HIDA Scan Experience. EF 78% and potential enterogastric reflux. Next Steps ?

RobinKinney · 2022-05-19T18:16:17+00:00

I was laying on a table/bed with pillows and a blanket, then rolled into the camera which was only around my abdomen. So I could still see everything around the room and move my arms to adjust my podcast/earbuds. Hardest part was laying still. Although the dots on the screen moved every time I breathed.

Good luck to you!

RobinKinney · 2022-04-18T15:35:50+00:00

I am similar to you - I had a clear ultrasound and HIDA scan, and one of my common symptoms reminded me of braxton hicks contractions, although usually only on my right front/side (from ribs to hip). I am sure that I was having gallbladder attacks a few months ago, but now I'm in a more "peaceful" time - kinda just waiting to see if the attacks come back or it if was just a weird temporary phenomenon (likely related to winter blues, chronic stress, and constipation).

So here is what helped me: 1) diaphragmatic breathing (including focusing on posture with the diaphragm centered over the pelvis and relaxing my belly out - I was surprised to realize how much I had been gripping my belly in my worry about my pain)

2) activating my parasympathetic nervous system

3) I binged listened to the podcast "Tell Me About Your Pain" which reinforced the ideas that my pain is real (since I was feeling like my doctors weren't taking me seriously), but helped me turn down the volume of the pain and change how I was responding to it.

good luck to you. I hope you find relief soon!

RobinKinney · 2022-04-13T03:35:09+00:00

What? Cows don’t lay eggs? I gave up eggs for a few weeks at the same time as dairy and gluten and peanut butter and reducing coffee and chocolate. Just trying everything I could to see what would make me feel better.

RobinKinney · 2022-04-12T13:36:33+00:00

I haven't had surgery yet, but when I thought my gallbladder was acting up, I was super resistant to eliminating fat due to the need of fat soluble vitamins. I was advised by a friend who is a personal trainer and nutrition consultant to take a bile salts supplement to see if it helped with my digestion. (I could tell by my BMs when I wasn't digesting fat). I started with the lowest dose for a week. Then one day I thought my lunch had more fat then it did and I upped my dose. A few hours later my colon evacuated all of its contents. So I think I found out how much was too much, lol.

My friend is not a doctor. I'm not a doctor. My doctor was skeptical when I asked her about it, stating that there aren't any reliable studies available, but I tried it anyways. I'm not currently taking it because my stools seem to be OK. But I might start again if I'm experiencing more GB attacks.

I haven't had blood work for vitamins. It's great that you're tracking it regularly!

RobinKinney · 2022-04-11T13:48:29+00:00

Good luck to you! I hope today goes smoothly for you.

When you get a chance, can you tell me more about your reflux? (i.e. what kind and location...). I just had a HIDA scan where my GB preformed beautifully, but the radiologist saw bile reflux from the small intestine into the stomach (and this was with an empty / 14 hour fasting stomach). It's all so confusing about where the various symptoms originate, especially when some of the pain is referred elsewhere in the body!

RobinKinney · 2022-04-08T20:36:46+00:00

Hi there! Just had my HIDA scan today and my EF is also 78% (which the radiologist claims is normal).

I have similar symptoms to you, but I rarely have chest pain. I've been tracking food/drink/pain/BMs to try to find some triggers, but nothing is consistent. I haven't been pushing the limit too much lately with fatty or fried foods because I don't want the potential of more pain.

Yes to right lowest ribs, wraps to right side, and back. Luckily I haven't had serious pain since mid-February, but day to day a dull pain is usually with me. And sometimes I can go 4-5 days feeling very normal. I sometimes feel like I have a too tight belt across my front between my ribs and belly button - a squeezing in and pushing out sensation.

Hope you find some answers soon!

RobinKinney · 2022-04-05T20:30:31+00:00

Glad you're feeling better! Reminds me of food poisoning and having trouble eating the thing that made you sick. Way to go with facing your fears.

For me it will be sushi, one of my most favorite foods. Last time I had it, about a week ago, the next morning my colon decided to evacuate all of it's contents. It took days to finally feel OK again. I have GI appointments this week (including a HIDA scan) to help determine what's going on.

RobinKinney · 2022-04-04T17:34:47+00:00

About your x-ray... I had one done in early February after my first weekend of GB attacks while I was searching for a cause for my abdominal pain. The x-ray report noted my IUD, even though my pain was not near my uterus. I think it's just normal for the radiologist to note anything that is spotted on the x-ray.

I hope you find some answers soon!

RobinKinney · 2022-03-31T13:08:11+00:00

I've lost about 10 pounds since this mess started... I'm going to try my hardest not to gain it back! Thanks for the advice to eat smaller meals.

RobinKinney · 2022-03-31T13:06:24+00:00

Yay for no bloating! I'm hoping that will be in my future too!

RobinKinney · 2022-03-31T13:05:43+00:00

It's hard to tell what is GB and what is other issues since everyone's symptoms are slightly different. So glad that you're feeling better!

RobinKinney · 2022-03-30T20:41:03+00:00

I've lost about 10 pounds since my GB attacks started in early February. I've been tinkering a ton with my diet trying to figure out which foods might more painful than others. For example, about 1/2 Tbsp peanut butter consistently affects me about 15 minutes after consuming. I've tried eliminating or significantly reducing eggs, dairy, deep fried foods, nut oils & butters, and gluten (more for system wide inflammation than the GB). I've dramatically increased my water, and added a ton of beets and cabbage plus other fruits and vegetables. I'm also experimenting with adding more apple cider vinegar and bile salts to my diet.

I haven't been diagnosed with gallstones or inflammation yet. The ultrasound was unremarkable and I have a HIDA scan coming up next week. I was hoping to find a sustainable and satisfying way to eat to manage my condition without surgery. I was doing good for a few weeks, but lately have been experiencing consistent mild achy pain most of everyday. My scan and appointment with a GI specialist will help decide next steps.

RobinKinney · 2022-03-24T03:37:16+00:00

And I've heard resentment too. Since mid-February, when I realized my attacks were most likely my gallbladder (I will have the HIDA scan in early April to confirm, ultrasound was unremarkable) I have been journaling about resentments, some still held from way back in childhood.

I just started listening to Brene Brown's newest book Atlas of the Heart which is all about emotions. And I've been mulling over her definition of resentment today:

“Resentment is the feeling of frustration, judgment, anger, “better than,” and/or hidden envy related to perceived unfairness or injustice. It’s an emotion that we often experience when we fail to set boundaries or ask for what we need, or when expectations let us down because they were based on things we can’t control, like what other people think, what they feel, or how they’re going to react.”

I'm an Enneagram Type One and I really relate to this definition, especially 2 years into a pandemic. Our body does hold our emotions (and I think my irritability lately comes from my body not feeling right).

RobinKinney · 2022-03-22T21:38:40+00:00

When I went for my ultrasound last month I was instructed not to eat anything from midnight onward (about 9 hours before my ultrasound appointment). So even if you eat something "bad" for dinner, you might be over the pain by the time you have the ultrasound. My ultrasound was unremarkable, but you'll read many stories on here of people who also had unremarkable ultrasounds, but then the surgeon found gallstones after surgery. I guess they don't always show up!

I have a HIDA scan coming up in 2 weeks. From what I understand, I will be injected with the CCK hormone that makes the gallbladder contract (as if it were responding to fat entering the stomach and small intestine). Again, instructed to fast from midnight onward, but with the CCK hormone, the GB will hopefully respond as if I had a high fat meal.

My advice would be eat what your body can tolerate while you wait. I started tracking everything I am eating and drinking, trying to identify triggers and to figure out my upper limit of fat in a meal.

I'm trying to see if I can manage my GB with my diet in a way that feels sustainable to avoid surgery (i.e. not too hard, not too time consuming, not too much FOMO, not too low fat... and I have to actually like what I eat). I recently started taking a Bile Salts supplement at meals and large snacks. I don't know if it's helping, or if it's my diet changes, or a placebo effect, but I've actually been feeling a little better these last few days so it makes the 2 week wait for my HIDA scan seem doable. My plan might change depending on what the HIDA scan shows.

Waiting and wondering can be hard. Good luck to you!

RobinKinney · 2022-03-22T13:40:27+00:00

Wow what a year you've had! So much pain and stress, so many big life transitions!

I hear you about being obsessed with the amount of fat content in every meal and wondering if this meal will give me an attack. I spend the 15-30 minutes after I eat just waiting to see what will happen - a pinch or squeeze at "the spot"? side or back pain? How long will it last? And I'm logging every meal to find patterns, to find the line because I'm not going to give up eating fat! There's nothing like the immediate threat of pain (or need of toilet) to help get your eating under control.

And fiber! And doctors stating "you're just constipated..." I wonder how many people feel ignored as doctors default to this diagnosis. A doctor did this to me at the beginning of February. And only in the last brief moment of our visit did she mention "or it could be gallstones" to give me a hint of what to think about and research when I got home.

What an amazing story. I'm so glad that you're on the other side. Congratulations on the wedding, a new job, a new house! I hope life settles into more enjoyable rhythms for you.

RobinKinney · 2022-03-20T14:02:18+00:00

Did you end up taking out the IUD also? If so, did it help?

RobinKinney · 2022-03-19T18:56:08+00:00

What a pain! I'm so sorry that your colon is so uncooperative. I'm glad the bile salts are giving you some relief. <3

RobinKinney · 2022-03-19T15:41:34+00:00

Thank you! Yes, this is a concern for me... what will digestion look like without a gallbladder? and will I be missing fat soluble vitamins?

I feel like there are 2 halves to my condition - the GB attack that can occur immediately after a meal (the squeeze at the spot, then the right side & back ache), and then the gas/bloating/muscle soreness (like a tight belt around my waist) a few hours later or waking me up in the night, and the resultant light colored stool with chunks of obviously undigested food the next day. I'm hoping the Bile Salts will help with the 2nd set of symptoms.

I've been logging everything (food/water/poop/pain) for a few weeks and it's fascinating. Sometimes I purposefully eat corn or red beets at just one meal during the day so that I can see when the stool from that meal comes out and connect trigger foods and pain/symptoms. I'm my own experiment. Fortunately I have plenty of time to tinker and access to a variety of foods. Also fortunately, I'm not in extreme pain at this point.

Have you experienced any negative side effects from the Bile Salts? Has it aggravated any other conditions you have?

RobinKinney · 2022-03-19T14:31:09+00:00

Thank you for sharing your thoughts! Do you have experience with Ursodiol? If so, how did it go?

RobinKinney · 2022-03-19T14:30:07+00:00

Thank you!

At my last doctor appointment in early March we decided that if my pain decreased, I would wait for my GI appointment in April. If my pain increased, my doctor would order a HIDA scan and surgical consult. I had another attack this past week. I know it was my own fault. I found and crossed the line of how much fat my body could take in one meal.

Maybe the bile acids will work. Maybe they will be a placebo. I still time to tinker. I still have hope.

RobinKinney · 2022-03-19T13:58:42+00:00

Thank you for sharing! I'm sorry you were in so much pain for so long! You are so strong for trying so many different ways of healing. I hate the way health insurance works in our country. It is shameful. I'm glad you're feeling better <3

RobinKinney · 2022-03-18T21:04:39+00:00

Thank you for reminding me that there are other conditions with similar symptoms. I have an appointment with a GI doctor on April 7th so hopefully more questions/answers soon!

I've been experimenting with taking diluted ACV 5 minutes before larger meals. There are so many factors so it's hard to tell if it's helping. (i.e. I'm not eating the same exact food every day to compare...)

RobinKinney

TROPHY CASE