Chronic Illness

SIBO Update Number 1

I feel so terrible that I’ve been neglecting this blog as of late, but with Lil’ Man at home for the summer, my attention is needed elsewhere.  I promise, we’ve got a science experiment that we’re determined to share by early August as well as some more of our travel tips and adventures.

In the meantime, I’ve been focusing on keeping the monster known as SIBO (Small Intestinal Bacterial Overgrowth) under control.  It has been five weeks since I finished the latest round of Xifaxan, and I’m hoping to make it at least a year (hopefully longer) before I need to take it again.  I do find the first couple months after I’ve hit the reset button on my GI tract to be a little off.  I have to be extremely cautious about what I eat and tend to eat the same safe foods for breakfast and lunch while being slightly more adventurous for dinner.  For example, my breakfast smoothie every morning currently consists of the following:

  • Low FODMAP Berries (e.g., strawberries and raspberries)
  • Spinach
  • Unsweetened Almond Milk
  • Organic Cacao Powder
  • PB Fit Powder
  • Chia Seeds
  • Flaxseed (Low FODMAP in small servings)

I do miss bananas in my smoothies.  While I’m not a fan of anything super sweet (e.g., fruit juice), I do miss the sweetness the bananas added to my morning meal.  That said, I miss a lot of other foods besides bananas!  I once had a friend ask me how I could be so restrictive with my diet.  My answer:

If eating a single bite of my favorite food is going to throw me into the same symptoms I’d experience with food poisoning, thus keeping me from caring for my son, then why on earth would I eat that food? 

We all learn early in our lives that the stove is hot and that we will experience pain if we touch it.  As a result, we spend our entire lives trying to avoid the hot stove.  It’s the same for me with foods that make me terribly ill.  I’m still learning what I can and can’t eat, but once I identify a food that upsets my stomach, it goes on my do not eat list.

I will tell you, I miss being able to enjoy a bite of chocolate whenever I want to.  I hate agonizing over every ingredient in every food I eat, and I dread dining out with friends and family who don’t understand that even healthy foods can leave me in terrible pain for 48 hours or more.  I can’t tell you how many times someone’s picky food habits have trumped my medical condition when picking a restaurant. (And yes, I have totally paid the price for eating somewhere I shouldn’t!)

That said, I always remind myself that it could be worse when I start to feel a bit down about my condition.  There are people out there with far worse medical conditions than SIBO.  Even worse, it could be my child that is ill instead of me!  (He suffered from allergic proctitis as an infant and it was terrible.) These thoughts help me focus on what is positive in my life.  Focusing on the negatives does nothing but hinder recovery.

How am I Doing at 5 Weeks Post Antibiotic?

I’m not perfect, but I am feeling much better.  The few occasions I’ve experienced stomach discomfort have been completely my fault.  In a few months my stomach will be able to handle the occasional gluten/dairy-free takeout from our Wegmans, but for now I need to concentrate on preparing all of our food at home.

Lil’ Man and I will be going on an adventure in D.C. today, and I may just get myself a sorbet at Pitango.  I allow myself a dessert once or twice a month, (I can’t deprive myself of everything good in life), and Pitango’s Dark Chocolate Orange sorbet tastes just like ice cream.  It’s hard to believe it is vegan!

If you read my first post on my struggles with SIBO, then you know I’ve experienced hair loss in the past thanks to malabsorption issues.  My latest bout with hair loss was diagnosed last month as alopecia areata.  There is no way of knowing what exactly caused it.  It could be the autoimmune issues I already have going on (i.e., elevated ANA for almost two years) or it could have been due to the extreme stress I experienced just before our Disney World trip in March.  At least with this condition there are options for treatment, and I decided to try the steroid injections.  It will be awhile before the left side of my scalp looks normal again, but as Lil’ Man informed me, there is new growth there and some of them are whiteLeave it to a kid to be brutally honest!  The white hairs are really of no concern to me since both my brother and I started greying in our mid-twenties.  I’m just happy to have hair growing there again!

I’m still underweight.  I managed to gain about 3 pounds while on the antibiotic, but that was due to poor eating choices while at Universal Studios.  Alas, the restrictive eating has me down two of those pounds, and my goal at the moment is to not let my weight go below my current 117 pounds.

I’m currently taking the Iberogast, (an herbal remedy for slow motility), as needed.  I have not worked up the courage to try the D-lactate free probiotic powder again as I experienced abdominal discomfort on just the child’s dose the last time I tried it.  Maybe in the next few weeks I will feel brave enough to try it again. For now, I’m going to stick to the Low FODMAP diet.  My plan is to start branching out on foods around November.  I also intend to not go crazy with eating during the holidays.  I was feeling almost normal by Thanksgiving last year and indulged a little too much in the holiday foods.  This time I intend to enjoy a few treats, but within the limits of what my body can now handle.

If you are finding this page because you too are struggling with SIBO or a similar condition, then please don’t lose hope.  I know it isn’t easy to talk about GI conditions.  After all, Hollywood has literally made conditions like ours the butt of many jokes in their television shows.  I also know people will assume you are picky eater, and they will also think you are just jumping on the gluten-free band wagon because they don’t understand how sick it can make you.

I also know people will say you have to adhere to a specific diet.  I’m here to tell you there is no one-size-fits-all remedy to our situation.  While Paleo may work for one person, SCD might be the answer for another.  For me, there are foods on those other diets that I react to.  I’ve also tried the grain-free diets in the past and felt terrible on them.  For me Low FODMAP is what works best.  I also focus on making healthy choices (i.e., lots of fruits and vegetables in my diet).  My advice to anyone looking for answers is to find a healthy diet that you can tolerate.  All of us our different, and this journey is about finding what helps us feel well again.

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