But quitting the probiotics weren’t an option for me; they made me better; they, along with the SCD were my plan to stay off drugs. I could see that even in the short week or ten days I’d been taking them that they were effective for me. I was stuck—there was no way I was going back to Imuran. It made me feel terrible. After the hives disappeared, I tried increasing the probiotic dosage again with monumental slowness; I tried different brands; I tried just yogurt, both cow and goat; I tried everything in every combination I could imagine, but the itching remained. I wanted to filet my skin off. Since the itching was worse at night, I’d often wake up looking like I tried to do just that. I was tired. I was embarrassed to show my legs or arms in public. And I was nearly driven mad on several occasions from what I can only call itchiness ‘flare ups.’

In 2009, I thought I had a simple cause and effect: eat probiotics, get itchy for 3-6 weeks. However, over time, I found that it wasn’t that simple. One or two brands of probiotics helped my colitis, but which didn’t make me itch. I could go weeks on these probiotics and not itch, then for no apparent reason, I would begin itching furiously—curious and confusing. I began to look more deeply into it, using my journal and attempting (I’m human too) a disciplined addition and subtraction of foods and treatments. As I was investigating the source of the itching, I found several things which seem to set me off (mind you, it’s taken me over two years to figure this out—it was that confusing for me). None of this is yet certain, but only my best guess. I’m currently consulting with an ND to get to the root cause (which is related to inflammation and leaky gut, but I’d like to get more specific answers).

If you’ve dealt with this kind of itching, please share your experience in the comments below.

What I Know About Me and My Itching:

This symptom has been the most frustrating, the most maddening, and the most confusing yet in my journey with IBD. The itching kept me up at night, my legs, arms, and/or hands flaring. I went sometimes for six weeks with 4-5 hours of fitful sleep each night. I got to the point where a metal hairbrush or cold wet rags (or both, hairbrush followed by wet rags) were the only humane ways to quell the itching. Antihistamines did practically nothing. My hands would often cramp from scratching. I’ve had bouts with hives, eczema (on the palms and back of my hands), and never had more than a week or ten days break from the itching—until now. (We’ll get there, I promise.)

Best I can tell, the probiotics (I still react to most) were a tipping point for my body. Since then, I’ve found a brand of probiotics (Custom Probiotics, 11-strain mix) which doesn’t make me itch, and is very effective at treating my gut symptoms. That said, I’ve culled out several other things that flare up my itching. In order of their power for creating a reaction, they are:

• Fermented foods, especially cow dairy (cheese and yogurt)
• Pasteurized cow diary (including the love of my life—butter)
• Sprouted anything
• Really high doses of either Vitamin C, Raw green juice, or Milk Thistle (Who can say, “Liver!”?)
• Raw Apples. (So, so sad.)
• Things that give me diarrhea (like 14 almond flour cookies in one sitting—don’t ask. Let’s just say I have an impulse control problem) will also make me itch, but temporarily.
• This bullet is reserved for the unknown sources; those I still haven’t found. It’s like the ancient Greek, Agnostos Theos.

I’ve researched itching and Inflammatory Bowel Disease (IBD: Chron’s and Colitis), and there’s really very little out there. So, in the interest of filling the gaps, I’ve decided to write on itching (pruritus), hives (chronic Urticaria), and other skin itchiness(es) (is that a word?) as they relate to inflammatory bowel disease.

Since there is such a paucity of information and experience out there that is accessible to us who have IBD, I’d ask that if you have experience with itching and IBD, please share it with us in the comments—especially if you’ve found a solution to your itching.

Next time we’ll take a look at the nuts and bolts of itching and IBD: Where does it (likely) come from and what you can try do about it.

Onward to Health,

For half of March, and most of April, I had been completely gut-normal (hurray!). I’d even eaten (gasp) a few pieces of bread without problems—until my wife started puking last Thursday. Now, a rotavirus, for a gut-normal person, is an inconvenience. It’s an awful time of gastric upset, and then life goes back to normal, but for someone with IBD a rotavirus can wreak havoc and cause a flare up. I’m trying to avoid that. Yesterday I slept for 16 hours. I’ve doubled my probiotics, and started wild oregano (transdermally, but rubbing it on my skin. My gut can’t handle it.). I’m eating only in my food safe zone, and making sure I manage the stress (and worry) of it well. I’ll keep you posted. Darn—I was doing so well…

Below, I’ve put together an informational post on LDN as it relates to Inflammatory Bowel Disease (IBD: Crohn’s and colitis), to conclude my journal series on my experience with it. I’ll continue to uptate you on my experience, but now after more than 6 months, it’s doing the most it can do, and I’m ready to move on to another topic. So, below is the “LDN Primer” I made for my doctor. It isn’t original writing. I’ve mostly created a mash-up from the sources listed at the end of this post.

What is low-dose naltrexone (LDN) and why is it important?

Naltrexone was approved by the FDA in 1984 in a 50mg dose for the purpose of helping heroin or opium addicts, by blocking the effect of such drugs. By blocking opioid receptors, naltrexone also blocks the reception of the opioid hormones that our brain and adrenal glands produce: beta-endorphin and metenkephalin. There are receptors for these endorphins and enkephalins in the immune system.

In 1985, Bernard Bihari, MD, a physician with a clinical practice in New York City, discovered the effects of a much smaller dose of naltrexone (approximately 3mg once a day before bed) on the body’s immune system. He found that this low dose, taken at bedtime, was able to enhance a patient’s response to infection by HIV, the virus that causes AIDS[1].

In the mid-1990′s, Dr. Bihari found that patients in his practice with cancer (such as lymphoma or pancreatic cancer) could benefit, in some cases dramatically, from LDN. In addition, people who had an autoimmune disease (such as lupus) often showed prompt control of disease activity while taking LDN. Since then, LDN has shown clinical improvements in a wide variety of illnesses; most notably, HIV/AIDS, Cancer, and autoimmune conditions.

How does LDN work?

LDN up-regulates beta-endorphin and metenkephalin thus, it boosts the immune system. The brief blockade of opioid receptors between 2 a.m. and 4 a.m. that is caused by taking LDN at bedtime each night is believed to produce a prolonged up-regulation of vital elements of the immune system by causing an increase in endorphin and enkephalin production. Normal volunteers who have taken LDN in this fashion have been found to have much higher levels of beta-endorphins circulating in their blood.

Increasingly, research is showing that endorphin secretions play a central role in the beneficial orchestration of the immune system. New England Journal of Medicine states,

In general, in people with diseases that are partially or largely triggered by a deficiency of endorphins (including cancer and autoimmune diseases), or are accelerated by a deficiency of endorphins (such as HIV/AIDS), restoration of the body’s normal production of endorphins is the major therapeutic action of LD

Clinical Trials of LDN and Autoimmune Conditions

• A multi-institutional clinical trial of LDN for Primary Progressive MS in Italy, which includes endorphin measurements, published in September 2008.
• Two Phase II placebo-controlled clinical trials of LDN for Crohn’s disease at Penn State.
• A study of LDN in the treatment of MS at the University of California, San Francisco, published in February 2010.
• A clinical trial of LDN in the treatment of fibromyalgia at Stanford Medical Center, published in May-June 2009.

LDN and IBD

Dr. Jill Smith’s paper, “Low-Dose Naltrexone Therapy Improves Active Crohn’s Disease,” in the January issue of the American Journal of Gastroenterology (2007;102:1–9), officially presents LDN to the world of scientific medicine. Smith, Professor of Gastroenterology at Pennsylvania State University’s College of Medicine, found that two-thirds of the patients in her pilot study went into remission and fully 89% of the group responded to treatment to some degree. She concluded that “LDN therapy appears effective and safe in subjects with active Crohn’s disease.[i]

Shown is the rectum of a subject with active Crohn’s Disease before starting therapy with naltrexone 4.5 mg/day. The mucosa is ulcerated, edematous, and inflamed.

Shows the same area of the rectum in the same patient four weeks after naltrexone therapy. The lining is now healed, ulcers resolved, and the mucosa is healthy.

Dosage and Frequency

The usual adult dosage is 4.5mg taken once daily at night. Because of the rhythms of the body’s production of master hormones, LDN is best taken between 9pm and 3am. Most patients take it at bedtime. The therapeutic dosage range for LDN is from 1.5mg to 4.5mg once before bedtime.

For Inflammatory Bowel, LDN can be used either in pill form (1.5 mg) or in a transdermal cream. For those with active diarrhea and malabsorption issues, an LDN transdermal cream may be more efficacious.

Rarely, the naltrexone may need to be purchased as a solution — in distilled water — with 1mg per ml dispensed with a 5ml medicine dropper. If LDN is used in a liquid form, it is important to keep it refrigerated.

IMPORTANT: Do NOT give LDN in a slow-release form.

Reports have been received from patients that their pharmacies have been supplying a slow-release form of naltrexone. Pharmacies should be instructed NOT to provide LDN in an “SR” or slow-release or timed-release form. Unless the low dose of naltrexone is in an unaltered form, which permits it to reach a prompt “spike” in the blood stream, its therapeutic effects may be inhibited.

Fillers. Capsules of LDN necessarily contain a substantial percentage of neutral inactive filler. Experiments by the compounding pharmacist, Dr. Skip Lenz, have demonstrated that the use of calcium carbonate as a filler will interfere with absorption of the LDN capsule. Therefore, it is suggested that calcium carbonate filler not be employed in compounding LDN capsules. He recommends either Avicel, lactose (if lactose intolerance is not a problem), or sucrose fillers as useful fast-release fillers.

The FDA has found a significant error rate in compounded prescriptions produced at randomly selected pharmacies. Dr. Bihari has reported seeing adverse effects from this problem. Please see our report, Reliability Problem With Compounding Pharmacies. Please see the above list of recommended pharmacies for some suggested sources.

Side Effects and Precautions

Side effects

LDN has virtually no side effects. Occasionally, during the first week’s use of LDN, patients may complain of some difficulty sleeping. This rarely persists after the first week. Should it do so, dosage can be reduced from 4.5mg to 3mg nightly.

Precautions

1. Because LDN blocks opioid receptors throughout the body for three or four hours, people using medicine that is an opioid agonist, i.e. narcotic medication — such as Ultram (tramadol), morphine, Percocet, Duragesic patch or codeine-containing medication — should not take LDN until such medicine is completely out of one’s system. Patients who have become dependant on daily use of narcotic-containing pain medication may require 10 days to 2 weeks of slowly weaning off of such drugs entirely (while first substituting full doses of non-narcotic pain medications) before being able to begin LDN safely.
2. Those patients who are taking thyroid hormone replacement for a diagnosis of Hashimoto’s thyroiditis with hypothyroidism ought to begin LDN at the lowest range (1.5mg for an adult). Be aware that LDN may lead to a prompt decrease in the autoimmune disorder, which then may require a rapid reduction in the dose of thyroid hormone replacement in order to avoid symptoms of hyperthyroidism.
3. Full-dose naltrexone (50mg) carries a cautionary warning against its use in those with liver disease. This warning was placed because of adverse liver effects that were found in experiments involving 300mg daily. The 50mg dose does not appear to produce impairment of liver function, nor does the much smaller 3mg and 4.5mg doses.
4. People who have received organ transplants and who therefore are taking immunosuppressive medication on a permanent basis are cautioned against the use of LDN because it may act to counter the effect of those medications.

Sources:

http://www.lowdosenaltrexone.org/

http://www.ldnscience.org/

Chron’s Dad Blog: http://crohnsdad.wordpress.com/tag/ldn-for-crohns/

I laughed out loud. What a great way to say, “[Ahem,] Tell us more. Why have you stopped writing?”

The truth is I lost momentum. Writing regularly for a blog takes time and energy, and my posts (at least) take a ton of research. I wrote furiously for years as I learned about Inflammatory Bowel (Crohn’s and Colitis), IBS, celiac, and the health conditions that follow with them. Writing is an outlet for me. I was angry. I felt as though my future and dreams, everything I envisioned for my life had either been stolen or been called into question. I’m not just talking about climbing mountains, or doing a 100 mile run. Those are goals. When I flared in 2008, my entire existence was called into question. Will I live to see my children get married? How many days do I have left with them, and I will I spend them all sick? Will that be my family’s memory of me—ill and weak?

On my worst days I felt as though the most simple of human pleasures (food, drink, and rest) had been denied me. So I began to write. Doctors painted for me a picture of a life of suffering. I wrote even more as I learned that the picture they painted doesn’t have to be me. I wanted (and still want) others to learn from my inner obsessive geek, the man who needs to know ‘Why’. After reading Breaking the Vicious Cycle and Listen to your Gut, I thought, “I ought to be able to figure this out. Medications don’t work for me, fine. But there are lots of other strategies that may.” That’s where I am today; still healing and still writing about the ‘other strategies’. Except, for the past year, my motivations to write have waned drastically. It wasn’t until recently that I began to wonder why.

All of that time spent writing between 2009 and 2012, I was burning the fuel of frustration. I was upset at the doctors; upset that when I was young I took so many antibiotics without question; I was upset that this was my life—until sometime last year. I think part of the break in writing signifies for me a shift in attitude. I’m not upset anymore. Sure I get down when my symptoms return, and yes it’s frustrating, but I’m no longer angry that this is my life. It’s not what I would have chosen five or ten years ago, but even with the illness, it’s better than what I would have chosen. There are lots of reasons for that, but the one that pertains most to this blog is that illness has matured me. It’s helped me to winnow from my life the things that don’t matter for the long haul. So what does matter?—relationships. They’re our lasting legacy. We have more power to change the world through relationships than through any other venue, period. Think about raising a child. Each concentrated hour of love poured into that child can yield countless hours of the same for the people whose lives they touch—how many people will that one child affect? And how many people will those people affect?

The frustrations of being ill are still with me, and I still have days where I feel pretty down about being ill, but the fact that my body is different than normal doesn’t define me anymore.

I’ve struggled with how to wrap up this series in a way that’s concise, helpful to you, and also satisfies my very particular way of telling stories—with the details included. It’s hard to find that in the blogosphere these days. To get the details, everyone wants you to give them something; money, your email address, or my favorite, “Like us on Facebook, and you’ll get (the gold at the end of the rainbow).”

I started this blog because most places I went for information, I came away wanting for one of two things: (1)The information. I just couldn’t find the information I wanted in the sort of detail I wanted it; and (2) The stories. Sites where people were telling their stories were rare. Since then, I’ve found a few more, but I had a hard time finding true vulnerability combined with the patience for articulate writing. So here we are. I’m trying (sometimes successfully, sometimes not) to fill those voids.

Before I get on to the meat of this final journal post, I want to give you a preview of my overall experience with LDN that you can take with you. So, if you read no further, read this: LDN, has taken me from 90-95% healed, to the point where I am currently living most days without any bowel symptoms. It’s not been a panacea, but it helped me over the hump. Now, if I’m careful with my diet, manage stress well, and stick with my probiotics and other supplements, I can live without gut symptoms. Yes, it’s a deep breath indeed. Here’s a quick list of the treatments that got me to that 90-95% healed:

1. The Specific Carbohydrate Diet
2. Probiotics
3. Fecal Transplants
4. Re-balancing the endocrine system (which I’m still working on—I see a future post or series of posts on this).
   1. This includes proper sleep (not by the clock, but judging by your body), and mindful meditation (more on that too in the future).
   2. A few select anti-inflammatory supplements. For me: Curicumin and Fish Oil. I’ve tried myriad others, but these are the ones that have helped the most and not caused digestive issues.

Then I added LDN.

Now the details, continuing from where we left off last time:

…During the seventh week, I began to notice a change in my gut, a change for the better. This is great, I thought. It’s actually working. I’d been through so many promising treatments, both natural and pharmaceutical, that hadn’t worked. It was such a breath of fresh air to see this working. In truth, I had hung a lot of hope on the LDN hook, hoping it oculd take the weight. I still had the dreams, of course, but I was no longer restless at night. I was actually having fun with them. They were so vivid, it was like living twice: I had my life during the day, and my bizarre Alice in Wonderland life while I slept.

I switched to the full dose (4.5 mg/day) about a week ahead of schedule. I was getting better and was anxious to come to the full dose. I remember being excited as I squirted the full dose from its syringe in August. This is it, I thought. This is the last thing. And I was right—and wrong at the same time.

I was right in that over the next three months I would gradually get better. What is “better”? When I say my gut got better I mean that my stools began to form up and I went from two to one stool per day. Before LDN I was going two to four (depending on the day) times per day, and most of the time it was loose (between a 5 and 7 on the Bristol Stool Chart). I had to be super-careful with my diet and stress.

By November, I was down to one stool per day, and it was formed about 75% of the time. This was huge. My gut was also more resilient. It recovered faster from food experiments gone bad, or stressful weeks. Instead of taking seven to ten days to return to ‘normal’ (whatever that is), it only took about 24-36 hours, and even though I still had to stick to the SCD, I didn’t have to be as careful with my personalized version of the SCD. I remember the week I began to come to this realization: I was frustrated with work, and my narrow diet (at the time) was beginning to seem dull. This often happens when I get stressed; I take it out on my diet. That night after dinner, all I wanted was some dark chocolate. I couldn’t stomach another banana, and I didn’t have the patience to cook something. So like a defiant middle-schooler, I got up from the table and opened the pantry, determined to have some chocolate, even if it killed me. I had eaten small bits of dark chocolate before (just a bite here and a bit there), but tonight I wanted to freely eat chocolate. I wanted to eat the whole bar. I didn’t. I snapped half the bar off and walked back to the table. The pleasure of that first bite was about all I could stand. I didn’t even chew. I just let it melt—no, meld into me. It took me almost 15 full minutes to eat that chocolate.

The next day I ate a small bit after dinner, and the day after that, the same. Each day with the same gut result: nothing. I celebrated that week of incorporating dark chocolate into my diet by having some for breakfast, and then making a huge chocolate moose pie for Thanksgiving dinner. This is where I might have gone too far in my addiction—I ate five pieces of that pie after I ate Thanksgiving dinner. Gluttony—and I paid for it. But this time instead of diarrhea lasting for a week or ten days, it lasted for about 24 hours, dangerously close to what a normal person might have. I blame the LDN for this improvement.

Thanksgiving and Christmas came and went. The LDN improvements dared me to expand some in December, January and February—and I did, sometimes successfully and sometimes not. Sometimes my excursions were daring and succeeded (Kentucky Burbon, though SCD legal, is my most egregious and courageous success; whole wheat muffins were my boldest error); sometimes they were cautious compulsions towards foods I love but my gut hates (peanut butter works in small quantities now, whereas I couldn’t touch it before); and sometimes they were just common sense experiments (like trying ‘new’ SCD foods I couldn’t tolerate before: Brussels Sprouts [success in small quantities], apples [only cooked work for me], increasing quantities of raw veggies [success!], and my favorite, mustard [which I eat proudly now thanks to LDN].

Now it’s mid-March (2013), and I’ve been on the full dose of LDN for about eight months. I consider it an integral part of my healing. I still have sporadic diarrhea from time to time (I’m still healing), but it’s usually my fault. When I’m not trying new foods, and when I treat my body well with sleep, meditation and my other healing regiments, I live without gut symptoms—One fully formed BM per day. Hallelujah.

I still deal with other body-system symptoms. From being chronically ill, underslept, undernourished, and inflamed, my endocrine system is unbalanced. Symptoms of that, for me, are chronic fatigue, increased soreness after exercise, low testosterone, low DHEA, cortisol and other hormones. I also continue to deal with furious, itchy skin, which comes and goes. Since being on the LDN, many of these symptoms have lessened (esp. the itchy skin). These will be the subject of my next few posts.

Onward to health,

Remember, this series is written retrospectively. I suggest you read posts 1, 2, and 3 first, as they read sequentially. As of this writing, I have been on the full dose of LDN since August, 2012, and am doing well. We’ll get into that part in LDN Journal #5.

***

Mid-June, 2012:

I took my first dose of LDN tonight. Just before bed, I reached into the brown sandwich-sized baggie and pulled out a small 3 ml syringe filled with cream. It could have been anything really. They could have sold me hand lotion, and I wouldn’t know.

Sunscreen. It reminds me of sunscreen as I apply it: Cold, thick, and white. 1.5 mg is my dose, so I carefully plunge out the proper amount onto a bare spot on my belly, and gently rub it in circles with my forefinger until it’s gone. It actually never goes completely away. If I rub it too much, it dries and the residual rolls off in little rolls like eraser waste, little LDN boogers. So I just rub it until it is lightly tacky but not wet, then I lie down on the bed and wait for something to happen.

This is silly, of course. Nothing will happen, but it feels like Christmas, like I just got what I asked Santa for in the mall. I sat on the old man’s lap and asked for LDN. I want a drug, Santa baby. And I want it to make me better. Think you can handle that?

Well it is the middle of June, and Santa is on siesta as I lie in bed. I put my ankles together and watch my feet. I have a small bunion on each foot that makes my big toes angle away from each other slightly. The toes are like two fleshy magnets turned wrong-ways, pushing at each other’s tips. Away. Away.

When I alight my consciousness from my feet, nearly ten minutes has passed. My eyes are heavy and I touch my belly where the cream was. It betrays a thin film that was not there before, a translucent reminder that maybe Santa does come in summer. I rise and turn out the light. To sleep. I dream in IMAX, vivid, large, and 3-double-D. My dreams are M.C. Escher meets Stephen Spielberg. I cannot say what it is I dreamt that first night (because I did not write it down), but the impression it left was indelible indeed. Colors popped. Images in enhanced color. Sound in digital. I have never before dreamt like that. I awoke with moisture in the recess of my breastbone, feeling a bit like I have just run a long race.

The next night is the same. Theater quality, bizarre dreams meet restlessness. I awake unrested, but oddly not tired. This dreaming and restless at night continue for about three weeks. Each morning I am more and more amused at the dreams. I even laugh. I am not rested, but not tired, a state, like a 4^th dimension, I thought didn’t exist.

At four weeks, I increase to 3 mg and the dreams return (after a week of normal dreaming), but this time only about 3-4 nights of restlessness. The dreams, however, remain. My mind is addicted to the dreams—so much more fuerza than before.

I played football in high school. Kicker. I was good, but the kicker is never a real part of the team. I didn’t play, just scored points, more points than anyone else. No matter. I remember one summer in August, we were practicing in full pads. It was still morning, but the hot humid air hung over us like wet wool. My holder, Jay, and I were working field goals from both hash marks at 35 yards with the back-up center. It was too hot for helmets, and Jay’s long brown hair flung sweatletts in small arcs as his head moved to follow the snap. The hair rested across his face like cooked pasta on the wall.

Between snaps he began to talk to me about his addiction to marijuana. He said he has been high so often in the past three years that to not be high felt abnormal, boring and low. He can’t imagine not being high, he said, but he wants to quit. What will happen to his reality when he quits?

I don’t know what to say, “Let’s have another few snaps, but over there, on the 25.”

After six weeks of IMAX dreams, my mind cannot imagine the old dreams. They are somehow lesser: dull, boring and low. I don’t know what to say to that either. I don’t know what will happen to my subconscious reality when the LDN quits the dreams, or I quit the LDN. I should call Jay, he might tell me.

***

…This being a new doctor, I explained everything from the beginning. I reviewed my history and how I developed colitis (as far as I can tell). I recounted my attempts at modern intervention: steroids, immune suppressants, sulfa drugs—none worked. I told him about the SCD, and showed him my improvements in 2009. I told him about the benefits I’d seen from probiotics and fecal transplants (FMT). I reminded him of the clinical improvements demonstrated in my blood work and my colonoscopies over time.

“So if you’re doing so well, why are you here?” He asked with a wry smile.

“I have a proposal,” I replied matching his expression. “I’ve been at about 95% healed for a while now and I’d like to add another layer of treatment. It coincides nicely with the philosophy of bacterial manipulation and immune enhancement that has been working for me. I believe this could be the last piece of the puzzle for me.”

I don’t know if this doctor had ever had such an assertive patient before, because he looked at me, confused, with the same kind of odd quizzical cock of the head a bird gives when you talk to it. Afraid I was losing my momentum, I jumped off the limb.

“There have been several studies showing the same benefits from immune enhancers as other immune suppressants. Since immune suppressants made me so sick, I thought, Why not go the other way? There is a small study using a low-dose of Naltrexone that shows benefits to IBD.”

I showed him a peer-reviewed study using LDN for Crohn’s disease. He asked several insightful questions about Naltrexone, and I explained that yes, it is FDA approved for substance abuse, but when given at a small dose of 4.5 mg/day, it boosts the immune system. He asked how, and I explained. He asked the risks and side effects. I explained again. He asked about dosing, and I explained the tapering up to avoid sleeplessness and the use of a trans-dermal cream to avoid malabsorption.

“Sounds like a reasonable approach given your history. But before I write a script, I’d like to go check this out. Can you hang on a minute?”

“Sure,” I replied. And I reminded him to take the summary I had prepared with him, because the website address are at the top.

When he returned, he started, “Mr. Robinson. This is a small pilot study, and we can’t generalize this small of a study group to the entire population.”

“I know,” I interrupted “but given there are no real risks here, it’s worth giving it a six-month trial.”

“And if you get worse, or if you experience anything weird, you’ll promise to come see me?”

“Promise.” I said.

“OK. I want to see you in 2-3 months to see how it is going. If it’s going well, I want to see you back 4-6 months after that.

As he looked for his prescription pad, I outlined the particulars. I want trans-dermal cream. I told him what pharmacy I want to use and why. I reminded him that there was no way in H-E-double hockey sticks my insurance would pay for this, so don’t worry about parsing out the refills over time. Write the script for the whole 6-8-month trial.

“Thank you,” I said. “When Dr. X retired, I was worried I wouldn’t find another doctor as flexible as he was; someone who would see me as a partner. I appreciate that.”

He smiled and reminded me that a partnership goes both ways. If I get worse, he said, he expected me to consider conventional treatment again. I consented.

The medication arrived in about a week. It came in a dark brown zip-shut bag. Inside were about 30 small cream syringes for applying the doses. I was to start at 1 mg/day for a month, then go up to 3 mg/day for a month, and finally increase to 4.5 mg/day, my full therapeutic dose. I was excited. I had waited for months to try LDN, and had high hopes it would help clear some of my residual diarrhea, infuriating itching, and some of the fatigue with which I was still dealing. I placed the brown baggie in my sock drawer to keep it at room temperature and in the dark.

Tonight I take my first dose.

***

The weight of starting over with a new doctor cowed me for days. He just left. He quit. It was hard to believe. Doctors don’t just quit. They move practices, change locations, but they don’t just quit. I sat in this reality for days—He quit; I need a new doctor.

It was nearly a week before I could muster the energy to begin searching. One advantage of being on the east coast (in the U.S.) is there are lots of fantastic doctors. The disadvantage for me was, there are lots of fantastic doctors. But the reality was, I didn’t want any of those fantastic doctors. I didn’t know them. I knew mine. I had spent three years intentionally building a peer-to-peer relationship with him. He understood me, assisted me with my natural methods, and challenged me in my thinking. How long would it take to find that again? A year? Two?

Finding a new doctor is like dating. Someone suggests, “I know this great doctor…” and you go. You set a time, sit together, engage in small chit-chat, and begin to ask get-to-know-you questions. If, by the end of the date, we hit it off, maybe I’ll call you again.

I hadn’t been on a date in more than three years.

“This is ridiculous,” I said out loud in my office. “Just start looking.” So I did. And in about an hour I had a short list of five doctors in my area which might (just might) be willing to see me as a partner, and listen to my methods and ideas. I decided to start close to home with a doctor (my age) in the same practice as my old GI. I left a message for him to call me. If I was going to transfer to him, I’d need to ask some questions first. To my surprise, he called me back promptly.

I explained to him that I was a patient of Dr. (Quitter), and really liked him, but since he was gone now, I was looking for a new GI. I asked him his view of diet and other natural treatment methods for IBD. I asked him how he viewed his patients (I was looking for a partnership). I asked him several dozen more questions. He answered them all honestly and with relative patience. The conversation impressed me enough to convince me to see him. So I thanked him for his time and made an appointment.

The appointment was the real test. Would he read my history beforehand? Would he listen long enough for me to bring him up to speed on the past three years? How would he react to my suggestion to start LDN?

I scheduled two 15 minute blocks for my appointment, and set about preparing a short (one page) summary of my treatment and symptom course over the last three years. I also prepared a short primer on LDN. This was going to be a busy visit.

When I arrived, he greeted me with a smile and a handshake. We sat in a small office, he at a blank desk and I in a metal and leather chair on the other side of the desk. On the desk’s surface was one beige folder—my file. Medical textbooks the thickness of my lower leg rested in a bookcase to my right. A bay of windows on the left filled the room with a pleasant afternoon light.

“Where should we start?” He asked.

I inhaled deeply. Let’s start at the beginning.

***

The idea for LDN came to me a year ago, but I put it off—I had other treatments to try. At the time, I was just at the end of bacteriotherapy, and wondering where to go next. My wife and I surveyed all of the credible natural treatments of which we had knowledge, and set about the conversation. We discussed what had worked so far: the SCD, probiotics, stress reduction, and now bacteriotherapy was added to the list. We decided to undertake a year of natural antibiotic treatment, as nothing in it contradicted those treatments which were currently working—change the bacterial neighborhood. So LDN went on hold.

The year of antibiotics came and went, and I made significant improvements. However, I still was not fully recovered, so we revisited the idea of LDN. I resumed research. The clinical and anecdotal evidence seemed strong for MS and other autoimmune conditions, and I even found a small study showing its efficacy with Crohn’s—golden. I would need that study if I was to convince my doctor that LDN was worth a try.

As I researched, read, and talked with others, I could not help but get excited. I do this every time I am confronted with a new treatment. New treatments bring new hope, and for some reason I have not explored, just the thought of LDN brought me more hope than usual. I was excited and made an appointment with my doctor, a naturopathic physician in Washington, D.C.

My inner scientist and geek took over, and I prepared for her an LDN briefing package which explained the history of the drug, how we believe it works, its efficacy with IBD, and a list of compounding pharmacies we could contact. I even gave her the name of another doctor she could contact, who has used LDN to treat IBD patients. The briefing was topped off with a complete treatment plan timeline, just so she could see how LDN fit into the big picture.

I think I might have overwhelmed her.

Our discussion went well, but LDN was new to her, and I could see her struggle with the idea of using a pharmaceutical drug in conjunction with what was already so obviously working for me—diet, probiotics (human, and other), natural antibiotics. It was clear she had not read my briefing package, so I gave her the short version there in conversation. She nodded her head. It made sense, but naturopaths in D.C. do not have full prescriptive rights, so I would need to partner with my GI. Strike one.

I have written about my GI before. He is wonderful—open to non-pharmaceutical approaches, kind, a good listener, and flexible enough to see me as a partner. This would be easy, I already have the briefing package prepared. I called to make an appointment. A woman answered the phone.

“Hello, this is… how may I help you?”

“Hi! My name is Matt Robinson, and I’m a patient of Dr. [Name]. I’d like to make an appointment.”

“Oh.” (long, awkward pause) “Dr. [Name] isn’t with the practice anymore. He left for personal reasons. I can make you an appointment with one of the other doctors if you’d like.”

“Uh, wow. No, I really like Dr. [Name]. I’d like to stick with him. Where is he practicing now?”

“We don’t know. He didn’t leave any forwarding information, and none of the other doctors in the practice, if they know, are telling us.”

(pause for effect) “I’m sorry. I’m having a hard time understanding this. He quit? Just like that?”

“Yes.”

“And no one knows how to get in touch with him? He’s not practicing anywhere?”

“That’s all we know right now. I’m sorry. Can I make an appointment for you with one of the other doctors in the practice?”

“Gosh, I…no. No, I’m going to need some time to think about this.”

“Okay. Just call us back if you would like an appointment.”

“Are you sure you’ll be there if I call?” I chuckled facetiously. She did not laugh.

Dazed, I hung up the phone. What could have happened to him? I remember initially feeling concern for him, but soon that concern morphed to loss—surprisingly deep loss. I spent three years building confidence with Dr. [Name]. He was the first doctor who listened to me and treated me as an equal partner, a colleague. This is the doctor who had embraced my diet, encouraged my probiotic use, and partnered with me in FMT. For the first time in the four years since that massive flare-up in 2008, I felt alone, really alone.

Where would I find another doctor like Dr. [Name]? More importantly, how long would it take to find him/her? My mind began to race.

I’ll have to start from scratch. Where do I even begin to look; there are so many GI practices in DC? Whomever I find, I’ll have to re-educate, build trust all over again. How long will that take? And how many doctors will I have to meet before I find one like Dr. [Name]? How the hell am I going to start LDN now?

In that moment after I hung up the phone, the thought of finding a new doctor was gigantic, a mammoth mountain in my path. Not knowing right then if I could climb it, I sat at its foot and stared at it. I stared, and stared, and stared. I breathed in the mountain. I marinated in its shadow. I considered going around it, not having a traditional MD, but quickly tossed that idea. I meditated on it, trying to make it smaller, less effort to cross, but there was no short-cut. I was going to have to find another doctor.

Now, finding a new doctor may not feel like such a big deal to some of you. Certainly, if you are not sick with a chronic illness, finding a doctor is no big deal. Some of you with IBD or IBS have been through a baker’s dozen doctors. But for me, and for those of us who insist that IBD and IBS can be conquered without the traditional immune-suppressing therapies, having an MD partner who supports that position, is like finding a diamond in a pile of coal—how likely was it for me to find another gem? I had just lost my diamond.

I put LDN on hold—again.

If you haven’t noticed, I haven’t put out a lot of content over the past six months. I’ve been evaluating the blog, and envisioning where to go from here. In my meditations, I as constantly left with the feeling that something was missing. So I began searching back through all of the blogs and literature I’ve digested (pun intended!) in the last three years. Indeed, there was something missing—people’s experience.

There are lots of people writing ‘how to’ articles, selling e-books, coaching, etc (including me!). Indeed, there is a pile of information out there, more is readily accessible today than ever before—and that pile is growing.

I asked myself, after three years, where can I go next with this blog that would add the most value for you, and for me. The answer? Story. My story, with all of its imperfections, struggles, and triumphs.

There is a dearth of story out there about IBD. What story I could find left me wanting more. It felt like it just skimmed the surface, an introduction to a ‘how-to’, or a 500 word blog entry. Sure there are a few exceptional exceptions out there, but I feel like story is largely missing from the IBD literature. So, with the same frustration and feeling that caused me to start this blog, I decided to begin filling in this hole too. Maybe more will follow.

With that in mind, I invite you to come on a journey with me. I invite you into my life, from as far back as I can remember, to read and experience my story (as it relates to developing and living with colitis). As you read, I encourage you to reflect on your own life and to utilize the comments below so that we can learn together. This blog isn’t huge, but those of you who read regularly and stick around have a wealth of experience from which we would all benefit.

I will still do informational posts along the way, sure, but they will be fewer for a while. In the next post, I will start a journal series on LDN (Low Dose Naltrexone). I started LDN in June, and it is helping, but it was a mini-epic trying to get it. So I’ll start with my LDN story and move from there.

Until then—Onward to health.

OR, use the full link: http://scdlifestyle.com/2012/06/big-picture-evaluating-your-digestive-healing-plan/

Enjoy! I’ll be back to my regular posts in July.

Onward to health,

In the first post, I discussed the value of a big picture outlook, and introduced the concepts of balance and prioritization as they relate to healing from digestive illness. In the second post, I expanded on those concepts, and walked through the first steps of developing a big picture-focused healing plan.

In this post, I deconstruct my healing pyramid, and guide you through inserting goals and using your visionary goal to produce a healing plan. At the end of each section, I will give an example of that portion of my healing plan.

Enjoy the post! It’s here: http://scdlifestyle.com/2012/05/designing-a-healing-plan/

Onward to Health,