Sunday, May 5, 2019

Jenni's Gut Biome Test

Earlier this year I was contacted by Onegevity, a company that provides cutting-edge microbiome sequencing and artificial intelligence to decode the mysteries in your gut.  Yeah, I totally pulled that from their website. :)  Anyway, they asked if I would be interested in obtaining an analysis of my gut's microbiome.  I was intrigued as to what this might actually show about what's happening inside me since I seem to be somewhat of a medical mystery. They said they would send me one of their new at-home test kits called Gutbio and that this test would examine 7 trillion bacteria using AI to provide me with targeted and comprehensive solutions for managing my gut health issues. Sounds good right? I thought so.

Now before I get into this further, let's have a little lesson on what exactly your gut's microbiome is anyway. Because honestly, I didn't really know. I waded through a lot of medically heavy information and found a great article that you can read in it's entirety HERE.  If you don't want to read the whole article, here is the relatively simple definition of what your gut microbiome is:

Your ‘gut microbiome’ is made up of the trillions of microorganisms and their genetic material that live in your intestinal tract. These microorganisms, mainly comprising bacteria, are involved in functions critical to your health and wellbeing. These bacteria live in your digestive system and they play a key role in digesting food you eat, and they help with absorbing and synthesizing nutrients too. Gut bugs are involved in many other important processes that extend beyond your gut, including your metabolism, body weight, and immune regulation, as well as your brain
functions and mood.  There are many factors that influence the type and amount of bacteria we host and although most of us belong to a certain ‘enterotype’ – similar to having a certain blood type – each person has a unique bacterial footprint.

The Gutbio test was going to analyze all these little bacteria and "gut bugs" inside my intestines and provide me with some answers about what's really going on in there.  It's highly technical and way above my capacity to totally understand or explain, but I was really excited to see what this different kind of testing had to say about my health. Especially considering most of my lab tests come back normal - or at least not bad enough to warrant alarm or treatment of any kind.  So I said yes, please, send me your test. 

In just a few days, I received this in the mail:

All of this was inside:

It looks complicated but it was actually super easy. You basically just take the little tube and put a very small amount of poop in the top of it, screw on the lid and shake it up. Then you place the tube back in the enclosed envelope, seal it, and mail it back. Super easy. Not messy at all. Way cleaner than any other stool tests I have ever done. It was so easy and simple, in fact, that I actually wondered if I did it wrong.  It seemed like something so technical should be harder. But it was really just that easy.

About three weeks later, I received a telephone call from the doctor at Onegevity telling me they found something strange in my results. Something they had only seen in a very small percentage of the people that had done the test. Well shit! I figured I really did do the test wrong.  But he explained what they found and this meant that I had apparently done the test correctly.  I'll get to what they found in a minute.

About a month after I mailed them my poop, I received an email telling me I could log in to the Onegevity site and view my results. The first page said "Onegevity's metagenomic sequencing has examined the abundance, type, and balance of more than 39 trillion microbial cells in your body, resulting in the generation of 6 GB of unique data and insights on you and your microbiome."   Okay, sure. Honestly, I thought I was going to have to channel my inner Amy Farrah Fowler to comprehend everything, but as I read on, the information was actually explained very well and I was able to decipher some really cool things from the results.  It was all broken down fairly simply into various categories.

💩  The first category showed I currently have a minimal inflammation score.  This confirms my Crohn's disease is in remission right now. Good news. This section went into further detail with a neat little graph and chart detailing high and low levels of various bacteria in my gut so I know which ones I need to increase and which ones I need to decrease.

💩  Next, I showed a very low risk for constipation. I mean, seriously now, did we doubt this??

💩  In contrast to my constipation risk, I showed a very high risk for diarrhea.  Umm, duh!!  This actually has a scale of 0-33 with 33 being the highest risk. I scored a 33. I feel like such an overachiever!

💩  The next category was particularly interesting to me. It was my diversity score and I actually scored very low. So low in fact, that only 3% of those tested scored lower than me.  So much for being an overachiever.  So what does this mean?  Well, "studies show that individuals with low gut microbial diversity are at greater risk for certain adverse conditions. Healthy individuals tend to have high gut microbial diversity, while less healthy individuals tend to show reduced microbial diversity." I guess they are saying I'm technically not very healthy.  But I kind of knew that already.   Good new though, this score can be altered and improved by varying your diet.  Bad news, I am very limited in what I can eat. So many foods cause me trouble, including nausea, increased diarrhea, and all different types of pain, so I tend to choose my meals from a very limited selection.  The fact that this test actually showed proof of my restricted diet, eliminated some of the doubt I was having as the legitimacy of these results. Seriously, how could a fingernail sized amount of poop allow them to know that I don't eat a very wide variety of foods?  That's science right there, my friends!

💩  Moving on, I found out I am very low in Niacin or Vitamin B3. After looking at the symptoms of Niacin deficiency, it stands to reason that it would be more than beneficial for me to increase my intake of this vitamin immediately because I do experience some of these deficiency symptoms already.  So good to know.

💩  The results went on to list all the probiotics that I am either in the optimal or low range on.  This result makes it super easy to know exactly what you need. So instead of just picking up a generic "one size fits all" type of probiotic at the store, I can get the exact probiotics my body is lacking.  Super neat.  I've never had much luck taking probiotics in the past, so I am wondering if that was because I was taking the wrong ones.  Maybe over doing it on ones I didn't need and not getting enough of the ones I actually do need.

💩  The next result was what the doctor had called me about before I even received my results.  It was my pathogen screening.  This is the information you have been waiting for right here!  This is the part of the test that shows gross things like E-coli, Giardia, H. Pylori, etc. I tested negative for everything except one thing. I tested positive for Salmonella. What this means is somewhere along the line I contracted Salmonella from something I ate. I always make a joke when eating something potentially shady and risk getting food poisoning by saying, "What's it going to do, give me diarrhea? How would I even know if I got sick?"  Well, apparently that exact thing happened and I did get food poisoning and didn't even know it.  The doctor who called me wanted to know if I was experiencing diarrhea or had been recently ill. I told him my history with Crohn's disease and explained to him that I always have diarrhea - all the time, every time.  He said that I should probably discuss these findings with my primary doctor or GI and possibly be specifically tested for Salmonella again just to be sure that I didn't currently have a problem.  He said that what this test was picking up was the DNA showing that I had contracted Salmonella at some point, but they couldn't narrow down exactly when.  Hmmm.  I have yet to discuss this with Dr. GI because I don't have an appointment until later this month.  I didn't feel it necessary to rush right over there and freak out about it because I don't feel any different than my normal, but I will be mentioning this to him when I go see him.

💩  The final category was the community breakdown of my poop. Over 87% was bacteria of sorts, good and bad - all those gut bugs that are supposed to be there, or not. Various other minute percentages of DNA from animals, plants, viruses, fungi and human DNA were also listed. This is the normal poop make up, I would imagine.  Then, it showed nearly 11% of my poop was from an unknown source "uncharacterized by scientists".  So there is that.

All of this information was compiled into neat little graphs and charts with explanations that were fairly easy to understand. Everything was followed up with suggestions about different probiotics and vitamins that would help to increase in the specific areas I was lacking. There was also a specific diet suggestion, which I have yet to look further into this as of this posting, and the standard disclaimer about getting adequate exercise and rest.  (Right - I am literally writing this at 1:47 AM!)

All in all this process was really interesting and informative.  It required very minimal effort on my part which I loved.  Getting the results simply by logging into the website was very convenient.  The graphs, charts and explanations helped me figure out exactly what the results meant and the suggestions for diet and supplements at the end wrapped everything up nicely.  The only bad part about the whole thing was that a lot of the information is somewhat technical.  The breakdown of each specific bacteria and probiotic was a little overwhelming, but if you take the time to read the explanations provided it does help.

I will be taking these results to my doctor and hope to go over them a little more in detail with him.  Even though he didn't order this test, and when I originally had asked him about doing it he didn't seem to know what kind of information a gut biome test would even be able to provide, I think it will be interesting to hear his opinion about the results.  I'm sure, like me, he won't be surprised by much of the results - except maybe the salmonella thing.

So that's it. That's what happened when I did my Onegevity Gut Bio test. I would be interested in doing this test again in a year to see if the results are similar or if anything has changed. This test was definitely way better and more interesting than your average stool test.  Maybe you should try it too.

Thursday, April 11, 2019

Big Response To A Little Article

Earlier this month I had another article published by The Mighty.  I didn't publicize it on my Facebook because I felt the content might upset those close to me who may not know, or may not want to relive the topic I discussed.  However, after the article was reposted on three separate The Mighty Facebook profiles, it received nearly 700 "likes" and over 400 "shares".  Needless to say, I was really shocked at the response the article received. The numerous comments have completely surprised me also.  I was unaware so many people felt exactly how I felt.  I'm glad so many people were able to relate to this article, but I'm also so sorry that so many people relate to this article.  You can find it HERE.  Thank you, The Mighty, for publishing me yet again!

Tuesday, March 26, 2019

Please don't ask me THAT question!

I'm not a super social person.  I don't like crowds, I have difficulty being around new people and making small talk destroys a little part of my soul every time it's necessary.  I can usually get through it though, right up until someone asks me one specific questions - where do you work?  Well, shit.

I could say something about being a writer, a blogger, or a chronic illness advocate, but that still warrants more conversation and explanation, of which I don't want to give.  And in the back of my mind, I know I'm not receiving lucrative pay for my efforts as a writer, a blogger or a chronic illness activist so I don't think of it as a "real" job.  Besides, I love doing it so it's not like real work.  I used to be able to say "I'm an administrator for the AFLAC Regional Office" or "I'm a hospice nurse".  I wasn't usually met with follow up questions after that.  I can't say that now though because the truth is, I don't work anymore because I'm on disability. That just invites more questions and let's be honest here...

It should be easy to say, "I'm on disability because of Crohn's disease."  That should be enough and technically it's simple enough to say.  Except it brings about more questions I don't want to deal with.  Being asked what I do for work makes me feel embarrassed that I don't have a more impressive response.  So I answer with the only thing I can thing of, "I'm not working right now."  I sometimes still get the looks and the questions, but it's easier to change the subject and side step at that point.

If I do say something about being on disability, I don't like the look I get that forces me to try and explain exactly why.  You know, the two part look - one part pity and one part disbelief both begging for more information because I don't look sick.  I don't look like a disabled person.  I don't look "unwell".  Well, at least when I'm in a situation where someone asks me what I do for a living I don't look unwell.  Those people will never see me when I've had to run to the bathroom with screaming diarrhea for the 24th time that day.  They won't see me doubled over with severe pain in my gut.  They won't see me sick.  They get to see me on the rare occasion that I feel well enough to socially interact.  I don't want to bring up how bad it gets in small talk conversation because frankly, I don't want to have to justify to anyone why I'm on disability.  It was an incredibly painful process that nearly destroyed me and even though I am grateful for the menial income I do get from my disability, I will always regret having to go through the process.  Just admitting I'm on disability brings up all those terrible feelings and the only thing I walk away with is feeling ashamed.  Ashamed I'm not well enough to work and not sick enough to look the part of what people think of when they hear the word 'disabled'.

I can't avoid the question I guess.  I realize it's just normal conversation and people are just trying to get to know me.  It's just what you do when you socially interact with people. **SIGH**  But it's painful and difficult and it's a question I would just rather avoid.  It opens up a can of worms that would take forever to get through and I just don't seem to have the energy to do it.  I hate having to explain how Crohn's disease (and all the rest of the inflictions I suffer) affect me to random people I may never see again. There has to be better questions to ask - or at least a more creative response. How about these five classy responses:

1.  I secretly won the lottery so I don't have to work ever again - but don't tell anyone.
2.  I run an illegal underground child adoption ring - have you met my daughter?
3.  Are you writing a book? Because I am, what do you do?
4.  I manually masturbate caged animals for artificial insemination purposes.
5.  I harvest human organs and sell them on the dark net.

Maybe I should just rethink explaining the writer/blogger/advocate thing. :)

Saturday, March 2, 2019

A Quick Follow Up

In light of the two recent posts I made about my anxieties and fears about traveling, I would like to share with you what actually happened when I went on the trip.  I shared a sample of how my mind raced and thoughts ran wild with off the wall scenarios of human trafficking and though it was kind of funny, I was really concerned.  I was also concerned about being in a situation where I couldn't get to a bathroom if I needed one.  I didn't want to poop my pants or end up in a situation where I made a scene on an airplane.  I was worried about traveling with other people and being in a hotel room or other situation where I would have to get to a bathroom and maybe not make it and all the embarrassing things that happen while I'm in there.  Honestly, I think I worried way too much.  Big surprise, I know.

Somehow I was able to negotiate my way through three separate airports, three airplane rides, four very long taxi rides, one short bus ride, one overnight hotel stay, three meals with people I just met, one meet and greet social situation and a six hour meeting all with absolutely no restroom issues.  Not that I didn't have to go, because I did, but when I did the bathroom was readily available and I had no issues at all with accidents or embarrassment.  I'm also very pleased to announce I didn't fall victim to a human trafficking ring either.  

I have never felt more proud of myself.  I'm not sure how I managed this but it was actually very empowering.  It wasn't until I was safely back home that my intestine and body decided to rebel.  My stomach has decided to prove to me just how unpredictable it can be and my body still aches from lugging my bag through the airports.  My brain and body are so fatigued I can barely form thoughts to write this post, but I'm okay with that. I can take the time I need to recoup and I will.  I accomplished something huge and proved to myself that even thought I have all these terrible anxieties about so many things, it is still possible for me to accomplish great things.  The meeting was a success and I now have new friends from all over the world.  More on that later. Now, I need a nap.

Tuesday, February 19, 2019

Traveling and Poop

As a rule I don't travel much.  I can't even go to the grocery without having to sprint through the store like Usain Bolt to get to the bathroom.  I did develop the ERPK (Emergency Roadside Potty Kit - See below on the right for more information) for traveling emergencies, but having that isn't always practical to use and doesn't always ease the anxiety that is associated with traveling.  Especially when you are with other people.

Recently, I have been selected to participate in something that has given me the opportunity to travel and this means not only getting to a specific destination, but also staying in a hotel room - possibly with other people.  Being in close quarters with people you barely know while you suffer from chronic diarrhea is a nerve-racking experience, even if those people understand. My anxiety constantly makes my brain obsess about things like noises and smells.  I wonder: does the bathroom fan work, will the toilet flush, how private will the bathroom be really?  Then there is the walk of shame coming out of the bathroom once I've finished doing my business. Will the other people say something, will they be cool about it, should I make a joke to deal with it or just act like nothing happened? All these things swirl around my head when I just think about traveling with other people.  Even on family trips I always had a lot of anxiety about being in a hotel room because of these very things - and that was with my own family.

I have been asked how pooping still bothers me so much after having Crohn's for this long and I honestly don't know.  I guess maybe it shouldn't.  I have said a million times - everybody poops.  No one's poop smells like roses and no one can have diarrhea without make terrible noises and smell.  However knowing this doesn't make me feel less embarrassed.  Most often when I'm in a public restroom I have to remind myself that I'm never going to see those other people again so it doesn't matter what I do in there.  Who cares if it smells. But that doesn't always work.  I don't have a choice about going to the bathroom.  When and where it happens is all up to the Bowel Gods and I have zero control.  But using a public restroom and using a hotel room bathroom are two very different scenarios.

I think the majority of my embarrassment is my issue though and not other people's.  I wish there were some way to make it not so.  I wish I could realize that it really doesn't matter and anyone who makes it an issue or has something negative to say, more than just a joke to lighten the mood, is not worth even worrying about.  But when it comes down to sitting on the toilet and knowing what's going to happen when there are other people just mere feet from me separated by barely a wall and a thin door, I cannot help but feel embarrassed and somewhat humiliated that I just can't hold it or wait until another opportunity.  It doesn't bother me when other people poop.  It doesn't bother me if I had to stand in the same room with them while they poop, let alone be on the other side of that thin door.  I don't care at all when I'm not the one on the toilet. So why do I think other people care so much?  It's just poop, right?  And EVERYBODY POOPS!

Monday, February 18, 2019

The Mighty

The Mighty is a website that publishes articles about all kinds of illnesses.  I have wanted to have something published on their site for years but never had the guts (no pun intended) to send something in.  Well, I did and within one week they had published my article.  I'm beyond excited.  Big shout out to my cousin, Kimmy, because she was the reason for this article.  Thank you to The Mighty for publishing me.  You made my year!  Check out the article H E R E.

Wednesday, February 13, 2019

In The Mind of Anxiety

I've read a lot of articles about what it's like to have anxiety and a lot of them are very accurate.  Describing the way anxiety takes over your thoughts, almost removing your basic human ability to reason and think of nothing other than worst case scenarios, can be difficult to describe as well as understand.  I am going to share with you how my mind thinks when anxiety takes over and how my train of thought goes off into directions that are not only totally unfounded and completely ridiculous, but also completely logical at the same time.

This is the point where they say ***Trigger Warning***  sooo, there's that.

I was invited to go to a meeting out of state.  My brain distorts how I process this information and makes decisions about it based on anxiety.  I don't just think, "This could be a scam."  I think, "This is a scam.  It isn't real.  You are being catfished into a human trafficking ring and you are going to get taken to some far off land and never heard from again. You are going to get on an airplane and if you don't shit yourself three times during the boarding process, the flight will crash a you will die.  If you don't die in a fiery plane crash that takes out at least nine city blocks and creates an insurmountable number of human and animal casualties, you will be whisked away to a different location than you think, and then you will be forced into slavery. Because here is every statistic you ever learned about human trafficking....   And since that's not bad enough let's not forget that when you are trafficked no one will understand that you won't make a good slave because you are sick all the time and you will get tortured because you are too fatigued and in the bathroom too much. Wait! Will they even have bathrooms where you will go?  Probably not.  No, that's crazy talk.  That won't happen.  You aren't even  going to get through airport security or board a plane without having to use the bathroom 14 times during the times they say you can't.  You know, the half hour process where you have to wait on the plane and let the flight attendants go through and close all the compartments and tell people to put their seatbelts on and their tray tables in the upright position and prepare for take off.  What are you going to do?  You can't use the bathrooms then.  You can't do this.  You are going to have a major accident.  Then you'll make a scene on an airplane and they will call TSA and you will get tazed on the airplane to make an example out of why you shouldn't make a scene on an airplane.  Other passengers will capture the exchange on their cell phones and post it to YouTube and you will become a viral sensation but only so people can make fun of you and laugh at you.  You will be the subject of three new memes and a five GIFs with funny tag lines about shitting yourself on an airplane.  This isn't getting the word out about Crohn's disease in a positive light.  All because you want to go to a meeting out of state.... "

Yes, really.

And it only takes about ten seconds for my brain to explode into this kaleidoscope of random events that will, more than likely, never happen. It's no wonder I don't sleep. All this anxiety is just one big, long run-on sentence with no real beginning or end.  It continues in a circle of potential "what if" scenarios but also backed up with facts and statistics that I somehow know.  It's confusing and frustrating because I know when my anxiety is causing irrational thoughts, I just don't know how to stop it from happening.  It's a continual fight just to keep myself in a basically rational state of mind and not fall down the rabbit hole into panic.

It isn't just one day of anxiety either.  It won't be me sitting in an airplane fretting until the flight is over.  For me, it isn't just sucking it up and doing something I don't want to do for a minute like emptying the cat litter or getting that pesky flu shot. It is literally all the days leading up to that one day. It's the fret and worry and concern and over thinking that is involved in mentally trying to prepare for every possible scenario that might occur in that one day; but also knowing I will never be fully prepared enough so I start freaking out about that. Then it's the actual event itself, which is almost never as bad as it seemed like it was going to be all the days, weeks, or sometimes months before that I worried about it. Except even knowing that doesn't ever stop the worry and it doesn't end there. It's also all the days after the event suffering extreme exhaustion and the need to come down from the high levels stress and anxiety and all the interaction with other people. The physical fatigue and genuine body pain from having to endure such a distressing ordeal coupled with the havoc that it all wreaks in my gut puts me out for days after.  It's all of those days of anxiety and it's fucking exhausting.

That is just a small glimpse into the mind of my anxiety and how it causes me to think.  I'm getting on the plane though, because I need to conquer the fear and prove to myself that I can do it and nothing terrible will happen.  Anxiety be damned.  So here's hoping I escape being human trafficked because I don't know anyone with "a particular set of skills". 

(Note to self, make friends with someone with skillz!)