Phase 2/3, week 4 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:

There was a lot that happened over the past week. I switched treatment pills, participated in wedding festivities, and my step daughter was at our house this week.

With the new treatment pill I thought sleeping wouldn’t be an issue, but it turns out I was wrong about that. I have been more fatigued this week than previous weeks and therefore had trouble tracking symptoms in the app I use, and there were some days I missed some of the supplements I take in liquid.

I realized that when I have expectations on how a day will go and then something changes and I can’t do things in the same order or need to delay a task that it causes me stress. Now that I realize it’s happening I can address my level of expectation.

Even though I have several issues with my digestion, the symptoms I experience most frequently and with higher severity are related to stress and hormones.

With starting the new treatment pill, there have been some new side effects: loss of appetite, weird taste in the mouth and dark colored urine. There have been some like trouble sleeping and feeling light-headed, that have stayed the same. With the lightheadedness, I only notice it on days I have experienced higher stress or didn’t sleep well.

At my doctor’s recommendation, I tried melatonin to help me sleep later in the week, and it appears to be helping.

I had a few conversations this week that made me realize that I may be isolating myself more than I realized. I also found that conversations that focus solely on my physical issues are draining, whereas conversations that include faith are energizing and uplifting. I need more faith-filled conversations!

Many people ask if I’m getting better. That’s actually not a straightforward question. I physically do not feel good because of lack of sleep and because of some of the treatment side effects. It is possible that my body is getting better even though I’m not capable of noticing at the moment.
This treatment plan is heavily focused on my digestive issues.

 As previously mentioned, my more prevalent issues have to do with stress and hormones. I have been on supplements that help support my hormone issues for several years now. The new doctor has switched the brands of hormone support supplements I’m on, but the glands that are supported are the same (adrenal, thyroid, ovaries).

While I’m hopeful that treating the digestive issues will help my body overall, I’m trying to be realistic with how I may feel at the end of the treatment plan at the beginning of November. It may very well be that I still feel fatigued.

 I’ve had hormone issues since at least 2001, and I started to see a counselor for anxiety in 2005 or 2006. I had digestive issues since at least 2009. That’s 17 years of thrashing my internal bits to some degree. I’m not sure if one 10 week treatment plan is going to ‘fix’ ALL the things that are wrong.

The way I’m thinking about it is that my digestion will hopefully improve after the treatment, and after it’s working better for a while it will help the other body systems function better. I don’t know if anyone can give an exact timeline for how that might go.

So, am I getting physically better? Probably. It at least seems like the treatment plan helps with forward motion.

I'm happy to report that emotionally and spiritually I'm doing really well. With the help of a counselor, I'm unwinding the poor mental wiring that I feel led me to make poor life decisions which in turn led to the extreme stress I experienced a few years back.

On a spiritual level, I'm learning so much. My faith is growing exponentially and I am able to share that faith with others. I have several blog posts about faith planned that I haven't had time to write yet, but you'll be able to find links to them here when I do.


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 fourth week of my 4 phase, 10 week treatment plan on September 24th, 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 has some of phase 2 and 3.

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 22

The wheels are starting to come off the cart a bit. I woke up late. I took my treatment pill after I woke up, but didn’t eat anything until noon. I forgot my liquid supplements this morning because I typically take them with breakfast, but I didn’t actually eat breakfast.

I had a somewhat stressful conversation this morning, and decided that if I ate my feelings in the form of potato chips that would probably be fine. The things I did today felt rushed because I didn’t leave the house for errands until 3:30ish, and I needed to have dinner ready at 6:30.

I know most of my poor choices today are due to feeling tired and then feeling rushed because I’m sleeping so late. At this point, I’ll take sleep whenever I can get it.

Switching topics- this has been the third or fourth day using the squatty potty and it’s awesome.

It’s about 8:30pm and the wired/tired feeling is already present. I’m going to try and go upstairs and get in bed sooner and see if I can actually fall asleep earlier. I have just been staying up and going with the wired feeling, so I have been awake much later.

Tomorrow will be a hectic day, so going to bed earlier would be super helpful if I can manage it.

Day 23

While I did fall asleep sooner last night, it was super windy, and the wind woke me up a few times in the middle of the night.

Today has been long and I’m at the point later in the evening where I’m fatigued and can’t quite make whole thoughts.

I craved junk food today, wondering if it’s because I’m not getting enough calories?

Day 24

Today is the last day on Xifaxan! Still didn’t sleep well despite going to bed early again last night (those bedtimes stories for adults on youtubethat I mentioned in the week 3 post are really helping in getting to sleep!).

I mentioned in an earlier post that I try and chart my symptoms, foods, medicines, etc. in an app called my symptoms. I’ve been really bad at that the last few days. I’m not sure if it’s because I stopped caring, or it’s because I lack motivation from being tired.

Typically, I would feel stressed about not having kept up on tracking everything. At this moment:
 I.just.don’t.care.

I’m both excited and nervous to be switching pills tomorrow. Excited because I’m hoping to sleep better. Nervous because I’m a bridesmaid in a wedding this Saturday and I don’t know what new side effects, if any, might pop up.

The rehearsal dinner is tonight and I did ok energy wise!

Day 25

 No change in sleeping or fatigue level. I started the new treatment pill (Metronidazole) today, and it tastes pretty bad. The taste lingers after the pills taken, but it’s not over powering. I did feel a little nauseous after taking the second dose, but it’s possible that was due to car sickness.

I didn’t feel great after taking the 3^rd dose this evening, but not sure if that’s related to the pill or not. 

I’ll be interested if I sleep better tonight.

I’m hoping that if I start sleeping better that I can start going back to doing some elliptical workouts at the gym this week.

Day 26

I slept worse last night than the previous few nights. I had a weird bowel movement this morning….it looked mostly normal, but there were parts that looked grainy.

I was looking up the side effects of Metronidazole on stool when I found this:

  

Wayyyyyy down on the bottom of the page I did find that trouble sleeping IS a side effect! DANG IT!

Trouble sleeping was not mentioned in the sheet that came from the pharmacist.

I’m feeling super fatigued right now. I’m getting real tired of the whole not sleeping thing, so I called the doctor and asked if there was anything I could do to help with sleeping. She mentioned natural calm, melatonin, and CBD oil. Since I already have natural calm, I opted to try the melatonin. I would have no trouble trying CBD oil, except for that it’s rather expensive, and I’m only on these pills another week or so. I got some melatonin on the way to the vet appointment, so we’ll see how that works.

As I’m re-reading the entry for this day, I’m wondering why I didn’t ask my doctor sooner about help with sleeping. I’m going to blame it on brain fog and not thinking clearly.

Day 27

Today was a big day! My best friend got married, and I was a bridesmaid in the wedding. I left the house around 10:15 am and didn’t get back til around 9:30pm. With events like this, it seems like I get surges of adrenaline that will carry me through an event. I did notice that I would get tired when there were periods throughout the day when we were sitting and waiting on the next thing. This happened at least 3 times.
But it was oh-so-worth it! What a joyous occasion!

I slept about 8 hours last night! Not sure if it was the melatonin, or if I’m so exhausted from not sleeping the last few days that I kind of crashed. 

I didn’t have a bowel movement today, and I didn’t stick as closely to my eating plan as I should have. Since my symptoms are more hormonal in nature, I figured a little bit of cheating would do much to my digestion, especially since the foods I ate were still low FODMAP, just not paleo.

Since I’ve been failing at entering things into my symptom tracker, I don’t remember if I took any psyillum husk yesterday. I did well with bringing and taking my pills. I just didn’t bother taking the supplements, like the psyillum, that I typically add to a liquid.

I rode down to the wedding with a friend of mine who is having some similar health issues. It was so good to talk to someone who understands what it’s like to have chronic stuff! We also spent a good deal of time talking about faith, and Jesus, and staying connected. 

It’s so easy (and mentally draining) to focus on the physical, that when I get a chance to talk about and focus on the spiritual it’s like a battery recharge!

It’s making me realize I need to be connecting with people and having spiritual conversations at least once a week, if not more.

Day 28

 Today has been a little rough, as I suspected.

I was able to go to sleep at a reasonable time, but woke up several times in the middle of the night, then woke up at 6:15 ish because of low blood sugar. When I finally ate a little I was able to go back to sleep for a bit.

I was fatigued for most of the day. I was able to rest after we came home from church, but not sleep. 

A few friends from church set up a meal train for me a few weeks ago and we received two different meals today. With all the wedding festivities going on the last few days, I haven’t been making food. I now have food for a few days, so I’m super grateful for those who brought meals today!

After the evening metronidazole dose, I noticed I had a headache and felt a little light headed.

One of the Metronidazole side effects I read about was urine that was darker than normal, which I noticed last night and this morning. Today I tried to drink more water than normal in the event I got dehydrated from yesterdays events. I’m at about 2.5 liters for the day.

Speaking of side effects, one that I forgot to mention is loss of appetite. I find that it’s especially prevalent in the morning. Since I normally update the post in the evenings, I always forget to write about it.

This evening, I did notice that I wasn’t really hungry for dinner. However, once I started eating it, I wanted more as soon as I was finished.

After dinner my headache was growing worse and I felt overtired. I went to lay down around 9:15 or so. I laid there for a while and continued to feel worse.  The headache became the worst I can remember, and I started to feel nauseous. After 15 to 20 minutes I ran to the bathroom, because it became a situation where there was going to be something that came out of some orifice.
Surprisingly, I had a normal bowel movement, but while it was occurring I had chills and felt like I might pass or throw up.

When I went back to bed the headache had lessened, but I still felt shaky and had chills. Despite all of that, I actually slept pretty well!

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).

Treatment Preparation

To start off- I’m not a doctor, nor do I pretend to be one on TV. I’m sharing my results and what treatments were recommended to me by my doctor in the hopes it’s useful to hear about someone else’s experience.  None of this information is intended to diagnose or treat anyone.

 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.

I talked about my treatment plan at the end of my 3rd functional doctor visit: Results and a treatment plan for GI issues post.

To recap quickly, it’s a 10 week plan with 4 different phases, and each phase is targeting a part of my diagnosis.

When I look at the plan objectively, it does not seem difficult. I have to take a bunch of pills at different times of day. During certain phases I have to eat certain foods and other weeks I’m to follow a paleo-ish diet.

Practically, however, this is overwhelming to me.

Why?

First, my brain doesn’t work like it used to, because one of my symptoms is brain fog. The best analogy I can come up with is this: my brain used to work like a new computer- it was fast and could handle lots of windows and programs open at once. Currently, my brain works like my 8 year old desktop- it’s got lots of programs and junk on it so it’s bogged down and slow. If too many things are open or happening at once, I cease being able to take input and I will have to go lay down. If I focus on one thing at a time, I seem to do ok. If there are 2 or more things happening at once, I don’t process well.

Second, I have fatigue that is unpredictable. I have a certain level of fatigue all the time. The all-the-time fatigue limits me to 1 big thing a day (going out for lunch, going to the gym, going to church), or 2-3 small things a day (appointment, chores, making meals, picking up the kid from school, etc.).  Some days it’s much worse, and I can get up and have breakfast, nap for a few hours, get up and sit upright for a few hours, sort of eat something for dinner, sit around some more, then go to bed. Those days, I have no motivation, and nothing gets done. Before the big energy crash in June, I knew what things would make me tired for a few days. At this point, I don’t always know what triggers the higher fatigue days.

So, on a practical level the brain fog makes it hard to complete sequential steps because any other thing that comes up becomes a tangent. Example: I’m awake! I’ll go downstairs and eat breakfast and take my pills. Oh, the dog wants out. Oh look, there’s tomatoes that are ready to be picked. Maybe I’ll go out to the garden and see what else needs to be picked. Wow, there’s a lot of weeds in the yard…it’s nice and cool out now, maybe I’ll just pick a few. Wait, wasn’t I going to have breakfast? This happens all day long with different things.

On bad fatigue day, things that I would normally do, like cooking breakfast, become really hard. Like prepping to climb a mountain hard. It seems like so much work I just don’t do it. On those days, I tend to eat poorly and don’t eat enough. I also tend to be apathetic, which isn’t great when you’re trying to relate to people.

Knowing that brain fog and fatigue are going to be my biggest hurdles during treatment, I’m trying to take them into consideration while I’m preparing to start treatment. I'm allowing myself almost a week to prepare so that I can give myself enough time to process through everything, and because I want to start treatment on a Monday.

Preparations:

1.       A new pill organizer

My treatment plan as given to me by my doctor consists of a giant list of pills with how many and what time of day to take them. This includes every thing over the entire course of treatment, so it’s a little overwhelming since I’m taking certain pills during certain weeks. I already get confused looking at it during the day, so I decided I needed a bigger pill organizer! As you can see, my old pill organizer (the blue one) only had pills for am and pm, and the new one has compartments for four times a day. I’m hopeful that just having all the pills ready to go and not having to think about them will work out for me.

2.       Checklists and trackers!

Not only is checking stuff off a list immensely satisfying, but I can make my checklists in Excel, and I LOOOVEEE me some excel spreadsheets! In fact, I decided that a nicely crafted Excel spreadsheet is one of my love languages…lol

I currently have 3 spreadsheets started:

-A 10-week pill tracker that has all the right pills at the right times of day, and has the right pills for the right phases. Being consistent with taking pills is not something I have ever been good at. I’m hoping if I can check off each pill as it’s taken, that I will remember to take them.

-A general daily schedule to help keep me on track. As I mentioned, I tend to get off task really easy. I’m hoping to use the general schedule to help me fill in my day planner appropriately.  I’m hoping if I have a plan already written out it will help me stay on track.

3     Not planning/starting many new things; rescheduling things that are close to a meal

I have found it’s hard for me to have events scheduled close to meal times, especially breakfast. Since I never know how sleep will go, I may or may not wake up with enough time to make breakfast AND take all my pills. Anything over the next 10 weeks that is scheduled before about 1pm will need to be rescheduled for the afternoon. For 10 weeks, my whole life will revolve around eating and taking pills.
I had a handful of things that I’ve scheduled for the next 10 weeks. I’m going to try and do them if I can. However, I’m not going to try and plan or start a bunch of new things. For example, a friend told me about a weekly community Bible study on Thursdays from 9:15 to 11:15am. I really wanted to do it, but with it starting early and being close to both breakfast and lunch, I realized it just wasn’t something that was going to work in this season. I realize being social is still important during a time like this, so I will still make plans to see friends on occasion, but only at times that work for me. I’ll probably rely on phone calls more to keep in touch with people because it’s easier to do spontaneously.

4    Symptom correlation

I did this today! About a month ago, I downloaded a symptom tracker called ‘my symptoms'. 

It tracks dang near everything- meals, drinks, sleep, exercise, bowel movements, supplements, more I can’t remember, and there’s even an ‘other’ category where you can add random stuff that doesn’t really fit into another category. Since my only noticeable GI symptom of SIBO is constipation, I went through a csv file I was able to export from the app and see what foods may have caused constipation. For me, I have a lag time of about 2 days between the food and symptom, so it took me a while to go through and try and figure out which foods were the problem. Onions are a really obvious trigger food. It seems that squash may also be a trigger, but not as bad as onions. I wanted to identify trigger foods so I knew what they were. 

5     Find recipes

I need to confirm this with my doctor, but I think I eat a paleo-ish diet during phases 1 and 4, and eat a bunch of high FODMAP foods during phases 2 and 3. *Update- I called my doctor to clarify what I should and shouldn't be eating during different phases, and they told me to NOT eat a bunch of high FODMAP foods that trigger symptoms because it can make you feel bad. Good thing, I called....I was remembering my research and not what they told me*
I’d like to find several good recipes for both phases, and have them printed out and ready to look at. I also need to either find recipes that make leftovers, or start doubling recipes…. it’s really nice not to have to cook every night, and this may help to cut down on the number of freezer meals I need to prepare. I’m hoping to do this tonight and tomorrow.

6    Food prep

I know there are going to be bad fatigue days where I won’t want to cook during the process. I’m hoping if I can make and freeze a few meals that I’ll at least be able to eat well on those days. Because of the amount and type of pills I’m taking, I need to take them with a decent meal. A few weeks ago, I ate a small meal and took all my supplements with it and felt really nauseous….it was not fun. I don’t think I’ll be able to prep food for the whole treatment period, but I’m thinking if I could make a few meals for the next 2 weeks it will be a start. I’m mentally preparing myself to do meal prep about once every week or two throughout the process. I’m hoping to do the initial meal prep over the weekend.

There was one last loose end that got tied up today that I was super excited about. One of the antibiotics that was prescribed was Xifaxin (Rifaximin), which is notoriously expensive. My doctor had faxed the prescription into a pharmacy, and we were waiting to see how much my insurance would cover. When I called the pharmacy this morning they told me that after insurance I was looking at about $1300 for the pills I needed. But then they told me they applied some sort of other co pay discount, and it brought the price down to about $200. I was dumbfounded! When the rep asked if I could do the lower amount it took me a few seconds before I was able to say yes! I was so overwhelmed with gratitude with the lower price that when I got off the phone I just spent a few minutes praising God.

The doctor was waiting on finalizing the treatment plan until we found out the price of the Xifaxin, so it felt like a relief to get it paid for and figured out.

So that’s what I’m doing to prepare. Hopefully, all these preparations are worth it!

3rd functional doctor visit: Results and a treatment plan for GI issues

To start off- I’m not a doctor, nor do I pretend to be one on TV. I’m sharing my results and what treatments were recommended to me by my doctor in the hopes it’s useful for others to hear about someone else’s experience.  None of this information is intended to diagnose or treat anyone.

 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.

On August 28^th, 2018 I had my 3^rd appointment with the functional medicine doctor. We reviewed the data for the SIBO breath test, the stool panel, and the urine analysis.

My 1st appointment was a 2 hour long session to cover my health history and order tests.

My 2nd appointment was to go over bloodwork results, hormone results, betaine HCL trial results, and talk about a treatment plan given the findings from those tests.

At the end of the 2^nd appointment, the doctor noticed that the SIBO lab had come in early so she looked at it quickly. She told me I had methane dominant SIBO, but didn’t go into much detail.

I spent much of my time between the 2^nd and 3^rd appointment looking up as much information as I could about SIBO and related issues. Based on what I had read, I went to the 3^rd appointment prepared for a complex treatment plan.

What is SIBO, you may ask? I'll summarize it a little here, but this article gives a pretty good overview.

SIBO stands for small intestinal bacterial overgrowth. While there is bacteria present all along your digestive system, your small intestine is not supposed to have much compared to the large intestine and colon. As far as I understand, the bacteria that overgrows in your small intestine is not necessarily bad bacteria, it's just that it's growing in the wrong place. SIBO can cause lots of digestive issues and icky GI symptoms. Before the test, I did not think I had SIBO because I really only ever experience one normal SIBO symptom- constipation. However, I also found that SIBO can cause fatigue and brain fog, both of which I have experienced for about 2.5 years.

We started out reviewing the SIBO test results, which was pretty quick since I already knew I had methane dominant SIBO.

My treatment course for SIBO looks a little different than others I had seen online, but I’ll talk more about it at the end of this post. The reason for this is because my SIBO treatment takes into account other issues that came up in the tests. Just like every person is different, each SIBO treatment for an individual may vary depending on what other issues they have. 

The doctor then walked me through the results of the GI effects stool profile. I did look up the interpretation guide for this test a few weeks prior to the 3^rd appointment, but I didn’t spend as much time looking at it, because there are lots of potential results.

The results indicated I have a parasite, I don’t digest fats well, I have a yeast overgrowth, and the bacteria in my gut are not well balanced.

The parasite results are pretty easy to understand- they’re either found in your stool or they’re not. It turns out I have blastocystis hominis.

When I asked my doctor how one obtains blastocystis, she said it was fecal to oral transmission typically from contaminated food or water. Gross! I learned from the CDC website  just now that people who have blastocystis may or may not have any symptoms. Given everything else we found, I don’t know what, if any role, it might play in my health issues. My treatment for this parasite is an antibiotic called metronidazole.

The stool samples had quite a bit of fat in them, meaning I don’t break down fats well. The test splits fats into triglycerides, long-chain fatty acids, cholesterol, and phospholipids. My values for phospholipids and long-chain fatty acids were over the reference range, the triglyceride value was on the high end, and cholesterol was normal. The total fat count was over the reference range. I was prescribed a digestive enzyme that should help with the fat break down until my gut health improves.

The yeast result was not a surprise to me in general, but the way it showed up in the lab was surprising. I have had issues with yeast in the past, and I know if I eat lots of sugar I will end up with a yeast infection. In the stool results, yeast showed up on the low end of the range, but apparently, if it shows up at all it indicates the number would have been higher before it reached the lab. The yeast will be treated with a round of Nystatin.

The gut bacteria imbalance results were the ones I found most interesting.

 I had previously thought that lots of good bacteria in your gut are good. However, having too much good bacteria in your gut can be bad, because they can out compete the other good bacteria. For example, I have some lactobacillus, but it’s on the low end. I have lots of other bacteria that are quite high and aren’t allowing some of the other types of good bacteria to thrive.

In conjunction with the bacterial levels being imbalanced, my results indicate I have low short chain fatty acids (SCFA). SCFA’s are produced by good gut bacteria as part of their fermentation processes and help the gut to be healthy. Until we can get the gut levels rebalanced, I’ll be taking a supplement called probutyrate to help with the low levels.

After all of the GI effects results, we went over a small portion of the urine analysis results. I had completely forgotten I had given urine samples, so I was surprised when we went over those too! I think I forgot about them because they were the easiest sample to give.

We really only looked at the bacterial dysbiosis markers. Since this was towards the end of my appointment, my memory on what the doctor said about them is fuzzy. I think she was just pointing out that the gut dysbiosis markers were wonky in the urine analysis, which confirmed the results of the stool samples. I was told the urine results would be gone over in more detail at the 4^th appointment.

Let's loop back to SIBO for a moment so I can tell you how my doctor arrived at my treatment plan. There are both manmade and plant-based antibiotics that can be used to treat SIBO. The manmade antibiotics have had more studies done, and the results are pretty well established. While the plant-based antibiotics aren’t studied as well, those prescribing them have seen that they can work just as well as the manmade antibiotics.

In my research, most others treating methane dominant SIBO use a combination of Rifaximin and Neomycin that are taken at the same time.

Because of the blastocystis, I need to take a course of Metronidazole to kill it off. Apparently, Neomycin and Metronidazole can both be used in SIBO treatment. Since I already needed one manmade antibiotic, it made sense to go ahead with the Rifaximin assuming my insurance covered some of it. Rifaximin is quite expensive and tends to only be covered in certain instances, so we’re waiting to see what amount insurance might cover.

Apparently, we can replace the Rifaximin with herbals if necessary, but I got the feeling from my doctor that it’s more typical to pair like antibiotics together.

The doctor had mentioned that she had seen a different patient earlier in the day that had SIBO and other concurrent issues that needed herbals, so in that case, it made more sense to go the herbal antibiotic route for that patient. Again, depending on what other conditions a person has, the treatment can be quite different.

I had read in several others blogs that people took either Allicin or a type of guar gum to help activate the SIBO bacteria so they could be more easily killed off during the treatment phase. When I asked about this, the doctor said to focus more on food sources that cause symptoms for me rather than on another supplement. I found her to be very conscientious about level of functionality during treatment and number of pills taken at a given time.

Speaking of functionality, most other treatments I had read about combined the Rifaximin and Neomycin at the same time. With my treatment plan, I’ll be taking a course of the Nystatin to kill off the yeast, a course of Rifaximin for the SIBO, then a course of Metronidazole (Neomycin alternative) that will help with the SIBO and the parasite. The courses are taken one after the other instead of at the same time to help with functionality during the treatment.

After all of that, I’ll have a four-week course of Berberine and an olive leaf complex. This was at the very end of my appointment, and I honestly don’t remember the exact reason for this. 

The whole treatment period will take about 10 weeks.

During the active treatment, I will also be taking some supportive supplements:

•      A digestive aid
•        A SCFA supplement
•        A probiotic
•        An immune globulin concentrate to help with passive immunity

I will also be taking supplements to support other issues that were discussed in my 2nd appointment, which I’ll talk about in a different post.

While hearing about the treatment itself wasn’t overwhelming during the appointment, sitting down and trying to figure out how to get through it is becoming increasingly overwhelming, especially with decreased mental capacity. I’ll talk about prepping for the treatment phase in a different blog post.