ahead and took my districts and state retirement option 18 mos ago when I moved to KC. We've had many changes statewide- not for the better- that have made it more difficult to serve kids well. I took that same skill set and am now working for a global clinical research organization as an Informed Consent Reviewer and writer ( making sure patients are well informed and all legal requirements are met). I have a flexible schedule, can work from home, etc. I'm enjoying the new challenges and the change.

It's fun to catch up with everyone!

C.
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“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
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ldubois7
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Joined: 19 Feb 2013

Posts: 1254
User's local time:
2017 Oct 23 - 2:03 AM


Food Intolerances : Gluten, dairy, eggs, soy
Location: Pennsylvania

PostPosted: Fri Apr 14, 2017 6:11 am    Post subject: Reply with quote

Hi Carol!
It's good to hear from you!
Now you know my experience with MC! My PCP & GI do not have the knowledge to help me....they tolerate me, and give me "that look" and go along with what I say, but aren't truely invested in my health journey.... 😞
The right doc can make a big difference, but ultimately it's up to us to be in control of our health.....and it can be a lonely road......
I've thought many times.....where would I be without this group??
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Linda :)

LC Oct. 2012
MTHFR gene mutation and many more....
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