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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.


The Conundrum

2 Mar

Since my last update things have been reeeeeal up and down. But I guess that’s the nature of life. The SCD diet provides you with little guidance after the 3-4 day intro, so from my own experience here are some things I’ve noticed:

1) Nut flour = hard to digest so soon. I’m thinking they are something to introduce after a month or two on the diet.

Be weary. Be very weary.

2) dairy = no good for me. SCD yogurt = no go, aged cheddar didn’t work either. I am bummed to say the least.

3) cooked apples and peaches = delicious but far too easy to eat too many. I have yet to try making applesauce, maybe that’s where I should have started.

5) Sliced bananna with honey is a nice dessert, but I’m weary of bananas being so high in sugar, so I haven’t been foxing around with them too much.

6) Bolthouse Farms smoothies – strawberry banan in particular – seem to be ok, though who knows what “natural flavors” consist of.

7) Orange juice needs to be seriously diluted. I need that Vit C as a co-factor for the iron I take 2 x a day, but damn is it hard on the stomach.

8) I love hamburgers, partially because I have to. That is a fact.

Minus, you know, all the fixins.

9) Homemade mayonnaise is hard to make. I’m currently 2 for 4. I have a recipe I will share, I think I finally know what the determinate factor of success is.

10) Still up in the air on eggs. SCD says not to eat if you have D, but I’m not sure if they trigger my symptoms or not.

I will say that I found an SCD legal brand of olive oil mayo from Spectrum, and it is the bomb. Far better than any other mayo’s, let alone one I make myself. As a child of the midwest in the 80’s, you can imagine I was all about the Tangy Zip of Miracle Whip. This spectrum mayo has all of that deliciousness with none of the Monsanto-injected poisons.

Condiment Queen

I’ve also been all about the honey + brown mustard combination since that too is SCD-legal.

As of late,
the biggest challeng has been dealing with prednisone-induced acid reflux which is compounded by all the protein I’m eating. I wonder if increased acid production causes D? For the past three days, here’s the cycle:
1) I get bad heartburn at night, followed by cramping and D the next morning.
2) I feel super rotten until 10a, at which point I feel great.
3) Reflux resumes after dinner.

I feel like this recent diabolical trend is not typical for my UC, but a result of the heartburn. Who knows. Avocado and banana seem to be good buffers to heartburn, I’m going to try pureed cooked carrots as well. I also take protonix twice a day. Last night I took baking soda with water per the instructions on the box as a SCD-legal remedy for heartburn. Worked pretty well but I woke up with chipmunk cheeks – when you’re on prednisone, Sodium intake is what causes moon face… so cut your salt and you get your cheekbones back.

In terms of my long term healing plan, I got a 2 stage approach figured:

Step 1: Go on SCD to get symptoms under control.
Achieve a realistic remission (no cramping, no urgency, normal relief patterns, etc) for a certain amount of time.

Step 2: Undergo 5-10 Human Probiotic Infusions (HPI) per the at-home instructions from Dr. Borody, one per day.

It seems that Step 1 is going to take some time. I’m gearing up for a trip to Germany at the end of April. In an ideal world I’ll do the HPI’s before then so I can hopefully tolerate a wider variety of foods. But we’ll see. In the meantime look out for SCD recipes!

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.

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.

The Reckoning – Taste and Smell

4 Dec

So that first week in ye olde hospital was interesting to say the least. Something about being sick or being on prednisone made me super sensitive to smell during that time. Before being admitted, when I was trying to recover on my own at home, Andreas had bought me a monstrous bouquet of flowers. I think it was two or three bouquets combined and he made sure to put a few lillies in them because they are my favorite. At least to look at. I won’t lie, the sickly sweet smell of those flowers made me ill. One evening I turned in a little early and went to lay in bed. Like a sweetheart, he went to grab the bouquet so I’d have something pretty to look at in my periphery. I didn’t want to be a bitch – “your flowers smell disgusting, get them out of my sight”, but I had to finally tell him I couldn’t handle the smell anymore.

The first bouquet from Andreas that sparked a 2 year lilly affair.

When I was first admitted, everyone was being nice and asking me “where to send things”. I was very upfront – here is the address, ” please do NOT send me things that smell.” So my grandparents, being the beautiful caring people they are, sent me a couple of foil balloons, a teddy bear and a box of chocolates. Chocolates, for someone like me who was on a heavily restricted diet at the time, were also a no no. But I won’t lie – I nibbled the hell out of those things. And by nibbled I really mean nibbled; I took a tiny microbite of almost each one. Definitely regretted it later but HEY, you gotta live sometimes.

Living Large, week 1. I deserved to nibble on those chocolates.

On that tip, I don’t consider myself a really disciplined person when it comes to food. Based on what I’ve just written regarding my chocolate nibbling, I don’t expect this to be a shock. I think of my ulcerative colitis as a lesson in psychology – namely self control. According to the Ainslie-Rachlin Model of Self-Control (Ainslie, 1975; Rachlin, 1974), the value of a reward changes in relation to how much time is left before you receive it. The closer one gets to receiving a reward, the more valuable it is, the less self control you have. I read somewhere about a study where young kids, say, 4 year olds were offered either one candy bar today or two candy bars tomorrow, and most often these children chose to receive one candy bar today as it had higher perceivable value; they could just taste it! When six year olds were asked the same question, they most often chose the greater payoff at the expense of waiting a day. So theoretically we build more self control with age.

UC has pretty much screwed that up for me though. Though it’s forced me to cut things out cold turkey – which some might say takes a lot of discipline – but I’m not consistent enough; the lack of normality impedes having well-maintained levels of self-control overall. All my dietary restrictions have increased the value of the reward – the immediate satisfaction of taste. Add to that the fact that it takes 6 – 12 hours to know if a food I eat has actually triggered symptoms, and we have a picture perfect case of chocolate deliciousness now vs. abdominal discomfort later. If I feel pretty good one day and let *something* slip with my diet, chances are that same day I made multiple exceptions. As of late I am predictably hurting the following day, at which point I return to my usual foods. It becomes this pendulum of lenience and strictness, giving in one day and being a hard-ass the next. I can’t help but wonder if this mental aspect of my eating complicates or even worsens the disease itself. Maybe all this internal debate causes me stress, too. Why oh why can’t we all just eat pepperoni bread 24-7 in harmony?

Side note: Fabulous gluten free pepperoni bread recipe. Make sure to sub in white cheeses though, I found swiss and mozzarella together worked well. I don’t know what that crazy lady was thinking fooling around with cheddar.

ANYWAY, back to the flowers. They stunk. Coming away from the hospital experience there are three scents that really make me sick just thinking about them. One is the smell of lillies – pretty much done-zo for me. The second is the smell of the hospital soap in the bathroom. I can’t even show up as an outpatient for labs without smelling that stuff and being immediately transported back to the 7th floor inpatient suite. Third smell is in my bathroom at home – it’s a linden flower soap I had recently purchased on my yoga retreat trip just prior to this epic. It really has a nice smell, but I can’t help but associate it with the feeling of fragility and sickness. I remember one time specifically where I mustered up the strength to stand long enough to shower, then afterward I basically stumbled upstairs to my bedroom and collapsed on the bed, without moving, for a good 20 minutes. I was just lying on one side, staring at my red plastic laundry basket, breathing. It’s crazy how smells can immediately take you back to those places. In the forefront of your cortex is the conscious effort to move on, yet at one whiff your subconscious yanks the leash to pull you back. No, you remember this. This was pivotal in your development and you are not allowed to let it go.

The Reckoning

1 Dec

The second time I went to the ER, there was a lot less time between arriving and being admitted. I told every nurse I talked to that I was there one week before. The woman getting my stats was the same woman as the first time. Remember me? What they did for me last time didn’t help, so I’m back for more! I should have taken the ineffectiveness of my first ER trip as a sign, but it’s funny how mundane reasons like “all my medical records are there and it would be a pain to fax them” became deciding factors when it came to choosing my care. It was just easier.

So I got to my ER bed, they set me up with an IV and administered my first dose of IV steroids. I settled in and proceeded to watch some Disney channel cartoons. I figured it was good to lighten the mood. To give you a gauge of what I was going through, in the two or three hours I was laying in the ER bed, I had to get up at least four times to use the restroom. And that bathroom was like the equivalent of one big dirty Band Aid, so I really tried to avoid going back there. I brought some rice from home and ate some while I was waiting to be taken up to my room. Call me a toddler’s mom, but I usually pack a snack, especially with all my dietary needs. I’m glad I did that day; my doctors casually put me on a clear liquid diet for the rest of the night just after I finished nibbling. It was the first of many times those bastards sprung a clear liquid diet on me with no warning. Or worse, an “NPO” – nothing per oral, meaning no food or drink (not even water! They would concede to ice chips if you really needed them. I refused purely on principle).

While I lay there in ye olde Emergency Department watching Phineas and Ferb, next door I listened to someone explain to a patient that, though he had chest palpitations and they could give him medicine for it, the real root cause was the fact that he drank at least six beers each day. I wonder if he got the message.

A few hours later I was taken up to my suite, which I then forth referred to as my hotel room. It was a large two-person room separated by a curtain; standard. I set up shop on the side with the window and my roomie was an elderly Chinese woman accompanied by her husband. At first it sounded like she was being discharged the next morning, but she in fact was ready to go home that night. After lots and lots of medical interpretation over the phone about when to take nitroglycerine tablets, the woman and her husband left around 9pm. I didn’t have another roommate for at least a week.

For how terrible this experience was, there were a few perks that made me appreciate that my situation wasn’t as bad as it could be. On the other hand, it was clear even from my admit date that I would be in the inpatient ward for much longer than the average patient, so maybe I was given consideration. That first night my labs were out being screened for all sorts of virulent diseases and bacterial infections. While they waited for the results, everyone had to err on the side of caution by effectively putting me on quarantine. So there was no chance that I would have gottten a roommate at least during those first few days. When you’re going from zero to sixty in terms of invasion of privacy, having the freedom of my own room made a big difference. I think it was effective planning on the part of the nursing staff that, once all the labs came back negative, they still did not place me with a roommate. Who’d want to share a bathroom with me? They monitored my ‘output’ in a little hat. No one else should have to look at that except the saintly techs that note the volume and flush. Often times I’d have to ring the call button just to tell them to clean the damn thing. A sweet lady voice would come over the loud speaker “How can I assist you today?” “I, uh, went in the hat. Thanks.”

So having my own room was one perk. Now that I’m writing this, it was pretty much the only perk. Oh, and the view. The view from that room was quite nice, overlooking the city and the morning traffic on I-93 S. Everything else was pretty terrible. That first night, around midnight, I woke up to the nurse telling me I needed a blood transfusion. Good Morning! The risks were explained to me, I groggily signed a waiver and laid there nervously pondering the realistic chance that I’d have an adverse reaction. I asked her what are the typical sensations if were to have a bad reaction and she said “you just won’t feel right. You’ll know.” Oh, good! She said it takes some people a while to feel something, others feel it right away. It did feel a little weird, but it was psychosomatic; I couldn’t help but stare at the IV as the bright red opaque solution ticked in with the click of the pump. But all was ok. During the next few hours I was bombarded by people checking in to take my vitals: blood pressure, oxygen saturation, temperature. I always feel so ridiculous when they reach out to put the thermometer in your mouth, like I’m a baby calf about to drink out of a bottle.

Needless to say that first night was a whole lot of no sleep. By the next morning I was hungry, tired, cranky and not really feeling any better physically. But it was nice to feel like I was being taken care of by people paid to do it, as in no longer putting a substantial burden on my boyfriend Andreas.
Speaking of him, that morning, after my 6a dose of prednisone, I fell asleep. I woke up a half hour later to a hand gently brushing mine – I was startled awake to see Andreas sitting by my bed, wearing a gauzy yellow gown that reminded me of a trash bag Missy Elliot would wear. It was absurd. Apparently everyone was supposed to wear these Peep-colored gowns while I was on quarantine. Regardless it was a heart-warming surprise; I definitely did not expect to see good old Dre Day before he went to work, but that’s just one of the many ways he went out of his way to be there for me during that time.

Later that morning I was elated when room service brought me a tray of food. Though it was of the clear liquid diet variety (chicken broth, green jello, hot tea, raspberry sorbet), and though each food contained something on my No list (sugar, gluten, dairy), I ate it all. Or drank, rather.

As with any experience, there’s a learning curve involved. The first week in the hospital was about learning the side effects of IV steroids (they cause immediate diarrhea!), learning what foods on the hospital menu were delicious yet dangerous (the more delicious, the more dangerous), learning what time The Chew comes on each afternoon (1p EST).

Also part of my learning curve was re-learning what pain was. The first time I went to the ER (a week before my inpatient stay began), I had terrible, terrible stomach pain and distension. I remember running across the street to get to a Pho restaurant and the bouncing up and down of my gut caused me to writhe in agony. The 20mg of oral steroids the ER doc sent me home with greatly helped that pain go away, and all I was left with was typical gas, bloating, mild distension all related to digestion. I called all that “discomfort”. By comparison it was not sharp, it was not as immobilizing, it was something I could, for lack of a better word, stomach.

And the discomfort came and went with meals. It didn’t help that pretty much everything on the hospital menu contained gluten. Even if you’re not sensitive to it, it’s a very inflammatory substance. Try eating a gluten free pizza sometime, I guarantee you won’t feel like committing suicide after. Maybe that’s a strong statement, but let’s be honest: most wheat products leave us with some sort of feeling of regret, even if mild. Does anyone feel fucking fantastic after a big pasta meal? No, chances are you want to take a nap. The residual crappiness is because it’s hard for our bodies to digest; undigested gluten stimulates our inflammatory response, if only mild. Add to that the fact that it’s more omnipresent than Massholes at Fenway, and we just don’t even notice it anymore. A recent article in the NY times estimates that 18 million people in the US have some sensitivity to gluten. And the rates of celiac disease are on the rise.

The same goes for cow’s milk and milk by-products – everyone is to some extent lactose intolerant. The hospital food people said the mashed potatoes could be made without milk, so I always specified mashed potatoes “lactose free, no milk”. Unfortunately it took one lunch where I only ate mashed potatoes to realize there was only one recipe, and it always had milk. Like an ass I never questioned the fact that the receipt never noted anything about the mashed potatoes being modified. They had amazing “baked” chicken tenders which of course are breaded and deep fried and then baked, so… most recent cooking method wins! For the hospital being a place where I was supposed to get better, they really did throw me substantial hurdles with the food. All things tasted good going down, then wrecked me about six hours later. I’d crawl into the fetal position, try to sit up in a chair, I’d whimper and suffer through it and still never call it pain.

I’ve had acute pancreatitis, mind you – now that’s pain. I actually think my pancreatits is related to how I got UC, but that’s for another time. I also had a nerve block shot through an artery in my wrist. I think that’s the most pain I was ever in. I’ve also had an IUD put in and I’ve never been pregnant, which equals a lot of pain as well. When nurses on the floor would ask me how much pain I was experiencing on a scale of 1 to 10, I always humbly answered something less than four. That first week I denied I was in any pain at all. Yes, I’m a yogi. Yes, I arguably have good “body awareness”. Yes my perceptions of my body were definitely skewed for a while. But in terms of real, hand-to-God pain, I’ve been to hell, people; I know what I was going through was nowhere near as bad as it could have been. So I told the nurses that I used my own universal pain scale:

10 – pregnancy (never experienced, only hypothesizing)
9 – nerve block
8 – pancreatitis
7 – IUD implantation
4-5 – UC flare digestive symptoms

Regardless, that first week I was in a lot of pain and didn’t think to ask for anything for it. I learned better soon enough. After a few days I started to get the hang of being my own advocate, but for me it didn’t come naturally. Looking back at those very first days in my suite, besides the constant bathroom breaks and pain, I was beyond fatigued. I mean not just physically, but mentally and emotionally. It’s hard to explain the sentiment that you don’t even want to look at email because it requires too much mental investment. I didn’t feel like returning texts. My phone was too heavy to hold up to my ear for more than a few minutes. Also, steroids can make you quite a crabby little one, and I definitely noticed there were times where I just did not feel like dealing.