Anger Burger

Anyone unfortunate enough to have a disease or ailment soon discovers what a wretched rabbit hole the internet truly is.  And while I am not a doctor, I am a reasonably observant woman who has lived with Crohn’s for over over 15 years, and I feel I have legitimate advice to offer.

I expect this page will change over time, and when significant corrections have been made I will strike out the previous information (like this) for 3 months, after which the corrections will be sent to the bottom of the page as a footnote.

Some Facts About Crohn’s Disease the Internet Might Fail to Adequately Explain

• Regardless of claims that Crohn’s is a “disease of diet” and other such phraseology, never forget that Crohn’s is an immune disease.  As a casualty of war, the digestive system is then borked and cannot process food, not vice versa. It is an important distinction to make, because it frees you from the unfair expectation that if you could “just find the right diet” then you could stop all this illness nonsense.  If it helps when explaining this to people, point out that digestive problems are merely the most common manifestation of the immune disease, but that arthritis, skin lesions and eye problems occur as well.

There is good business in writing diet books for people with Crohn’s, IBS, and ulcerative colitis, and very few of them address the point that diet can be putting the cart before the horse.  (It is also worth noting that these books almost always group Crohn’s and IBS together even though they are not interchangeable; IBS is a bulk term for any number of digestive disorders, much in that way that the term “allergies” can imply many different causes and symptoms).  I flip through these books regularly and find almost every time that they are simply low-sugar, low-fat recipes.  To make things more complicated, low-fat and low-sugar diets seem healthy, right?  Perhaps not, for a Crohn’s sufferer; the inability to maintain weight is often a real and life-threatening issue, neccessitating regular infusions of peanut-butter milkshakes and other high-fat foods that seem counter-intuitive to “healthy” eating.

In apparent contradiction, it is important to know that by managing your diet you can minimize your disease.  It is almost exactly like having diabetes: no amount if diet can “cure” your diabetes, but a careful, thoughtful diet can make outside treatment only rarely needed.  The problem with Crohn’s is that no one diet is going to work for most people, making all those diet books a crapshoot (ha! totally unintentional pun).  Conveniently, this brings me to my next point.

• Understand that Crohn’s disease is different for every single sufferer.  I have met and made friends with many a Crohnie over the years, and each of us has had significantly different symptoms.  My primary symptoms are, in descending order of intensity:

• Abdominal pain
• Frequent and urgent need to empty bowels
• Fatigue

To balance this, I had a Crohnie whose primary symptoms were:

• Malnutrition
• Weight loss
• Fatigue
• (the above three are often lumped together into the term “failure to thrive”)

Our representation of the symptom spectrum fascinated us.  He had no pain and could eat fresh and raw fruits and vegetables as he pleased — in fact, grains are what gave him trouble, leaving him unable to eat bread.  I, on the other hand, primarily experience pain, cannot eat raw fruits and vegetables and only some cooked ones, but can eat bread and grains (provided they aren’t too fibrous, like steel cut oats).  He struggled to gain a pound and I struggled to lose one.  We’d sit across from each other over lunches, laughing at our predicament: I often with a sandwich he coveted, and he often with a lush salad I coveted.

• Try alternate forms of treatment, but remember to be a scientist about it. If you have been diagnosed with Crohn’s you might have already gone through an elimination diet, which is the paring back of your entire intake to a few things that you know you can tolerate (often this is something like rice cakes, mashed potatoes without dairy or hot rice cereal) and then trying foods, one at a time and over the course of weeks, to see if they cause more harm than good.

The most important part of your elimination diet is to consult your gastroenterologist rather than just Googling it.  Elimination diets as discussed on the internet are usually not intended for Crohn’s sufferers and advise the ingestion of foods that may not be safe.  Those elimination diets are the basis for identifying allergies, not for identifying what causes your own digestive system to struggle.  Your elimination diet will take a little more thought: what foods never seem to bother you?  Start from there.  And most importantly, remember to include adequate nutrition, such as in the form of a nutrient drink like Ensure.  Unless Ensure doesn’t work for you. my coconut-milk based rice protein drink.  You see how tricky this can get?  But take heart: you will find the way.

I found a small group of foods that I have since termed Back to Zero.  Whenever I’m feeling like my illness is gathering strength I stop everything but my Back to Zero foods (for me this is pasta with no tomato sauce, cheese, bread, peanut butter, miso, black tea, rice, rice cereal, rice cakes, potato, soda crackers, and just about any kind of fish – but I’m not you!) and wait it out.

Use this same high school experiment psychology on the use of naturopathic treatments.  While on your Back to Zero, try one treatment at a time starting at the smallest dose, keep a diary of when and how much, and work from there.  It can seem daunting, but if you’re a mental case like myself it starts to seem kind of fun, like a chemistry set.

• Know when to veto someone else’s informed opinion. I was once advised by a well-respected ex-pharmacist and practicing naturopath to start on a compound called Roberts Formula (you can Google it, there are dozens of producers of it).  Within 24 hours I was feeling worse, and 48 hours later I was having a borderline flare-up.  I stopped everything, went Back to Zero, waited a week and tried again.  The same thing happened.  I tried everything a third time, this time waiting a whole month before starting Roberts Formula again.  And guess what?  It fucked my shit up hard.  I thought I was going to have to be hospitalized.  And the naturopath?  Told me it was something else in my diet and that Roberts Formula had “healed” every other patient he’d had.

I was young at the time, 19, and feeling pretty lost about having Crohn’s, but I knew one thing for certain: Roberts Formula was poison to me, which meant that Mr. Naturopath was wrong.  The worst part was not at all that he was wrong, but that he refused to allow for something as simple as a single variation.

In recent years there has been a lot of hoo-ha about L-glutamine, an amino acid favored by bodybuilders.  It is also an amino acid crucial in the growth of intestinal tissue, which is why for many years doctors have proscribed it for patients recovering from abdominal surgery and radiation damage.  This led to the belief that regular supplements of it would help people with chronic bowel conditions.  Then, in 2000 a study result was released that showed that people with Crohn’s disease did worse on L-glutamine and websites that previously recommended it now vehemently advised against it.  Here’s the interesting part: careful reading of the study shows that the subjects were taking megadoses of L-glutamine, amounts far and above what could be considered a supplemental dose.

With this in mind in mid-2008 I began taking a single 500 mg. pill of L-glutamine a day, a small amount compared to the whole grams used in the study.  It could easily be coincidence, but as of right now — even though my symptoms of pain and diarrhea remain — my colon is the healthiest it has been in the last 15 years.  My gastroenterologist has photos to prove it.

• The internet is a fickle bitch. It’s true and you know it.  It can be so, so helpful and yet so dangerous.  And I’m not just talking about the All Roads Lead To Madness of self-diagnosis, I’m talking about support groups.

This is purely personal opinion and I of course am pleased if you find solace in them, but for me?  Support groups are toxic.  There is something about the intense focus and concentrating feedback of them that makes it all too much, that crowds out other parts of my personality.  I can’t handle it.  I suppose on a very obvious level it draws too much attention to the idea that I am sick, a fact that I spend most days trying to ignore.  There is very little positive outlook in these places — an admittedly funny thing for me, a self-proclaimed grumpus, to be writing, but hear me out — it just isn’t human nature to want to register your wellbeing online.

Also, as I already noted when I talked about L-glutamine, people tend to read things and then declare themselves authorities on the subject.  Many groups I dropped in to read about L-glutamine made statements about the danger of the amino acid that sounded like fact.  They would even emotionally and aggressively defend these points.  However, when I read the actual study for myself I came to an entirely different conclusion — very high doses of L-glutamine are not even classified as ‘dangerous’ but as inconclusive (some people did well, most didn’t change and a few did badly), but no study has been done on low doses and in fact, anecdotal evidence points towards positive results on low doses.  If I had listened to the internet’s loudest voices I would never have tried a supplement that has been favorable for me. And again, just to be contrary…

• Try to come to terms with the idea that no one will understand what you’re going through.  I don’t say this because no one can understand, but because I have found it just makes things easier.   Many days it feels like the hardest part of having this disease is having an “invisible illness,” where my disease’s only symptom is a well-developed whininess.  Even with explanations it never seems worth all the fuss; my problem is that I need to poop a lot?  So the biggest danger is embarrassment?  And the gravity of the phrase “I don’t feel well” is better suited to mild headcolds than to a crippling autoimmune disfunction, but there it is.  Some days, that’s all I have to offer: I don’t feel well.  For days, weeks at a stretch.  Some days I realize only just before bed that I’ve been rigid with pain all day.  You get used to it.  It becomes a part of your routine.  And I honestly believe it is better this way, if you can just have a few close people that understand what you’re going through, because everyone else — and I assure you this to be true — is going to be a judgemental ass about it.  After years of different methods of “outness” about my disease, I find that emotionless or even humorous clinical facts really get the job done with co-workers, party aquantances and distant cousins; don’t clutter up your whole world with the infuriating injustice of it all or soon everywhere you look you’ll see this pathetic creature reflected back in everyone’s faces.  Dramatic!  But true.

I want to clarify that I am in no way advising you to “suck it up”.  What I am instead doing is advising you to adopt a psychological boundary around yourself, inside which only people close to you have access to your day-to-day trials.  I respect your pain.  Which is why I suggest crafting a protective bubble around yourself.

• Have regular colonoscopies. We Americans put off our healthcare primarily because we can’t afford it, but almost equally because we don’t really think we’re going to die.  It is slowly, one generation at a time, being pounded into our heads to check for lumps, to get smears, to have the cavities filled.  We do it reluctantly, but we do it because each of these things can reveal a potentially fatal problem that is totally survivable if caught early.  Another of these that we don’t actually check for is colon cancer.

People with Crohn’s are many times more likely to develop bowel cancer but even we don’t want to get checked because very few of us really want to have a camera shoved up our asses, drugged or otherwise.  The worse part is far and away the prep for it, the drinking a gallon of PEG and then having tragi-comedy explosive diarrhea for a few hours.  But, the next day you sit around eating toast and pudding and watching TV and life is okay.

Remember that friend I mentioned that had opposite symptoms?  Mark, for whatever reason, didn’t get checked regularly, which is in part why he died at age 32 of colon cancer (I say “in part” because I don’t honestly know – I never asked if it was the kind of cancer that early diagnosis matters, it’s just not “So, you’re dying,” conversation material).  Mark, I hope you can forgive me for using you as an example like this, but more than that I hope you can forgive me for thinking about you only when I think about Crohn’s disease.  It’s unfair to both of us that I remember each conversation we had about our illness but some days I have to struggle to remember how to spell your last name.  I’ll do my best to drudge up some real memories.  Also, it feels weird dropping a sandwich on the ground for “my Crohnies”.

There was the beautiful tattoo Bryan gave you and the night you got it, and how you totally had an allergic reaction to the red ink like some kind of living urban legend.  I remember when Deb rented a room at the Phoenix Hotel so we could get wasted and then go swimming, but I forgot my bathing suit (like everyone else) and chickened out when everyone stripped down to their underpants.  I regret not staying longer than night, but at least I got to see you in nothing but a hat and a pair of black boxer shorts (!).  I’m still grossed out by you only drinking honey mead and I kind of don’t believe you when you said it was the only alcohol your system could tolerate.  I think about that night we talked about switching bodies, and I confessed that I’d like to have a penis if only for a night, and you confessed you’d like a vagina, and then we convinced each other that it was natural to feel that way.

I miss you, which means I can’t imagine what your closest friends and family feel.  It makes me nauseated.  How’s that for happy memories?  Ha!