Phase 2, week 3 of treatment

I tried to split this post into three sections- insights from the last week, background, and a summary of each day. If you are a friend or family member, I’d recommend sticking with the background and insights. If you’re someone who is having digestive issues, or is wondering what treatment might be like, I’d recommend reading everything.

This post is for informational purposes only and is not intended to treat or diagnose anyone. Go see a doctor for diagnosis and treatment.

 Also, my brain fog is pretty intense at times. I try to make sure what I write is correct, but I may get things wrong from time to time.

Insights from the last week:

 I have not slept well this week, so my adrenal fatigue symptoms are getting worse again. I looked into Xifaxan side effects, and trouble sleeping appears to be one of them. For lack of a better term, I feel caffeinated, especially in the evenings. Another Xifaxan side effect I had was feeling off-balance/lightheaded. That symptom faded over time, but did show up again one day this week when I was feeling particularly fatigued.

On days I’m feeling fatigued, it’s really nice to just have meals that are ready to eat. I’ve decided that if there is a day I feel decent it would be beneficial to cook something in bulk.

I bought the Monash University FODMAP app this week, and I wish I would have just spent the $8 sooner. I didn’t realize that food serving sizes are necessary in determining if something is high FODMAP or not. A serving of a particular veggie might be fine at 1/3 c, but at ½ c becomes high FODMAP. I was really frustrated with not knowing about that.

I also got a squatty potty this week on sale. I forgot to update about it on the daily posts, but I have found that it really helps have more comfortable and faster bowel movements (especially for someone that tends towards constipation).

In the continuing battle to get to sleep/sleep better/sleep more, I discovered bed time stories for adults on you tube. This has been a great find for me, and I do think it helps me fall asleep faster than I would on my own.

From day 21:

 In listening to the bedtime stories, I learned something about focus that relates to my life in general. As I listen, my mind sometimes wanders and fixates on something- a conversation from earlier in the day, what needs to be done tomorrow, conversations I need to have, etc.
When I realize that my mind has drifted, it is possible for me to choose to continue with where my mind wants to go, or to return my focus to the story. Sometimes I choose to refocus on the story, and I can stay there. Most of the time I choose to focus on the story, and my mind drifts back to what I was thinking about again and again and again. Each time I realize the drift has happened, I can choose to refocus on the story.

I have a whole set of blog posts planned about the faith aspect of this journey that I haven’t finished yet. They are separate posts because that’s how I’ve operated the last few months- I focus on the physical, then I focus on the spiritual. Sometimes I spend more time focusing on the physical than I would like. I do need to be aware of the symptoms I am experiencing, but obsessing about them isn’t helpful. Being aware of the food I’m eating is necessary, but beating myself up for making a food mistake isn’t helpful.
Jesus once told his disciples: "My food," said Jesus, "is to do the will of him who sent me and to finish his work. John 4:34 NIV
Truly, it is spiritual sustenance that is keeping me going at this time.
Today I even moved on from ‘just keeping going’ to the type of sincere gratitude that makes you emotional all day. God has been SO GOOD to us, I can see and feel how in all things He has been/is working for the good of those who love Him, and have been called according to His purpose (Romans 8:28).

  

Background:

This particular bout of health issues flared in 2015. My job had become extremely stressful and travel intensive, in conjunction with some major life changes: moving in with my boyfriend, becoming a Christian, getting married 2 weeks after being proposed to, becoming a step parent, then planning a wedding reception for the following summer.

 In 2016, I was finding I could no longer work full days, and my hair was falling out. When I felt that work was finally slow enough to go to the doctor, I was diagnosed with adrenal fatigue and told to take a month off of work to rest. HA! It didn’t seem possible at that point. However, I did take 2 weeks off then go back at half time in May of 2016. Over the summer I was able to do less and less, and I finally ended up quitting my job in October 2016.

Between October 2016 and June 2018 I had the opportunity to learn how to rest and was able to work on a treatment plan for adrenal fatigue. I was feeling like I was making good progress in the first 3-4 months of 2018. Looking back now, I can see where I was sliding back a bit in April and May. In June, I experienced an extreme energy crash that left me looking for answers, since I didn’t think I had done anything significantly different than I had previously. In the beginning of July 2018, I went and saw a functional medicine doctor who ran a bunch of tests up front to figure out what other things might be wrong with me.

As mentioned in my post about the results from the last visit, my test results show that I have a yeast overgrowth, a parasite, SIBO (small intestinal bacterial overgrowth), and gut dysbiosis.
Previous test results indicated I have low stomach acid, nutritional deficiencies, and hormone imbalances with the adrenal glands, ovaries, and thyroid.

I have been on supplements for the hormone imbalances (previously diagnosed as adrenal fatigue) for a while. They started with my previous doctor. The new doctor is continuing to work on those issues, but with different supplements.

I started the third week of my 4 phase, 10 week treatment plan on September 17th, 2018. Phase 1 will work on the yeast, phase 2 will work on SIBO, phase 3 will work on SIBO and the parasite, and phase 4 will continue with the SIBO. The supplements for everything else will continue through the whole treatment period. This week was all phase 2.

I currently take 11 different supplements throughout the day. One is a phase specific treatment pill. Three are for the hormone imbalances, 3 are for nutritional deficiencies, and 4 are for digestive support.

Day 15

At this point, I’m sure one of the Xifaxan side effects I have is trouble sleeping. It is starting to kick my butt. It’s about 9:30 pm right now and I feel a bit like a zombie- fatigued, but not very sleepy.

I think the off balance/light headedness is either starting to fade, or I’m getting used to it.

I’m not as hungry as when I first started taking Xifaxan, so that side effect has also faded.

I’m still irritable most days, but I don’t know if that’s a direct side effect, or if it’s more related to not sleeping.

While I slept 8 hours last night, I’ve been getting 5-6 hours for the last several days before that, and I’m not caught up at all.

It took me a long time to get motivated to get going today. I needed to run a few quick errands then make a few batches of soup for this week. I also needed to make dinner for some friends we had over. Even though I was feeling fatigued, once I got going I was able to keep going.

We don’t have my step daughter this week, and my husband is going out of town for a few days, so I’ll have 2 whole days where I will have the house all to myself. I really like days home alone when I’m not sleeping well, because it’s much more quiet and there’s less going on. The less sleep I get, the more irritable I get. The more irritable I get, the less I can handle extra activity and noise.

 I also don’t have to cook for other people. While I do like cooking, I also like leftovers. Like, I can eat left overs almost indefinitely. My family, on the other hand, can only eat the same meal 2-3 times before they refuse to eat any more of it. Between the soup and the dinner I made today, I probably wont have to cook until next week.

Day 16

I finally slept a little longer last night, something between 8 and 9 hours.  Still not caught up on sleep, and feeling pretty fatigued today. I’m so glad I don’t have to worry about cooking the rest of the week. If the trend of not getting enough sleep continues, I’ll very likely be non-functional by the end of the week.

I’m still having daily bowel movements, though the last few were a Bristol scale 2-3, so towards the constipated side. I’m still glad things are moving and not just hanging out in my intestines.

I was going to try and go to a yoga class today at noon, but seeing as I now have 4 minutes to get there, that’s not going to happen.

I rested most of the day and felt a little better in the evening.

For several weeks now, I’ve been trying to make sure I take my treatment pills with my meals. The current treatment pill itself doesn’t need to be taken with food, but I know if I take all my supplements on an empty stomach I’ll feel nauseous. 

It made for some strange meal times if I happened to wake up late. I finally gave up trying to take the treatment pills at meal times. I’m shooting for taking them at 9am, 2pm, and 7pm. I set phone alarms to remind me.

I had some really strong food cravings this evening and I’m blaming it on PMS. I may or may not have had a few tortilla chips and a few cookies. It was all low FODMAP, but not paleo. I very nearly walked to the store and bought some potato chips, because crispy and salty sounds AMAZING. Thus far I have resisted, but not sure how long I can hold out.

I was super tired in the evening, but when I laid down to go to sleep my mind was running rampant due to a phone call I received. Sometimes when my mind won’t shut off, I imagine myself getting dressed, walking to the store, buying something, then coming back home. Normally this is so mundane I end up falling asleep partway through. But not tonight. I would make it from my room to my closet before my mind would wander off again. I started the exercise 5-6 times before I finally gave up.  After laying there a few hours, I happened to think of a girl I used to work with who told me she would listen to podcasts to help her fall asleep. I didn’t feel like searching for a podcast, so I looked on you tube for some sort of sleep aid. I found I few hour long videos that were stories for falling asleep. Here’s the one I listened to.

The narrators voice was enough to keep my mind loosely engaged on the story, and to keep it from running amok. I’m not sure how long I listened, but it feels like I got about halfway through.

Day 17

I slept a little longer last night, but didn’t feel rested upon waking. I ended up finding out later in the evening yesterday that I needed to run several errands today, and ended up having two visitors. 

The last few weeks more than 2 things per day tends to max out my capacity, so this felt like a test.

I had a friend drop by quickly in the morning to drop off some things. I then needed to box and print postage for 2 of my husband’s amazon orders. I don’t do this very often, so it takes 4 times longer than it needs to. I then needed to ship out the orders and go to the subway nearby to grab sandwich for my daughter since I was picking her up from school to have lunch together. After subway, I stopped by Macy’s to pick up my daughter’s homecoming dress, then went to her school to pick her up. She wasn’t feeling well, so she ended up coming home with me for a few hours to rest before I needed to take her back to school for cheer practice. When I got home I walked and fed the dogs right away because a storm was blowing in. About an hour after that, another friend came over for the evening.

While it is good to know I could manage everything, it definitely maxed my capacity. I don’t think it would have been possible earlier in the week when I was only sleeping ~6 hours per night.

My cycle started yesterday, and it was close to the predicted start date in my period tracker app. This is always good news for me; I used to have 40-60 day cycles. Now my cycles are more regular and occur approximately every 31 days. I hope this means that my hormones are in a better place than they were a few years back.

Since listening to a sleep story last night worked pretty well, I looked for another one and found a video that was based on Psalm 23.

I was physically uncomfortable last night, so it feels like I listened longer tonight than the night before. I do feel like these videos are helpful, so I will try to continue with them.

Day 18

I slept about 8 hours again last night, but am still waking up tired.  As I mentioned previously, the off balance feeling is gone, so the most noticeable symptom of the Xifaxan at this point is trouble sleeping.

My bowel movements are still happening daily, and are typically a 2 on the Bristol scale. There were a few days I haven’t had as much water, so I’m wondering if that might be the cause for the scale score.

I tried to be smarter with outstanding chores today. I had a few phone calls I needed to make, so while I made them I worked on a large pile of dishes from a few days ago, and watered all the indoor plants. Talking on the phone seemed to help overcome my chore inertia.

My husband had been gone on a business trip the last few days, but came home around lunch. I had a few other errands that had piled up over the week, so we went and ran a few hours of errands this afternoon. We headed back home around 5pm, and I was feeling pretty fatigued at that point.

It’s about 8pm now, and feel mentally and physically exhausted, but not sleepy tired.

I will be so glad when I’m off these pills and get rid of the caffeinated feeling! I’ve got about one more week to go before I switch to the metronidazole. I'm hoping It won't make me feel caffeinated!

One thing I realized yesterday is that if there are any days that I feel half way decent, I should be cooking something in bulk. I did make a small batch of muffins yesterday just to try them. I liked them, so the next time I feel ok I’ll make a double batch and freeze them.

Speaking of freezing things, I could have made more soup either yesterday or today, but I have no more of my preferred storage containers-  Ball wide mouth quart size jars.  I was able to get a dozen more jars today, so the next time I feel good I’ll be able to make another batch of soup.

Given the up and down nature of my energy levels, I still think one of the best things I can do for myself is to continue to cook in bulk when I can so I have the right kind of food to eat when I’m feeling tired.

Day 19

The fatigue is getting worse. It’s especially bad in the morning, but I start to feel more normal after 5 pm. I’m still trying to use the adult bedtime stories to fall asleep. They help to a degree, but I don’t know how much I can fight the side effect with other things.

I felt off balanced/lightheaded again this morning. I thought that side effect had faded. I was more tired this morning than previous days, so maybe that’s why I felt that way again.

I made two purchases today which may be helpful.
1. I got a squatty potty on clearance from Bed, Bath, and Beyond and was able to use a coupon, so ended up getting it for about $15. I’m excited to try it.

2. I finally paid for the Monash University FODMAP app (https://www.monashfodmap.com/i-have-ibs/get-the-app/). I’ve been increasingly frustrated with doing a google search for every food I might want to eat and decided the $8 was worth it. I haven’t had much time to look into it, but I anticipate it being helpful.

Day 20

I woke up several times last night. I was tired this morning and felt highly fatigued in the afternoon. Started to feel more normal after about 7:30 pm.

I had a chance to look more at the Monash food app today. I’m really frustrated that I didn’t buy it sooner. There have been various recipes I’ve looked at that ID a certain food or recipe as high or low FODMAP, but the designation really isn’t that straightforward. Most foods listed in the app have a volume at which the food contains moderate to high FODMAPs. The app also identifies which type of FODMAP/s that a particular food has. 

A few weeks back I found a recipe for zuchinni soup that was supposed to be low FODMAP. Well, it turns out Zuchinni is ok in a 1/3 c serving, but has moderate FODMAP content at ½ c. I have been eating large amounts of this soup multiple times a day. Since the soup is blended, I have no way to know how much Zuchinni I’ve been eating per serving. Unfortunately, Zuchinni is high in the one fodmap I have the most issues with: oligos-fructans.

I really wish I would have known about the app, bought it, and gotten used to low FODMAP eating BEFOREEEE I started the treatment plan. Thinking back on what I’ve been eating, I really haven’t been doing a great job at eating low FODMAP the last few weeks.

Who knows how much this will affect my treatment plan. As far as I can tell, treating SIBO is still an evolving sciencec. There are a few different diet recommendations that people with SIBO can follow, and low FODMAP is just one of them. I had previously read that some people try and eat FODMAPs while on antibiotics to activate the bacteria so that they are active enough to be killed off. Honestly, there probably is no one-size-fits all treatment or diet. Every body is different.

 I tried a stir fry recipe tonight trying to follow vegetable amounts from the app, and something in it caused symptoms. Maybe because I ate too much at once? I didn’t measure my serving size, but I was pretty sure it was all within limits. The only thing not in the app that I added were sweet potato glass noodles. Sweet potatoes are ok in smaller amounts, but the noodles were processed so they may have been different. I’m feeling discouraged.

Day 21

I woke up around 2 am with stomach cramps, which is the first time that’s ever happened. I’m assuming that was caused by something I ate for dinner yesterday. Eventually went back to sleep and woke up again around 9 am. Even though I feel like I slept enough overall, waking up is hard and mornings are slow.

This morning I needed to move a little faster to make it to our 10 am church service. Sometimes having a little motivation is helpful!

I felt pretty fatigued in the afternoon for a few hours, but was able to get some chores done later in the evening.

I’m still feeling wired/tired around bed time, and am trying to use some sort of adult bedtime story to help my mind calm down enough to sleep.

In listening to the bedtime stories, I learned something about focus that relates to my life in general. As I listen, my mind sometimes wanders and fixates on something- a conversation from earlier in the day, what needs to be done tomorrow, conversations I need to have, etc.

When I realize that my mind has drifted, it is possible for me to choose to continue with where my mind wants to go, or to return my focus to the story. Sometimes I choose to refocus on the story, and I can stay there. Most of the time I choose to focus on the story, and my mind drifts back to what I was thinking about again and again and again. Each time I realize the drift has happened, I can choose to refocus on the story.

I have a whole set of blog posts planned about the faith aspect of this journey that I haven’t finished yet. They are separate posts because that’s how I’ve operated the last few months- I focus on the physical, then I focus on the spiritual. Sometimes I spend more time focusing on the physical than I would like. I do need to be aware of the symptoms I am experiencing, but obsessing about them isn’t helpful. Being aware of the food I’m eating is necessary, but beating myself up for making a food mistake isn’t helpful.

Jesus once told his disciples: "My food," said Jesus, "is to do the will of him who sent me and to finish his work. John 4:34 NIV

Truly, it is spiritual sustenance that is keeping me going at this time.

Today I even moved on from ‘just keeping going’ to the type of sincere gratitude that makes you emotional all day. God has been SO GOOD to us, and I can see and feel how in all things He has been/is working for the good of those who love Him, and have been called according to His purpose (Romans 8:28).