S.I.B.O – Still Ingesting Bad…Ooze? (Ok I’m reaching here…work with me)

April 14, 2015

Another update from…SIBO GIRL!  She runs faster (to the toilet) than a speeding bullet!  Her ability to bloat is more powerful than a locomotive! She’s able to leap into uncomfortable conversational topics (like her bowel movements) in a single bound!  Ok, so I need to work on this particular super hero bit.  She’s coming off a little…gross.  And sad.

Greetings from the land of no food.  For those of you that didn’t read the first installment in my SIBO saga, please click here to get caught up.  I am updating on the progress of my elemental diet, a 3 week all liquid diet designed to help move my body into remission from Small Intestine Bacterial Overgrowth (SIBO).

I have gotten an overwhelming response from the first blog post.  I had no idea that my small intestine was so fascinating!  I have received many messages and emails regarding others’ journey with the beast that is SIBO, and other chronic illnesses.  I feel honored to hear your stories, so keep sharing them with me.  🙂

Before I get into my elemental updates, I wanted to talk a little about what it’s like to have a chronic illness that largely involves your bowels.  Well…it’s awkward.  It’s constantly awkward. I’ve always been a social butterfly and I love keeping busy and being involved in 623 different things at once.  sb9But since trying to heal from this, I’ve become somewhat reclusive.
I don’t want to do this at all, but when you have to lug your pureed butternut squash to a beach bbq and sip water while everyone else chows on cheesebugers and beer, it does put a damper on your fun.  And then there’s the explaining…and this isn’t exactly an easy illness to discuss.

Let me invite you to a common scenario in my life:

A dude comes over to me at a beach bbq with a hot dog topped with melty cheese in one hand, dark beer in the other.

Me (resisting the urge to take a giant bite out of the hot dog and rip delicious-looking beer out of dude’s hand): Hey there!

Hot dog man: Hey!  Aren’t you hungry? WHAT is that you’re eating? (looks disdainfully down at my pureed carrots that I am eating with a spoon…on the beach).

Me: Heh. They’re carrots.  

Hotdog man: Don’t you want a hot dog? 

Me: Nah.

Hotdog man: Why not? Why did you bring your own food? 

Me: I’m on this special diet for medical reasons and I can’t have things like hot dogs or beer. (still resisting the urge to punch him in his healthy gutjust so I can steal his hot dog and have my way with it)

Hotdog Man: (Asks a million questions, mostly seemingly out of obligation…what illness I have, what I can eat, what I can’t eat, what causes it…) then asks: So, what are the symptoms of this SIBO thing?

Me: Uhhhhhh…errrrrr…wellllll…stomach pain, bloating, brain fog, joint pain, excessive gas, diarrhea, constipation (hotdog man looks at me rather disgustedly), that kind of thing.  I then give him one of these: 

sb1

Hotdog man: That sucks.  

Me: Yeah. 

Soooo, social situations can be tricky.  I am also constantly being asked, “Why are you eating like that?  Are you on a diet?  You’re so skinny already!!” or “ONE beer isn’t going to hurt you, I’m sure.” or the old standby, “I almost wish I had an illness like you so I would eat healthier and lose weight!” For those who throw out that last one…stop. Just stop.  Not only do I not wish this on anyone, it’s demeaning to those that find this situation to be very difficult and limiting.  Being skinny does NOT equal happiness, I promise you.  Also, the desire to share silver-lining scenarios (of the “at least you…” variety) in an effort to be positive is understandable, because I realize you often don’t know how to respond or what to say, but it can be frustrating to someone struggling.  Sometimes, people need to be able to feel their feelings.  It’s ok (and healthy!  and normal!) to be sad, or mad, or frustrated.  We all need to learn to be more comfortable in these uncomfortable spaces, because we all have these feelings. And lastly, no, you absolutely do not want this just to “get healthy.”  Guess what?  You can get healthy all on your own without having to drink your food like a baby!  Be happy about that. Like, fo’ real.

With a big diet overhaul like this, you surrender yourself to a lot of judgment. It’s really strange when you think about it.  I am so committed to getting my body back to healthy that I’m doing this incredibly difficult and hard thing, yet I’m still being judged.  For what, not eating frenchsb6sb5 fries?
 I’ve come to learn, friends with similar illnesses, that this isn’t about us or our choices at all, it’s about the person judging.  It ignites something within them. Perhaps it’s shame because they don’t take care of their own bodies, or maybe it’s guilt because they feel strange eating around someone that has to drink their meals, or it could be that they feel judged by you, simply because you are doing something that they “would never do” or “could never do.” Many people tend to think that if you don’t choose their choices or their way of living, that you are subtlety saying something negative about their choices. I think it’s a great divider in our society.  I believe it’s why others sometimes get so defensive and judge me so harshly for not having children.  Sure, they may genuinely think I am missing out and feel sympathetic for that (which by the way I can understand), but I believe they may also feel like by not choosing Motherhood, I am making a statement that it’s not good enough for me or that I’m somehow above it. I would understand more if I were making unfair, cruel statements like, “What you’re eating is disgusting and terrible and you should stop!” or “Motherhood is stupid!” But I would never make those statements, because I do not feel that way…however it seems they are projected onto me anyway from time to time because my choices are different.  The key word here is “projected.”  We all project onto each other in big and small ways everyday.  I try to remind myself when someone says something judgmental toward me about my eating choices, that need to remember to be empathetic towards them because they might be struggling with something that I cannot understand.  Do I always succeed? Hell nah. Do I try?  Yes.  (When I am in the right frame of mind.  Or like, when I’ve had enough sleep.  Or like, when I’m in a good mood.  Or like, when I’m having a good day healthwise). Ok maybe I could be a little better about this in general.

But wouldn’t it be nice if we could instead just step back, take a breath and listen? And empathize?   I have said it a million times over, but I believe empathy is one of the greatest (and most missing!) tools we have as human beings.  If we could only learn to let people be where they are and hold our judgment or decipher if we are judging based on our own issues, I believe we could be much happier people.

A new friend that reached out to me after reading my last blog explained how much she was sb2struggling with SIBO. She genuinely wants to live a healthy, happy life, but finds herself feeling depressed and hopeless at times.  She wrote to me and asked, “How do you manage to stay so positive?”  I nearly spit out my grotesque liquid shake, and not because of its foul-osity, but because it made me laugh.  I cannot think of a single person in my life that wold describe me as “positive.”  Positively combative?  Yes. Positively Opinionated?  Yes. I have definitely often been described as “perky” (See above photo) because I am friendly and smiley and goofy, but I am NOT of the sunshine-y variety.  So just in case I let my silliness and humor come through a little too much on my last post, rest assured that I have indeed struggled with this. Tremendously.  In fact, it has made me realize that if I ever get a truly life-threatening illness I will be the biggest baby on the entire planet.

As I briefly alluded to in my last post, when I was first diagnosed I was depressed and scared after learning that this was a chronic illness that would require a drastic lifestyle overhaul.  I decided to bravely face this diagnosis by eating MY BODY WEIGHT in pizza and chocolate for 5 days while binge-watsb8ching Gilmore Girls and weeping.  (Ha, you should have seen my belly THEN…it looked like I was having triplets). I have also fallen victim to complaining/crying/talking ad nauseam about this to my poor husband so much that he has likely developed caretaker’s fatigue (when you are helping take care of a chronically ill person and become bitter, resentful, stressed, and exhausted from everything being all about them).

Now, let me be clear: I often don’t feel well.  I feel tired and bloated and have tummy sb3pains and sadly the toilet and I have become new besties…but I am not THAT sick.  I think we (some SIBO sufferers) can really make the mistake of confusing discomfort with sickness and I have often done this. I need to learn to deal with uncomfortable.  I need to learn to better control my need to whine because whining makes me feel better (while making everyone around me miserable).  I need to understand that other people with far more debilitating issues have it much, much worse and I am crazy lucky (knock on porcelain). My own sister has severe Ulcerative Colitis, an extremely awful bowel/intestinal disease with far worse symptoms than my own, yet I am embarrassed to admit that I have spent over 30 minutes complaining to her on the phone on multiple occasions.  Basically, I am not above being a huge, dramatic, completely self-absorbed wussy assface is what I’m saying.  And while sometimes that is ok, maybe even necessary, we (and I!) have got to learn that something like this cannot rule our lives. There is still so much to see and do and be and accomplish. And conversely, on especially bad days we should gives ourselves  break, take a much-needed rest, whine to someone kind enough to listen, then get right back to living our lives when we can. Because as cliche as it sounds, life is a gift.  So that’s how I stay positive.  That, and a sense of humor go a really long way.  I’ve learned to make fun of the ridiculous situations this illness puts you in, which helps more than you know.  And lastly, get outside and get moving.  There are some days I feel too terrible to do much, but there are many times where I feel fine or somewhat fine adjacent, and that’s when it’s important to be outdoors.  There is something healing about nature.  So go for a light jog, a long walk, a short hike with the kids or your significant other, or just go to the park and lay in the sun and read a book.  You will feel better, I promise.  These things are healthy and good for the soul and body and I am convinced that exercise is good for the gut as well. And bonus! The outdoor options don’t have to revolve around food.  🙂

ELEMENTAL DAY SIX:
I had some trouble sleeping last night.  I am definitely having kidney pain.  It feels like a burning in my lower back and is definitely reminiscent of a UTI infection.  It woke me up several times.  I decided to cut out the coconut oil today, since I couldn’t help but wonder if I was reacting to it.  But of course that eliminated more calories and fat so I ended up feeling much hungrier because of it.  I am STILL bloated (DAMMIT!) and I followed the usual pattern of perky as a cheerleader on cocaine in the morning and then crestfallen and depressed at night.  Not sure what that’s about.  I’ve also discovered that this lovely solution gives me “fart breath” as Joe calls it. Lovely.  Not only am I sexy as hell with a giant belly that looks like it belongs on a beer-guzzling redneck, but now I have fart breath to boot. Fantastic. Don’t be jealous of him, lads, not everyone can land a hot ticket like dis’ girl. The one piece of good news I have to deliver is that I ran today!  I only squeaked out 3.5 miles but it felt great.  I was quite tired when I got home however, and definitely hungry.  I might have to add a packet on running days, we’ll see.

ELEMENTAL DAY SEVEN:
I’m one week in, bitches!!! 1/3 through!   *Happy dance for week 1!!!*  (I know. I am super cool).   

It feels good to say that though I WISH I were saying, “Hurrah!  two weeks in, bitches!” 😛 I threw away yet another empty box of Vivonex (it comes with packets of 10) and I even kicked it when I did. Take that!  And that! (I am very mature).  Still bloated and I have NO idea why. Seriously??? It’s starting to piss me off.  The one good thing I had in my mind about suffering through this was that I might look like a normal human being for 3 weeks. Nope!  In other news, I have now started to poo baby poo (sorry but when you get a bowel disorder you lose all ability to be concerned about talking about poop).  Meaning, it looks like baby poo…no consistency and yellow and creepy.  Since they compare the elemental to breast milk (because it is a completely pre-digested food source) I guess this makes sense.  I feel like The Curious Case of Katie Caldwell, as I am now slowly becoming some sort of baby-adult hybrid like Benjamin Button. I eat baby food, I poop baby poop, I certainly whine like a baby.  I haven’t added coconut oil to my shakes the last 2 days to ascertain if I was bloating because of the coconut oil. I never really suspected I had a reaction to it, but figured this was the time to test it out. So far no difference, but I will probably continue this way for a few more days to be sure. The kidney pain seems better today, so that’s a plus.  I think – and I cannot BELIEVE I am saying this – that I am getting used to the taste more.  I no longer have to take a whiff of the coffee before drinking, but I still utilize the straw in the back of the mouth method.  Who knows, maybe by the end of this I’ll be guzzling it?  I suppose I was on the tired side today, because I didn’t go to the gym as planned, just a mile walk with Joe after “dinner.”  I had a harder time with food today.  Thinking about it more, daydreaming about it more.  I also had some minor acid reflux after my last shake of the day, which is very odd, as I never get acid reflux.

ELEMENTAL DIET DAY EIGHT:
I woke up this morning ECSTATIC because my belly was the flattest it’s been in months!sb Hardly any bloat at all! (Please ignore my ragamuffin Orphan Annie look…I’d just woken up).  I thought, “Maybe this nasty shit is finally working!”  I went for a nice run and felt pretty energetic.  I cleaned my house and did some work (I work from home).  I was feeling good until I had my lunch drink, when POW! Bloat city.  Excuse me belly, I did not just swallow a boulder, I swallowed LIQUID ya rat bastard.  Anyway, still no die-off.  It’s making me hugely nervous.  WHAT IF I AM DOING ALL OF THIS FOR NOTHING!?!?!  I am seeing my n.d. for acupuncture today and am going to ask her about biofilm disruptors.  If I’m doing something this hard, I’m going to attack it with all I’ve got. I think it’s time to add them in.  I was a moody today.  I feel like I went from Rebecca of Sunnybrook Farm to Voldemort.

ELEMENTAL DIET DAY NINE:
I AM ALMOST IN DOUBLE DIGITS!!!!  So ready to be.  I’m still hanging in over here!  12 days left.  Again I woke up with very little bloat and again it came on later in the day.  I saw my naturopath and asked her if I should be concerned that I am not experiencing die-off.  She said that it is not necessarily an indication of whether or not I am healing.  The fact that I am still bloating at day 9 concerned her more.  She did put me on a biofilm disruptor: Protease. In case you don’t know, biofilm is a thin, slimy substance that adheres to a surface.  We all have it lining our intestines, and it is thought that the bacteria causing SIBO can hide in this filmy lining, so that treatments and medication cannot reach it.  Then, when we start feeding it again, it comes out to play.  Hopefully the disruptor will infiltrate the biofilm and brutally murder the sneaky little shitheads that are hiding out like bacterial pansies.  I am getting out more and being more social these last few days.  I’m going to a talk at the college and meeting a friend for coffee tomorrow (well, she will have coffee and I will sit across from her and drool).  Again, we cannot let this thing rule our lives!

ELEMENTAL DIET DAY TEN: 

Double digits BA-BY!!!!  I made it!  I made it 10 days!  I never thought in a million years I would be able to do this.  Truly, my food issues in the past have been so severe that if someone told me I would go 10 days without food I would have busted something laughing.  But here I am!  I was a little more bloated this morning than the past few, which was disheartening for sure, but I’m trying not to let it get me down.  I haven’t really been doing my #2 business the last few days, so that might be why. Which is strange for me.  I had a really solid run this morning, however.  I’m trying to run only every other day and just walk on the other days or do some light yoga.  The drink also tends to make me burp a lot afterward, which is also weird for me.  I know it sounds funny, but I’ve just never been a gassy girl.  Joe always jokes that I am just going to explode one day, because in nearly 12 years of marriage he’s heard me fart like 3 times.  I just…don’t.  I don’t know why.  But after a drink now I burp quite a bit.  I think Joe is getting some kind of weird kick out of it.  Ah, marriage.  It’s interesting, isn’t it?  😛  I went to a talk last night at the college by the great Janet Mock and had to bring my shake with me.  I was paranoid about its smell because it’s soooo super strong and foul, but it had to be done!  Anyway, she is so inspirational because she’s overcome so much adversity and so much oppression in her life.  It’s a good thing for a person to hear when she’s struggling with something, because next to her life struggles, mine look like small potatoes.  Except potatoes are high fodmap so we’ll say…small carrots. 😛 It’s all about perspective, folks.    

8 Responses to “S.I.B.O – Still Ingesting Bad…Ooze? (Ok I’m reaching here…work with me)”

  1. Carey Reynolds said

    Thanks for sharing, I can relate to your experience with SIBO and find your expression to be a lot of fun even with something so frustrating. I also carry my pureed carrots with me where I go and get questions all the time from folks who don’t understand.

    Like

  2. […]  If you would like to hear about it from the beginning, please click here for the first entry and here for the second […]

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  3. […] on the elemental diet.  As per usual, you can see the first installment here, the second update here, and the most recent post (other than this one) here.  All you really need to know however is that […]

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  4. […] transition.  As usual, you can read the first installment here, the 2nd installment right cheeeeere, the 3rd installment hurrrrr and the most recent (other than this one) here. I awoke my first day […]

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  5. Heather said

    I love reading your posts! I love your humor about SIBO and your insight into human nature, and how honest and real you are. My amino acid powder came in the mail today, so I’m going to start Elemental probably on Monday (after I’ve finished the food I already have in the fridge this weekend). I know it will be crazy hard, but I’ve been taking herbal antibiotics/antifungals for about a YEAR and it all just gets worse. I now call this “my fourth pregnancy” because I have three kids. I even find myself scratching my belly just like I used to when pregnant, because the skin’s so tight.

    I’ve read ahead to your posts on cancer. Congratulations being cancer-free! My daughter had cancer three years ago, though we went with conventional chemo (didn’t know of any other options), and anyway her cancer was super-aggressive and dangerous. She made it through, but her gut is in bad shape, probably always will be.

    Do you know if SIBO can cause a low-grade fever? I’ve had one this whole time. It makes me suspicious of autoimmune disease, but so far the doctors have no explanation.

    Anyhow, thanks for your blog. You put a really refreshing take on health problems!

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    • Heather I somehow missed this comment until tonight!

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    • And thennnnnn hit send before I was ready. :p Your comments were very sweet. Did you ever try the elemental? Also, the fever thing is crazy because I’ve had the same thing for nearly 3 months now and doctors are stumped. So maybe it can? Though I really think my sibo is still under control, I still have gut issues (and probably always will).

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