I have a long list of illnesses (see it here). In 1995 when I was fifteen, I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed fibromyalgia, the most debilitating illness of all. (Read "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Saturday, March 15, 2014

Serious About SIBO


The more I research and learn about small intestinal bacterial overgrowth (SIBO), the more I realize that various aspects of my complex medical situation created the perfect storm for this incredibly difficult-to-treat catastrophe to take place.  When I look at a list of potential SIBO causes, I can check off most of the items on the list: GI disease, GI surgery, post-op complications, long-term and repeated antibiotic use through the surgeries,  immunosuppressive prescription drugs, steroid prescription drugs, acid-blocking medications for my GERD, a high-carb diet for my j-pouch... all happening during the same one-year time period. I was a goner before I had ever even heard of SIBO.  Once I realized this, I wondered why no one had mentioned to me the possibility of developing this nightmarish condition.  It would have been nice to be prepared for this risk so that I could have tried to take some sort of preventative measures.  None of my three GI's, my primary care physician, nor my surgeon ever brought it up, and when I asked about what might be causing my symptoms and what to do about it, none of them knew much of anything about how SIBO works or how to treat it.  Then I realized that it's because western medicine in general knows practically nothing about it; of course they don't bring it up with patients.   So now that I know, here I am trying to spread the word to the public.  If you are going through any sort of GI distress, be sure you know how to prevent, recognize, and treat SIBO before it gets out of control, because once that happens, you are probably in for years of hardship trying to treat it.

But before we get into that, I should tell you that I recently was referred to a GI expert at UCSF for this
SIBO issue.  Her response was to run upper and lower endoscopies, biopsies, and an MRI to look for other causes including but not limited to celiac indicators or a stricture that could slow motility.
my rectal cuff showing cuffitis           ulcers on my j-pouch
Results of these tests showed a small hiatal hernia, ulcers on my j-pouch, cuffitis, two types of metaplasia in my ileus and j-pouch, and inflammation in my stomach, ileus, and j-pouch, but no celiac, stricture, or other markers she was looking for in reference to the SIBO.  I had a lot of questions for the doctor about these test results, but the only part she was concerned about was the cuffitis for which she prescribed Canasa.  (See our Q & A email exchange cut and pasted at the bottom of this post.)  Basically she discovered what my GI would have discovered anyway at my first annual scope but was no help with the SIBO issue.  So I have been continuing to rely on my own at-home research and treatment methods.

Every time I try to go on a restricted diet to treat my SIBO, not only do I have a difficult time restraining myself psychologically, but the physical pain and struggles in the bathroom that are caused by the increase in fiber eventually derail me, and I break down and grab something starchy that will calm down my j-pouch and relieve the misery, which in turn derails my SIBO treatment plan.  The dietary treatments for my two health issues work against each other, so it's been incredibly frustrating not knowing which direction to go, which means I've been doing a lot of yo-yo-ing back and forth... I go with one diet until I can't take the symptoms any more and switch to the other one.  Well now that I have identified the cuffitis as exacerbating if not causing some of my symptoms, I have been able to treat that piece at least using a different route.  Now that I seem to have the cuffitis mostly taken care of (Cortifoam worked much more quickly and easily than the Canasa), hopefully the fiber piece of that dietary battle will be a little easier.  So here I go again...

This time I'm preparing not for a short-term restrictive dietary treatment but for a serious long-term dietary/lifestyle change.  I've realized (after almost a year of failed attempts and further research) that treating this is going to require a much bigger commitment than I was previously willing to fork over. But at this point I know I'm left with practically no choice.
The "Vicious Cycle" of intestinal damage caused by
SIBO (from Breaking the Vicious Cycle)
From my recent research, I know that if I allow SIBO to go untreated, it will not only continue to plague me with worsening symptoms, but it will continue to damage my intestinal wall, causing irritation, inflammation, ulceration, and malabsorption.  I'm sure that's where my j-pouch ulcers came from, and I'm now convinced that's also what caused my iron levels to plummet me into full-blown anemia ten months AFTER the UC and surgeries were over.  The malabsorption issues would only get worse as my small intestine suffers further damage and as the bacteria grows and eats up more of my nutrient supply.  When the intestinal wall suffers enough damage, bacteria and larger food particles pass through to the blood supply which can cause your body to react in the form of fatigue and higher sensitivity to allergens (both of which I have been experiencing recently).

 I have been through so much the last few years, and I was under the impression that once I was on the other side of the surgeries, things would be okay again, and I could stop worrying about what I eat, what supplements I need, what medications I'm on, symptoms, side-effects, etc.  And today here I am, over a year out from surgery and still dealing with all that same bullshit, feeling helpless and hopeless.  It took me several days to come to accept the fact that I had potentially one to three years of very strict dietary restrictions ahead of me.  No cheating, no half-assing.  Apparently the only way I can get rid of this thing requires a very significant long-term commitment on my part that is sure to be filled with struggles, obstacles, and serious tests of will power on a daily basis that will even spill over into my social life.  It took me several days to come to accept this fact.  I did not like it one bit, and this threw me into a deep depression.  None of it seemed fair.  I knew that if I had any kind of shot, I needed to process these emotions until I came to a place of acceptance, but I just couldn't quite get myself there.... I had to pat myself on the back when I recognized that one of the first things I did was seek help: emailing a dietitian, asking an acquaintance for the name of a therapist, seeking out a local support group...  Still, my willingness to accept my situation was slow going until I had a long talk with my significant other.  Something about that conversation centered me and brought me back to what I need to focus on: moving forward.  Knowing that he was not only supportive and behind me one-hundred-percent but ready, willing, and even enthusiastic to jump in and gain the health benefits of eating the same way I will be (at least when we're together) did a lot for my confidence in my ability to succeed.

So now I'm gearing myself up.  I did some more research and found some interesting new information.  It turns out that probiotics are the least effective branch of treatment for SIBO and can sometimes do more harm than good (specifically the prebiotics that usually come in the probiotic products).  This is why I'm choosing to focus on the antimicrobial supplements that I listed in my last post and more importantly, diet.  Through my research I came across a doctor who seems to be one of the leading experts on SIBO, Dr Allison Siebecker (cited below).
Breaking the Vicious Cycle: Intestinal Health Through Diet
This book explains and outlines the
Specific Carbohydrate Diet
She recommends the Specific Carbohydrate Diet (SCD) as pretty much the best dietary plan out there for treating SIBO.  This is an eating plan I had tried very briefly for my UC in the past to no avail since my UC was too far gone by then, but I didn't realize until after I saw that recommendation that the diet was originally designed for SIBO, so I went back and took another look at the book Breaking the Vicious Cycle (cited below).  It's important to read the book before going on the diet since there is a lot to it, but in a nutshell the end result is to cut out all forms of sugars, sweeteners, starchy carbs, grains, starchy vegetables (including soy), and most dairy due to the lactose (hard, aged cheese is okay).  The only naturally sweet things allowed are limited amounts of fruit and honey.  The rules on this are very strict and even apply to trace amounts of sugars or sweeteners in condiments, marinades, dips, drinks, etc, since the bad bacteria will jump on any particle they can find.  For this reason any type of processed foods are pretty much out, so the diet consists mostly of natural, organic meats, vegetables, and healthy fats with a few nuts and fruits thrown in.

I'm getting ready to start the diet on Monday, so this weekend I'm having a farewell party for all my favorite processed junk foods.  Meanwhile, I've been browsing Pinterest for SCD-friendly meals, and I was very impressed with what's out there and excited to try some of the recipes I found.  (You can view my favorites here, but keep in mind that I have not reviewed all ingredients yet to ensure everything I pinned is completely SCD-friendly.)  Oh, and if any reader decides to try this diet for yourself, be sure to download the SCD Buddy app for easy on-the-go checking on which foods are legal.

One foreseeable obstacle with this plan I have not yet had a chance to attack is the fact that eating this way will require most of my food to be made from scratch at home (including most condiments), which will be incredibly time consuming.  I already have to schedule in extra hours for sleep every day due to my j-pouch waking me up throughout the night, and now I will need to add several hours a week of cooking on top of already feeling exhausted most of the time.  I haven't quite figured out how I'm going to designate more hours in my week to food prep yet, but I'm definitely going to need some go-to easy soups, salads, and stir-fries that I can pre-cook for my workday meals.  However, I will still have to spice things up with the new recipes on the weekends in order to keep from feeling too deprived or bored with the same simple meals every day.  Maybe my man and I will have to start turning date nights into prepping, baking, and cooking food at home instead of going out to eat.

One other thing I will have to keep in mind as I start down this path is that as I cut out my largest source of calories, I will have to be very careful of what I'm demanding of my body in the area of exercise.  I've been chomping at the bit to throw myself into running and weight-lifting and dancing classes and roller derby workouts... but have not been successful there either due to anemia, bronchitis, j-pouch symptoms, changing diets, etc.  Now that the cuffitis is better I should be in less GI pain, but I will be setting myself up for fatigue and injury if I get too enthusiastic with exercise the same week I nix all carbs.  Specifically weight-lifting and distance running while cutting out my main source for glycogen stores will be a bit of a balancing act and will require time for my body to adjust.  One thing working in my favor, however, is that I can consume as much protein as I want, which will be great for repairing and building muscle as well as trimming down unnecessary fat.

I will try to keep you all posted as I navigate the new path of trying to stay athletic and fit while on an indefinitely long-term, no-carb, no-cheat diet.  I will probably stumble here and there, and I may even fall face-first into the mud, but I will never stop picking myself back up, dusting myself off, and trying again to move forward.  Because that's what I do.... because, of course, I'm a fighter.

Sources


Test Results Q & A


My email to the gastroenterologist:


Since I was drugged after the endoscopies, I never had a chance to go over results with you. I know your only concern was the cuffitis, but I like to know what's going on with my body. Here are my questions:

1) Do you know what could have caused the ulcer(s) in my j-pouch? Why are you not concerned about them? Could it be Crohn's?

2) I have inflammation in areas other than the cuff: stomach, ileus, pouch, etc... I assume this is not ALL cuffitis. So what could cause inflammation in other areas, and could it be contributing to my symptoms?

3) Two types of metaplasia, due to chronic inflammation... From my prior UC, GERD, SIBO, or all of the above? Precursor to cancer? Why is it not a concern?

4) Following up with local GI for cuffitis, but I originally came to you for the SIBO, which never got addressed other than a "try FODMAPs". Is that really all the help you can give me? I have been living with painful SIBO symptoms for almost a year and am at my wit's end.

Thank you for any help.

The doctor's reply:


Your upper endoscopy was completely normal. The biopsies with mild chronic inflammation are not significant and should not cause symptoms. We biopsy for h pylori and celiac which there was no evidence of. Every pouch is a little inflamed as small bowel is not meant to act as a reservoir for stool. Therefore we commonly see a little ulceration or inflammation in the pouch. Ulcers in the pouch are not diagnostic of Crohn's. You would need to see ulcers in the small bowel above the pouch which we did not see. It is unlikely that the normal appearing mucosa with mild inflammation on biopsy is contributing to symptoms. We would usually see redness, ulcers or swelling like we do in the cuff. Metaplasia is not a concern, dysplasia is a concern. There are no guidelines to follow metaplasia as it has never been shown to be of significance

The best treatment for SIBO is rifaxmin 400 mg three times per day for 10 days. (alternatively 550 mg twice a day for 10 days). Insurance does not cover this but if you want to pay out of pocket we can send another prescription. You have tried cipro and flagyl before. Another possiblity is augmentin twice daily for 10 days followed by probiotics.

[Note: I've tried high-dose xifaxan, cipro, and flagyl. However, although the 14-day dose of any antibiotic works great for pouchitis, it doesn't seem to do much of anything for the SIBO symptoms, and when I come back to the doctor after that, I pretty much get a metaphorical shrug. As in, that's all they've got for me.]


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8 comments:

  1. Hi,

    I just wanted to know that I've read a lot of your blog posts, and really sympathize with your journey. I have UC, and although it's been a milder struggle then yours, it's been ongoing for a few years without much relief, and I share your sense of endlessness with this condition. Your resiliency and willingness to try out new methods of healing is inspiring, and are qualities I should continue to develop and imitate.

    My best wishes to you,
    D
    D

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    1. Thank you for your kind words, Dan. I appreciate the sentiment and am glad my experiences may be able to help in some small way. :-)

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  2. Thank you for the update. So sorry to hear of your continued struggles but keeping you in my thoughts and I hope your new "adventure" gives you what you're looking for. Please keep us posted.

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  3. Would you consider a permanent ileostomy as a solution?

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    Replies
    1. I would not consider a permanent ileostomy as a solution to SIBO since SIBO is small intestinal bacterial overgrowth... With an ileostomy you still have a small intestine, so it wouldn't really change anything except for the exit route. You'd still have the bacteria growing in the small intestine along with it's symptoms, dangers, and long-term effects.

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    2. But if you had an ostomy (even a temp) then you could treat the SIBO without going through the misery a low carb diet causes for your j pouch?

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    3. This comment has been removed by the author.

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    4. Well, as I have discovered, the reason that the low-carb diet caused misery for my j-pouch in the beginning was because of the undiagnosed cuffitis. The increased fiber from all the veggies aggravated the inflammation that was already there. But as long as cuffitis and pouchitis are not present, my j-pouch functions just fine on a carb-free diet. No need for them. :-) J seems pretty happy on SCD now that the cuffitis is mostly treated.

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