A couple weeks ago, we got a message from Phil on Twitter:
Phil Agostino @scdlifestyle My last 25mg of azathioprine. Those suffering stay strong #colitis #IBD #drugfree #health #diet #SCD pic.twitter.com/NEdy4djalP
We couldn’t wait to hear more from him. (Here’s the rest of our conversation if you’d like to read.)
With hopes of inspiring others in similar situations, Phil is using social media to share his story with the world. For some, all it takes is seeing another real person who’s “been there and done that” to shift their lives entirely. See, there’s power in numbers and there’s no coincidence that more and more people are getting healthy again through diet, supplement, lifestyle and mindset changes like those we talk about.
And luckily, there are amazing people like Phil who feel compelled to spread the word to help others. We couldn’t be more grateful that we’re a part of the change we want to see in the world.
I’m 31 and work as a personal trainer and therapist in the UK. I first started getting symptoms 3 years ago. At first it was just a small stomach ache and a few extra visits to the loo, but this quickly escalated into severe diarrhea, cramps and blood loss. I’ll never forget when I first knew something was wrong, because it happened during my Body Combat class. Of all the times it could start it had to be in front of 30 women! I suddenly got that dreaded feeling of needing the toilet but knowing I couldn’t hold it. I had to literally jump off of the stage (mid-song) and run to the toilet. When I got back, I was so embarrassed I told them I had been sick from food poisoning.
This was the first of many anxious experiences I had while trying to continue doing my job while I was ill. Even though the majority of my class participants knew and accepted I was ill, and probably thought no less of me needing to run out of class now and again, it was something I struggled to accept. Eventually I learned to make a joke of it and teaching the classes became less worrying. Unfortunately, some of the gym managers were less understanding and I had some classes removed from my schedule.
After the usual trips back and forth from the doctors, I was diagnosed with severe Ulcerative Colitis. Another thing that I’ll never forget was asking the specialist if I needed to “change my diet” to which he replied, “No, diet doesn’t matter” (feel free to take a moment to laugh or shake your head haha). I was prescribed prednisolone which started working relatively quickly. But when tapering off it only took 4 weeks to flare.
The Worst Flare Ever
To make a long story short, this cycle went on 2 more times except every time I was put back on them they worked less until the point where 8 pills a day weren’t doing a thing! The last flare was the worst experience of my life. I was going to the toilet 30-40 times a day and mostly through the night, which made trying to go to work impossible. I also had flu-like symptoms, fever and the worst stomach cramps I’d ever experienced. One time, I was so ill I spent the entire night on the toilet; I thought I was going to die.
As someone who trains and makes a living working in a gym, the most heart-breaking thing was the weight loss I endured. In just 2 weeks, I lost over 2 stone (28 lbs)! All the effort I’d put in over the past few years had vanished (along with it my confidence and identity).
Another difficult thing I found was that people around us seem to have no problem telling you how awful you look. This really annoyed me!
A Positive Mindset Shift
Anyway, through all of this, I still maintained a positive outlook. I was determined to get better and wanted to see if I could help myself, so I started doing my own research. I came across the book Breaking the Vicious Cycle. After reading it a few times, and coming to grips with what I needed to do, I got started with the diet.
I kept it simple at first by eating small portions of fruit, vegetables and chicken. To my amazement, I noticed my symptoms started to ease off for the first time in months and I was finally able to taper off of the steroids. Even at this point, my doctor didn’t want to acknowledge that the diet was helping. Although I had improved, I was still having some symptoms, albeit less severe, but it was clear that the steroids were not going to get me into remission and an alternative was needed. The doctor prescribed azathioprine and I was lucky to have no problems with this drug and after several months on it I finally got into remission and my health stabilised.
Patience and Persistence Pays Off
I messed the diet up a few times in the beginning (as I am sure most do), but I managed nearly a year without a single slip up. I believe this commitment is what led to me getting healthy again. I returned to training and working, which was hard as the anaemia really kicked my butt. But I kept going and remained positive with the help of some really good friends (which was priceless)!! I still had the odd bad day and the anxiousness every time I went somewhere new. I’m sure you guys are familiar with the “Find the Nearest Toilet ASAP” game haha, but I was continuously improving and that’s all that mattered.
I’ve kept my diet healthy staying close to the SCD rules, but I’ve added some foods back in, even a few treats, that I could tolerate. Using the info provided by SCD Lifestyle, I managed to add in supplements and tweak the diet to get healthier and healthier. I’m so grateful I found this page as it’s helped me so much.
As I became better, I began to question how much I really needed the medication. So, I decided to find out by dropping one pill from my dose. I decided that sticking to this new dose for 3 months would give me enough time to see if symptoms would return but they didn’t. So, I lowered the dose again by a pill. Another 3 months passed by and still I was fine. This made me happy because I wanted to stay on the lowest dose possible yet remain in remission.
My annual hospital appointment came up just as I was due to drop to 1/2 of a pill, so I thought it was a perfect time to inform my specialist of my plans. I assumed he would be happy for me, but I’m not so sure that he was haha. He sternly told me I could flare at any time, but I decided to see it through. We agreed that I’d do 1/2 a pill for 8 weeks and watch carefully for symptoms.
The 8 weeks is over now, so all I can do is get on with my life, keep control of my health and hope to stay in remission.
You Can Do This Too, I Believe in You
For anyone who’s currently suffering with this, or new to IBD, stay positive. It’s the only way. Take things slow on the diet by adding foods in one at a time. Realise that your health is way more important than chocolate and pizza…unless you can make an SCD legal one of course haha. Build yourself back up from the inside and stress out less. I used to tell myself I could be a lot worse and it’s true. Don’t let yourself become isolated, especially when symptoms are bad and you’re lacking energy. There were times when I’d have to force myself to see friends, but I always felt much better for it.
And to close, if you ever want or need some advice, by all means, feel free to email me at [email protected]. I am always willing to help, especially if it’s exercise-related.
Thank you so much Phil for sharing your inspiring story with us and for your willingness to share it with this amazing community! Hearing results like this only reinforces our beliefs, but the impact of your words on those dealing with IBD and struggling to get by is profound.
If you’re reading this and would like more help using food to heal, our step-by-step book can help you get started on SCD: http://scdlifestylebook.com
In good health,