On Malabsorption

This post is the second in a series of posts on vitamin supplementation for people with IBD. See my first post here. I do tend to sprinkle other topics in between posts in a series. This is mainly because I can’t stand to write on any one topic too many days in a row. I need variety. What can I say, Google has shaped my mind. So, without further adieu…

There is a lot out there on malabsorption. My job in this series is to distill it down to the essentials for those with IBD—what do I need to know? View this series as an executive summary on on vitamin supplementation for IBD, this post being the executive summary for malabsorption.

The term malabsorption covers more than 25 diseases and syndromes; I’ve focused here on IBD.

The most common cause(s) of malabsorption is inflammation or lesions of the intestinal mucosa. This inflammation breaks down the mucosal wall, decreasing the gut’s ability to digest and absorb nutrients. Diarrhea associated with IBD also increases transit times, which decreases absorption.

Think of it this way: Your gut is like an energy capture processing center—take food in, use it as efficiently as possible, spit out the waste. With diarrhea, the machinery is moving too quickly. With inflammation, the machinery itself isn’t functioning properly. So your plant is operating at partial capacity.

In the name of making this post as readable and usable as possible, I’m going to rely on bullet lists—remember, executive summary.

Common Symptoms of Malabsorption:

Higher stool volume (because your processing center is working at partial capacity)*

Cramping and abdominal pain, esp. before a bowel movement

Bloating and gas**

Weight loss

Diarrhea

*A normal stool mass averages 100-200 grams per day in an adult. (What is normal?)

**Gas and bloating occur mainly because the flora in the large intestine ferment (feed on) the undigested matter, typically carbohydrates (these leftovers are what the SCD tries to decrease). One product of this fermentation is gas. This is why it is so dangerous for folks with active diarrhea due to IBD to take Imodium. With decreased motility, gas builds up in the large intestine, and puts pressure on the intestinal wall, drastically increasing your chances for toxic megacolon—For more on this, see my post on Imodium.

Below I list some common deficiencies from malabsorption along with (in parentheses) some common symptoms of them. I will go into greater detail on each deficiency as we progress through this series on vitamins. Remember, the goal is to build the case for vitamin supplementation, and to provide the basic tools for choosing a supplement regimen that is right for you and works with your stage of healing IBD.

Common deficiencies associated with Malabsorption (and some frequent symptoms):

Note:   Neither the list nor the parenthetical symptoms are exhaustive. I’ve just hit the major deficiencies and a few of the common symptoms associated with that particular deficiency. These deficiencies are usually more prominent in those with inflammation of the small bowel, as most absorption occurs in the small intestine.

Iron (anemia, lethargy, etc.)

Zinc (loss of taste)

Folate (abnormal red blood cell growth…)

Vitamin B12***

Vitamin B6***

Vitamin A (night blindness, dermatitis)

Protien Calorie Malnutrition

Calcium (bone loss, muscle cramps, heart rhythm irregularities)

Vitamin D (works in synergy with calcium)

Fat malabsorption (soapy stool, vitamin A, D, E deficiency)

Protien (adema of lower extremities)

Vitamin K (blood thinning, increased healing time)

Potassium (affects neuromuscular conductivity…potassium is involved in just about every physiological process you can think of, and some you can’t.)

***Vitamin B deficiencies can alter nerve cell function, and can cause peripheral neuropathy. Both vitamin B6 and B12, and folate deficiencies can accelerate arteriosclerosis (inflammation of the arterial walls (read: heart attack)). B12 deficiency can be one of the first to appear as uptake in the ileum is frustrated by inflammation.

Why can’t I get what I need from a healthy diet, like the SCD?

I went into some of this in my first post.

Dr. Bill Misner, PhD writes about athletes (who typically have a better diet than the average American), [Healthy] “athletes today ingest only 11% of the organic nutrients from their food sources that the athletes of the 1940’s enjoyed.” This is largely due to soil depletion, and modern farming practices such as green harvesting.

Bruce Ames, professor of biochemistry and molecular biology at the University of California, Berkeley, implies that micronutrient deficiency may eventually deteriorate the quality of whole human cell health.

Inadequate dietary intakes of vitamins and minerals are widespread, most likely due to excessive consumption of energy-rich, micronutrient-poor, refined food. Inadequate intakes may result in chronic metabolic disruption, including mitochondrial decay. Deficiencies in many micronutrients cause DNA damage, such as chromosome breaks, in cultured human cells or in vivo. Some of these deficiencies also cause mitochondrial decay with oxidant leakage and cellular aging and are associated with late onset diseases such as cancer.¹

Also remember, your processing center is not functioning properly. The SCD is perfectly nutritious, and in theory, you should indeed be able to get what you need from the food in the SCD. However, with a damaged gut, and if you are on medication, your chances of deficiencies are high. In this series, we’ll look at the major categories of vitamins, some of the causes for specific deficiencies, and what levels of supplementation is recommended for those with IBD.

Onward to Health.

¹REFERENCE: Ames BN, Low micronutrient intake may accelerate the degenerative diseases of aging through allocation of scarce micronutrients by triage, Proc Natl Acad Sci USA, 2006; 103 (47): 17589-94. (Address: Nutrition and Metabolism Center, Children's Hospital of Oakland Research Institute, Oakland, CA 94609, USA). www.ncbi.nlm.nih.gov/pubmed/17101959?dopt=AbstractPlus

Starting the SCD: A Podcast with SCD Lifestyle

This week I did a podcast with Jordan and Steve from SCD Lifestyle. They are doing a great job helping people to get started on the SCD. 

This is the first in a series of regular podcasts. Each audio post will deal with a different aspect of living on the SCD. In this weeks post, Jordan, Steve, and I discuss getting started on the SCD. Below are some of the questions we discussed, courtesy of the guys at SCD Lifestyle.

:45 Can you walk us through some of the challenges you faced and how you actually started the diet?

9:43 When you first learned about the diet, what were some of the biggest challenges and limiting beliefs to immediately starting the diet, why did you hesitate?

14:45 Was the social challenges of the diet really awkward?  What was it like eating SCD around other people?

22:35 What was your mindset like the week before you started the diet?  What was going through your head?

38:50 How did you prep your family and friends when you were starting the diet?

42:30 How did you handle not being able to eat the food that your family is used to making for you at family get-togethers?

48:30 What is your final piece of advice to someone thinking about starting the diet?

You can listen to the podcast here, or those of you who get the feed will have a link at the bottom of the feed.



Or you can go to SCD Lifestyle and listen to the podcast on SCD Lifestyle's site.

Download the podcast here.

I would love to hear your suggestions for podcast topics, and as usual, questions are welcome. That’s why we do this—to help each other thrive on the SCD. Enjoy the podcast.

Onward to Health.

SCD-Friendly Goo-OO, That's Good!

For weeks I’ve been scouring the web and quizzing my friends: How can we make an easily digestible, SCD-friendly energy bar?

Most recipes I’ve found either use illegal ingredients for which I cannot find a suitable SCD-friendly substitute, or they use too many hard ingredients, like whole almonds. I want something that’s fuel-efficient; something that’s portable, easily digestible, and provides the energy I need. I want SCD-friendly goo, or an SCD-friendly power bar.

So, this past weekend I tried making what I wanted, since apparently no one else has done it for me. I failed miserably. I was going for something like a banana blueberry power bar, and I thought I had finally found the perfect solidifying agent—Cocoa Butter.

It turns out that if there is too much liquid in the mix, you could use mortar, and the bars still wouldn't solidify. Oops.

Cocoa butter would probably still work (I'm still experimenting, suggestions welcome) if I got the proportions correct, or coated the bars in cocoa butter instead of mixing it in...that is, if I can get bar-like texture at all.

The 'bars' came out the consistency of natural peanut butter, just slightly runnier. Oops. Disappointed, but not completely deterred by the texture, I tasted my experiment. Wow! The goo of the gods. It was so good, I could have eaten the entire pan right then and there. It was like a fruity delicacy with a hint of nutty chocolate (a flavor I thought I'd never taste again).

But how do I eat this stuff on the run? Hmmm? After some searching and not a little brainstorming with my wife, it came to me: Coghlan's queeze tubes. I packed a squeeze tube half-full of my purple goo and headed off to the woods for a long run. It worked like a charm. 

One warning about cocoa butter: Cocoa butter is an advanced food for SCDers, so make sure you can tolerate it. It's pure vegetable fat, so too much will make you feel sick, especially while exercising. Go at it slowly. You can always make the goo below sans cocoa butter.

Since it worked so well for me, and because I'm looking for help/suggestions, I'm sharing the first-generation recipe here. Remember, this is the first iteration. I will play with the recipe, and I hope others do too. Let me know if you succeed in improving the batter. 

I hope you enjoy my SCD goo.

Goo of the Gods

2 very ripe bananas

1 cup raw pecans

6 oz. blueberries

1/8 cup honey

1 tsp lemon juice

1/8 cup melted cocoa butter

Puree the bananas and pecans together. Set aside. (FYI, this mix is good by itself, even w/o the blueberries. Try it!) Puree blueberries and place them in a small pot. Add honey, lemon juice, and simmer for about 20 min. The goal is to reduce this mixture to a compote, or jelly. Be careful to stir the mixture a couple of times to ensure it doesn’t burn. Remove the blueberries from the stove and add the solid cocoa butter. Stir until the cocoa butter is melted. Combine all the ingredients in a glass bowl, or small glass baking dish. Place in the refrigerator to cool. Once the mixture has cooled, pack it in the squeeze tubes and place in the fridge.

If I had this to do over again (which I do, this weekend), and to get a more bar-like texture (if you don’t like goo) I’d add more pecans, and soak them to make them more easily digestible, 4-6 hours. I’d also lose the honey and maybe add a date or two.

Onward to Health.

Someone Read My Journal

My wife loves to journal. Me, well, I like the idea of journaling. During my time as an outdoor educator, teaching for Outward Bound among others, I never left civilization without my journal. The nature musings of John Muir, Aldo Leopold, and Emerson would pale in comparison to what I would write in my journal on THIS TRIP. 

In reality, I had no chance of competing with Emerson (for myriad reasons), largely because he actually wrote. Over the course of a thirty-day wilderness course, I would log an astounding two, maybe three, journal entries. But remember, I love the idea of journaling.

This is precisely why, as I browse my symptom "journal", affectionately known as the UC Tracker, I find lots of data and very few personal notes--with the exception of this one, dated April 13, 2009.

It was early afternoon, and I had already been to the bathroom nine times. I was on Imuran, Colazol, and my second round of prednisone. The note simply reads, Kill me. If I have to live like this forever, I'd rather not.

I wasn't suicidal, not at all; however, I had reached the point, after six months of terrible, constant flare-up and failed treatments, that I just would have rather it killed me. At least that way we would be progressing to some conclusion, some definable end to what I was suffering. 

It's me! Almost finished with the half-marathon.

It was just about a month after that entry that I found the SCD. It's as if God had read my journal--or my mind--and had given me a chance.

Fast forward.

It's been 16 months on the SCD, and I can't even imagine that world of April, 2009. I still have some symptoms that haven't cleared, and I still have a bad day here or there (if I eat something that doesn't agree with me), but a bad day has gone from 24 BM/day, to maybe, maybe three loose stools in a day. If things get really crazy, I might go four times. I have energy. I'm training again, and two weeks ago, I finished my first long-ish event in almost two years. 

The International Peace Half-Marathon was held, September 11^th, in Georgetown on the C&O Towpath. The weather was beautiful, 60 degrees and sunny, at the start. I finished with a consistent 7:30 mile, which is slow if you're a runner, but for me and all I've been through, it was nothing short of a miracle... and I didn't have to poo the entire race. That's almost as good as my mile time.

Post Script:

Yesterday's hard run clued me in to just how emotional I am about my journey with colitis. 

What do you mean the post-race food isn't SCD-friendly?

It was about eight o'clock in the morning, and I was running through the woods at a good clip listening to vintage Pearl Jam, when I began to visualize myself crossing the finish line at my first marathon (this coming December), something I never thought would be possible after my diagnosis. As the visualization became more and more vivid, I began to run faster, harder, and then I began to cry. I thought, I'm a mess, crying, nearly sprinting, listening to Pearl Jam. What non-teenager cries to Pearl Jam? At least I don't have to poop. 

But that was just it: I didn't have to poop. I was crying from joy that I didn't have to poop. I was crying from joy that I had energy to run through the woods, to play with my kids, and to actively engage in life. I was crying because I felt full of life, and I never thought I would have that feeling again.

I'm grateful for the SCD, and the changes it has affected in my life, and I would say to those thinking about it, to those who may feel the way I did in 2009, give the SCD a month of your time. If it changes your symptoms, maybe you'll be able to see it too--your marathon.

Now it's September, 27th 2010, and I'd erase that note from April 2009 if I could, but I need it as a reminder that someone read my journal.


Onward to Health.

The Curry Hurries

Today's update comes to you courtesy of my love for all things curry.

Last week, I wrote a post about fructose malabsorption (FM), and the possibility that, because of FM, my love of SCD-legal sweet treats may be complicating or slowing my recovery. This is the first update on my FM experiment since I started minding my fructose, last Thursday (9/16/10). You should know that, at this point in my healing journey with the SCD, my bowels have settled to a range of 1-3 BM/day, depending on what I eat. They are normally 5 or 6 on the Bristol Stool Scale. 

I'll outline recent events briefly below.

Morning, Day One: 

Do my usual morning stagger to the kitchen; lustfully look at the big bowl of green Granny Smith apples (I'll take three, thanks) on our kitchen table and wonder, What the hell am I going to put in my yogurt this morning? I listen to the Siren-song of the honey in our cabinet (Tie me to the mast!), and grab the yogurt from the fridge. Ah! Bananas! I add bananas to the yogurt, scramble eggs with cheddar. Surprisingly, the yogurt wasn't bad w/o honey, vanilla, and apple (my norm. I don't like plain yogurt--too tart). Grab my low-fructose lunch, and head out the door for work.

Summary gut-wellness for the day? Not too much difference. Maybe--maybe less gurgly throughout the day.

Morning, Day Two: 

Stagger to kitchen for my low-fructose breakfast. Less desire for honey, but the apples are still there. Won't someone eat those things? Grab my low-fructose lunch, and out the door for work. On my way to work, I had the constant feeling something was missing. Get to work. Ah, my (always, always at 6 am) morning BM! Where did it go? 10am. Ah, there you are. There was less gas, less gurgle with my morning BM; same story with my evening BM; no change in form, still semi-solid.

Summary Gut-wellness for day two? Noticeably less gurgle. Lots less gas. No change in form.

Summary Gut-wellness for days 3 & 4: Bowels very quiet. Very little gas, no gurgle. Only one BM, morning, both days. Hmm? Is victory looming?

That brings us to Monday—specifically Monday night. My wife, my primary caregiver, cooked a wonderful SCD-legal version of this Curried Carrot Soup from the Food Network. It was fantastic! The soup was so good, I ate my bowl, and both my children's helpings too. I wanted to go back for more, but if I did, there would be none left for lunch. Fiddle sticks. What else can I have to eat? How about some apples? D’oh!...

She substituted SCD yogurt instead of sour cream, SCD chicken stock we had in the freezer, and an SCD-legal curry powder that I had made some months ago… At least I thought she used the SCD curry mix. Why wouldn't she? We've been doing the diet for 15 months... D'oh! (again) Even old hands make mistakes. I normally tolerate home-made, SCD-friendly curry just fine, so long as it isn't too strong (and this was just right).

That night, I felt a great fire begin to grow in my belly. I could feel the entire length of my intestine begin to ball its fists and compose me a howler. So, like a good chronically ill person, I curled up in bed, ignored it, and went to sleep. The next morning, the curry paid me back for that avoidance. I call it the Curry Hurries. I went four times on Tuesday, and am still recovering today.

There are two morals to this story:

1. Be very, very careful not to let illegal foods slip into your SCD lifestyle. I'm living proof of the setbacks they can give you, even after over a year on the diet.
2. We'll have to wait until things settle down to resume reporting on the FM experiment. In the meantime, maybe I can have a few apples.

Onward to Health

Honey, You're No Longer My Honey

   Today is a follow-up to my last post-slash-rant about my frustrations with the SCD. My symptoms have seemed to plateau recently. Although I still consider myself 90-ish percent healed, I’m impatient, and seeing the light at the end of the tunnel makes me want to run there faster than my body will go.

   The conversation I outlined in my last post really happened, and is really still happening. For about 36 hours I ate only these SCD-legal, SCD-prepared foods:

• Chicken
• Eggs
• Cooked carrots
• Yogurt
• Beef
• Small amount of Swiss cheese (because I can’t stand plain beef)

   Before I start, I should point out that I stopped tracking, in detail, my daily food intake, and I stopped filling in my symptom charts about six months into the diet. After about six weeks of recording food and seeing no real changes for the worse in my symptoms, I got lazy. I know! I know! Practice what you preach; track your stuff and maybe figuring this out would be easier…see my posts on tracking diet and tracking symptoms. My dad used to say to me, “Do what I say, not what I do.” I’m a work in progress.

   The above food list is not exactly the beginning diet (pretty close), but it was all I could muster, and I did it for as long as I could stand it. See, I’ve had suspicions that certain SCD-legal foods have deleterious effects for me, but as of yet I haven’t been able to pinpoint what it could be.

   Let me give you an example. I love apples. If I were still eight years old, someone would tell me that if I ate any more apples I might turn into one. I have eaten cooked, peeled apples fairly regularly since about the 2^nd or 3^rd month of the diet. But what I really crave is the cool, crisp crunch of a REAL apple—none of this soft, mushy, tell-myself-it’s-just-as-yummy crap. So, I added them into my diet about four months ago with success (yea!). I limited myself to one per day. I noticed that on days I ate crisp, raw, juicy, gorgeous apples (peeled of course) my gut seemed happier…And then one day my gut wasn’t happy. To my knowledge nothing else had changed. I ate two apples—still not happy. I ate three apples. S**t.

   Such has been life now for about three months. I have had the same experience with other foods too, and I eat SCD-friendly fruit pretty freely. All the while I keep hearing my wife’s voice, “Maybe it’s not something you can figure out; maybe it’s not something you can control.” Control. Why did I ever allow her to know me so well?

   If I could have a nickname that described me, it would be control. However, since no one has yet given me that nickname, and since I’m not willing to hand my colon to fate just yet, onward I press, to figure out why my stools have loosened (more) over the past two months, why my gut seems to be as disgruntled as department of motor vehicles worker.

   I have to say, I didn’t know where to start until I read about fructose malabsorption from the guys at SCD Lifestyle. See their post here. The idea is that there is only so much fructose that a person can absorb in one go, and the rest is fermented by colonic bacteria or excreted. This fermentation might just cause some extra gas and soften the stool in a gut-normal person; however, in those of us with injured colons it spells trouble. Those sort of fun, fermentable foods are just what the SCD tries to avoid—it’s anathema to the SCD as a treatment for IBD.

   Ding! Now there’s an idea! So I did a little research and some consumption reflection.

   The one food that has been ubiquitous in my SCD adventure, my one constant companion, my counselor when others are eating chocolate—the one food that has greeted me in the morning, and tucked me in at night has been (wait for it…) HONEY.

   It turns out that the symptoms of fructose malabsorption (FM) are similar to what I’ve been feeling. It also turns out that there are dietary guidelines for people with FM, and that reducing fructose intake has demonstrated positive effects in people with IBD. Hmmm?

   Do you know which, of all the SCD-friendly foods, has the highest fructose content? You got it—HONEY.  Honey has a fructose content of 40.9g fructose/100g honey, while one serving of apple has only 5.9 g fructose/100g apple. I eat a lot of honey. See my post on handling cravings for a good example.

   It could be that as I got better and better, and as I ate more and more (in quantity and variety) fruit, that I crossed the threshold of absorbable fructose, how much my body could process, and now the leftover is feeding the bad bacteria in my colon. Maybe that's what has kept me from reaching the end of the tunnel. S**t again.

   So I’m going to try it. I’m going to cut out the honey for a week (to start), cut my fruit consumption to two pieces a day, and make sure that I eat only the FM recommended fruits and veggies. I’ll keep you posted.

   Below is my list of SCD-friendly, FM friendly foods to which I’ll stick, according to the FM guidelines. This list is not exhaustive, but is nuianced towards the fruits and veggies I like and eat regularly.

Unfavorable:

Artichokes

Asparagus

Onions

Apple (sad)

Pear

Green or honeydew melon

Watermelon

Raisins

HONEY (so sad)

Red Ripe Tomato

Favorable:

Apricots

Peaches (peeled)

Blueberries

Strawberries (caution b/c seeds)

Lemon

Lime

Oranges of all types

Ripe banana

Pineapple

Onward to Health.

From Walking the Ledge to Running a Marathon

What do you mean I have to share my feelings?

Last night I was chatting with my wife about the sheer and utter joy I experienced reading a new blog I found, Organically Autoimmune, a blog-journal by a woman with UC who decided to try the SCD for 365 days and write about it on the way. You know what she said to me? "You should share more on your blog."

Share...more?

"You like it so much when others openly share their experiences. You gripe every day about how people only write about their successes, how great natural treatments are, and how when you feel like s**t those things don't help at all. So, you should share more about your experiences." 

Share...more?

Okay, so in the interest of keeping my marriage solvent (deep breath), here goes: 

I wish I could go back and journal about my SCD journey, because there is so much to share. Maybe I'll go back through my symptom charts and talk to my wife (because she's so helpful--Share?--in directing the content of my blog). That will dredge up helpful content good stories for sure.

I've been on the SCD now since June of 2009, about 15 months, but I never did the math so for the past two months, I've been telling people I've been on the SCD for 18 months. The diet helped from the start (read my story). But it's been an up and down journey, and I resolve to write some about it on a regular basis, starting now.

Throughout my time on the diet, I've been through ups (Yea, I'm cured!) and downs (My life is hell. What did I eat? Why did I ever do this?). The inspiration for this post comes from a recent, my life is hell, moment in my newish SCD lifestyle.

I take probiotics along with the SCD as treatment. Recently, I got the bright idea to stop the probiotics. I needed to see if it was the diet or the bacteria that were helping me. 24 hours after I stopped ingesting glasses full of bugs twice a day, I got the normal die-off D--one extra time a day for about three days. OK. This is normal. Let's see what happens next. If only I could stay that rational. Now, a month into a probiotic-free life (I still eat SCD yogurt) my stools are still loose, and my gut groans and gurgles like a mistreated septic tank. Crap. Literally. And emotionally? Same thing: I'm gurgly.

To top it off, I just found out (don't ask me why I didn't know this before) that the OJ I have been drinking for the past 15 months, the kind I love with Calcium added, is illegal. Oh, and the applesauce I thought was legal? Also illegal. Oh, and the organic salmon I crave weekly? Also illegal. Where's my research assistant? He's fired!--Oh, wait. It's me.

So in a gurgly, anti-diarrheal fury, I announced to my wife that I was going to start all over. I had been on the SCD for 18 15 months, and it hadn't done a thing! (So was the thinking at the time.) That's right I was going to go back to the beginning and wait for Vicinni--back to a diet of chicken soup, eggs, farmer's cheese, meat, juice, and...well that's about it. My wife looked at me like she had just eaten grass. It took her almost half the day to talk me off the ledge. "Why do you have to be so reactionary?"

Reactionary? No! This is assertive. I'm going to conquer this thing, this damn disease--figure it out--by myself. I. Me. Me. I...I just don't want to feel sick again. I don't want to go back there. Don't make me go back. Don't. 

"Why do YOU have to figure it out? What if it's not something you can figure out? What if your body just needs some time?" Time. "Maybe you could just eliminate some of the suspect foods, and see if that makes you feel better." Okay. That seems reasonable.

Then I read this, from Breaking the Vicious Cycle:

“...Many cases of celiac disease, spastic colon, and diverticulitis appear to be cured by the end of a year. Other disorders such as Crohn’s disease and ulcerative colitis take much longer with a minimum time of two years on the diet. A rule of thumb is to stay on the diet at least one year after the last symptom has disappeared...” p. 70

And I remembered that Elaine's daughter was on the diet two years before her symptoms were gone. And I remembered the days when I nearly pooped my pants. I remembered the days when I didn't have the energy to walk a flight of stairs without rest. I remembered going to the bathroom 24 times a day. The point is I had to remember those things--they're not a part of my life now, and that's because of the SCD. 

So, there's one thing I keep coming back to: My last flare was uncontrollable--until I started the SCD. After a month, I was on my way towards a regular (pun intended) life. After 18, no 15 months on the SCD, while I'm not entirely normal yet (about 90% of the way there), I'm running a marathon this December. That says something.

Onward (through ups and downs) to Health

Eat your Broccoli!

I got this link from Paul Stocker at eatingscd.com.--Research suggesting that supplementing diets with fibers from broccoli and plantains (plantains are not SCD-legal, but broccoli is SCD-legal) might prevent relapse of Crohn’s disease

Turns out my mom was right. I should have eaten my broccoli. Darn.

Onward to health.

My Article in SCD Lifestyle

This week I did a feature, in conjunction with Steve Wright and Jordan Reasoner on their site, SCD Lifestyle.


Read the feature post here.


Jordan and Steve have put an interesting spin on the SCD--the SCD as a lifestyle. Before meeting them, I'd never thought of it that way, but it's true. For those of us with Crohn's and Colitis, the SCD can give us our lives back, but it's such a comprehensive change, and food is so ubiquitous in our lives that the SCD is better looked at as a lifestyle.


Thanks Jordan, Steve, for such a helpful paradigm shift. Check out their site, and read a free chapter from 
their book, SCD Lifestyle: Surviving to Thriving.


Onward to a Healthy (SCD) Lifestyle.

Diet and Vitamin Supplementation for IBD, Part 1

Note: Everything in this post and the rest of my series on supplements is synthesized from books and advice gleaned from my reading list.

Health guru’s, nutritionists, doctors, and, yes even my mother, suggest taking vitamin supplements. This is the beginning of a short series on vitamin supplementation. I’ll elaborate on why supplements are needed (even for healthy people) today, and why people with IBD should be especially vigilant in taking supplements.

Healthy Diet

Your body needs around 19 vitamins and minerals for optimum functioning. This is in addition to the appropriate amounts of fiber, fat, protein, and carbohydrate material. Some you need in relatively large quantities (like calcium), and others you only need in trace amounts (like Folic Acid, or Selenium).

The most common argument against supplementing your diet with vitamins is the healthy diet argument. If I just consume a balanced, healthy diet, then I won’t need supplements. Indeed, the argument is simple and generally true. If we consumed, daily, a wide enough variety of foods, and if we consumed those foods in the proper quantity, then we indeed wouldn’t need supplements. Unfortunately, nutritionists agree that the majority of people today (especially in the US and Europe) eat a calorie rich, nutrient poor diet. This means that people can get fat, but they can’t generally get fit (nutritionally) on the average, for example, American diet.

Why?

This is because we consume too many processed foods (the processing of food strips natural nutrients); because conventional farming practices (where most Americans get their food) strip the soil of many essential micro and macro nutrients, essential soil organisms, and natural compost material which in turn lessens the nutritional content of food (nutritional density of food 150 years ago ≠ nutritional density of food today), making it difficult to eat enough variety to get what we need from food alone; and because we just don’t, on average, eat a balanced diet. Americans especially, eat too many processed grains, and not enough whole vegetables, fruits, and legumes. We consume too much red meat, fat, and alcohol. We don’t eat enough fish. We don’t exercise enough. Get the picture?

What’s Unique about People with IBD? Why is it so important for them (us) to Supplement?

People (like me) with IBD are in a unique position where all of the above may be true for us, but at the same time our processing plant is only working at partial capacity. This makes it doubly important for those with IBD to eat as healthy a diet as possible and to supplement, because invariably some portion of what we eat will not be processed and absorbed. Let me elaborate.

For those with Crohn’s, inflammation in the small intestine, where the majority of fat, carbohydrate, and nutrient uptake takes place, can lead to deficiencies in B-vitamins, and the fat-soluble vitamins such as A, D, and E (and much more). Decreased appetite only worsens these deficiencies.

For those with Colitis, inflammation of the large intestine (whose function is to absorb electrolytes and water, produce vitamin K, and retain/store stool) can cause diarrhea and increase transit time in the gut. This diarrhea can lead to folic acid deficiencies (which increases your risk for cancer), vitamin K, calcium, potassium, and other electrolyte deficiencies. Vitamin K is essential for healing and rebuilding tissue. Calcium is essential for bone mineralization and nerve and muscle conduction, and electrolytes are in just about every body process you can think of (and many you can’t). Vitamins are essential for bone health, blood clotting, proper immune functioning, proper neural function, general energy levels, mental well-being (B-vitamins are an accepted treatment for mild depression), etc. Folks with IBD just can’t process or absorb these as well as a gut-normal person.

Medication can complicate your dietary needs. For example, corticosteroids, such as prednisone can increase your need for folate, vitamin B6, and ascorbic acid. They decrease calcium and phosphorus, and increase levels of zinc, potassium, phosphorous, calcium and vitamin C in your urine. Even simple aspirin increases the need for folic acid and vitamin C. Jini Patel Thompson has a short discussion of medications and nutritional needs in Listen to Your Gut. For a more through discussion see the Encyclopedia of Natural Medicine, by Murray and Pizzorno.

Okay, what do I do?

With rapid transit times and decreased absorption, it’s important to increase the quality of food you eat. In the beginning of my last flare-up, I avoided fruits and vegetables at all costs—they sprinted through me like a wild horse. Then I began to read and learn. I started the SCD and followed the diet’s instructions with fanatical flare. But the SCD allows fruits and vegetables, which I couldn’t eat right away, so I read some more (see my growing reading list). After much reading, observing other’s comments, and after experimenting on myself, here’s what I recommend. Ideally, you would do all of this within the parameters of the SCD.

·         Gradually increase your calorie consumption. If you’re having trouble processing food, then you’ll need to take in more than you need, because some portion of that is leaving undigested. I know, eating can make you feel worse, so be gentle on yourself, but not eating…well we all know where that goes.

·         Steam your vegetables. It’s not the veggies themselves your gut can’t take; it’s the complex fiber matrix. Steaming softens the fiber matrix and makes it easier for your damaged gut to process them. This is the method I used for months to get my veggies. Yes you do lose some of the phytonutrients, but you retain most of the vitamins. If you’re really concerned about the nutrient loss from steaming, you can drink the leftover water. Yum!

·         Cook your fruits. Bake or steam fruits high in soluable fiber, like pears or apples. Add a little cinnamon and honey and you have a winner.

·         Peel your fruits, and avoid fruit with lots of insoluable fiber. Again, your system can’t handle the rather rough insoluable fiber skin, so remove it or don’t eat it. Examples of fruit to peel are apples, pears, peaches, plums, etc. Examples of fruits to avoid (or to try cautiously until you can handle them) are, oranges, grapefruit, cherries, grapes, berries, and anything else with a tough outer skin.

·         Avoid seeds. Just do it. You’ll thank me—strawberries, blackberries, raspberries, kiwi, figs, goji berries, etc.

·         Supplement with vitamins. I’ll go over this in more detail in future posts, but for now, a good multi-vitamin (2x/day), a good B-complex (1-2x/d), and a calcium supplement (as calcium citrate) will do for a start.

Onward to Health.

Breaking the SCD

A word of warning: If you're just starting the SCD, if you're struggling with the lifestyle change, or if you're still fighting cravings--DO. NOT. READ. THIS. POST.

I've been on the SCD for about 15 months and I've never, ever, never, never, knowingly violated it. During my time on the diet, I've had some trouble teasing out which SCD-legal foods bother me, and along the way I've had some very mild symptomatic episodes that I just can't explain; I've reconciled myself with the presence of uncertainty in my treatment(s).

Along the SCD road, I've discovered some foods that don't agree with me. I've been to restaurants and eaten SCD-friendly meals that have upset my gut, probably due to some hidden non-SCD friendly ingredient(s). But I've never knowingly violated the diet--until last night when I indulged myself in a full can of Coke and a Tootsie Roll. Why in the...would I jeopardize 15 months of recovery for something as trivial as a Coke? The why doesn't matter, really. It's the what happened that's more interesting.

Gut-normal folks might say to me, So what? That's nothing. People often eat a full order of magnitude more sugar than that in a day. 

Not me. I consumed, in that single can of Coke and one little piece of candy--in that one glorious, gluttonous, and reckless moment--more processed sugar and caffeine than I've ingested in over a year. And you know what it did to my body?

Nothing.

I woke up this morning and had a normal (for me) movement.

No change whatever.

Like I said, I've reconciled myself with the presence of uncertainty. Even so, I still don't plan on breaking (or dropping) the SCD again. The SCD proved effective for me, and that's unquestionable.

Bottom Line: The SCD is an effective treatment for oodles of people, including me. IBD is enigmatic and can surprise you. This was a pleasant surprise, not to suffer from my moment of weakness. I don't plan on testing the waters again for a long time.

Onward (through uncertainty) to Health.

More from AP and JP: Fatigue, Dehydration, and more.

   Before I start this post, it's important to note that I handle 90% of my symptoms with the Specific Carbohydrate Diet. It took us (both my wife AND me) a long time to accept the lifestyle changes that I needed to make. When you're first diagnosed, or during your first real flare, you're getting a lot thrown at you. I felt like someone was taking away from me everything I enjoyed. I thought, literally, that the rest of my life would be hell.

   Then just as I was getting a handle on things, I started the SCD and it happened again: I felt like the small things I enjoyed, the simple things, dinner with friends, pumpkin pie, good beer, homemade bread were being stolen from me--after more than three decades of enjoying them, it was hard to hear someone suggest that many of those things I enjoyed (like good beer) were the very things that were keeping me sick.

   For a long time, neither of us wanted to hear it. So, when I write, just know it's taken me almost two years to come to terms with my new lifestyle. Every improvement that the SCD, however, has given me has made the transition easier--a light at the end of the tunnel.

   Here's the second in a series of posts from my conversations with AP, about her husband, JP who has recently been diagnosed with Crohn's, but who has been sick for some time. See my first post from AP here.

I've re-arranged the conversation some to make it flow by topic...

My husband and I were just discussing his diet last night. His diet has always been junk. He drinks soda all day long, caffeine, fast food, processed food and junk food. That is it. Aside from the occasional salad he has along with a steak and baked potato meal, he rarely eats any vegetables and he never eats fruit.

   In the beginning of the SCD, my wife and I talked about my diet so much it made us sick. We even had to plan NOT to talk about the diet--especially when we went to see friends. Constant communication with your family, significant other, or housemates (whomever you eat with most often) about the food you're eating and the symptoms you're having (don't be afraid to share with those close to you) is essential.

   JP's diet is horrible, but not all that atypical in the U.S. (though I like to think that's changing...slowly). The chronic inflammation associated with IBD decreases the absorption of essential vitamins and minerals. Decreased transit time in the gut during flare-up further complicates the problem and leaves us in calorie debt too. Even if JP were not sick, his health would suffer from his diet.

In his defense he has always had an aversion to eating. It makes him really tired, and not much ever "sounds good" to him. So he eats whatever seems the most appealing out of the bad. Which is unfortunately never something healthy.

This is not uncommon for people with IBD. We know that eating (especially during a flare-up) increases our symptoms, so we often don't, or don't want to eat--especially when in public or traveling. I also wonder if chronic, widespread inflammation in Crohn's, specifically, could lead to lack of appetite. Certainly chronic illness wears on us mentally which can affect mood, energy levels, and appetite.

He doesn't drink water either. I was secretly hopeful when he got so sick that maybe he would be forced to change some of his habits...

Even if food makes you sick, it is essential to get enough water. This is even more important during flare-ups. A normal person should have about 2L of water per day. A person with diarrhea could need twice that just to break even. Whatever you need to do to get more water, do it. If you don't like water (like JP), then spruce it up! You could do 1 part apple juice (or any juice for that matter) to 9 parts water, or dilute sports drink (not SCD friendly!) with 5 parts water (5:1). I use sparkling water and SCD friendly apple juice, or a dilution of coconut water and tap water (see below).

Unfortunately the doctor seems to basically back him up that he should do nothing to change his diet and rely completely on the medication. The doctor has put him on Asacol and he is beginning to respond. He's having fewer bowel problems but is just as fatigued as always, and I don't think the joint pain has gone yet...

It's interesting to me that conventional GI's advocate that diet has nothing to do with the signs or symptoms of IBD, a gastrointestinal disease. I don't think this is the norm. Most GI's know, for example, that spicy food irritates and exacerbates the symptoms of people with active (read: flaring) IBD. If certain foods can exacerbate symptoms, wouldn't it make sense that certain other foods (or the proper mix thereof) could help to relieve symptoms? Hmmm...

AP later mentioned that JP experiences extreme fatigue. This is common in IBD also. I remember days when I couldn't climb a flight of stairs (I'm a competitive athlete, remember). While there are myriad causes to fatigue in IBD, the most likely (and the ones we have the most control over) are:

         a. Dehydration. Solution, drink water--LOTS of water. You may not want to because either you don't like water (some folks don't) or because water (secretly) makes your symptoms feel worse. You HAVE to drink water. You can use juice to liven it up if you want, but dilute the juice with lots of water. I use an approximate 10:1 dilution with juice, or a 4:1 dilution with coconut water. Coconut water contains four of the 5 major electrolytes and has more potassium per serving than a banana. It is bar none the best natural electrolyte drink out there--and it's far better than conventional sports drinks which are loaded with cheap sugar (which we don't need). One caution: Coconut water in large quantities can act as a laxative in people with IBD, so use it in moderation.

         b. Vitamin and Electrolyte Deficiency. There is a small host of vitamins that either don't get absorbed (like B vitamins in Crohn's), or don't get internally produced (like Vitamin K, in Colitis) when there is so much inflammation. This will be exaggerated with  poor diet. Solution: Take a good multi-vitamin plus Calcium (in the form of Calcium Citrate, it's more absorbable). Freeda makes a good SCD-friendly Multi and B-complex. I take both.

         c. Calorie Debt. When we're sick with that much D, transit time of food is just too fast to be fully absorbed--even in a healthy person. This is a large reason people with flare-ups lose weight so fast.

         d. Anemia. Serious IBD sufferers experience bleeding. This constant leakage can make you anemic. Anemia is a real concern and can cause varying levels of fatigue depending on the severity. See my post on anemia.

Onward to Health

Probiotic Retention Enema

Caution: When I first tried probiotics, 9 months ago, a small amount (10% of a therapeutic dose) caused me extreme D, fever, abdominal pain, chills, and uncontrollable shaking. TAKE IT SLOWLY. I suggest not trying probiotics until at least three months after you've started the SCD. I slowly increased my dosage over a 6 month period, 1/4 tsp every two weeks, sometimes less. It's very likely that probiotic therapy will work for you, but you have to introduce them slowly.

I've had the book Listen to your Gut, for 11 months now, and am slowly trying Jini Patel Thompson's suggestions (the one's that are SCD or mostly friendly) along with the SCD. Her book is reviewed on my reading list.

For the last two weeks I have been trying her Wild Oregano Protocol. Wild Oregano is a natural antibiotic and anti-fungal. Her protocol is a mix of natural antibiotic and probiotic therapies to rid your system of over infestations of yeast, and to shift the bacterial ecology of your gut.

Yesterday, I tried her probiotic retention enema, after a particularly bad gut day (I must have eaten something that really irritated my system). I took the enema at 1:30p after a BM (so my system was cleared out), but didn't bother with the warm water enemas she suggests (given the amount of liquid D I had, my system was pretty clean already) as they most likely just cleanse the lower colon. I had no trouble retaining the mixture for the full 2 hours, but experienced one bout of liquid D that evening (some Herxhimer reaction, no doubt), and my mood darkened significantly. I became tired and irritable.

This morning I woke up and didn't have the urge to go. That was enjoyable. My mood today has been light and fun. This afternoon, 24 hours after the enema, I had my first completely normal, formed, slow and pleasurable poo in 19 months*. --Thanks Jini. Read another probiotic retention enema success story from the Crohn's Boy blog here.

The probiotics I take from Natren are not SCD friendly, per se. My theory is that the probiotic bacteria will use the non-SCD friendly medium you ingest as food. They should consume it all, so that it won't interfere with the SCD. The Healing Crow (great SCD learning on that site) confirmed this for me with an email from Elaine Gottschall, herself--read it here. That said, the benefits of proven, probiotic therapy in conjunction with the SCD likely outweigh the small amount of non-SCD legal substance in the growing medium.

*The SCD has made a dramatic improvement in my health. It has taken me down from 8-24 trips to the bathroom to 1-2 trips per day. I've regained my energy and stamina, but my system is still, after almost a year on the SCD, not totally normal. My stools are loose, and my colon is still sensitive, indicating that I still have some inflammation. Some people, like me, will need to combine therapies with the SCD to reach full healing.

Onward to Health.

Forming a Partnership: How to Talk (and Work) With Your Doctor

***Thanks for switching over your feeds and subscriptions. I gave it a few days without posts to give folks time to switch. Now on to more topics...***

My wife often asks me to come to the doctor with her, ostensibly, because I ask good questions; she forgets or is often too intimidated to ask the doctor all of her questions. In conversation last week she suggested that my ability to form partnerships with doctors might be a good subject for a post--Thus, the title/subject of this post.

There are oodles of articles out there about "How to talk with your Doctor". I find most of them too fluffy, lacking substance. Reading them is like eating whipped cream for dinner, it might taste good going down, but there's no nutrition there. Of the articles I found, here are the two I found most helpful.

New York Times Article, republished by the Huffington Post:
http://www.huffingtonpost.com/2009/06/09/how-to-talk-to-your-docto_n_213075.html

And a useful little piece from knol.
http://knol.google.com/k/how-to-talk-to-your-doctor#

That said, here are my suggestions on forming a partnership with your doctor, born from experience. I go first to the conceptual and then to the practical. Note that all of these suggestions require frequent, open, honest communication with your health care team.

1. Envision your health care as a team environment. You are the team lead, the coach. You are building a team of colleagues around you who can help care for you, who will work with you (not ON you) to manage or heal your condition. A true partnership is built on mutual respect and cooperation. You should expect this from your doctor, and he/she should be able to expect it from you. This is a change of mindset for lots of people. Growing up, my mindset was that you do what the doctor tells you; i.e., I went to be told what to do. The team mindset for digestive conditions is, I think, a much more beneficial outlook.

2. When you're first searching for a GI, view the first appointment as an interview. Make sure the two of you are a fit. It can be a bit like dating... Is the doctor respectful? Does he/she take time with you? What are his/her credentials? Why did he/she get into medicine? Does he/she listen to you? Is he/she open to naturopathic treatments? etc.

3. Research your doctor. No, I'm not suggesting you stalk him/her, but some base knowledge will help you choose someone you are likely to get along with. I look for three things:
              a. Reputable Education-- Most insurance websites will list a physician's education, and board certifications (which in some specialties are not required...but can speak highly)
              b. Kind, helpful staff-- It may seem shallow, but when looking for a doctor, if the staff on the phone aren't kind, if they won't endure 15-30 seconds of small talk ("Hey, Cheryll! How are you?...), I hang up and keep looking. Congeniality of staff speaks volumes (in my mind) about how a practice is run. The good or the bad of this will eventually trickle down to you, the patient-partner.
              c. Personality-- This gets at what I stated above. You want a doctor who is willing to work WITH you and not ON you. Why? With digestive conditions you are your primary care provider. The doctor can guide you, advise you, prescribe for you, but in the end, if you don't take ownership of your treatment, whatever it is, it will fail. So I look for a doctor who doesn't seem rushed (even though I recognize that all doctors are constrained for time--that's just the way it is today.). I make sure he/she is willing to answer my questions, looks me in the eye, hears my suggestions, exhibits flexibility, is honest with me all of the time, and treats me with collegial respect (I don't like doctors, I've experienced them, that withhold or dumb down information because they either don't have time, or think I won't understand. I say, "Try me.")

Now the practical:

4. Engage fully in your care, and build credibility with your doctor. Whether you are seeing a naturopathic or allopathic doctor, he/she should be able to expect from you that you will participate willingly and faithfully in your treatment. Here's how I build credibility with my GI:
           a. Become an expert-- Read. Read. Read (my growing book list here). Read as much as you can on anything and everything that pertains to your condition. Being practical and well researched; being an informed patient, built for me credibility with my GI that I otherwise wouldn't, couldn't have gained any other way. It allowed me to ask appropriate, probing questions about the treatments he was suggesting (I knew the side effects, and the pros and cons of Imuran, for example), and you know what? When he was stymied, when none of the allopathic treatments were working, I was able to say, "What about probiotics? I read a study from XYZ journal that demonstrated positive results..." He paused, and said, "That's a good idea. Lets try it." I couldn't have done that if I had not educated myself.
          b. Be disciplined and responsible in your care-- Demonstrate that you can stick to a treatment, and that you can adjust your lifestyle to maximize your treatment. For example, when I first was diagnosed with Colitis, my doctor told me to stay away from spicy foods. What did I do? A week later I ate mounds (I'm a hungry athlete) of spicy Pad Thai, and suffered. I lost credibility in the beginning because of incidents like that.

5. When you come for a visit, know your agenda and stick to it. You need to be as respectful of a doctor's time (they're busier these days than ever before) as they do of yours (you need their help). With that in mind here's what I do for EVERY appointment. Yes, it takes time, but I think it's worth it as it has helped increase my quality of life (by finding treatments that work), and help set expectations and build rapport with my doctor.
            a. Prepare for the meeting. Remember, you're a team. If the coach comes to the game unprepared, how can the team be expected to play well?
   I gather my symptom tracking, diet, and treatment information and write it up in a concise, 3 minute summary that I can deliver to him orally, and on paper (for my file). My wife thinks this is a lot of work, but it's gone a long way at convincing my allopathic GI of the efficacy of the naturopathic treatments I've been doing. (I think this also puts him more at ease, knowing I'm responsible, systematic, and well researched) I've even geeked out and showed him statistics. See my posts on tracking your diet, and tracking your symptoms.
   I write down my questions and bring them to the appointment. Again, this shows your GI or naturopath that you are engaged in your treatment. That said, you want a doctor who will answer your questions to your satisfaction. This is one of his/her critical roles in your care. Make sure they do this. If they are continually unwilling to do this (give them more than one shot), then find a new doctor (and let them know why you're leaving).

6. Finally, I ask my doctor small talk questions. I don't waste his time, but 1 or 2 questions that don't involve my gut, but show mutual understanding and respect go a long way towards building rapport.

Onward to Health.

The Value of Community, Advice in the First Weeks after Diagnosis

I've been writing back and forth with a woman (AP) whose husband (JP) was recently diagnosed with Crohn's. Our conversation has brought up so many helpful points that I asked her if I could share them on my blog. She graciously consented. So the next few posts will use points from our emails back and forth as food for discussion here. I've removed any information I thought may identify her or her husband.

I have entitled these posts, 'The Value of Community' because I think they illustrate how important it is to surround yourself with people who know what you are going through, and care enough to help.--Community matters.

Here's how the conversation started:
My husband has been "sickly" for about 10 years or more. [snip] (He experiences) fatigue, digestive issues, reaction to eating. (Sound familiar?) More recently his symptoms have increased to the point where he is no longer functioning fully. He has joint pain, mouth ulcers, anemia, folate deficiency, constant diarrhea and gas problems, fever/chills and extreme fatigue. [snip] They found ulcers on his colon. They said it was most likely ulcerative colitis or Crohn's but would need to get back the biopsies and blood work before making a diagnosis. The GI's nurse called yesterday and prescribed Asacol...

AP asked if I might be able to provide some guidance since they were new to the condition, the treatments, etc.

A bit of context first: My wife and I were alone when symptoms like JP's first hit me. We were in a new town, new job, renting for the first time in 5 years--we had only one couple nearby we called friend, and they lived 45-60 min away, depending on traffic. The symptoms of Crohn's and Colitis can be isolating, even when you have a good community of friends and family, so for us to be alone made it even more isolating. That's why I enjoyed so much the opportunity to talk with AP--I got a chance to be the community for them that I so wanted when I was that sick.

My initial response to her is below. In the coming weeks, we will address the substantial issues that have come up in our conversations.

...Your husband's story sounds familiar. I've gone through a lot of what he has (and will), though if he has mouth ulcers, it's most likely Crohn's (mine is Colitis--same inflammation, but Crohn's can afect any part of the digestive system whereas Colitis is confined to the large intestine), but you should have him go through the battery of tests to make sure both you and your Dr know what it is. I went through Asocol, Balsalazide, Prednisone, Imuran-- none of them worked for me.

Note: I've seen some out there advocating that you not go to the doctor for whatever reason (there are many out there). Doing that can put your life at an awful risk. I advocate natural healing from Crohn's and Colitis, not recklessness.


As H may have mentioned, I have found a natural way of controlling my condition. The book I recommend on my blog (that explains what worked for me) is Breaking the Vicious Cycle, by Elaine Gottschall. It's worth every penny. [snip]


But first, here's what you can likely expect from traditional medicine...


The usual Allopathic (read: traditional lab-based medicine) treatment course will be this, in order of least to most intrusive (though some of the drugs differ for Crohn's):
1. mesalamine (Asacol, et al.)
2. maybe balsalazide (Colazol)
3. Prednisone (corticosteroid, for getting inflammation under control if #1 and #2 don't work)
4. Imuran (imunosuppressant, the same medicine you would have if you had an organ transplant, to prevent rejection)
5. Remicade (there are others here, too...)


It's really a shotgun approach, and no patient responds the same to any of the given treatments. Further, Asacol (for example) may work for one flare up (activation/aggravation period of symptoms), and not for the next in the same patient. Ugh! So with the above treatments, there is always risk that they might work or they might not, even if they've worked in the past. Be aware of this, and make sure you are clear on the side effects of each medication before he takes it. The doctor should be willing to sit with you and explain the benefits and risks of each. I recommend using the manufacturer's literature as a guide for this discussion--literally have it in front of you when you talk with your Dr. about each of the drugs he/she suggests.


While on any of these drugs, the doctor will want to draw blood frequently to monitor different things depending on which medicine he's on (inflammation, liver function, blood cell counts). You should ask the Dr. about these tests...in fact, you should feel free to ask your Dr. any question you have and don't let him/her leave until you are utterly satisfied with the answer--treatment of this condition takes teamwork, and the Dr. should work with you and your husband, not ON your husband, you know?

Note: I emboldened the sentence above and the one below to illustrate a point. Both Crohn's and Colitis treatment takes teamwork. It's not like dentistry, where a Doctor can see your cavity, ask you to open and say 'Ah!' while he or she fixes it. Successful treatment requires teamwork. You need to be an equal (in standing, even if not in knowledge) partner in your treatment. If your doctor doesn't entertain your questions, empower your ideas, and walk along side you in your illness, then you need to talk with him/her. If, after that talk they still won't treat you as a partner, then find another doctor.

 I can get you started learning about the condition. (Notice I try not to use the word 'disease'. First, it's unclear that UC or Crohn's is a disease, per se. And Second, these labels are not good for morale, long term.) Becoming an 'expert' will help both you and your husband in the course of his treatment...