Update

The ultrasound with a fatty meal revealed no stones, no obstructions, no thickening of the gallbladder wall, no sludge, bile ducts within normal diameter, and an ejection factor of 75% 20 minutes after consuming the fatty meal.

So, now I have no idea what to think about my gallbladder. The HIDA was low, the ultrasound was on the high end of normal. Nothing consistently reproduces my symptoms.

It’s been a week since the ultrasound and blood work, and I still haven’t gotten the blood work report yet. Which I find strange. I got the ultrasound report on Monday. And a liver panel and lipase and amylase don’t usually take that long to run, as far as I’m aware.

I haven’t heard from Dr. S about either test. Or the referral to the neurologist, and I’ve had numbness whenever anything presses on my middle finger for about three weeks now. The involuntary leg spasms have been more frequent the past couple of weeks. And the ocular flashes are getting more frequent again. Its something I would like to get checked out before classes start in fall. I’m already behind enough on my own research and academic progress, I really don’t like being behind in classes too.

Gallbladder, oh gallbladder

I just got back from Dr. S’s office.

She thinks the left sided pain may be referred pain from my gallbladder, and that surgery is our best option at this point, but understands my reluctance, especially since the change of resolved problems with atypical symptoms is 41%.

So she’s agreed to do the ultrasound and run the blood work for pancreas function (amylase and lipase) when I asked her to. The ultrasound and blood work is scheduled for the 2nd. It’s pretty much the last test we can do to give us any indication if its the gallbladder, short of removing it.

So, if those results of the ultrasound and blood work don’t give us any new information that contradicts surgery, then I agreed surgery would be the best next move.

Every time I go to her office, I bring a report of everything that’s been going on since my last appointment. My reports have included information about my bladder being reluctant to empty completely, the pins and needles I get in my limbs, and the random muscle contractions that occasionally occur in my right leg– most often before bed (which she said is normal) but also have occurred when I am awake (she said that is not normal). She thinks I should see a neurologist. So I’m going to look into if I can go to the student health center over the summer, and get the student health center to refer me to a neurologist, since the insurance will pay more of the bill (90% instead of 80%) that way. If I can’t go to the student health center over the summer, Dr. S said she can refer me to the neurologist.

I really like Dr. S, and am so glad she listens to me and validates my effort, thoughts, and research into my own health. In my experience, it is rare that a doctor does that. She’s one of the good ones, which makes up for the incredibly slow speed of her office, and why I will continue to see her as long as I need to.

Now I just need to think about the financials. It’s stressful enough that my health causes “speed-bumps” in my academic work and mental functioning (I have had some cognitive dysfunction lately, often switching a wrong word for what I mean to say, and making mental connections is slower than I’d like… Which is NOT conducive to working on my preliminary exam this summer.) But the financials are getting pretty tight. Graduate students don’t make much money.

I have an annual $3000 out of pocket max on my insurance. I need to find out if the “year” is the calendar year or the school year. It’ll make a big difference if my out-of-pocket max rolls over on July 1st, or January 1st. If I’m going to have that surgery this summer, and see a neurologist- with more tests I’m sure, I really want to know if I’m looking at a new $3000 bill, or if it will be less since I’ve had, and paid for, procedures so far this calendar year.

HIDA

I met with Dr. S on May 22nd. We discussed how the low FODMAP diet results were inconclusive, and she suggested that I stop the diet. She also sent me in for the HIDA gallbladder function test.

Today I got the results back. My gallbladder is ejecting at 24%, where it should be at 37% or higher. The nurse told me I could either come in and talk to Dr. S again, or be referred directly to a general surgeon to have it taken out.

I elected to go back and talk to Dr. S. My appointment is for June 26th.

The HIDA scan did NOT reproduce my bloating or cause any pain, so while my gallbladder may be functioning poorly, it didn’t reproduce or cause any symptoms. …Although I did blow up the next day after a goodbye lunch with a departing co-worker, and throughout the whole weekend after A and I went to celebrate A’s youngest sister’s graduation…and actually on and off the week since then, even after going back to low FODMAP foods in a desperate hope that something would improve. (It hasn’t).

I don’t see the point in taking out my gallbladder if it isn’t what is actually causing my problems. And I’m not certain it is the cause of my problems since the test didn’t reproduce anything, and from what I looked up, it seems that high levels of progesterone can cause gallbladder ejection to be low. Since I’m on 5mg of progesterone a day, I’m wondering if that is why my ejection factor is 24%. That’s something I’m going to bring up with Dr. S on the 26th.

I’ve also noticed that for a few hours after eating, whenever I burp I can taste what I had eaten- so I’m going to bring that up too.

Updates

Well, the garlic test was inconclusive. I didn’t have any bloating after eating the rosemary lemon chicken and  was feeling good the next morning too. But then I made a mistake. A and I went to the grocery store and I picked up some gluten-free pretzels AND I DIDN’T READ THE LABEL. Dumb me. So I’m really excited to eat pretzels, I love pretzels, and since starting the low FODMAP diet obviously haven’t been able to have any. I get home, start eating them with some Brie, and realize that maybe I should check the label. …Yep. Right there at the end of the list- Onion Powder. Garlic Powder.
I hadn’t even had more than 20 pretzels and my big ol’ bloated belly was back. I don’t know if it was the onion powder, garlic powder, combination of having garlic the day before, or something else entirely.

Later in the week I finally get a call from Dr. Y’s office about the ultrasound results. It wasn’t the normal nurse who called me- and all I got was “Dr. Y wants you to go off the pills for a week and then go back on them.” No other indication on if the endometrium measurements were to be expected, or concerning, or anything.
So now I’ve been of the letrozole and norethindrone for three days- and my uterus is back for vengeance. Cramps, back ache, stabbing vaginal and rectal pain that catch my breath, joint pain…oh and of course, bloating! So far just a bit of bleeding, so I know the real fun is still waiting to begin. Plus, three days of my pills and everything is back to BABIES! which always causes some emotional turmoil for me.

On top of that I’m having another breakdown about this diet. All I want is normal, easy, comfort food. But of course none of that is low FODMAP friendly.

It’s going to be a long week. At least the semester is over, now all I have to worry about (academically) is my prelims.

CT scan, and low FODMAP Day 6: Chicken Biryani

This morning I had my CT scan.

I had to be at the imaging center at 10:00 AM for the 11:00 AM scan, and couldn’t have anything by mouth for at least 2 hours before. So I woke up around 7:30 to take my morning pills, but was otherwise completely fasted. I arrived at the imaging center early, after dropping A off at work. Shortly after checking in, the technician came out with two cups full of the oral contrast, and a straw. I had twenty minutes to drink it all, and then an hour later I’d be ready for my scan.

Drinking it down was a bit of a challenge. It was thick, and had an odd taste I couldn’t place. It wasn’t nearly as bad as the magnesium citrate for bowel prep, but it was certainly a challenge getting to the bottom of each up. Another patient in the waiting room was also getting an abdominal CT, and had just finished drinking his dose when I got mine. We joked a bit about the taste.

Twenty minutes or so after finishing my two cups of contrast it hit me. The last time I had a CT, the oral contrast was different- it was clear, and mixed with saline and ice, and I didn’t find it bad at all; the stuff I had today was white and completely different, and apparently does not agree with me as well.

I made a couple of bathroom runs before the technician came and got me for the scan. Once in the CT room the technician had me lay on the machine, placed and IV in my right arm, and had me put my hands above my head. We did a set of scans, then the technician added the IV contrast. If you’ve never had IV contrast, it’s a weird sensation; you get a warm, burning feeling that starts at the top of your head and travels down your body. It also makes you feel like you’re going to pee. We did another set of scans with the IV contrast, then the technician came and took the IV out. I needed one more set of scans, 7 minutes later, so I just waited for a while on the machine. After the last set of scans, I was done. The technician made me a copy of the scans (at my request), and told me how to sign up for the patient portal. I finished up around 11:50 AM.

Since I knew I wouldn’t have eaten all morning, I brought one of the peanut butter protein bars to eat in the car.

I had to go refill my amitriptyline prescription, so I swung by Kroger. While I was there I also picked up some low FODMAP friendly jelly, for my PB&J sandwiches- blackberry, with no added high fructose corn syrup. My tummy still wasn’t feeling well, at all, so as soon as my ‘script was filled I picked up my husband from work and headed home.

When I got home I I had a small amount of left over Cottage Pie, hoping it would help me feel a bit better. Slowly as the afternoon wore on, my tummy settled down. Then it started to hit me that my blood sugar was getting low, since I really hadn’t had much all day- and lost a lot of what I may have had in trips to the bathroom. I decided to have a handful of blueberries, raspberries, and a bit of maple syrup as a pick me up.

A little later I made dinner- Chicken Biryani from The FOODMAP Foodie. This recipe was delicious. We’ll definitely make this again, maybe with some stewed tomatoes.

Here’s the recipe:

Ingredients

• boneless, skinless chicken tenderloins, cut into bite sized pieces
• 1/2 cup basmati rice
• 1 cup chicken stock
• 2 zucchini, diced
• 2 carrots, diced
• 1 teaspoon ground turmeric
• 1 tablespoon curry powder
• 1, thumb sized piece of ginger, grated
• olive oil

Instructions

• Heat the oil in a medium sized Dutch oven,over medium heat.
• Add the chicken, ginger, turmeric, and curry powder. Cook until the chicken is cooked through.
• Pour in the rice, vegetables, and stock, and stir to mix.
• Bring the pan to a simmer, then cover and cook for 20 minutes, stirring occasionally.

.I totally forgot to take an Instagram photo of this one, sorry guys! I was too hungry, and it was too good.

low FODMAP – Day 2: No Bake Cocoa Lemon Energy Balls & Crock Pot Chipotle Chicken

Thursdays are hectic. A has class from 12:30 – 2pm, and I have class from 7:00-10:00pm. So we head into work at 9:00am and I stay there until A’s done with class. Then we grab food from a dining hall, rush home, set up dinner so I can eat by 5:30pm and head out to class in time. So, I have no instagram photos for you today… whomp whomp. I will share with you what I ate today, and their respective recipes where appropriate. I found today that I certainly did not have enough energy, and did not take in enough calories. I’m feeling pretty crappy right now. And my bloating hasn’t gone down at all. I am, however, less gassy- but at the moment that is clearly not helping the bloating, since I still look quite pregnant.

Onto the food:

Morning snacks: a cheddar cheese stick, and 2 No Bake Cocoa Lemon Energy Ball. And a black tea blend.

The No Bake Cocoa Lemon Energy Balls (or Bites) are modified from ea stewart I’m not sure how I feel about them. I actually found them to be a bit too lemon-y, which is very unusual for me as I love lemon and lime flavors. My stomach also felt a little unsettled after them, even though I only had two, spaced over an hour apart. I’ll try the left overs again tomorrow and see how I feel about them.

Ingredients

• 1 cup pecans
• 2 tablespoons special dark cocoa powder
• 1 tablespoon + 1 teaspoon pure maple syrup
• 2 teaspoons lemon juice
• 1 teaspoon lemon zest
• 1 teaspoon ground cinnamon
• 1/4 teaspoon pure vanilla extract
• 1/8 teaspoon sea salt
• 1/4 teaspoon flax seeds

Instructions

• Combine all ingredients in a food processor and process until the mixture is sticky and well combined
• Shape mixture into ~1inch balls. Place on a tray or plate lined with parchment paper and place in the freezer for at least 10 minutes before eating.
• Store in the freezer.

Lunch: A Greek salad, with no onions, from one of the dining halls, and water.

Dinner: For dinner I needed something that took minimal prep, and was easy. I found Kate Scarlata’s Slow Cooker Chipotle Chicken Tostadas, A and I love southwest US and Mexican flavors, so I though these might be a good transition dish. My impression while eating it was… it was okay. It had a nice heat, but need a better layering of spices. I really missed my garlic powder and onion powder in this one.

Crock Pot Chipotle Chicken Ingredients

• 1lb boneless skinless chicken tenders
• 1 can 28 oz petite diced tomatoes
• 1 yellow bell pepper, diced
• 1 red bell pepper, diced
• 2 teaspoons cumin
• 1 teaspoon chipotle chili pepper
• corn tortillas
• shredded cheese (cheddar, or Mexican blend)

Instructions

• Put chicken, tomatoes, cumin, chipotle chili pepper, and bell peppers in to the crock pot. Cook on HIGH for about 3 hours.
• Preheat oven to 375 F.
• Turn off crock pot and shred the chicken.
• Place corn tortillas on baking sheet. – I recommend using parchment paper, or non-stick spray, as I didn’t, and they stuck.
• Using a slotted spoon to drain the juice, spoon the chicken mixture onto the tortillas.
• Top with a bit of shredded cheese.
• Bake for about 5 minutes, until the cheese is melted.

I also had a 1/2 cup of V8 fusion – pomegranate blueberry. And lots of water. That’s it for day 2!

Bloating- Next step: CT & low FODMAP

I met with Dr. S this morning. Surprisingly, its been exactly one year + one day since I met with her the first time.

She is going to check with the records from Dr. B2, and make sure the gluten-sensitivity test was reliable. She also ordered me another CT scan- so on Monday I’ll get my little dose of radiation and hopefully we’ll get something useful from it.

And, saddest of all, she is having me try a low FODMAP diet for the next month. Looking through what I can and can’t have, and I’m pretty sad. It’s not like I ate all the high FODMAP foods often, but we do cook a lot with garlic and onion, and no camomile or oolong tea is quite disappointing. The worst part is making my poor husband go through this with me. For some things, like the wheat products, I can simply abstain while he enjoys his (he loves bread, and would be pretty devastated to give it up), but we’re still going to have to make only one dinner, so a decent portion of what he eats will have to change too.

Overall, I’m not convinced it’s going to help, and its going to cost us more than our usual grocery shopping. But, I’m willing to give it a try.

Bloating – Update

The gluten sensitivity test (the tissue transglutaminase antibody test) came back negative. That rules out Celiac Disease.
We also did a blood test for H. pylori, which came back negative.
So now I’m being referred back to Dr.S, the gastroenterologist. And, somehow I got super lucky and managed to get a referral for tomorrow at 9:00AM! They had a cancellation, which I couldn’t be more thankful for.

I’m sure tomorrow’s appointment will be just another run through of the symptoms, but hopefully that will lead to scheduling the ‘scoping, and getting to the root of whats going on. Dr. B2 said to make sure I show Dr. S the CT results that showed my small bowel intussusception, which I certainly will be doing.

Here’s a picture of some bloating from this afternoon, before I headed to class.

My belly is quite large. It doesn’t always stay that large- it is usually worse when my bladder is full–which makes sense if the full bladder taking up more space, making the bloating more noticeable. But, I also noticed that, boy, that amitriptyline and letrazole has made me chunky. I weighed 144 lbs at my visit to Dr. B2; I weighed 123 lbs at my surgery back in August. It is strange to me, gaining weight so quickly now, as took me foreeeever to break 100 lbs growing up…I think I broke 100 lbs my senior year in high school, and weighed a consistent 115 lbs all the way through my undergrad degree. I broke 120 lbs when these health things really started to snowball into what they are now.

But thinking of the past isn’t going to get me anywhere, I’m staying focused on the present as much as I can.

Bloating – Revisited

Way back last June ago I posted about bloating.

I expected the bloating to resolve post surgery, but it hasn’t. It’s actually gotten worse. I’ve been trying to seek out help for it but got blown off by Dr.B every time I’d bring it up- because I wasn’t very bloated when I’d show up to my appointments early in the morning (with most of my classes in the afternoon/evening, morning appointments are necessary).

Earlier this week I became incredibly bloated after having lunch with my coworkers. I decided it was time to take advantage of the triage option at my university’s health clinic, so that someone (medical) could see me when I looked 6 month pregnant and document it. Of course, the day I walked in the clinic was PACKED. They managed to squeeze me in, but I could only see a P.A., whose background was in pediatrics/preventative medicine. He concluded that, yes- I was severely bloated, and that I should make an appointment to see one of the internal medicine doctors at the clinic. Then he prescribed me some GasX- which did nothing.

Today was my appointment with the internal medicine doctor- another Dr. B, I’ll call her Dr.B2.
Guys, Dr. B2 is amazing. She’s my new favorite doctor. Not only did she listen to me, she looked through my entire binder of medical records AND praised me for having them all available and being so well prepared. We went through possible causes of bloating, such as taking in too much air while eating or drinking, gas-inducing foods, and gluten and/or lactose intolerance.

We concluded that I don’t take in too much air- I can’t really chew gum as it causes my jaw to dislocate, I don’t use a lot of straws, or talk a lot while eating. I’m going to keep an eye out for triggering foods- but it’s mostly vegetables, which are difficult to avoid. I don’t think its a dairy sensitivity, as I don’t eat much dairy and when I do I haven’t noticed much problems. I’m also going to cut out my carbonated beverages (sad, as I love my vanilla coke). And she’s sending off blood work to test my gluten sensitivity.

If the gluten sensitivity test comes back negative she’s going to refer me back to Dr. S, the gastroenterologist, to get scoped – both ways; especially after having that intussusception show up on my CT scan in 2013, she thinks getting a good picture of what is going on is important. And I totally agree.

All and all it is incredible to have a Dr. actually listen to me and look through all my records, then not only agree but suggest that we do testing rather than wait-and-see. I really needed that.

Evolution of Bloating

Bloat. Its one of those fun possible “bonus-features” that can come with endo. I believe it’s considered a result of the inflammatory response to the aberrant tissue. With the increased pelvic pain over the past year, I’ve had increased abdominal bloating.

Below is a chronological look at my bloating, complete with pictures- some of my uncovered abdomen. I’ve put it beneath the break, in case it is something you don’t want to see.