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The Reckoning, Part 6

8 Apr

Mid October, 2011

I had a roommate in my first hospital room who was in pretty bad shape. She was only 40, but she and her husband were overweight and worn down; both easily looked ten years older. She had transferred from somewhere in rural New Hampshire to get treatment for a specific disease she was suspected to have. From what I could gather, her issue was that she had a uterine edema – tons of swelling in her torso tissues – the source of which was a botched ovarian cyst removal. The end result was that they put her on a very strict low fat diet to minimize the fluid retention.

Having had pancreatitis in the past, I’m no stranger to that kind of life change. But to overhear them speak about it – literally day and night it was the only thing they talked about – you would think it was as if her child was pulled for the Hunger Games or something. It was, to them, the most taxing life change they could imagine.

Shh baby... This low-fat diet won't win. We're gonna beat this thing.

But here’s the crazy part – when a physician says “fat is bad” or “dairy is bad” or “gluten is bad”, patients inherently want to do as little as possible to work within the confines of their restrictions. So, low fat means that anything labeled “fat free” is ok. Right? Standard logic. My neighbor received a gift basket from her sister which included things like baked Lays potato chips, fat free Ranch dressing, diet ginger ale, etc. Part of me sneered at those products, probably the same part that knows these are standard items in my family’s kitchens.

Does anyone honestly think that you will heal yourself on a diet of Kraft products just because they’re labeled ‘low fat’? If you think so – head down to your local grocery and check out the ingredients in Fat Free Half and Half. It’s a joke – it’s just high fructose corn syrup. Not to get overly incendiary here, but they just sub out one poison for another.

True story: top 3 ingredients are sugars!

If you are buying something that is traditionally pure fat, but labeled as 'fat free', do yourself a favor and don't.

NEWS FLASH, ya weenies: If you are put on a low fat diet, and you eat processed foods labeled “fat free”, you’re increasing your sugar intake. What does excess sugar conver to? Fat. Interestingly, some cardiologists argue that low far diets have never been the appropriate course of action for treating congestive heart failure. It’s further argued arterial plaque buildup is triggered by low-fat (read high carb) diets.

Jordan and Steve at SCD Lifestyle put together very interesting read on why packaged foods labeled “Gluten Free” are sometimes just as inflammatory to people with GI issues as foods containing gluten.

Restrictive diets infer that if a patient finds something that’s pre-prepared and flagged as not containing the bad ingredient, then it couldn’t possibly be bad. Let’s face it though, if you’re sick, no matter with what, you should probably be eating home cooked food and still keeping as balanced of a diet as possible.

Chances are your grandma's soup is healthier and tasier than Progresso's.

Rather than a restrictive diet, what if a physician recommended “you are only allowed to eat things prepared from scratch”. How about “The only fat you are allowed to cook with is olive oil.” Why can’t it be done? Granted some savvy person like me would find a way to fry donuts in olive oil (look like Giada beat me to it), but isn’t it usually better to tell someone what they can and should have as opposed to what’s off limits? At least from a psychological perspective, to keep people from feeling they’re an outsider to the rest of the world?

On a related note, why can’t physicians tag team with nutritionists at patient bedside? Why are they always separate entities entirely? I spoke SO much to my physicians about my diet, about what triggered symptoms and what didn’t. Not a word of it in my patient notes. Not a mention in my discharge papers.

Seeing my roommate allowed me to commit to cooking for the rest of my life. I will keep good habits for myself and set good ones for my family. If you start to slack and rely on pre-prepared items, it’s a slippery slope that takes it’s toll in more ways than one.

“Are you sure it’s not all in your head?”

5 Mar

“The first wealth is health.” – Emerson

You tell it, son. Ever since I read The Secret a few years back, those are the two words I occasionally remember to chant in my head. Health and wealth, health and wealth.


Rhonda Byrne, the author of The Secret, suggests imagining yourself as an energetic transmitter of the things you want. I imagine myself as a big radio tower, sending thoughts of what I want out to the world. I was advised, however, that *anything* you think of will be transmitted out as something you want to attract, so I try to keep thoughts about debt, singlehood and ASPCA commercials to a minimum.

I’m your average 20-something college grad who paid for school myself. Out of curiosity, I signed up on Mint.com and found

My net worth = a whopping -$60,000.

It actually feels good saying that. Debt is just a number, right ladies?!

I didn’t even go to grad school, mind you. I just had to get that swanky biomedical engineering degree at a private university. It ain’t no thing though; if you are lucky enough to earn an income, it’s easy to put things like student loans in the back of your mind. Direct deposit paycheck in, auto debit loan payment out – like the money was never even there. Blind faith it’ll all work itself out someday, even if the break-even point is in 2030.

The health piece, on the other hand, is harder to be so confident about. With every cramp storms a flurry of questions: “what was it? What WAS it?! The bananna, the smoothie? Were the carrots not soft enough? That one felt a little crunchy… I shouldn’t have trusted my teeth to puree it enough… stupid, stupid, STUPID.” It’s an anxious person’s playground.

And of course we never know the answer. That’s the beauty of all of this. Who knows what could have caused it. Sometimes, I swear to God, I have a cramp free moment where I’m thinking “Man, don’t I feel great when those blasted blasters aren’t here” and then BOOM, immediate onset. Dear ole Rhonda Byrne would say just the thought brought it on.

Which might be partially true. The gut has its own neural network, first described in 1921 as the “enteric nervous system”, which secretes neurotransmitters such as serotonin on its own. Like everything else in the body, it’s connected to the brain’s neurological system too. An October 2011 article in the NY times discusses the question of which comes first in GI disorders: the actual pathology or the neurological psychology?

Anyone who has a GI condition knows that mentality plays into it 110%. And that’s what this article says.

“Clinicians are finally acknowledging that a lot of dysfunction in GI disorders involves changes in the central nervous system” – Gary M. Mawe, a professor of anatomy and neurobiology at the University of Vermont.

Here the west, we’re inclined to say “Sorry Charlie, a gut disorder must be triggered by something you ate. External input renders an internal problem. End of story.” But this is valuable information, the gut and the brain could just play into each other in a vicious Kurt Cobain and Courtney Love kind of way. I’d certainly believe it.

If I had to choose, I'd say Kurt represents the Brain and Courtney is the gut.

And with that, I’m done thinking about this shit for today.

Three weeks later

19 Feb

Per usual I am late on updates.

To summarize, the practitioner who agreed to take on my case for fecal transplantation backed out (no pun intended) on the morning of the procedure. She had only done transplants on two other patients with UC (both of whom she was treating for C diff) and it triggered flares in both of them. For her it was a comfort issue, I also didn’t keep her in the loop with my other providers, so she wasn’t sure where I was with my care, etc. Lesson to be learned: communication is key, all around…

Yet no matter what, I had done all of the prep (64 ml of Gatorade + 55g of Miralax) and reaped none of the rewards! However, a good cleanse can make you feel quite right from time to time. For the first time in a little while, I had no abdominal pain. Nothing in your belly equals nothing to screw up your day. No complaints on that end.

I decided to use the bowel prep as an opportunity to start on the SCD diet. Something I had been meaning to try, but it’s just so damn strict you can’t really casually kick into it without some sort of sudden change. Unfortunately despite what I was eating, my symptoms were coming back rather strong. I was in the middle of tapering off cyclosporin to 1/3 of the full strength dose, and I don’t think I was ready.

I did the SCD intro diet as prescribed for the first three days. On day 3 I made homemade yoghurt which did not sit well with me after 12 hours. I also noticed I couldn’t do tea or anything sweetened with too much honey. I was chatting with Traci over at thepowerofpoo who has undergone HPI (human probiotic infusion, aka fecal transplantation) for IBS and she referred me to SCD lifestyle – a website/podcast/life manual made by Jordan and Steve, two fellows who’ve got the SCD diet down to perfection. Their version of the intro diet cuts out all dairy, which for me worked far better.

I also found a cool app for my iphone that’s a more realistic for me to use than a physical food/symptom journal. The app is called AllergyDetect, and though I’m not looking for any allergies, it shows you any correlation between food and symptoms over a range of time.

Despite all that, I was still having bad frequency/urgency and the like. Around day 5 or 6 things weren’t getting better, then BOOM came the fatigue. I went back to the hospital on day 7.

I will talk more about my latest internment in my next post, but I want to say that now that I’m out with my meds ramped back up, the SCD diet is definitely helping. If anyone is interested there are tons of resources in the world wide, just ask questions! Buy the book, read up on the science; the concept is sound. I will say it’s very difficult being on such a limited diet, a lot of which includes high fiber foods which you need to add in one at a time very SLOWLY… but I’ve been having my fair share of fruit smoothies and I feel like a kid again. Yeah it’s 7p, and I’ll be having some grape juice with my dinner.

Tomorrow – A stab in the dark

29 Jan

Literally and figuratively.  A few weeks back I posted about the weird coincidence between the name of this blog and the Freakanomics podcast on the work of Dr. Thomas Borody. The more research I conducted, the more I became encouraged to investigate fecal bacteriotherapy as treatment for my own case of UC. I had an integrative medicine provider who was encouraging of it and was happy to write me a referral for it. So I found a provider in nearby Providence RI who agreed to take my case on. That was all before my mild-moderate UC turned to pancolitis in October of 2011.

Normally, poop transplants are used in America to treat C.diff infections and the resulting colitis. But a growing number of papers are suggesting it’s a viable treatment option for a number of conditions, including UC and Crohn’s. Borody and others have put together a guide for those who want to treat at home.

As an inpatient last fall, most providers were skeptical of it due to its uncrontrolled nature. And though the specialist who agreed to perform the procedure believed it would help regardless, we all agreed it was best to table the discussion until my symptoms quelled a bit.

So after 2 1/2 months of slowly improving, in the past week or two my symptoms have reversed directions. Impeccable timing that I’ll get my first treatment tomorrow. I expect to have to one one infusion with the GI specialist, and then 5-10 home infusions as suggested in the guide. More to follow on all this, for sure.

Meanwhile, elsewhere in the world, there is definitely growing awareness. It’s so moving to read testimonials of the completely curative power of this therapy on open forums. There’s even a facebook page called Fecal Bacteriotherapy is the Bomb. Bravo, people, bravo.

I Reckon I do say

22 Jan

Not to skip around too much, but I’m going to skip around. There’s still much to tell of my 27 day stint in an inpatient ward from my severe flare. Where I left last, I was in the two person room, getting used to not having a roommate, watching a lot of PBS, struggling to determine what foods I could stomach and going to the bathroom… a lot.

Being the optimistic person that I was, I would tell the doctors each morning when they rounded at 7am that I was feeling better. No, my symptoms hadn’t really improved, but I felt like they were. They’d ask, “how many times did you go overnight?” and I would always reply 5 – 6 times, because honestly I lost count. I spent so much time in the bathroom, I’d bring my phone to entertain myself. Gross but true. iPhone Euchre and solitaire became by best friends from 1a – 6am every morning. I never went more than three hours without checking my facebook. Sometimes I’d be so groggy in the restroom that I’d just rest my head on the platform attached to my IV stand. The platform is about waist high, perfect for a heavy head to lay on folded arms while I took a break from my explosive circumstances.

Arm Candy

I don’t really know why, probably a number of factors, but the doctors started entertaining the idea of letting me out around day 7 or 8. About a day prior I stopped attaching the heart rate monitor. The ECG stickies were *so* abrasive to my skin, and the monitor sounded an alarm every time I got up because I became tachychardic so easily. That’s malnutrition for ya. I also finagled getting the nurse to get me off IV fluids for a day or so. It felt so good being able to walk without that damn IV stand tethered to me. I remember the following day my roommate visited me, and I felt so great! As if things were finally returning to normal. My IBD symptoms had seemingly slightly improved, but more importantly I had way more energy and felt in general more like myself than any day in the past couple weeks, easily.

The following day I was slated to leave. They had printed my discharge papers and instructions and Andreas was set to come pick me up around 5p. Only I felt miserable. I felt so insanely tired that I couldn’t shower. I skipped lunch and couldn’t even pack up my things to go. I asked a nurse to take my temperature and it came to 102 F. I remembered I had a fever when a different nurse took my temp the night before, apparently they hadn’t done anything about it. Also, every time I stood up I became incredibly light headed. They evaluated me and diagnosed me as “orthostatic”, meaning my blood pressure got so low when I stood up that I became faint. I naturally have low blood pressure (thanks, yoga!) but this was beyond my own body. Then sh*t hit the fan when my advocates were wondering where in the process did 1) my fever go unnoticed and 2) did I go off IV fluids? It was obvious I wasn’t ready to leave.

If I remember correctly, somewhere around that point I needed another blood transfusion. I can’t remember if this 102 degree fever happened before or after said transfusion, but there was speculation that at least ONE fever was due to the transfusion. Transfusion drama, mayn.

So, what do they do when I spike a fever? More tests perhaps? Let’s run the numbers, baby! I swear, modern medicine is good for cutting and ‘scripting when they are able to diagnose a pathology. But if the source is unknown, they’re pretty useless. And up goes the cost of the technical portion of your hospital bill. So, like chickens running around with their heads cut off, they test every viable permutation in sight and we wait patiently for the results.

Data to these people is key, almost independently of anything else. It seems to be a crutch in some ways, especially for GI physicians that aren’t IBD specialists. For a couple weeks, my Potassium was low, so they made me take horse pills every day. One day, my Potassium was slightly high, so I was required to drink a binding solution to pull the extra stuff out. That binding solution caused diarrhea, yet they gave it to me anyway. Seriously? Considering my prior labs, I doubt the value of Potassium was that high, but it’s moot at this point. I drank the delicious medicine cup and embraced a day that sucked for a new, different reason. Now I have a terrific tale of it all. All I can say is that I’m proud to be a part of the generation that actually questions the calls made by doctors. Especially in a situation where one of the doctors, the attending for two weeks of my stay, readily admitted that he hadn’t had much experience with treating cases like mine, so the team was just going by what was recommended in the published literature.

You're guess is as good as mine!

He even went so far as to continually mention to me that he spoke with “his buddy”, who is an IBD specialist at Penn. If you’re consulting another physician, please don’t refer to him as your buddy. Spare me that, bud. It makes me doubt his credentials by default. Though I did appreciate his honesty through this, I admit that my weariness of the physicians and the drugs might be what took me so long to show signs of improvement in the first place. Even if the treatments helped, I knew that nothing they had to offer would be curative. I could no longer rely on external forces to remedy an autoimmune problem. It’s always been about me, my mind and my body.

Interestingly enough though, for how much data my attending physicians relied on, when it comes to my continued care, the GI doctor I check in with mentioned that she cares more about how I’m feeling than the numbers. This was in relation to my lipase and amylase levels, measured to reflect whether or not I’m experiencing the onset of pancreatitis. Since November I have been taking Imuran, along with it there is an increased risk of pancreatitis, especially since I have had acute pancreatitis in the past (April 2010). It was interesting to hear someone admit that the numbers sometimes “don’t tell us much”. I wonder what it took to permit them to arrive to that conclusion. How much following of the numbers did it take before they actually had to listen to the patient.

Once they decided that I wasn’t going home that day, they again took a urine sample, stool sample, the works and sent them off to the lab. They ran the same tests they ran my first night in, made all visitors wear the buttercup tea gowns again. But this time, they moved me to a new room, one that I like to think of as the corner VIP suite. A private room. In the world of 7th floor inpatients, look, Ma – I made it.

That, or they recognized I was a highly sick patient in it for the long haul.

What’s in a Name?

9 Jan

I came up with the name of this blog around 9 months ago. I volunteered for a free weekly yoga class at Boston Medical Center, it came to me while setting up mats for class one Thursday evening. There I was, alone in the darkened basement level waiting room of the Radiology/Oncology dept, reflecting on the capability of one good poop to absolutely turn your day around. “Why do I feel so good right now? Oh yeah… that’s right,” I fondly reflected. For those of us suffering form IBD, these savior BMs keep us going, but even those fortunate enough to have consistently normal GI functions will admit dropping a clean deuce can have a profound effect on your outlook. I’ve always wondered how that sense of euphoria is physiologically triggered with the smooth muscle contractions of your GI tract. Clearly there’s something there. Freud spoke about it in the anal fixation period of child development. We derive pleasure from the release. But HOW?!

I’ve resigned that I may never know.

No joke, but I used to draw this as a kid. A lot. It was a tagline of sorts. I guess you just can't escape destiny.

At the time I had this revelation, that poop holds such power over us all, I must admit I was reading Eckhart Tolle’s “A New Earth”. A great one, though every 200-word chapter is so profound you can only read it 4 pages at a time. I still haven’t technically finished it, but the concepts continue to resonate with me each day. His predecessor book is titled “The Power of Now”, so it was kind of fun to think “The Power of Now? More like the power of POOP.” Fortunately for me, his books speak at great length of the importance of letting go of the idea of “I”, “me”, and overall entitlement, so I’d be awfully surprised if he turned around and sued me for jacking his sentence structure. Did I mention I have big dreams for the power of poop?

The name came to me and initially I thought it would be a cool book concept to string together a bunch of vignettes on how poop affects us: the extent to which modern plumbing plays into civilization, sanitation, the manure industry dependency of agriculture, health (both disease and therapy), etc. I also thought it would be cool to have a section with a chart of different poop consistencies, like a reference manual. I did some research and found an book on that latter concept entitled What’s Your Poo Telling You?, which has 85 reviews averaging 4.5 stars, so at least some people are interested.

I might also note that other cultures are WAY more into poop than we are. It’s not so much a matter of acknowledging the power, rather understanding extent of it.

Street vendors in Korea will make you bread in the shape of a steaming dog pile.

Also found a pediatric study conducted in Amsterdam that used a stool scale chart to asses the differences in poopies between at term and pre term infants. Studies like this have resulted in findings such as green poop in infants is normal. So new parents have one less thing to worry about. Bless these researchers’ souls.

Ok, so, the power of poop. Anyone who is anyone knows that the first step is to google. Always google first. So I type in the delightful phrase and happen upon a fascinating podcast from our friends at Freakonomics Radio. It’s the first search return.

It’s magical the way the universe works. This podcast, which is only like 15 minutes, gives a brief introduction to the work Dr. Thomas Borody of Sidney Australia. Dr. Borody, who is a GI doctor responsible for finding the first antibiotic for peptic ulcers, has recently spent much of his career demonstrating the efficacy of stool transplantation for the treatment of many diseases, both GI and otherwise. Fecal bacteriotherapy, or fecal transplant, is basically when the stool of a healthy donor is diluted with saline, mixed and, how shall we say… deposited in the rear of a diseased person. This is usually done via colonoscopy so the physician can dispense a uniform amount through the colon, but has also been shown to be effective via home enema kits. This treatment is most known for being a cure of C. diff infection and resulting pseudomembranous colitis. However, one interviewee, William Kostopoulos, on the podcast mentions undergoing treatment for MS. After his transplant, the MS slowly disappeared. Whether they can attribute it to the bacteriotherapy is up for speculation.

William Kostopoulos, on his custom chopper, with Thomas Borody. (Photo: Zoe Arnold, via Freakonomics Radio))

Though everyone agrees that a randomized double blind clinical study is needed in order to make it a standard of care treatment option for anything outside of C.diff, Dr. Borody published a case study on 6 individuals who were cured of chronic Ulcerative Colitis after 6 fecal transplant sessions: the first performed with colonoscopy by a physician, followed by one subsequent transplant per day administered via a home enema kit. After 13 years all patients were still UC free.

The case study wasn’t discussed in the interview, actually nothing related to UC was mentioned in the podcast; upon first listening to it I didn’t even equate that it’s something that could be beneficial to me. But I did think this was exactly what I was looking for. Evidence that not only does shit happens, but shit cures. And that’s some powerful shit.

Here’s the full case study for those who are interested:
Borody Ulcerative Colitis Case Study

The Holidaze

14 Dec

I don’t know about you, but my theme for the month of December is “Eat, Papa, eat.”

Who ever heard of a skinny Santa?

After leaving the hospital back in early November with a net weight loss of 15 pounds, I resumed daily civilian life with a real zeal for food. Cooking especially. I had quite an appetite plus a backlog of food I wanted to make myself. Something all my IBD and intolerances have opened up was my desire to prepare food for myself; it became a way to protect myself and also a creative outlet. That was pretty much shut down for that month in el hospital. People who are incredibly honest admit they’re partially jealous of people who have UC because during a flare, despite what you eat, you absolutely can not put on weight.

Well, good news is I’m getting a lot better. Bad news is now I have to atone for what I ingest. And overnight all the subconscious guilt, paranoia and fear associated with being a pudge have returned. I read this fantastic article by fellow yogi Hannah Siegle on our cultural fear of bellies:

Soft, pliable, round, full, vulnerable. All dirty words.

And she notes her own personal link between her eating habits and digestive symptoms and food intolerances. I’m starting to realize it’s self sabotage, really. So as my practice earlier this month was to gain nutrition, now my practice is to maintain nutrition. Physically, emotionally, mentally. I’ll let you know if I actually figure out how to strike that balance.

Even if I blow up like a marshmallow, I can still be winter cute.