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.

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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

Supercharged South Beach

28 Dec

Since I take a daily cocktail of drugs, my blood levels are monitored weekly. Two days ago I received word that, for the first time in probably 6 months, my hemoglobin and albumin are within normal range. It’s a crazy feeling to know quantitatively I’m approaching health.

As far as diet, I’ve noticed I can venture in to the land of gluten and sweets with relatively little punishment. Which is great for this time of year. Unfortunately the only food group that’s really still troublesome are raw and roasted veggies. If I were four years old this would be no problem, but I love me some kale. Plus I am longing to try this diet, founded by Dr. Terry Wahls who used it to effectively reverse the onset of her MS:

Mitochondria manage the energy supply of the cells. Remember the Krebb’s Cycle from high school biology? It’s how we use oxygen to supply cells with fuel. It’s hypothesized that mitochondria were once their own separate single celled bacteria that were engulfed by the predecessor to modern human cells; both mutually thrived as a result. Supporting this theory is the fact that Mitochondria has its own DNA, which is a genetic copy of your mother’s mitochondial DNA.

So the fruits of Dr. Wahl’s research and labor came down to getting more of the following from diet:

Fish oil, Creatine and co-enzyme Q-10: protect the mitochondria of brain cells
Vitamin B1, B9, B12, Omega 3 fatty acids and Iodine: protect the myelin insulation of neuron cells
Vintamin B, Sulfur and Antioxidants: fuel for mitochondria

And these nutrients should be consumed via food, not supplements, due to the fact food contains innumerable cofactors and other beneficial components that science can not yet quantify. So the daily recommended intake is:

Leafy green vegetables – provides Vitamins A, K, B, C and minerals. Kale is the most nutritious per calorie of all plants. Daily intake should be 3 cups, or one dinner plate piled high.
Sulfur rich vegetables – cabbage, broccoli, cauliflower, root vegetables, onions, etc. 3 cups per day.
Bright color fruits/vegetables – berries, carrots, peaches, etc. provide flavonoids and polyphenols which have been shown in in vitro studies to be anti-allergic, anti-inflammatory, anti-microbial, anti-cancer, and anti-diarrheal activities (say wha?!) 3 cups per day.
High quality protein – grass-fed meat every day, wild caught fish (salmon, herring)

And at least once a week she recommends you consume:
organ meat – tounge, liver, etc
Seaweed – provides iodine and selenium

Aside from the benefit to our brain and neural system, the argument is that sulfur, iodine and other vitamins that we typically skimp on are actually impeding our kidneys and livers from flushing toxins produced as a result of metabolizing inflammatory foods like gluten and dairy. The abundance of these toxic byproducts is what’s believed to cause intolerance to many people who don’t qualify as allergic.

Needless to say I can’t wait to try this out, but in the meantime low-residue for the win while I shop around for CSA’s, cause this surely won’t be cheap.

I love Kalamazoo, Michigan

15 Dec

What a charming place, really! Kalamazoo and Louisville KY are two places at the top of my list. I’m here visiting one of my good friends from high school. I hesitate to use the term “best friend” because I feel somewhat guilty about ranking those close to me. It’s kind of irreverent, no? I should be so lucky to have more than one good friend; it’s rather rude to assign value beyond that. Talking about friends makes me think of the Whodini song. Being of the generation that I am, I first encountered this track by way of songs that sampled it, namely Nas feat Lauryn Hill “If I Ruled the World” and MF Doom’s “Deep Fried Frenz”. As a disclaimer, the video below is the only one that doesn’t make you wait for an advertisement. As a bonus, the video is also a piece of work in itself. I highly encourage watching it the whole way through. Yes, the boobs are my friend’s.

I’ve always been wary about taking for granted those close to me. When I was a kid, my two younger sisters and I had second “families” that consisted of cartoon characters mostly. You could draft whomever you wanted, the only rule was that we went in turns. Middle sister ‘called’ April from TMNT and Gaston from Beauty and the Beast as her parents. My youngest sister called Anita and Roger from 101 Dalmations as hers. In response, middle sister called all 101 dalmations in her posse. …Clever girl. When it came my time I appointed Jessica Rabbit from Who Framed Roger Rabit to my family, then immediately opted out of the game. It was my opinion that Jessica Rabbit could not be topped, so I simply cashed my chips in early. More importantly though, in my gut I considered it blasphemous to take for granted the family to which you actually belonged. Not enough to opt out of the game entirely, but enough to dip out before I got too deep and my conscience suffered. Yes that’s right folks, I was a properly raised catholic girl. Pseudo-lesbian fascination with a female sexpot followed by self-inflicted lashing.

Good God, how was this movie rated PG.

To be raised well as a wee little catholic, both guilt and fear must be present abound. In general, guilt limited my participation in pretend games. However, playing church was totally my shit. It was a safe route for thine imagination, plus someone has to make use of the remaining Vanilla Wafers – they go stale pretty fast. I was helping the family. Side thought – is church communion gluten free?

Fear was also instilled in my upbringing, albeit unintentionally. We had a ‘picture’ of Jesus in my childhood bedroom that was really just some random bearded man from the 70’s wearing a burlap sack around his head. The caption under the photo was in all white caps “I AM ALWAYS WATCHING OVER YOU” or something to that effect and I won’t lie – the picture scared the be-Jesus out of me. At night the outline of the burlap sack made the silhouette of a ghost. Freaking scary. A Cleveland Browns windsock (yes… you read that correctly) hung from the ceiling in a way that strategically blocked scary real-life Jesus from my view on the bottom bunk. My saving grace, the Cleveland Browns. Though disturbed, I felt too guilty to tell my parents about it. How do you really tell your elders that you find the sight of your Lord and Savior offensive?

Something like this.

So back to my visit. This friend of mine and I shared some ridiculous times together from age 11 to 15. Pretty defining moments in the life of the American pre/teen. We were both tomboys: she petite and funky, I large and mannish. We can laugh about it now that we’re both hot (and grounded). Back then we played instruments, hacky-sacked, ate zebra cakes, shopped the Old Navy men’s section and most importantly made spoof films involving toys, outlandish grossness and the most insane voices you can imagine. It’s been about 3 years since I’ve seen her last, we took the first 15 hours or so to catch up seriously on the major happenings in our lives, after which we promptly fell back into our idiosyncratic intonations.

It made me reflect on the importance of comradery, particularly female comradery. I’ve never been one to be surrounded by a gang of close female friends. Sorority sister I was not; I truly consider many women just too conventional to relate to. Everywhere I’ve lived, I’ve always rolled with a core one or two-some of femme fatales and left the acquaintances at home. But in times like this, during my recovery, I especially notice how few and, more importantly, far between my female friends are. Someone in a Boston femme group mentioned one of many studies that found people with female siblings are less likely to report such feelings as ‘I am unhappy, sad or depressed’ and ‘I feel like no one loves me.’ It’s theorized that the frequency of communication is what makes the difference. Not the subject or the length of each discussion, but simply the fact it happens more often.

With that – call a girl you love.

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.