Tuesday, November 7, 2017

the official diagnosis.

Today, I’m saying the words that I never thought I would say: I have an official diagnosis for my recurrent, chronic stomach issues.

Well, mostly.

Let me back up and explain.

I’ve mentioned on and off on my blog and on my social media that I’ve been having a horrible time with my stomach. I already have a history of chronic pancreatitis and my doctors thought that my pancreas was behind these issues as well.

Upon further investigation, sludge and tiny stones were found in my gallbladder. They removed it, thinking it would relieve my pancreas and my problems would disappear. (Read more about that surgery HERE.)

If you’ve been hanging out with me since then, then you know the removal of my gallbladder did the exact opposite of "help". After I recovered and realized that my stomach was worse than it was before, it was back to the drawing board.

The months of this past summer and early fall could be described as a whirlwind. I was constantly in pain, throwing up most of what I was eating, nauseous when I wasn’t throwing up, trying medicine after medicine, in and out of doctor’s offices at least twice a week (even going as far as Cleveland Clinic), going through test after test after test trying to figure out what was wrong, and in and out of the ER more times than I can count.

It pretty much sucked. 

A few months ago, I was admitted to the hospital with a small bowel blockage. While I didn’t know it at the time, this hospital stay was a turning point in my journey for a diagnosis. 
The hospital couldn’t find an immediate reason for my blockage and after remaining on a liquid diet and IV fluids for four days, it passed uneventfully.
I was released and told to remain on a full liquid diet until I was able to keep food down, which ended up being 10 days later. 

During this hospital stay, my GI doctor was out on leave for a surgery of his own. What was supposed to be a two-week leave ended up being two months. I had been seeing this doctor for so long and I didn’t want to switch because changing doctors can be such a pain, especially when you have a chronic illness and they know your full history.

So I waited.

As soon as my GI returned from leave, he dove deep into figuring out what was going on. He told me point blank if they couldn’t get this figured out, soon, he was going to have to put me on a feeding tube because I was never able to eat and I was malnourished.

For two months, I was in the surgical office or the hospital two times almost every week undergoing some sort of test or procedure. 
In those two months, we were sure I was close to a diagnosis three times. The first time was after an endoscopy that showed gastritis. The second time was after a gastric emptying study when we thought it was gastroparesis. The third time they actually mentioned the phrase "ovarian cancer". I had an intestinal CT scan done that showed a significant amount of free fluid in my lower abdomen. I was sent immediately to my OB-GYN to be screened for ovarian cancer. The main symptoms of ovarian cancer are stomach issues, many of which I was having, so I braced myself for the worst answer, but thank You Heavenly Father, there was no answer as to why the free fluid was there and upon my second visit to the OB-GYN, I left with a clean bill of health, at least in that region. I was so relieved that it changed my “want” for a diagnosis. I was healthy “enough”, but I still continued to follow my GI’s instruction to avoid a feeding tube.

Fast forward a couple weeks and a few more tests later, I was finally sitting in my doctor’s office for an official diagnosis. This is a summarization of what he told me:

My stomach, from my esophagus to the end of my colon, has spurts of paralysis, which basically means for no reason (at least in my case), it just stops working. Then, after however long it decides to "sleep", it starts working overtime to make up for the digestion it missed. I'm always nauseous because I'm not properly digesting food, I throw up frequently because when my stomach goes through this paralysis, food doesn't move anywhere so it has to come out some way, and I'm in pain often because my intestines never know what the heck they are doing.
It went undiagnosed for so long that my colon backed up profusely, which is what caused the blockage I was hospitalized for previously. 

So what is my official diagnosis?

Idiopathic Intestinal Paralysis and Severe Irritable Bowel Syndrome.

If you don't know what these are, Irritable Bowel Syndrome is "a widespread condition involving recurrent abdominal pain and irregular bowel movements; Idiopathic Intestinal Paralysis is "random and irregular paralysis of the intestines."

😦 I know, it's a mouthful.

He also said I have a moderate dairy allergy that could possibly be amplifying my symptoms, as well as ongoing-acid reflux and moderate bile reflux, which is a result of the removal of my gallbladder. 

There is, unfortunately, no cure for either of these conditions. It is something that will never go away and has the possibility of worsening in the future (possibly to the point of needing a feeding tube) if I don't maintain strict precautions and treatment. I'm not able to take 95% of the medication used to treat these diseases because of my history of chronic pancreatitis. I have to follow a very strict diet and be very mindful of my treatment plan at all times. I'm constantly searching for more holistic, natural approaches to, if nothing else, help with my symptoms. It's a tiring, daily battle.
But... it's okay. I now know exactly what’s wrong (at least, know enough) and why I have my symptoms. I’m able to move forward. I’m done with the tests (for now) and my doctor appointments are no longer weekly. I’m working every day to find holistic aids and finding a diet that works for my stomach. I know I have a long road of me but I am so thankful to be able to place a period where a question mark used to be. I'm no longer living in fear of finding out what's wrong. Jesus answered my prayers to find an answer even though He didn't have to. And for that, as well as His great love and comfort that He showed me every single day, I'm grateful.


"...but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
Isaiah 40:31


2 comments:

  1. I sure hate that you're going through all of this, but I am so glad that you finally have some answers. Not knowing is always the worst part! Hopefully that you know what's going on (mostly) you can do what you can to stay as healthy as possible!

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  2. Oh wow Brandi. So glad you got a diagnosis and are doing a bit better. Here’s to hoping you can control the symptoms more and live a happy and healthy life with little to no pain. Sending prayers friend.

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