Sunday, May 26, 2013

Paradigm Shift!

A tree on the roof-top cafe at Dr M.'s office building

Heads-up: This is all about health stuff.  Skip if desired!

Friday I had an appointment with the gynecologist who originally diagnosed my endometriosis and performed my surgeries, Dr. M.  I initially made the appointment because I wanted a second opinion as to how we should handle the possibility that endometrisosis was growing on the outside of my colon. (The first opinion was simply to wait until the pain got too severe, then go in and get it all out surgically.) 

On Thursday, however, I got the call from my gastroenterologist, Dr. R., telling me that I appear to have Crohn's Disease.  So then we were concerned that maybe I was going to have to deal with both disorders.

The summary from the visit is that Dr. M. does not think the symptoms I am having are endometriosis-related AT ALL.  He could no longer detect any of the endometriosis implants I had way back when, even the really big ones.  They seem to have died out!  

According to him, I am not crazy for thinking this new pain is the same old pain, though;  It's difficult to tell from symptoms alone.  I also probably have more pain from digestive distress because of adhesions (abdominal scar tissue) caused by previous surgeries.  

As he poked around on my abdomen and I told him where it hurt, instead of being mostly in my lower-abdomen, as my pain used to be, it appears to be in my upper abdomen, and that's likely digestive pain rather than endometriosis.  I honestly couldn't tell the difference between the two places he pushed on my abdomen ("upper" vs "lower"), but he said they're very different for the purpose of figuring out whether it's pelvic pain versus abdominal pain.  

Dr. M. had no doubt that the biopsies were accurate if they said I have Crohn's 
(and he said he's sorry I have to deal with it - he's a kind man).

So what this means to me is that as far as we can tell,
 I DO NOT HAVE RAMPANT ENDOMETRIOSIS!!!!

Since Thursday, I have read up a LOT on Crohn's, and it's not the nicest of diseases, but it's not the most terrible, either.  There are lots of ways I can make myself healthier even before considering medication.  I know those of you affected by Crohn's will probably think I'm a loon, but I feel very happy right now to deal with Crohn's rather than endometriosis.  No doctor is going to suggest to me that in order to treat Crohn's Disease, I should stop using estrogen and become crazy from lack of hormones, causing emotional distress to me and my brave, long-suffering hero (Greg). 

With Crohn's, there are diet modifications I can make that will help, there are medicines (some with major side effects, some with fewer), there is more research, there are simply more OPTIONS.   In the worst cases of Crohn's, there's still some chopping that often happens, but there is a loooooong way between where I am and any choice like that.  And I feel like an active agent in this rather than a victim.  Endometriosis often made me feel like I was on the defense, just trying to keep up, but I feel as if I can be on the offense with Crohn's somehow.  I don't know if that makes sense, but that's how I'm feeling.

At first, I thought this diagnosis didn't make much sense, because I "didn't have the symptoms".  Well, I have been thinking about that more, and realizing that I have adjusted my life considerably due to my digestive system lately.  I thought I was just getting older (but 38 is not old!) and that everyone needed to avoid a large number of foods because they don't "sit right".  I realized yesterday that there is a list of foods (OUTSIDE of the gluten-free diet I already follow) that I no longer have been eating because they cause major problems for me.

These cause problems every time I eat them:
watermelon
hummus
pinto beans (and therefore my beloved Mom's chalupa recipe doesn't get made!)  :(
kidney beans (no more chili!)  :(
popcorn, caramel corn, kettle corn
ice cream
raw bell peppers (red, yellow, green)
raw onions
orange juice
corn (even cooked)

These cause problems when I am having a flare-up:
meat (especially pork, ham, sausage, red meat)
dairy (especially milk, regular yogurt, ice cream)
raw vegetables

I haven't been wanting to go out to eat at all, because I felt sick every time I did (gluten-free Barro's pizza, for some reason, is the best option because it's not greasy and it seems to sit fairly well).

Thinking about this list, I realized that the foods that don't work for me anymore are the foods that are "high-residue" (things that have a lot of little scraping parts as they are digested - like popcorn and raw vegetables) and high fiber (like beans).  That fits the Crohn's profile extremely well.  I also realized that during certain times when my digestive system has been "acting up" over the last year or two, I have asked myself regularly, 
"Why does my stomach hurt so much AFTER EVERY SINGLE MEAL?!"  

I actually asked myself that today before remembering that there's now an identified reason that my stomach hurts after eating.

Just proves that we can't tell what is going on in our bodies even if we think it's crystal clear!

My next mission is find a lab that will take blood for the blood test my gastroenterologist wants.  I am not certain why it's important to get this test, since Crohn's is diagnosed mostly by biopsy (which I already had), but I guess confirmation is never bad, especially since I already thought these symptoms were being caused by something else.   

I will post more about the non-medicinal treatments that I'm researching in the next days and weeks.

Thanks for your prayers and well-wishes!

xo

1 comment:

  1. You know I've had digestive issues for a while. After the doctor put me on steroids I knew that wasn't for me and like you I did research. I'm just telling my story not telling you what to do. I did a $500 blood test and that showed my 23 food allergies. That helped but not completely. Along with the supplements we take (us and your mom & dad) the chiropractor recommended a Medical Food from Metagenics (an excellent manufacturer) called Ultra InflamX 360 degrees. This is for IBD but helps with inflammation in general. I do a high quality multi enzyme with meals and probiotics. I still have some days (usually went I fudge on not eating right)but for the most part the pain and issues are pretty under control. For what it's worth.....

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