S.I.B.O. – Shit, I’m Being Ornery (cause ya know, I NEEDS THE FOODS! ALLLL THE FOODS!

April 28, 2015

siboblog

My last shake E-V-A-R!!!

My last post as the postergirl for Elemental dieting! Roll out the friggin’ red carpet ya’ll, ’cause Katie Caldwell just went 23 days without eating!  I feel like I deserve a medal with a picture of a chocolate-covered taco on it or something.  This blog has been really interesting and fun. You guys have pushed me INTO the blogosphere, for realsies!  Now I’m going to have to come up with some new crazy thing to keep your attention! For my next post, I will shave my head and jump naked off a mountain of garbage trucks while juggling scorpions into the world’s largest pile of cotton candy! Make sure you tune back in!  (and Mmmmmm cotton candy…)


This is my last day on the elemental diet (Vivonex T.E.N.).  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 thesiboblog2 elemental has been my dark, somewhat abusive master for the last 3 weeks. One time, furious at its intercession in my otherwise glorious days of chewing and swallowing, I exclaimed before my first sip, “Are you happy now you stinky asshole?” My husband thought I was talking to him, and it almost started a fight.  And when I explained, I think he was frightened, as the elemental causes my crazy to rear its ugly, deformed head.  I extended the diet 2 days, as I had enough packets of the Vivonex T.E.N. to last me past the 21 days.  On my 21st day, I will admit I was cursing that decision.  All I could think over and over was , “I was supposed to be done today.”


Before I jump into a bloggity blog, I have to comment on the tragedy that happened this week in Nepal.  I am horrified at what I’ve read and seen. Please consider donating to one of these organizations.  Prayers and warm loving thoughts are wonderful, but they do not clothe, feed, shelter, or soothe those desperately searching for their loved ones.  Give what you can, and continue to send your love and aloha to the people of Nepal.


Because so many have asked, here is what I’ve done thus far to put my SIBO into remission:


1) Took a full dosage of Xifaxin (14 days)

2) Started on the Specific Carbohydrate Diet (SCD) + Low FODMAPS and followed it (strictly) for 9 weeks
3) Took Berberine
(after completing the round of Xifaxin) for 5 weeks

4) Began Low Dose Naltrexone for motility issues (began with 2mg, eventually moved to 3.5 mg)
5) Started weekly acupuncture
6) B12 shots once a week (this REALLY helped my energy level!)
7) After seeing very few results from the above treatments, began the Elemental Diet by taking Vivonex T.E.N. for 23 days
8) Began a second round of Xifaxin while on the elemental
9) 1 week into the elemental, added a Biofilm Disruptor called ProTease
10) I’ve also taken countless other supplements, that I won’t detail here as of yet.
11) I exercise every day, (even if it’s just a walk).

12) I work on the Vagus Nerve by using a tongue depressor to gag myself multiple times a day. If you have SIBO, you should really look into the Vagus nerve/gut connection.  It sounds like crazy witchcraft, but there is sound science behind it.
13) I juice low fodmap veggies (no fruits) every morning, but I limit it to 1/2 cup ONLY (as advised by my n.d. and a nutritionist because of the sugar and starch that still exists in juice).  I obviously don’t do this while on the elemental, but otherwise. 

14) But of all of these things, the most important thing I can recommend to anyone battling this or any other gut illness: GET A GOOD DOCTOR. There are some really uninformed doctors when it comes to diseases of the gut. And they can not only convince you that you are on the cray-cray end of the bonkers scale, they can lead you very astray. A friend of mine with SIBO was told by her G.I. to eat a ton of fiber.  She did just that, and writhing in pain 24 hours later (fiber is HORRIBLE for SIBO), she started seeing my Naturopath. Now, n.d. or m.d., I don’t care…just get a doc that listens.  YOU are the expert on your body.  My n.d. spent 1.5 hours with me our first session and never makes me feel silly or belittles my questions.  This is hugely important, folks. Don’t settle for less than what you deserve.  

Going forward, I will be combining 3 separate diets, as I mentioned in mysiboblog1 first post.  SCD+ low fodmap and the Fast Tract Digestion Dietby Norm Robillard. The first diet was simply not enough.  I wasn’t getting symptom relief, which was leaving me feeling not only hugely deprived, but hugely frustrated.  I mean hell folks, if you’re gonna have to watch every. little. thing. you put into your mouth with the diligence of a Buddhist monk, you’d better be seeing results.  This book really made sense to me.  It specifically addresses the fermentation potential (FP) of any food we eat.  Foods are assigned an FP, and you keep it as low as you can throughout your day to manage symptoms.  It works sort of similarly to weight watchers in this way, in a “don’t go over your points!” kinda way.  I am hoping that this is the missing link for me. Now, to be honest, I do not believe that I can heal SIBO through diet alone.  But I do believe that diet can be one of the best ways to lessen symptoms.  So…here’s to another strictly wild diet!  🙂


Something that has very frequently come up in my conversations with others about the blog is the subject of exercise.  I’ve talked about this a bit, but because I have gotten so many questions about running while I have SIBO, I feel like I should address it more thoroughly.  Many people with SIBO say that siboblog3exercise is impossible. I have a tendency to believe one of two things: “Wow, some of these people are waaaaay more sick than I am.” or “Wow, some of these people are perhaps a little too  committed to being sick.”  Now, before you chase me with virtual sticks and torches, let me be clear that I too am guilty of the 2nd one.  I think anyone that has a chronic illness has likely let it rule their decisions, even when they shouldn’t. It’s a built-in excuse not to do things.


When I first got diagnosed, I stayed in bed with an upset stomach and decided that I was sick and didn’t need to run.  I felt vindicated in my decision.  I wasn’t making it up, I didn’t feel good.  But after several days of feeling the same way and sinking lower and lower and lower…I knew I had to quit using this thing as a reason to stop doing something that was overall good for me, and something that makes me, ME.  And while yes, I can certainly understand pain and diarrhea and running do not a good combination make, there is still something so healing and lovely about simply moving your body outdoors.  I believe the benefits outweisiboblog4gh the negatives. Just, uh, stay close to home for those first few walks/runs.  Trust me on this.


I have definitely had to cut back however, most especially while on the elemental.  I went from running 40-50 miles a week to barely squeaking out 20 miles.  Right after being diagnosed, when my energy was the lowest, I was so exhausted after MAKING myself complete 2 measly, sloth-like miles that I couldn’t even stand to wash my hair in the shower.  I had to sit in an exhausted heap on the shower floor, wondering if my running days were actually behind me. But, after some kick-ass B12 shots (better than steroids, I say!) I was feeling far more capable and energetic.  And after I started the elemental, I had to cut back yet again, moving to running only siboblog5every other day and cutting out weights and swimming, as well as a lot of biking. To be honest, there are days when my belly hurts the entire run, days where I am still inexplicably tired and sluggish, and days when I might have to do that awkward Immodium-commercial run (you know…”gotta go, gotta go, gotta go…”) to the nearest beach bathroom, but I never regret it.  I’m always happy and proud that I did it and I find my mood is far better throughout the day when I do it.  So, unless you are TRULY bed-ridden (and I do know some of you legitimately are right now), get out there and do something.  I promise with all of the fervor of the fires of mordor that I am not shitting you…you will thank yourself. You may have to sit in the shower for awhile at first, but you’ll eventually get into the standing, homosapien upright position.


Now, it is not only probable, but likely that many of you feel worse than I do and have far more debilitating symptoms.  So please, please know that if you are truly housebound or bed-bound, I am not talking to you.  Rest up, and do everything you can to get your life back.  The above message is meant for people like me that yes, don’t feel good often, but also don’t feel terrible enough to skip out on exercise, all social events, or work.  This is your kick-siboblog6in-the-pants post…I had someone do it for me and now I’m paying it forward. Get out of your pj’s, turn off the Netflix, and throw out the self pity long enough to DO something for yourself, your family, or for others in need. This illness can make us self-absorbed, but let’s not let it.  I went to a potluck and donation day for the homeless in Kaka’ako park this last weekend.  THOSE people have it rough, THOSE people are suffering.  Me, not so much.  Who cares if I had to go 3 weeks without eating?  There were little girls and boys there that have likely gone months without a decent meal…who often go to bed in their tents on the hard ground with rumbling bellies.  There are people in the world that would LOVE to have my stinky, farty-smellin’ Vivonex shakes.  And I selfishly write a blog lamenting the fact that I have to drink them.


*Steps daintily off sopabox*   Now that I’m coming to the end of this , ironically it didn’t seem so bad.  Isn’t that funny?  It felt soooo SLOW going through it and now I’m like, “I can’t believe the 3 weeks are over!”  Or maybe it just solidifies my siboblog7suspicion that I am bat-shit crazy.  Since I have now come to the point where I look forward to my shakes, I think bat-shit is fairly accurate.  Really though, this was not as crazy
hard as I made it out to be, pre-diet. I was sooo scared of this, sooo sure I would fail, sooo certain that I would wake up at 2am and sleep-cook a vat of macaroni-n-cheese, but here I am!  Sans macaroni!


I have tried to let go of the illusion that this totally worked.  I am not in remission, that I know. I am still bloated every day.  I’m sad, but I am holding out hope that my numbers will have improved and that SOME healing has occurred.  If not, watch out, doc.  I am likely to throw am adult-sized toddler tantrum in your clinic.  My hydrogen peaked at 133, which is very high, so my doc has been trying to prepare me that since I had such a severe case, the elemental might not be able to eradicate it as easily as most.  But…onward!  I will not be thwarted, oh ye SIBO beast!  I shan’t be defeated!  (Fighting SIBO brings out my Shakespearean side, ok? Shut up.)

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Joyfully kicking my last Vivonex box like the mature adult that I am.

 

ELEMENTAL DIET DAY EIGHTEEN:
I’m doing much better this weekend.  It must be because I know it’s my last.  I didn’t even flinch when Joe ordered Indian food (the food I crave most!).  I decided not to run today, because I lost another pound this week (whoops! and after I just reported to all of you that my weightloss had stabilized!).  Joe and I went for a long walk instead.  I’ve been having this dangerous thought lately though.  I want just ONE delicious meal.  I would LOVE to have one fat-ass Indian meal of chicken tikka masala and cheese-stuffed, buttery naan. I crave it sooo badly sometimes.  I even start to rationalize it to myself thinking, “Would ONE meal REALLY hurt me THAT much?!?!?!”  But this isn’t weightloss, folks…it’s an illness.  One meal would actually hurt me…not only physically, but it would likely set back healing for weeks.  That’s what I keep going back to when I get really tempted.  I did not stop eating for 3 weeks just to undo it all with one delicious Indian curry.  At least not yet.  😛


ELEMENTAL DIET DAY NINETEEN:

Four days left!  Again!  In case you missed it, my n.d. advised me to keep going on the elemental for a few extra days, since I had extra packets.  So even though I crossed this threshold once and celebrated it, I’m here again!  Ha!  I had my first normal bowel movement in nearly 3 weeks today.  Ohhhhh yeah baby!  Poopstar, right hurrrrrrr!  It’s sad how thrilling this is, but I know all of my fellow SIBOers will understand.  For the others, sorry.  This is what my life has become.  I am still bloated, though it has been better the last few days.  I’m trying to get over being disheartened that this didn’t put me into remission.  I knew this was a long road from the beginning, so I need to remember that it took me years to develop this and it will take more than 4 months to recover from it.  But still, it’s hard.  It’s hard to keep perspective and it’s hard to live this way.  It’s JUST food though, dammit.  It’s just food.


ELEMENTAL DIET DAY TWENTY:

3 days left, people!  I had a good run this morning, had a busy day planning and preparing for my class (in case I haven’t mentioned, I teach Women’s Studies at the University of Hawai’i).  I spent the last half of the day pouring over recipes and trying to figure out my shopping list for Thursday night, as I begin eating on Friday.  Broth, broth, broth for the first few days.  As many of you know, bone broth (which is often touted as the holy grail of digestion-healing food for many gut illnesses such as UC or Crohn’s) is often not good for SIBO patients.  It’s important to know this, because many of the diets we are told to follow include bone broth. Please read about why this is so right here (under the heading of Bone Broths and Fermented Foods).  So, because of this, I was given a yummy-looking meat broth recipe from an SCD + low fodmap group. Find the recipe here.  And leave out the garlic, onions, and

//assets.pinterest.com/js/pinit.js” width=”275″ height=”275″ /> My homemade meat broth…first meal in 23 daysssss!

celery (I used celeriac root!) if you’re trying to avoid fodmaps.  I will have this for a few days, then slowly add in some turkey or super moist meat, then some pureed veggies. It’s weird, I feel like I’m starting all over again. I guess in a sense, I am.


ELEMENTAL DIET DAY TWENTY ONE:

Holy shitballs folks, I made 3 weeks!  I did it!  Wild!  I had a busy day, with a crazy ending.  I went to my n.d.’s office for acupuncture and to pick up my test kit, which I am supposed to take tomorrow (whooooo!).  Wednesday is the latest I can take the test because it has to be mailed to the mainland.  Well, when I got to the clinic, they informed me they were out of tests.  I was like, “Uhhhhh whaaaa?!?!?!”  I knew my n.d. had told them to order the test weeks ago.  This put me in a tough position because if I don’t have one, I would have to follow the specific diet for the test to take it early next week.  But because I haven’t been eating, I wouldn’t be able to follow the diet (not without severe trauma and pain to my intestines) for some time.  I was out of the Vivonex, so staying on it longer wasn’t an option.  My n.d. called all over the island and couldn’t find a single test kit.  She came back into the room and told me that I might have to make the homemade version and stay on it until Monday. Otherwise, my only other choice was to start eating and wait until I was strong enough to take the test in a few weeks (when I could properly follow the diet).  This would mess with the “true” results of the elemental.  I could tell she felt really terrible, but I immediately started laughing.  This is so my life.  I often joke with Joe that timing is a problem over and over again in my life…things are just always the TEENSIEST bit off, timing-wise for me.  And it just struck me as comical that I have not eaten for 3 weeks and I would have to go a whole other week because of not having a test kit.  My doc probably thought I was nuts.   BUT, the clinic hustled and not only found a test kit, but called the lab and got them to agree to take the kit late (so it didn’t sit in a lab over the weekend and mess up the results).  So now, back on track.  It taught me something though…the old Katie would have FREAKED the f*ck out about this, but I swear this illness is teaching me greater patience.  Some things are just out of our hands.  I went to talk to the clerk that had supposedly been the one to drop the ball in not ordering the test on time…she seemed horrified. She apologized frantically and I just gave her a hug and said, “Girl…it’s okay. Stuff like this happens to everyone, and it wouldn’t have been the end of the world if I had to wait 6 days.”  She looked at me amazed and I even thought to myself, “Who the f*ck am I?!?!  That didn’t sound like me at all!” Hahaha…life is funny.


ELEMENTAL DIET DAY TWENTY TWO:

Last couple of days!  Weird!  I’ve been SUPER hungry today, so I decided to skip my run.  I didn’t want to make myself even hungrier.  I’ll have a few packets left over (2) when I’m finished tomorrow, so I suppose I’ll use those to supplement my meals the following few days. Ease into this a bit.  I spent most of my day working on lesson plans and taking it easy.  I have a busy day ahead of me tomorrow, including my test!  I’ve noticed no new changes in the last few days.  Still bloat with regularity and still getting frustrated by it with regularity.  😛  I’m starting on Allimed in just a few days (the first day I eat), so that will be my new treatment protocol for awhile.  I had some nausea today, but it was brief and mild.


ELEMENTAL DIET DAY TWENTY THREE:

FINAL DAY!!!!  I woke up this morning and started my second lactulose hydrogen/methane breath test.  I drank the solution and it was like a WHAM!!!! to my taste buds. I haven’t had sugar in forever and it was sickly sweet.  I was really happy at first because I didn’t react as terribly as I did the first time I took the test, which made me think that maybe things had improved! But I celebrated too quickly (as per usual) because after about 30 minutes, my stomach was hurting and I was chillin’ with my old buddy the toilet.  DAMMIT.  It REALLY got me down. Like, REALLY.  I was sincerely tempted to call my favorite Indian joint and order my old stand-by favorite dishes and just tear into those bad boys.  I kept thinking (rationalizing), “I already feel like shit, this damn diet didn’t work, and all I want is to eat something yummy for the first time in months!”  But I’m being dramatic and I realize that I don’t even I know  that I won’t have much better results from testing this time.  I called my doc and said, “I need you to talk me out of shoving an entire pizza in my mouth right now.”  She was really sweet and supportive and did just that.  After I got off the phone with her, I cried like a child, and then felt better.  But PHEW…it was a tough go there for a bit. Sometimes you really just wanna throw your hands in the air and say F*CK it. I think my willpower and patience have been extra low these last few days, because I only had 2 packets each day (because of the test which you have to fast for).  The limited amount of calories changed things for me…I was legitimately hungry again and that made the cravings far more intense. I’m proud that I didn’t crack though, because I really almost did.


So, there ya have it, folks!  My elemental journey = COMPLETE!  I thank you all for tuning in, for listening, for cheering me on, for sharing your stories with me, and for laughing at all of the absurdities that this illness brings.  It has truly helped.  I will update again when I get test results in and figure out the next steps to tackle this bastard.  I’ll also be adding a recipe section because we all know how hard it is to eat while trying to rid our bodies of this bacteria-eyed monster.  Mahalo nui loa and thank you for going through this with me.  🙂

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9 Responses to “S.I.B.O. – Shit, I’m Being Ornery (cause ya know, I NEEDS THE FOODS! ALLLL THE FOODS!”

  1. […] installment right cheeeeere, the 3rd installment hurrrrr and the most recent (other than this one) here. I awoke my first day off of the elemental, sooo excited to shove food into my gullet. […]

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  2. Would LOVE to know the results of your breath test after the elemental diet. I have five days to go and will be testing directly after. The biggest frustration being that the NCNM takes two weeks to process…

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    • Hey George! I actually tested at hydrogen at 11 on my test right after. And considering it was at 133, that was pretty damn awesome! 🙂 4 weeks later I tested again (after following the Fast Tract) and it was at a 3. Good luck to you!!!!! The elemental is no picnic, so congrats for making it!

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      • Wow! That’s so cool. Makes me thing I’m definitely on the right track. My pesky methane-dominant SIBO was at a high of 51 so MAYBE just maybe this will do the trick. I’ll be following your lead of a broth-heavy diet following the ED. Thanks for sharing your experience! The ED is unjustifiably underrated.

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      • Of course! Here’s hoping you “flatline”!!!! 😛 Methane appears to be a little more stubborn than hydrogen from what I’ve seen. You got this, though! Are you doing two or three weeks?

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      • No kidding. Send me good vibes. Just two weeks and then back to an herbal antibiotic protocol. Are you in Portland? Would love to meet up and chat about the world of SIBO 🙂

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      • No, I’m in Hawai’i. But wow – Portland is so great for SIBOers. I’ve never been in a friendlier city toward people with food allergy/issues! I went there RIGHT after recovering and they were so accommodating! 🙂

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      • It’s true, by the luck of the draw my hometown is the unofficial SIBO capitol of the world. You’re welcome back anytime. And keep fighting the good fight for the SIBO community! We desperately need more leadership and organization.

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      • Same to you, buddy! And good vibes being sent across the pacific to you! Let me know how your test turns out! 🙂

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