January 1, 2009 marks four full years on the SCD. March of 2009 marks eighteen months since the last time I felt a Crohn’s symptom. I considered myself to be in remission because I am on no medications, had no symptoms and my SED rate was a fantastic two.
Knowing how good I felt, I was very curious to see how good I looked inside so I recently had a colonoscopy. And now I find myself faced with a conundrum. The colonoscopy showed superficial ulceration and the biopsy came back as active Crohn’s. Furthermore, my doctor was surprised that I don’t have any obstructive symptoms given that four inches of my ileum is constricted by about half. He felt that given that I eat a lot of roughage I would be feeling pain, bloating and gas which I am not. This constriction existed before I began the SCD, so I wasn’t surprised that it was still there.
Allow me to backtrack a little. When I started the SCD, I had planned to stick to the diet, wait a year after my last symptom, then get some objective medical proof that the diet was working. This is why I elected to get the colonoscopy. My hope was that the GI would be amazed at how good my bowel looked and report that the biopsy was negative. I further hoped that he would then become enthusiastic about the diet, tell all his patients about it and I would have the satisfaction of helping others like me. I was so wrapped up in this hope that I caused myself a lot of stress.
From the time I scheduled the ‘scope to the time that I followed up with the GI afterwards, I was on edge. I didn’t sleep well, I got cold sores and finally shingles. In part, my stress was because I had put such a high standard of success on the outcome of the colonoscopy. The other aspect of my stress had to do with medicine. In my first consult with the GI he recommended that I take Imuran. I know lots of people find great relief in Imuran, but all the immunosuppressants scare the hell out of me. I knew that I would face a confrontation with my GI over this. After the ‘scope he again advised Imuran. I again declined. When he realized I wouldn’t budge, he suggested Pentasa. Again I said “no thanks”. I tried that drug in the early 90s and it made me sicker than a dog. It was worse than the disease.
I was hoping to create in this GI an advocate for the diet, someone with great reach and ability to impact many lives. In this aspect I feel that I’ve failed. This is a great disappointment for me and I’ve had to reexamine my goals.
If you’ve been helped by the SCD perhaps you’ve felt the same. Maybe it has changed your life and you want to shout it from the rooftops. You want to save others from the suffering you’ve endured.
Maybe you remember what hell it was when you were 17, you weighed 85 pounds and all they offered you was surgery and not much hope. Maybe you too are bitter that you suffered so long before stumbling upon the SCD, that it existed for more than thirty years before you first needed surgery. Maybe you are angry that you weren’t told about it sooner, but at the same time overjoyed to be feeling so much better.
But I digress. Let’s get back to my conundrum.
On the one hand I feel great and feel no need to take any drugs for my Crohn’s. On the other hand I have an objective lab result that says I still have active Crohn’s. My immediate reaction was to remain on the SCD, drug free. The specter of eventual surgery looms, but to me the risks of drugs appear darker. Given the weight of the situation I felt I needed to think it out long hand. I created a chart with four columns; treatment, benefit, side effects and risks. In the first column I included possible actions including doing nothing, eating SCD and each individual Crohn’s medication. I then filled in each row. Having all that information on one chart made my course clear.
Every good conundrum has a solution and for me, that answer is simple – eating SCD. I may not have gotten a clean bill of health from the lab, but my quality of life is fantastic. I have energy that lasts a whole day. I even wake up before my alarm. I can take long walks in the woods without having to leave a little something behind a tree. I live without fear. I don’t care where the bathrooms are because I don’t have emergencies anymore.
And oh yeah, my blood work rocks.