Phil’s Inspiring Story: Surviving Ulcerative Colitis

by Jordan Reasoner

Phil-Agostino-Colitis-pic

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.

[Enter Phil]

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.

Phil Agostino

[Enter Jordan]

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,

– Jordan

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About the author

Jordan Reasoner Jordan Reasoner is a health engineer and author. He was diagnosed with celiac disease in 2007 and almost gave up hope when a gluten-free diet didn’t work. Since then, he transformed his health using the SCD Diet and started SCDLifestyle.com to help others naturally heal stomach problems. You can check out his story here and find him on Google+, Facebook or Twitter.

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{ 5 comments… read them below or add one }

Mike Kennedy September 8, 2014 at 8:54 am

Hello,

Well, it’s a nice story. Glad it worked out. All the stories I see seem to be people with illness for a relatively short time… < 5-7 yrs. I've had Crohn's for 25 yrs. Lots of suffering. The SCD diet has done nothing after 10 mos. Most people see SOME improvement. Not me. I eat VERY few foods. Restarted Intro diet. No help. Doing FODMAP. No help. I bought into the idea that maybe I have gut dysbiosis. Joined, took the test, no bug found. Recommendation? Do test again, or different test. More money. Not at the point yet to do it – doing too many other protocols right now. No Crohn's medication ever worked. Eventually had my colon removed (2010). Still suffered. It was hell. The doctors have no answer… "Well let's do another sigmoidoscopy and start you on Crohn's meds" NOT! It didn't work before, all those years (because all the 'help' led to colon removal!) why would it work now? At that time ( after surgery) I had no evidence of Crohn's. Walked away from medical science. Seems alternative medicine is not helping either, so far. All the supplements, all the lifestyle changes, all the affirmations, all the suggestions, all the diet… and I'm actually worse. I've seen no improvement at all. And many of the supplements actually made me worse. I'm spending all this money, living this grueling life and seeing no sign of improvement in any area. How long do I buy into it? I got a Brain protocol to help me sleep (insomnia, anxiety, and btw, LOTS of pain). Well, it made me worse. Restarted a few times. Can't do it. It increases my anxiety. I spent all that money – 15 bottles on my table and I can't take them. Adrenal Protocol – can't take the full dose. Was recommended maybe too much stimulation (anxiety, crying, emotional) Restarted it twice. Going very slowly. Trying to get to 1/3 dose. Will take me 9 mos. to get thru 3 month protocol. Closing in on almost 1 yr. with diet, and 5 mos. with practitioner. Still have faith but losing hope. How long can I keep this up? the money, the struggle, not working, live alone, etc. Will run out of money soon. Family (live in another state) is going to help for now, but I'll just be a money pit. I'll try to stay with practitioner for one year. That'll be about 20 mos. on SCD. Will have to make a decision by then. MUST see some improvement with my life. Thanks. Emaciated at 6 feet tall, 130 lbs. Suffering every night (and day a lot too) for 25 yrs. Sometimes not as bad, sometimes bad. Alternative medicine is my last hope.

Regards,
Mike

Reply

Lori Jo Berg September 9, 2014 at 6:30 pm

Hi Mike, thank you for reaching out and sharing your story, I know it can be hard. Unfortunately, some people do not heal as fast as others and it can certainly be frustrating. If you feel you need a different physician, you can search for one here: http://scdlifestyle.com/practitioners/ I encourage you to keep up the fight and continue to battle.

Reply

Anne September 10, 2014 at 8:45 pm

Hi Mike,
I am so sorry to hear of your struggles. My daughter and I tried all kinds of things that were recommended for her Ulcerative Colitis, but nothing helped. We followed all of the rules and the doctors actually accused me of intentionally trying to harm my daughter to bring attention to myself!! Every time we had an “expert” recommend something new that was certain to work it actually made her worse.
So… I did a lot of research. We basically decided to
1) load her really high with healthy bacteria. She took x8 VSL #3 probiotics for 1 year, then x4 VSL #3 probiotics for 6 months and now x2 VSL #3 probiotics for the past 6 months. We plan on her taking them for a while still. Please check out the educational information on their website (www.vsl#3.com)
2) daily Vitamin C, Vitamin D3, B12 Complex, Vitamin B shots monthly for one year, and Androset (to reset her adrenal gland)
3) Followed the FeinGold Diet (http://www.thehealingtouchtherapy.co.uk/contentextra.asp?ContentId=12) I realize that this is most spoken about for children with ADHD and behavioral disorders, but these foods are the primary foods introduced to a toddlers diet. They are easy on the digestive tract and contain few antigens and low levels of salicylates. Salicylates are natures pesticide. They are produced by plants to ward off pests and kill bacteria. The injured gut can be VERY sensitive to these.

My daughter began improving immediately the several times that we implemented this approach. Thing is that we would learn about a “miracle” cure or medicine and try it. Then she would get worse!!! Most of the holistic medicines are strictly forbidden on the Feingold Diet.

She takes Lialda now because she just started college and we wanted to be careful.

Anyway, long story… short is that the intestines/ colon can heal but it takes a long time and a lot of caution. My daughter wrote a book about her experiences, maybe you can find some help in it. “I’mpossible: my personal journey of living with Ulcerative Colitis”.

Much love and kindness to you.

Reply

Joann Trask September 8, 2014 at 10:52 am

Thank you for this story, it’s so helpful to hear positive stories. My daughter was diagnosed with UC in April of last year right after her 21st birthday. While she was in the hospital we read up on the desease and all the horror stories that other had gone through. I found the breaking the vicious cycle and Jordan’s book on how to break the diet down we started cutting out the bad foods in the hospital and when she got out we both started the diet. I figured she needed someone to go through it with her. My daughter and I followed the diet word for word and as of today we are still following the diet we call it a life change and a healthier way of life. My daughter is drug free and living a happy productive life she works and goes to school we are blessed to have found Jordan’s books. Thank you for showing what good lives people with these deseases can have just with changing your diet. This is just a short version of my daugters story. I hope it can help others too.
Thank you again for your success stories they really make a difference.

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Anne September 8, 2014 at 5:26 pm

My daughter has Ulcerative Colitis and suffered through 4 years of high school until we found what works for her. We think she may not be so unique. The SCD was not successful for her because she cannot eat EGGS and also was extremely sensitive to any foods that had a high salycilate content. Well… she is doing great now!! Follows her diet, takes probiotics, and because she is a freshman living in the College Dorm takes Lialda as a precaution and for peace of mind. She wrote a book “I’mpossible: my personal journey of living with Ulcerative Colitis”. Note the play on words! She went from “impossible” to “I’mpossible”.

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