Monday, June 26, 2017

update || surgery, procedures, doctors, oh my

I’ve had A LOT happen over the last few months regarding my chronic stomach issues. I’m doing a small recap to update everyone, as well as fill people in if you’re new here. Bear with me; it's a long one.

necklace

A little over a month ago, I had my gallbladder removed. For most people, when their gallbladder is removed, it’s for no other reason other than gallstones/sludge, and the pain associated with that. It’s usually a “simple” surgery, if there is such a thing, and everything is much better after their surgery and that’s that.

My case is a little bit different.

If you’ve been following me for a really long time, then you may know this, but if not, here’s a bit of my background:

I’ve struggled with chronic pancreatitis for about 4 years now. My first case, they think but aren’t sure, may have been caused by a medication that I was taking and it was a RARE side effect. I’ve been hospitalized for it four times, but I’ve had so many flare ups that I couldn’t begin to count how many I’ve had.

Even with your first case of pancreatitis, your pancreas is never the same again. But, usually, it’s not too big of a deal afterwards if you don’t have it again.

But in my case, I had two serious cases of pancreatitis twice in one month that forever damaged my pancreas and my digestion. There was even one point in the hospital that Kyle asked the doctor what was going to happen if they couldn't get my pancreas under control, and she had said, "Well, we can talk about that if that happens." Talk about fear.

Anyway, your pancreas holds enzymes, which are released when you eat, helping to break down your food before it reaches your small intestine. Your pancreas also produces insulin, which controls your body’s blood sugar levels.

Because of my pancreatitis history, my pancreas doesn’t produce the digestive enzymes as efficiently as it should. I take digestive enzymes to help supply what it can’t make, but there’s still a lot of food I can’t digest well, which causes a lot of stomachaches, nausea, and stomach cramps.

Furthermore, with the damage to my pancreas, my blood sugar levels are all over the place all the time. I constantly have to carry food with me because it’ll drop with no warning, and I’m really sensitive to sugar because my pancreas will basically go into overdrive when I eat a lot of sugar. This usually isn’t too much of an issue, except during breakfast. I can’t eat anything like donuts, cinnamon rolls, etc. because it’ll spike my blood sugar so high that it’ll make me nauseous all day. When I do eat these things, I have to eat something with it, like eggs, to stabilize my blood sugar. 

I’m very thankful in the fact that I don’t currently have diabetes, but I’m at a very high risk for it because of my history.

Anyway, now that you have had an entire health class about the pancreas, let me now go into the more current issues at hand. 

The first thing my doctors checked during my first case of pancreatitis (after confirming that I wasn’t a raging alcoholic) was my gallbladder. Issues with your gallbladder is the second leading cause (next to alcohol) of pancreatitis. Mine looked fine; however, so they never discussed taking it out.

Fast forward to three years later and a few episodes of pancreatitis. A few months after Lilli was born, I started having horrendous stomach issues. I would have to go days without eating because I wasn’t able to keep any food down. I was nauseous all the time, and my stomach constantly felt like it was digesting knives. And absolutely nothing helped. 

At this time, my previous doctor had moved on to another practice that I wasn’t able to go to, so I was without a doctor. I tried another doctor, but had an absolutely awful experience with her, and I later found out she had her medical license revoked, for reasons that they wouldn’t release to the public.

Eek.



But I had to find someone who was able to help me. It was to the point I could never leave the house, and I was trying to take care of a one year old, all while not being able to eat and hunched over in pain all day. 

A few months after looking into doctors, I came across my current doctor. He was accepting patients, but it was about a two month wait to get in for new patients. I was willing to wait, because he came so highly recommended. 

I wait those two (and a half, technically) months, and in that time I was able to eat like “normal” for about 5 days total. I was miserable, and I basically ran into his office the day of my appointment. 

I immediately liked him from the moment I met him. He was so friendly, and was genuinely concerned about what was going on. I even started crying in my appointment (I’m telling you guys I was m i s e r a b l e), and he promised he would help me figure out what was going on.

As fate would have it, about two weeks later, I thought I was going through a bad case of pancreatitis. Most of the time, I just have a flare up, and I don’t go to the hospital anymore because it usually goes away after a day or so. But this time was different. I waited a couple days, and I was vomiting up everything I ate, and I was in so much pain that I couldn’t stand up. I called my doctor, and he sent me to the doctor for an ultrasound of my entire upper abdomen.

They called me the next day and told me that I had sludge in my gallbladder. Now, normally, if you have sludge in your gallbladder it’s usually not a big deal. Many people have gallbladder sludge, and it goes completely undetected unless it starts causing issues, like pain and digestive issues.

My doctor referred me to a surgeon, and that surgeon told me it needed to come out. He said that even if my gallbladder showed “clear” four years ago, that it was protocol that it should have come out with chronic cases of pancreatitis because it could still be malfunctioning, causing pancreatitis. He was appalled that I still had it after four years of problems.

You guys, I was furious. I was so mad that no one in those four years even thought about taking it out. But I was so filled with hope at the same time. I was praying that it would be removed, and all my problems would disappear. 

We had already planned our trip to Disney the following week, and he said it could wait a couple weeks, but needed to come out when we got back. I made the appointment for two and a half weeks later, and pushed through the pain and nausea until then. 

The day of my surgery, I was so nervous because it was my first surgery, but I was so excited to get it out. I just wanted this mess to be over with.

After my surgery, the nurse had explained that I had a extra inflammation in my ducts, which would take a bit longer to heal and I would have some extra pain at the top of my stomach for a while. They told me after a couple days, I would be back to a normal diet and I would feel great.

Sigh. If only. 

The first week after my surgery was rough. So many people had told me that I would bounce right back, and that was not the case. I wasn’t able to take my pain medication because it was causing me so much nausea and I was so out of it, and I wasn’t sleeping because I was in so much pain and couldn’t move without help. I was a mess.

After the first week, I still wasn’t able to eat anything that wasn’t toast or applesauce without throwing it all right back up. I had so much anxiety, because I wasn’t able to pick Lilli up, and I wasn’t able to eat. My mom had to go back on Sunday (5 days after surgery), and Kyle had to go back to work on Monday. I cried all Sunday evening because I had no idea what I was going to do on Monday all by myself with a toddler. 

And really, all I did was lay on the living room floor while Lilli played with her toys in a big circle around me. Thankfully, my normally not-flexible-at-all child understood that I had a “boo-boo”, and that she couldn’t touch my stomach and I couldn’t pick her up. But - she’s still a toddler. It seriously took all my effort to get up and fill up her cup, or make her lunch. By the time I would finish a task with her, I’d either vomit from the nausea or lay down in pain - or both.

After another week (two weeks after surgery), I still wasn’t able to eat and I was still nauseous all the time. I had my follow up with my surgeon that Friday, and I sat in his office crying because this wasn’t “normal”.

He said that he was just the surgeon, and his only job was to remove the gallbladder, and whatever happened after that was up to my doctor to fix.

thanks.

So, I met with my doctor the following week. He referred me over to a Gastroenterologist (GI), and I had an appointment to meet with him a week later. I had about four days where my stomach felt completely FINE. I have no idea why, and I didn’t eat any differently, but I was in heaven for four days with no nausea, pain, and being able to eat. I was actually almost considering cancelling my GI appointment, until my symptoms returned the fifth day.

So, now in present time, I had my appointment with my GI two weeks ago. He gave me some medicine that calms down my nausea enough to eat, but he said it probably wouldn’t help completely, just enough for me to eat. Mornings are the worst for me, and I usually can’t eat until a few hours after I wake up. I have to eat with caution, but I’m thankful to be able to keep food down.

I'm not sure if my pain is related to acid reflux or another cause. I've even worried a couple times that I had a full blown pancreatitis attack because the pain in my upper stomach is just awful. It feels like someone took a hot knife and told me to swallow it. It's awful.

Basically, my GI said that it’s either one of two options: 1) having my gallbladder removed uncovered the real underlying problem, and we just need to figure out what it is, or 2) having my gallbladder removed caused more issues, and we just need to figure out what they are to fix them.

Are you tired yet?? Haha. I sure am.

So, my next step is having an endoscopy done. This was supposed to be done last Thursday, but they had to postpone it until tomorrow (more waiting, yay). After that and depending on what it shows, we will go from there. 

I’m very, very thankful to have such an amazing team of doctors behind me. Both my primary and my GI are great doctors, and I’m very happy that Jesus placed them in my life at just the right time. 

But, it’s still so hard. It’s hard not knowing what’s wrong, or knowing if it’s something I’ll deal with for the rest of my life. It’s hard having my hopes up for the surgery to work, and to be hit with this mess afterwards. It’s hard being a wife and mom when I’m so sick all the time. It’s just hard.


But Jesus’ grace and strength is getting my through this, and His hope allows me to have hope for the future. And, if all else fails, at least I know that my eternity in Heaven will not be in this body. ;)

12 comments:

  1. Oh my goodness, Brandi, this sounds just awful. I cannot believe how much you've gone through and the incompetent doctors that you've had to deal with. Goodness gracious, I will be praying for you. I pray that they figure this out soon. I'm upset even reading this. Thinking of you, girl.

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    1. Lindsey, thank you so much for your kind words! They have honestly made my day. I'm so thankful for your friendship and for your prayers!

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  2. Oh. My. GOSH. I feel like you need all of the hugs and so many positive vibes and strong prayers and just that many more hugs. I am so very sorry you have dealt with such horrifying experiences over the last four years. Even more sorry that it is taking four years of this inner torture for something to finally happen. I am praying for you endlessly, as you know and I am thinking of you, praying for your doctors + your strength.

    Love you forever.

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    1. You are the sweetest, my friend! I love you forever + ever!

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  3. Oh my goodness! I couldn't even imagine. Prayers that tomorrow is the start of solving this mystery for good and getting you back to a normal quality of life!!

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  4. Oh man, Brandi, I'm so sorry you are still going through all of this and trying to figure out what the next steps are. You are such a strong mama and I will continue to pray that God's healing hand will be upon you and that He will guide and direct your Drs in the right direction <3 Beautifully Candid

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  5. Oh this is just awful. Did you find out what the endoscopy showed? Any new answers? Sending prayers your way!

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    1. I'm unfortunately still waiting to hear biopsy results. :( They did tell me that they found a lot of redness and inflammation, but they don't know why yet. Thank you so much for your prayers!!

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  6. No fun!!! I had my gallbladder removed two years ago...I had stones...take your gallbladder out they said...you'll feel so much better they said! You'll be able to eat pizza again they said. I was ok for about a year...and then about 8 months ago I developed acid reflux 24/7 I've been scoped, tested, you name it...at one point I was up to four pills a day. They have no answers...I'm a healthy person who isn't healthy lol...so I totally feel your pain. Praying you get some answers!

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    1. Acid reflux is so much worse that it's portrayed. It's awful! I am prayer you get some answers, too!

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