In 2009, I had my first taste of the skin manifestations of colitis. I’d just started taking probiotics. Within two or three days of taking them, I began to itch. I wasn’t tracking my symptoms or my diet at the time (see my journal template here), and had been spending lots of time in the woods. I thought I had gotten poison ivy. Over the next few days the itching got worse and worse. I was befuddled. Soon I had full-blown hives—a “classic drug rash,” my doctor called it. By the time I got to the doctor, though, I had put two and two together and quit the probiotics. It took almost three weeks for the hives to dissipate—even with a potent antihistamine cocktail.

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. Read the rest of this entry

Diarrhea, vomiting and sweating ≠ colitis for me at this stage of the game. So what is it?

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. Read the rest of this entry

A few weeks ago, I received a comment asking how I’m doing on LDN. The reader had read my first few posts on LDN, and wondered, “I haven’t seen any posts since [then] how are you doing? Did it kill you?”

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. Read the rest of this entry

It’s just one day after Christmas, and I would be remiss not to wish you all a happy new year before I start. So here goes… (ahem)–Happy (coming) New Year! To celebrate the Holidays, think of something for which you are truly thankful, and write it on the palm of your hand (or somewhere where you will see it all day). Each time you see it, say it out loud: “I am thankful for…(whatever is written on my hand).” Do this weekly, and you’ll be surprised how your outlook on life shifts. Okay, on to the post…

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.

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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. Read the rest of this entry

This post is a continuation of my last post on finding a doctor. You can read the first LDN journal here. As a reminder, I am writing and posting this series on my experience using low-dose naltrexone (LDN) to treat IBD (colitis, for me). retrospectively. I had originally envisioned writing the LDN journal in a more real-time fashion, but life has prevented me from doing so. For me, writing these some months later has allowed me to meditate on the experience. I think the story is even better now that I’ve had time for reflection. For those wondering, yes, I am doing really well on the LDN. It has helped me to recover that last little bit, those formed stools that have been so elusive for the past four years. I have even expanded my diet some–but we’ll get to that, I promise.

***

…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?” Read the rest of this entry