Enter, SIBO

So remember everything I told you in my previous post?  Those 7 things no one tells you about living with a stomach condition?  Well, you can ignore it.  Because at least half of it was entirely wrong.

It's true that my gall bladder did need to be removed.  And that it was in fact exacerbating my stomach condition.  But what exactly that was (and what I finally thought I had figured out) turned out not to be entirely correct.  But I'm not beating myself up TOO much for getting so many things wrong, because it took two more GI doctors to get me here.  Allow me to explain.

I had a really great month after I recovered from my laproscopic surgery.  I acclimated quickly to my new life without a gall bladder, and started eating all the foods I had missed.  The scars healed exactly as they were supposed to, I gained some weight back, and I felt healthy and strong.  Life was good.

But by Labor Day weekend, my tummy seemed a bit on the rocks, and by trick-or-treat night, I was in and out of the bathroom all night again.  I hoped it was a fluke.  Then a few weeks later, I had another episode, (when we had invited friends over, which was extra embarrassing.)  It wasn't the same as the gall bladder attacks (no referred pain in my back, and the nausea wasn't crippling, at least)  But my bowels were no longer my friends, and I had to admit that their behavior was not normal.

By a stroke of luck, my previous GI doctor had retired, so his practice set me up with a new GI doctor.  And this one was pretty confidant he knew what was wrong.

It was called SIBO and it was something I had never heard of before.  And my previous GI doctor may have caused it.

GI doctor # 3 told me that the daily antacid my previous doc had put me on creates the perfect environment for SIBO (small intestinal bacterial overgrowth) to flourish.  He set me up with an easy, at-home kit to use and mail in (test tubes and everything, I am not kidding,) and scheduled me for an endoscopy, just to make sure there were no other contributing factors that had been overlooked.

The at-home test was slightly stressful ,(I wasn't allowed to eat anything but unflavored meats, eggs, and white rice for a day) but determined what the doctor had suspected.  The endoscopy followed soon after and confirmed that SIBO and SIBO alone was what had continued to plague me even after my gall bladder was removed.

Unfortunately that was all he told me.  That and, "Antibiotics are the treatment.  Take these."  I was given no other instruction, no information about what SIBO meant, what I should eat, what medicines I should take, etc.  I tried leaving a couple of messages asking what I should do and stating what routine I was currently utilizing, (a particular brand of probiotics and fiber, fiber, fiber) but I never got a call or any answers back.

Unfortunately, I did all the wrong things.  I tried going on a low FODMAP diet (more on that later) while I was taking the antibiotics, because I read online that helps to starve them out, (the internet is maybe not the best place to get health advice, but since my doctor wouldn't tell me what I should do, it was all I had.)  Then I went back to eating as normal.  I finished my antibiotics right before I went on a three week trip to Australia and New Zealand.  I was a little queasy and nauseous during that time, and it took my appetite quite awhile to come back.  But I resumed normal eating habits and assumed I would just go back to a regular, American life.

Nope.

Turns out SIBO is a lifelong condition.  The short version is you have bad bacteria in your small intestine where there should be no significant amount of bacteria at all.  They consume all your carbohydrates and sugars, reproduce, and make byproducts that make you bloated, gasy, generally ill-feeling, and cause your bowels to eject their contents faster that most humans are comfortable with.

Hoooooooray.

I found this out because I got sick in the usual way YET AGAIN, after coming home from abroad and feeling awesome for a month, (notice the pattern?  SIBO responds to most antibiotics, so anytime you take a substantial amount, like after a surgery or for a cold, it beats them back for a bit and you feel better.  But without long-term medication and dietary changes, it always comes back.  Trust me on that.)  I got tired of feeling sick and spending large parts of my day in the bathroom whenever I had sugar, or a lot of carbs.  So I called the GI practice.

Doctor #3 couldn't see me soon enough, (that part about GI doctors not using any urgency about your condition also hasn't changed) and I was scheduled for Doctor # 4 so I could get seen sooner.  Which was fine with me because I wanted some answers and long-term relief.

I ended up seeing Doctor # 4's Nurse practitioner.  This was notably different in several ways.  She spent a significant amount of time actually talking with me about my symptoms, eating habits, and medicine.  Then she outlined the best way to attack SIBO and keep it from coming back.  Then she sent me home with literature.  You know.  Actual information about my condition and what I should do for each part of the treatment.  She also responded within a day to all my follow up questions from the incredible amount of info I was now able to digest about my exciting new condition.

SIBO always has an underlying cause.  In my case, it is my IBS, (I have sub-type IBS-C, for those who are interested.)  SIBO gets a chance to come out and play when your IBS gets out of control (which has been frequently, so no doctor before was ever able to tell me what to DO to get and then stay better,) and it thrives in low acid environments and becomes harder to kill.  So Doctor #2 started the SIBO ball rolling for me by putting me permanently on an antacid which created a playground for SIBO to grow and be nourished.  Doctor # 3 diagnosed me and told me to stop taking the antacids, but failed to help me prevent a relapse by not telling me the three essential ways to combat SIBO.  Here they are - 

#1 The strongest plan of attack with antibiotics available.  This involves taking 1 antibiotic three times a day, and another twice a day (the second one made me queasy, which was fun.)  Then when a course of 10 days is completed for both, you take a very small dose (a fourth of a pill, I had to buy a pill cutter and everything) of a 3rd antibiotic every night at bed, for 3-6 months.  I am still working on this last part.

#2 Dietary changes.  This is to keep your IBS from getting out of hand and giving the SIBO an easy way to regain control of your small intestine.  For the rest of my Earthly existence, I get to stick to a diet low in carbs and sugars.  This is where the low FODMAP diet comes in, BUT it is essential to carb load several days before and all during the 10 day course of antibiotics.  This draws the SIBO out of hiding and causes them to gorge, so you kill as many of the suckers as possible.  I did this correctly this time, even though it made me feel gross and sick most of the time.  Score: Jess 2, SIBO 0.

#3 Meal spacing.  This is the hardest, and suckiest part.  I MUST space all my meals 4-5 hours apart.  I can do ABSOLUTELY no eating in between meals, and no snacking after bed.  Only water, coffee, or tea.  This gives the "natural sweeping mechanism" of my GI tract a chance to clear out all the bad bacteria after every meal and during bedtime, preventing any serious re-growth of the bad bugs in my small intestine.  This can only happen when you have been fasting for an appropriate amount of time.  I also cannot take my bedtime antibiotic until at least 2 hours after finishing a meal.  I also have to do this for the rest of my life.

Got all that?

The very helpful Nurse also told me there is no proven effect of probiotics in pill form for my condition.  She said if I want to help the good bacteria in my system, the best thing I can do is just eat Greek yogurt with active cultures on a daily basis.  Also, I had to stop taking my fiber, (I had switched to a third brand that I loved sweetened with actual sugar) and switch to an unsweetened brand.  This is nasty, but I get through it by mixing a little vanilla rice milk (no sugar added, but it's naturally sweet) in with my water/fiber mix.  Also, I don't have to take milk of magnesia anymore, but can just use some Miralax (a mostly tasteless powder you can mix with any drink) anytime I need.  No more liquid chalk is a good thing.  This treats my IBS-C and keeps it happy so the SIBO doesn't get any bright ideas about staging another coup in my small intestine.  Yay.

So in some ways (medication) my life is much simpler/better.  All I take for my tummy is a yogurt, some fiber, and a part of a pill at bedtime.  I don't have to carry Immodium around with me constantly as long as the SIBO is at bay.  But in other ways, my life sucks much more than it did before.  Meal spacing makes me cranky and fuzzy-headed in between.  My stomach doesn't eat itself as long as the IBS-C stays treated, but I still have to do that whole "try not to be stressed when I'm stressed" thing to keep from triggering the IBS.  That is actually very challenging, because I am really depressed about not being able to eat normally.  And meal spacing might not sound so hard, but it makes my social life and day-to-day a nightmare.  Because if I know I'm having dinner with friends at 6, I have to make sure I get breakfast and lunch eaten and spaced before that so that the 6 o'clock meal falls within 4-5 hours of when I finished lunch, (which has to fall within 4-5 hours of when I finished breakfast.  The cycle goes on and on.)  I can't have spontaneous drinks with anyone because those fall in between meals (I can only have alcohol with my meal, and can no longer have sugary cocktails, fortified wines, or heavy beers.)  I am dreading the next time I go on vacation, (eating on the road is neither predictable nor easy to obtain low-carb friendly foods)  This whole regimen is not something that our food culture or our social culture is designed to support.

I feel so screwed.

A word about the low-FODMAP diet.  I'm supposed to stick faithfully to it for 6 weeks, then I can re-introduce dairy and gluten back into my diet and eat them in moderation if they cause no problems, or eat them with an enzyme if I develop an irritation to either.  That's another fun SIBO fact.  It can cause you to develop food sensitivities.  Which is my worst nightmare, because I love all SORTS of foods.  And a lot of them are not on the low FODMAP diet.

The only way I can think to explain this diet to you is to tell you that I have to constantly carry a chart around with me that tells me what I can and can't eat.  It's not about certain foods so much as it is the way they are processed, or the chemicals inside of them (chemicals I haven't heard of and that no one but chemistry  majors would know how to recognize just by looking.)  Right now I'm knee-deep in substitute flours and milks, and watching my consumption of processed sugar like crazy.  But I also have to careful about fruit.  I can have small amounts and certain kinds, (bananas, blueberries, strawberries, and raspberries are all okay) but others have too much fructose or "polyols" and have to be avoided (blackberries, stone fruits, and apples are all out.)  I can't have any dried or canned fruit at all.  And I have to avoid anything with ANY kind of artificial sugars (which, okay, I'm not real broken up about because I've been trying to do that for years anyway, but start reading food labels and you'll be shocked by how much of that stuff gets snuck into our foods)  I can't have anything sweetened with corn syrup or high fructose corn syrup.  Or honey.  I can have actual sugar, but only in low amounts, so I usually don't have anything with sugar added to it unless I've added the sugar myself and know how much.  I can have most nuts, but no pistachios, and almonds I can only have less than 10 at a time.  I'm not really supposed to have vegetables that cause a lot of fermentation once eaten (beans, lentils, chickpeas, broccoli, onions, garlic, etc.) but thankfully I'm allowed to cheat on those as long as I take an enzyme that helps me digest them beforehand and don't have too much of them, (so the Richmond chili cook-off my husband and I attended every year is now out of the question for me.)  I can only have small portions of sweet corn or avocados, (one of my favorite foods) but somehow I'm allowed to have corn meal.  I can have soybean protein (tofu, tempeh, etc.) but not anything made of the actual soybeans (edamame, soybean milk, etc.)  And I can only tell you all this off the top of my head because I'm 3 weeks into this diet and I've had A LOT of practice at this point.  And even though I'm supposed to be low-carb, I can somehow have all the rice I want?  So it's been lots of rice milk, rice flour, and rice pudding (homemade with lots of yummy spices and hardly any sugar, and sweetened with....rice milk.  Yep, most Americans are made mostly of corn because of their diets, but I am slowly turning into rice.)

If it wasn't for sushi and injera and red meat, I would have starved at this point.  I never much liked most other meats, and I'm supposed to be eating a lot more of them, which is not palatable to me.  I tried (and failed, miserably) to eat only eggs and bacon for breakfast, then had to switch to oats and rice pudding with bananas and (you guessed it) rice milk.

Sometimes my husband makes me a half and half latte just to try and keep the pounds on me.  (That's another one I forgot to mention.  No milk, powdered milk, or condescended milk, no soft cheeses except for feta, and no sour cream, but I AM allowed to have yogurt, half and half, hard cheeses, and whipping cream.  Let me know if you understand this diet, because I still haven't really figured it out.)

Eating food with friends used to be my chief joy in life.  Now it stresses me out, (which I'm trying to learn how to cope with, because stress will trigger my IBS-C, and then open the door for SIBO again.  Cycle, cycle, must break the cycle...)  I have to be forceful about where I "want" to eat, not because I don't want to go for Chinese or pizza (I would happily murder some JETs or Chai Thai right now!!!) but because I can't eat at  most places on my current diet.  I order hamburgers without buns, even though I used to laugh at people who avoided gluten to be trendy.  I don't want to avoid gluten, because it's one of my favorite substances in food, but I do want to get better and so I'm trying.  I'm trying so hard....

During my birthday, I was on the the carb-loading part of my diet and was explaining to my family what my "new" diet was going to look like.  I was showing my chart to my parents and telling them things about all the nuances I was going to have to live with and trying to be brave and not cry.  And then my sister snapped, "Can we PLEASE talk about something other than SIBO?!"  And I had to try not to cry even though I was really hurt.  Because that is stress.  And stress starts the cycle, and I have to somehow break this cycle.  Which feels impossible sometimes.  Because American culture is geared completely differently from the routine I have to stick to, and that makes me feel like I've fallen into a trap that I don't have the tools to break.

Please.  Please let me break this cycle.  Because I want desperately to make my own bread again and have it with fresh jam and goat cheese.  And I want to be able to eat dessert with loved ones and not worry about being sick all night.  And I want to be carefree, but I can't because I have to meticulously plan everything I eat and when I eat it, because if I don't then I might start this whole cycle all over again.

I've been doing this for over 3 years.  And I'm sick of it.  And sick from it.  And I don't think I can take anymore.

And that's my life now.  That's what it's like to live with IBS-C with the continual threat of SIBO.

I'll either need counseling, or I'll snap and eat a giant chocolate cake all in one night then be sick for weeks and begin it all again.

Oh please, I can't begin this again.

Do I have the strength of character for this?  Will my husband continue to be the never-ending source of love and support he has been?  Or will he eventually get sick of all my whining and woes and, like my sister, ask me to talk about something other than SIBO?  I don't want to be scared and over-emotional all the time.  But I constantly have to fight against that, all the time, every day, just like I have to fight against the urge to eat bread and drink real cappuccinos, (coconut milk lattes are yummy, and half and half are decadent, but they aren't the same as a cappuccino the way it was meant to be with real, whole milk that comes from a cow and not from a plant.)  And I have to fight against the urge to eat dessert after a meal, unless it's a dessert I made myself with a very small amount of real sugar in it, or a tiny piece of dark chocolate without all the junk added.  But I try to soldier on and I try to stand it, because if I fail I go back to start again.

And I am so done with SIBO.

I want my life back.

Screw you, SIBO.