Thank You UC – Pablo’s Incredible Story

Pablo with his wife just a few weeks ago in Mexico

Meet Pablo:

I’m a first generation Canadian (mother is from France, father is from Peru). As far back as I can remember, I’ve always wanted to be a husband and dad. I dropped the veterinarian dream when I worked at a few clinics and a zoo as part of a junior high school program. I like to stay busy and I like change. My wife leaves with the kids every couple of months so I can reorganize the house. I’ve lived on the other side of the world and got married over Skype with our parents spread out over three continents. I do not have cable TV, but I love watching movies – literally every genre…except musicals…sorry La Lal Land. I played soccer competitively for half of my life but I’ve never followed sports. I think I won my wife over with this one. I thrive in vulnerable and authentic relationships. And, I’ve witnessed and experienced a few ‘miracles’ which have forever changed my life. More on that in my story.

Symptoms:

Medically, I guess I’m considered cured and symptom free since having my large intestine removed. I’m currently recovering from my second surgery, where they reconnected my small intestine to my rectum in J Pouch fashion. So, symptom-wise, it’s mostly pain management from the incisions, dissipating rectal bleeding from the J Pouch creation, and night sweats while I heal.

Other than that, it feels amazing not to have all the other symptoms I’ve lived with over the past seven years (I wasn’t able to find remission once). And it’s even more amazing not being on any more pharmaceuticals. When I had UC, my symptoms included:

• Extreme levels of anxiety (depression)
• Frequent bowel movements (all diarrhea and about 20-25 times a day)
• Bloody stools
• Joint and muscle pain (lower back and knees)
• Night sweats
• Flu-like flare ups
• Body weight fluctuation
• Lethargy
• Loss of focus
• Skin rashes

Pablo’s Story to His Eventual Colon Removal Surgery:

I’m in a state of ‘pesado’, a dream-like state locals describe as having a weight upon you. I’m trying to stay calm; trying not to fight it like I’ve always done. I can see everything around me in the room. I want to scream out to my dad who’s napping in the bed beside me, but I know it won’t work. You can’t move unless your dream or conscious allows you to. You can’t escape. So, I let go and travel deeper than I’ve ever gone before; to that scary place that harbours my inner ‘demons’. It turns out the plants I’m using in my treatment want me to face a big one. Its name is anxiety, and today I’m finally ready to acknowledge and embrace it.

Pablo flying with his dad to Peru

It’s been one week since my dad and I left Canada to come to Mayantuyacu– a healing retreat in the Puerto Inca Province of Peru. We’re on day four of a 15-day ‘retreat’, and I’ve already told him numerous times that I want to leave. This place is far from my definition of a retreat. And it’s not because of the tasteless diet, inescapable heat (31 degrees Celsius/88 degrees Fahrenheit), lack of electricity or cellular range, millions of insects (including the five tarantulas in our tambo), or the 2-hour vomit purge I went through on day two…to name a few. It’s because, when I think about my buddy Merriam-Webster’s definition of retreat – an act or process of withdrawing especially from what is difficult, dangerous, or disagreeable – my experience at Mayantuyacu was anything but that for me. I learned to embrace versus withdraw. I became grateful and, more importantly, mindful of something that has been blocking me from fully living my life. Ironically it took me getting very sick to use the strength I’ve always had to shift my mindset, and ultimately find happiness. For my fellow UC’ers, it also means less anxiety-driven visits to the bathroom.

Mayantuyacu in Peru

using Manchinga for abdominal pain (at the retreat in Peru)

My surroundings, while raw and dangerous, were at the same time mesmerizing and healing. A magical waterfall that electrified you with energy the moment its water touched you, the abundance of amazing plants and animals playing their role in the circle of life, and the wonderful people from all around the world, sharing their stories, love, and support for one another. Lyme disease, cancer, addiction, depression, broken hearts. We were (are) all connected by pain and suffering, and the power to heal and learn more about ourselves.

Waterfall at Mayantuyacu

beds at Mayantuyacu

Pablo’s roomate during the retreat

During my stay at Mayantuyacu, life became simplified and yet so deep and fulfilling. Most of us would wake up when the sun and rooster came out, around 6:30 am. The rest of the day was something each person could pursue alone, or in the company of another or others. My dad and I were a team. My love for (and understanding of) him is so much stronger because of this journey. We would eat breakfast, wash ourselves and our clothes in the stream, go for a walk along the boiling river and jungle, or nap in the hammocks of the Maloka (place of ceremony). Then it was lunch, which for me was usually followed by hours of lying in bed thinking, dreaming, writing, doing nothing. There were no distractions. I was there for me and allowed myself to let go and live in the moment. Dinner was generally the tastiest (sometimes we were treated with chicken and papas fritas) and every second night at 9:00pm, guests and locals would participate in a ceremony which consisted of an Ayahuasca journey, inc antations (speaking to the plants), meditation, and discussion that sometimes carried on until sunrise. For me, I received clarity, focus, and awareness.

Before the purge

Pablo’s dad washing some clothes

Another one of Pablo’s roomates in Mayantuyacu (Nice looking Tucan eh..)

the surrounding jungle in Mayantuyacu, Peru

If you take a moment to reflect that 25% of modern pharmaceuticals are derived from rain forest plants, and currently less than 1% of tropical plants have been analyzed for medical purposes, maybe you can understand the hope I felt when I decided to try plant therapy. While at Mayantuyacu, I became very close with someone who had been suffering for more than 15 years from a disease similar to UC. I can’t remember the name of it but, in addition to her gastro intestinal system, her symptoms affected her reproductive system. I spoke with her a month ago and she told me that she’s symptom-free for the first time in 16 years. Is it a miracle? Will it last? Would it have worked for me if I would have stayed longer? While I sometimes wonder if it could have worked for me, I’m authentically happy with the path I have chosen and have no regrets. I’m in a good place today. I came back with a greater level of awareness and acceptance, which means that anxiety no longer cripples me.

In short, I’ve learned to visualize anxiety as something that comes and goes and therefore does not define me or my life.

This shift in mindset has opened doors for me mentally, physically, and spiritually (still working on this one). I used to feel like my life was being stolen from me, piece by piece. Today, seven years after being diagnosed with Ulcerative Colitis, I feel very different. I’m more mindful and grateful for all the amazing relationships and experiences I have in my life. I’m building something special with the people I love.

Plant therapy at Mayantuyacu

Pablo’s Healer named Juan Flores from Mayantuyacu

My story might sound a bit extreme and maybe crazy to some people. Heck, if you had met me six years ago and asked if I’d consider plant therapy in Peru, I probably would have politely responded ‘no’, and then made up some creative excuse to escape our conversation. That’s why I’m so grateful for the amazing people in life. From my family and friends (especially my wife), to my doctors and employer, they have all supported me, my decisions, and the journey I’ve chosen to create. So, if you’re interested in this story, my advice is to do as much research as you can – read, listen, ask, digest. If you have a question, I promise to do my best to respond as a thriving and fellow human being.

Treatments Medications Alternative Therapies (Such as Fecal Transplants)

I’m currently only on pain meds (T3s), following my second surgery. I’ve been medication free since January 2015. Surgery had always been the last option for me and just when I thought I was there, another clinical trial or natural therapy would show up. My decision to have surgery was driven by a few considerations: I didn’t want to be on medication for the rest of my life, my anxiety levels were becoming destructive (I was a 20 to 25-times-a-day-and-need-to-get-there-in-5 to 20-seconds-guy), and my two kids had only known me as sick daddy.

If there’s one thing I’ve learned throughout this journey, it’s that we’re all uniquely created and therefore different things will (and won’t) work for everyone the same way. Here’s the list of things I’ve tried:

Pentasa (2010) – worked to reduce blood output during the first few months, but I still experienced a lot of flare ups and it didn’t work once my UC went from moderate to severe (didn’t notice too many side effects)

Prednisone (2011-2015) – this was the only thing that brought me out of flare ups, but it’s also something I will never touch again…ever (so many side effects including moon face, terrible mood swings, night sweats, deep depression, decreased bone density, and when I came off it I got massive headaches at the base of my skull, flu-like symptoms, lethargy and chills that lasted for about a week, and a super itchy rash along the mid-section of my chest that lasted for three months; it was torturous)

Remicade (2014 and 2015) – didn’t do anything the first time, so we tried again when they were better able to read how quickly the medication passed through your system, which again didn’t work (I would always feel feverish and have shortness of breath for the first two days after an infusion, and on one occasion my heart rate went up and I felt a tingling sensation on my butt)

Asacol (2011) – didn’t do anything for me (I can’t remember any side effects)

Methotrexate (2012) – didn’t do anything for me (made me super nauseous and gave me cramps)

Azathioprine (2012) – didn’t do anything for me (I can’t remember any side effects)

Vancomycin (2012) – didn’t do anything for me (I can’t remember any side effects)

Entyvio/Vedolizumab (2015) – didn’t do anything for me (didn’t get the fevers like Remicade though)

Codeine (2015) – helped reduce bowel movements slightly but made me super drowsy

Clinical trials (2012 and 2015) – both didn’t do anything for me (I can’t remember any side effects)

Fecal Matter Transplant/FMT (2014) – Participated in a clinical trial at the University of Alberta but never noticed any improvement (no side effects)

Diets (2012-2016) – Specific Carbohydrate Diet (SCD), FODMAP, Vegetarianism, Paleo, Juice fasting, Fasting, Holistic Nutrition plans, GAPS, even lived and ate in Europe for a while (I’ve learned a lot about my physical and mental relationship with various foods and for me, diet makes a big difference)

Other natural remedies (2012-present) – I’m missing some here but various homeopathies, supplements (Omega 3, Tumeric, Probiotics, Bovine Colostrum, Greens, Slippery Elm Bark, Juice-Plus, Vitamin D…), Traditional Chinese Medicine, Meditation, Osteopathy, Hypnosis, Enemas, Pure North Synergy program, BodyTalk, Massage Therapy, Medicinal Cannabis (I still use CBD oil for pain and insomnia), and Plant Therapy in Peru

J Pouch Surgery (2016-present) – broken down into three surgeries (the first was to remove my large intestine, the second was to create the J pouch, and the third will be to close-off and reverse my stoma)

“The best thing in the hospital”

first surgery to remove colon

Nose tube after first surgery “not enjoyable”

Getting used to the Ostomy

Going for second surgery to create jpouch

Post J Pouch creation

And the best picture for last:

Pablo with his wife a few weeks ago

written by Pablo

submitted in the colitis venting area

(please feel free to share Pablo’s story and like it on facebook)

Save

Save

Pablo Romero

My name is Pablo and I’m so grateful to be married to an amazing woman who has given me two awe-inspiring kiddos (four, if you count our dogs). When I’m not with them, I’m accountable for employee experience at an awesome organization that helps humanize the world of work.