TRANSCRIPT
I would like to make a short public service announcement showing that it is possible to recover fully from ulcerative colitis, contrary to what the doctors and the medical fields say. The example I have to prove my point is myself.
It’s now the year 2019. Well, 14 years ago, in 2005, I was diagnosed with ulcerative colitis, and I had that diagnosis for, hmm, the better part of four and a half, almost five years. In fact, toward the end of my time of being diagnosed with it, the doctor says, “Well, actually, it might be more serious than ulcerative colitis. You may actually have Crohn’s disease at this point,” because the colitis was traveling up my large intestine toward my small intestine. He said, “You may actually have Crohn’s disease. We’ll have to see what happens.”
Also, that last time I saw the doctor, he said, “Well, considering the negative outlook of your ulcerative colitis, the way it’s progressing in a rather negative way, we’re gonna have to at some point talk about the possibility of getting your large intestine removed entirely, maybe having to have a stoma put through my gut so that I will have to poo in a bag for the rest of my life.” Well, that was actually the last time I saw my gastroenterologist, and I didn’t realize it was gonna be the last time I saw my gastroenterologist because I actually thought I was gonna have to be going back, who knows, forever.
Part of the reason is I’ve been seeing him regularly for five years since I got that original diagnosis. Now, he told me there is no recovery from ulcerative colitis. The best we can hope for is to get it into remission. I took a lot of pills. I took suppositories and enemas full of cortisone. I took the pills in the Sal Amin, non-steroidal anti-inflammatory pills. I took lots and lots of those. I don’t remember how many I was taking at the most, 15-20 a day of those little red pills. Every night, I was having the enemas put up my butt of cortisone to soothe my large intestine. It was so inflamed.
My symptoms were I had to go to the bathroom. I had to poo all the time—ten times a day, 15 times a day. Sometimes I couldn’t control when I would go, so I would poo in myself, unfortunately, embarrassingly often. Sometimes it happened every day; sometimes it happened twice a day. Also, lots and lots of blood. I had so much blood in my poo; it was horrible. At first, it was terrifying. Once I started realizing, well, this is just my life, I got used to it. But it’s like, what kind of life is that to get used to having to see blood in my poo all the time?
Well, anyway, I talked to my doctor right at the beginning and throughout the process about the idea that I thought I really might get fully well. He always said, “No, no, there is no cure.” And I said, “Well, what causes it then? What is causing me to have this problem?” And he said, “It’s idiopathic,” meaning cause unknown. “We don’t know what causes it.”
I told him, “I think I know what’s causing mine. I have a massive amount of stress in my life. In fact, I have a massive amount of stress coming from different angles: unresolved childhood trauma, breaking away from my really toxic family of origin. Also, I was working as a therapist. I had an extremely stressful job. I was working with quite a lot of people who were diagnosed with psychosis, schizophrenia. A lot of people were not taking their medication by choice. I respected their choice, but it was very, very stressful.”
So I told my doctor this. He said, “Well, stress, stress, stress. We know that stress contributes to it, but stress does not cause ulcerative colitis.” We knew that. And I remember thinking, “Wait, that’s not exactly logical. If you don’t know what does cause ulcerative colitis, how can you say what doesn’t cause it? How can you say what doesn’t cause mine specifically?” It didn’t really make sense to me. There was not a logic in what he was saying because I was pretty sure it was stress.
Well, what happened to me is also one of the symptoms I had is because I was peeing so much, I couldn’t keep food inside me. It would just flow right through me. I lost weight. I already was a skinny guy to begin with. I’m a skinny guy now. I was a lot thinner toward the end of my ulcerative colitis. I think I was 15, almost 20 pounds lighter than what I am now. I was very skinny. I was skin and bones, and it was scary. I was like, “I’m not getting enough nutrition. I’m below the lowest BMI.” I was in, like, what was it, undernourished, underweight for my BMI? It was scary.
So what happened to me is a combination of many things. I started realizing I need to change my life, if only for my own survival. I need to get out of this. So I did a lot of planning, and I quit being a therapist at the beginning of 2010. I didn’t leave that job with another plan for work. I thought, “I’m just gonna take off for a while.” As it happened, I ended up getting a financial grant to make documentary films on recovery from psychosis without medication. I ended up making those films in 2010; they came out in 2011: Open Dialog and Healing Homes.
But what I did is I quit being a therapist. I went on the road. I started filming. I started traveling. I started having fun. My stress level went down profoundly, and within six months of quitting being a therapist, I had tapered off all of my medication. All of the pills that I was taking, I’d stopped taking the suppositories up my butt, stopped taking the enemas of cortisone. I was totally medication-free.
Part of what gave me the confidence to come off my medication, to come off it slowly—I really did taper down—but part of what gave me the confidence is I started seeing myself get better. Even when I was on the medication, quitting my job, getting so much of that stress out of my life, getting even further away from my family of origin, not seeing them, taking a real break in communicating with them, it helped. It’s like I came back to myself. I started relaxing.
And then it wasn’t just removing stress from my life; it was something I said a little bit ago. It was also having fun. I really started having a lot more relaxing fun, playing a lot more music, meeting people, traveling, learning new languages, seeing new parts of the world, swimming in the Mediterranean, swimming in the Atlantic. I started enjoying my life in a whole different way. I wasn’t always thinking about healing and trauma and grieving and all this profound stuff and pain—people’s pain, pain, pain, pain, pain. I really got away from it.
And what happened is my colon started to relax. I really liked that idea that the colon, the large intestine, it is a sort of second brain that we have. Our gut has so many of the same neurotransmitters that are in our brain. Well, I think some people stress plays out in their mind and their brain chemicals. Who knows what happens when people, you know, really lose their minds? But I think I lost my mind through my gut. My gut just went wild. It was firing all over the place. It was so stressful what I was going through.
Well, take the stress away, something relaxed in me. Something allowed me to sleep better at night, better dreams at night, more relaxing when I’d wake up in the morning, not so much pressure to always do, do, do. Well, I really calmed down. My colitis got better. And you know, I thought, “Should I go back to the doctor and tell him?” And I just think what went through my mind at the time is I don’t want to go back to the doctor. I don’t want to have another colonoscopy. I was having colonoscopies at least once a year, but they put the camera up my butt and look inside me and take little bites of the inside of my intestine and analyze the tissue inside of my colon, only to tell me, “Oh, we asked your disease. Do you have all this disease stuff?” And they made it seem so biological, and he was so confident that it was a biological illness that I had not.
Something emotionally connected. It was like the medical field was so distanced from the emotional side of it all. So I bought into that. I did such profound stuff with changing my diet. I did the specific carbohydrate diet where you take all complex carbohydrates out of your diet and gluten and everything like that. Eight tons of more meat, hard cheese, oils, things like that. It had no effect. That is, no effect in a positive way. It did have some negative effects on me. It made it difficult for me when I returned some of that food back into my diet to be able to digest complex carbohydrates. It was tough. It was like I never had that problem before I went on a specific carbohydrate diet.
So yes, although I have heard of some people who recover from colitis from changing their diet profoundly, I was not one of those people. I kind of wished I’d never done anything different with my diet because it really didn’t have a positive effect on my recovery. It really was quite simply profoundly changing my life and on a lot of different levels, removing the stress and having more fun, which by the way, I’m still doing. And it’s been how many? Nine years? A little over nine years since I’ve been fully recovered from colitis. No relapses, by the way.
So the medical field may say, “Oh, he’s just in a long prolonged remission.” I don’t see it that way. I see myself as cured. I don’t see myself as someone who’s going to go back and have colitis again. I really do see myself as someone who is permanently cured. And for that reason, I don’t feel any need to go back to my gastroenterologist and tell them. Even though for the sake of adding to the medical canon, I would like to tell my doctor that I have recovered from colitis, but the problem is I don’t think he would even believe me. I think he’d just put it down as me being in remission because I think he was so focused on the idea that I cannot get well.
So instead of telling the doctor who probably won’t write it up in the medical literature anyway, I’ve come here to tell you. And maybe this can help someone who has ulcerative colitis have hope that yes, here is yet another person. Because I think there’s a lot of us out there. Yet another person out there who has recovered from ulcerative colitis.