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.

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,

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