Ulcerative Colitis Tips


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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

Mayantuyacu in Peru

manchinga

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

Waterfall at Mayantuyacu

beds 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.

sleeping before purge

Before the purge

Pablo’s dad washing some clothes

tucan in peru

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

jungle Mayantuyacu Peru

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 Mayantuyacu Peru

Plant therapy at Mayantuyacu

Healer Juan Flores 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)

 

popsickle in the hospital

“The best thing in the hospital”

first surgery remove colon

first surgery to remove colon

nose tube after surgery

Nose tube after first surgery “not enjoyable”

ostomy

Getting used to the Ostomy

Going for second surgery to create jpouch

after j pouch creation

Post J Pouch creation

And the best picture for last:

Pablo in Mexico

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)

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j-pouch, Mayantuyacu, plant therapy

27 Responses to Thank You UC – Pablo’s Incredible Story

  1. Adam
    Adam March 12, 2017 at 10:09 am #

    Pablo,

    A massive thank you for sharing your story with all of us.

    I can’t thank you enough for putting your life out there for all of us to see and read, and wishing you and your family (especially your father for cleaning your for sure stinky underwear down by the river:) an awesome start and rest of 2017 and well beyond.

    Take care, and thank you for all your thoughts,

    Adam

    • Pablo Romero
      Pablo March 12, 2017 at 10:22 am #

      Thanks Adam! For me, putting it all out means more authenticity in our interactions with each other. While I haven’t participated much in the past, your site (and everyone who’s shared their stories) has been super helpful for me in my journey. So again, thanks to you and the community you’ve created.

      As for my dirty undies, yeah, I bet my dad didn’t think he’d be washing his son’s at age 35 haha. He’s my hero. A huge support and inspiration for me.

      Take care!

  2. Rick March 12, 2017 at 10:43 am #

    Hey Pablo, a great, inspiring story. How unique is every IBD sufferer’s journey.
    Thank you so much for sharing a good deal of yourself!

    • Pablo Romero
      Pablo March 12, 2017 at 2:38 pm #

      Thanks Rick! The uniqueness of everyone’s journey was definitely a hard lesson learned. I remember getting so frustrated when things that worked for others, didn’t do anything for me. That being said, I’ve learned so much from trying a lot of different things, and now I get to apply some of those learnings today (diet that works for my body, changing the way I exercise, mindfulness etc.). Thanks for reading :).

  3. Ioanis John Nikolaou March 12, 2017 at 12:32 pm #

    Thank you so much for this article. I am 1 year into my UC journey and found your story spoke to me. I have the same fears and anxiety you have and my anger is ruining my relationships. This quote will be printed and go with me wherever I go “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.”

    Thank You

    • Pablo Romero
      Pablo March 13, 2017 at 8:19 am #

      Hi Ioanis, and thanks for your kind words. Our loved ones are usually the ones at the receiving end of our frustrations. Practicing mindfulness and being grateful has made me a happier and better person. Don’t get me wrong, we still have our moments but they’re different now. I talk about my frustration, and together we look for ways to deal.

      One thing I left out as a treatment is seeing a psychologist with my wife. It allowed us to learn new things about each other. When you’re putting so much effort into your personal life (e.g. trying to heal, working, finding new interests), your relationships can change. In short, therapy is helping my wife and I reconnect with one another so we can empathize and understand what we were each going through…something we weren’t doing well on our own.

      It’s not always easy to accept help, especially from a psychologist or the like, but the way I see it – it’s just like doing exercise or following the right diet for your body. You need to exercise and expand your mind.

      Good luck in your journey. There’s something right for you out there so keep trying.

      P.

  4. Chris March 12, 2017 at 12:38 pm #

    I love your comments about being vulnerable and authentic in your relationships Pablo! You are an inspiring young man. I also like your honesty when you say you’re still working on the spiritual aspect of your journey . In the ups and downs of life cost by just being born in sinful bodies , there is only one who can give us peace in the midst of our trials . Jesus said, I am the way the truth and the life ,no man comes to the Father except by me. He can deliver from the greatest anxiety, oh where will I go when I die” . Just call on him Pablo- no other religion in the world has a Savior that can deliver me or you from our sins that we are born with . ” All have sinned and fallen short of the glory of God ” The Bible tells us if we “confess with our mouth Jesus as Lord and believe in our heart God raised him from the dead we will be saved Pablo . He Will give you peace in your pain – and may fully delivery you from it ! Thank you for your encouraging story !

    • Pablo Romero
      Pablo March 13, 2017 at 8:21 am #

      Hi Chris,

      Thanks for sharing more about your faith. I know this has been super powerful and healing for many.

      P.

  5. Melissa March 12, 2017 at 1:40 pm #

    Thank you so much Pablo for sharing your experience and photos and giving a happy human face for us to relate to (after undergoing the “j-pouch”). Thank you for the honesty and inspiration! Wishing you health and happiness!

    • Pablo Romero
      Pablo March 13, 2017 at 8:24 am #

      Thanks Melissa! I’ll keep you guys posted on how the full surgery goes. My last one to reverse the stoma should be happening in mid May. I have to say, I’m a bit nervous but also excited at the thought of my new life…made a big list of things I’m going to do (maybe differently, but with excitement and positivity). Wishing you all the best in your journey!

      P.

      • Melissa March 22, 2017 at 5:09 pm #

        Thanks Pablo :) You will certainly have many people thinking of you and sending warmth and well wishes this May!

  6. Bridget March 12, 2017 at 1:58 pm #

    Thanks for sharing! I don’t feel so alone when I read stories from other people with UC

    • Pablo Romero
      Pablo March 13, 2017 at 8:25 am #

      You’re not alone. Adam has created an amazing community here and there are a lot of people who care about you (people you might not even know) :).

  7. N Cooper March 12, 2017 at 2:50 pm #

    Hello all
    Our stories are intense and so heart wrenching
    Speed forward
    I ended up with a pouch a
    BCIR
    It’s great
    I became a RN after colon removed
    Strange
    I don’t think I’d be the person I am without
    UC is so humbling
    My daughter, my neice and my nephew all have it
    In 1891 my grandmothers sister had UC
    And her sisters daughter had UC

  8. Mariela Andrews March 12, 2017 at 5:43 pm #

    Pablo thank you for sharing your story. I have a son suffering with UC. I wish you the best and a complete recovery from your surgery.

    • Pablo Romero
      Pablo March 13, 2017 at 8:53 am #

      Hi Mariela. I can only imagine what it’s like to have a child going through this. I hope everything works out. There’s something right for each of us out there.

      • Mariela Andrews March 13, 2017 at 2:24 pm #

        Pablo thank you for your reply. Please keep us posted. Best wishes!
        Mariela

  9. Andrea March 13, 2017 at 4:41 am #

    Thank you Pablo for sharing your story. What a journey! And thank you again Adam for ‘I have UC’, it makes you feel less alone. The physical journey with UC is only a part of it, the emotional and psychological and, yes, spiritual journey is ultimately where I feel I have grown the most. From the disbelief, the slow dawning of what UC meant, the rage – I threw all my toys out of my pram, I can tell you! – then gradually the learning to listen to my body, eat for a healthy life. I’m a different person. So grateful for the support from my husband and friends, and so much more aware of what others might be going through in their lives too, that you can’t always see.

  10. Safaa March 13, 2017 at 6:51 am #

    Thanks Pablo for your story! I am wondering how are you doing after the surgery? If you don’t mind sharing with us! My daughter is going through the same surgery! I wish all of you the best!

    • Pablo Romero
      Pablo March 13, 2017 at 8:50 am #

      Hi Safaa. I don’t mind sharing at all. I was just thinking about this the other day.

      Here are some thoughts I have after going through my second surgery (I had to have it done in three steps):

      :: The first surgery was harder to recover from (I believe this had to do with me going in pretty sick)
      :: I got two infections (an abyss that required drainage and antibiotics for my incision)
      :: My bowels didn’t work well after surgery, so I needed a nose tube to empty my stomach
      :: This was uncomfortable at the time, but not that bad when I think back
      :: I was in the hospital for about 15 days
      :: Strongly recommend getting up and walking as much as possible
      :: This helps a lot with the gas which can be painful at the beginning
      :: I found chewing gum also helped me
      :: Sleeping on my back was hard for the first two months…I slept on a recliner
      :: I was good to go and running/working out within three months
      :: I’m competitive so it was hard for me to take things slowly…but I did and that helped me avoid injuries like hernias (started with walking, body weight activities, and went from there)
      :: I used the Osta Belt for physical acvitivity
      :: Finding the right diet and eating pattern was important too
      :: I had home care to help with the incision and that was helpful
      :: Only had one leak during this period (faulty bag)

      Things were/are a bit different with my second surgery:

      :: I was discharged fairly quickly after three days
      :: My incision got infected and had to be opened to let heal (in the picture)
      :: My surgeon said this is the fastest way for it to heal and so far, he’s been right
      :: Problem is that the incision is close to the stoma so it’s hard to seal the ostomy bag correctly
      :: I have to change it more often or it leaks (every one to two days for now…until the incision heals)
      :: The stoma is also not as good (in that it doesn’t protrude out as far) so irritation and leaks have been a problem for me in this first month
      :: I didn’t get home care this time around
      :: I used a silver guaze called Aquacel AG which really helped to drain the incision for healing
      :: Felt like I wasn’t as well informed with the possible after effects, so here’s what I went/am going through:
      :: On day four, after being discharged, I woke up and noticed some blood loss from my behind
      :: This is supposedly normal as the j pouch area heals and drains (I bought adult diapers for sleeping but it only last 2-3 days)
      :: Once in a while, I need to go to the bathroom to release mucous that is now forming (which is natural) – I noticed the quantity depends on the food I eat (I’m staying away from dairy for now)
      :: Because the stoma is not great, I’m noticing more irritation around it (I bought thin wafers and I’m trying to away from anything that gives me liquid stool as that causes the most irritation…immodium helps too
      :: Also a powder for the irritated skin helps (also helps to dry the area before applying the wafer)

      Sorry is this is too long of a response and not well put together (I’m sneaking it in during a coffee break). I might even be missing somethings. I hope this helps your daughter. She can always reach out if she has any questions. Good luck!

      • Pablo Romero
        Pablo March 13, 2017 at 9:00 am #

        Hi again Safaa,

        Just remembered a couple of more things…

        1. I had a catheter that went in while I was under. Coming out was relieving and a bit uncomfortable but fast…not sure what it’s like for women though

        2. Recovery can be hard sometimes (e.g. set backs, frustration, etc.). I’m getting better by the week and know that I’ll recover. That’s the thing to keep in mind.

        Okay, I’m done :)

        • Safaa March 13, 2017 at 2:42 pm #

          Thanks Pablo so much! I wish you the best and wish all who are suffering with this the best of health!

  11. Afshan March 13, 2017 at 7:09 am #

    Hi Pablo, Your story is encouraging and thank you for sharing it. Inspiring stories always motivate and help all of us to understand the power of the mind.

    Best of luck,

  12. Ben March 21, 2017 at 3:24 pm #

    Hi, Palo:

    Thank you very much for sharing your story with us., I have tried SCD for a couple weeks and it didn’t work for me either. prednisone (40mg) per day is the only thing goodles for me but it comes with very bad headache.

    Ben

    • Pablo Romero
      Pablo March 21, 2017 at 3:48 pm #

      Hi Ben! Prednisone was double-edged sword for me too. Take it from someone who was on it too long, it can do some damage. Keep fighting the good fight and trying to figure what works for you. There’s some for you out there.

  13. Laura F March 25, 2017 at 3:27 am #

    Hi Pablo! Thanks for explaining the pics, that you had an abscess. I was wondering about that. I’ll be praying for you and your doctors, for a successful surgery in May. Take care until then.

  14. Pablo Romero
    Pablo April 10, 2017 at 10:25 pm #

    Thanks Laura! And sorry for the late reply. My final surgery is planned for mid May. A bit nervous but lots of excitement and positive visualization in there too :). Hope you’re doing great yourself. P.

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