Crohn's and Pregnancy
crohn's disease, Uncategorized

Patient Behind the Plant: A Mother’s Story of Survival

When I sat down to interview Lauren Leiva, I knew right away that I was going to connect with her. We’re both Florida girls, yoga teachers, health advocates, and most importantly, we both have Crohn’s Disease.

Crohn's and Pregnancy

Our journeys couldn’t be more different, yet our struggles, fears, anxieties, and strengths are exactly the same.

This is Lauren’s story and she wants you to keep an open mind.

“I try not to judge others and what they don’t know,” said 34-year-old Lauren Leiva of Tampa, Florida.

Lauren has Crohn’s Disease and like we all know, there is no cure. The 1.6 million patients in the United States with Inflammatory Bowel Disease can only manage their symptoms, usually with risky medications.

“My Crohn’s was controlled, but not in a good way under all these medications. I was losing my hair, I got osteoporosis, I got pseudo rheumatoid arthritis,” said Lauren.

When she got pregnant for the second time in July of 2016, she was cautious. Her first pregnancy with her now 10-year-old son was difficult. Women with Crohn’s Disease have to be heavily monitored as they are usually considered high risk.

“I was told I could never have children with my severe Crohn’s because I was on all this biologic medication. When I got pregnant I took a chance and had my hope. And then my health declined.”

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Crohn's and PregnancyShe was in the hospital for 9 months from July 2016 to April 2017. It was all haze for her because she was put on opioids during her pregnancy.

“Dilauded, morphine, oxy, Ambien, Benadryl. These are all the things they would prescribe me. It’s a vicious cycle of lying in bed taking pills.”

Lauren told herself that once she got out of the hospital, she would find another way. She consulted with Dr. David Berger, her 10-year-old son’s pediatrician and a doctor with Wholistic ReLeaf in Tampa, Florida. He prescribes medical cannabis to his patients which is an approved treatment for Crohn’s Disease in the state of Florida.

“There’s both long and short term benefits from it. So, from a pain perspective we know that the first dose out can bring reduction in pain because of how it calms down the nerves,” said Dr. Berger. “We also know in a longer picture, because of the way it maintains balance and homeostasis in the body, it also can serve as a longer term anti-inflammatory.”

Lauren’s pregnancy was taking a turn for the worse. Her doctors recommended she get an abortion or she and the baby could die.

“I just kept saying the baby is okay. I knew that no matter what pain I was in as long as the baby was OK, I can handle it,” said Lauren.

Miraculously, on September 5, 2016, a healthy baby boy named Alexander Joseph was born. Lauren’s health continued to decline. She was in and out of the hospital for six more months. Her doctor told her that this was her new normal: living on opioids with an unfixable disease.

“For me to hear that was just terrible because I wanted to go home with my family,” said Lauren as tears streamed down her face.” That’s the worst pain in my life when you’re burning alive. Feces just spilling out.”

Lauren eventually found a doctor at the Cleveland Clinic who was able to perform a life-changing colostomy surgery. But, she was put back on pain medicines while trying to be a mom to two young boys and getting her PhD in physical therapy. Finally, she decided to take Dr. Berger’s advice and started taking medical cannabis. Everything changed.

“Immediately it was the best thing ever. It helped me eat, digest, sleep wake up.”

Lauren was able to get off all of her pain medicines and use medical cannabis as a way to relieve pain, stress, and anxiety.

IMG_1992“Left and right I am having people reducing their inflammatory medicines for colitis. I have seen people who are significantly lowering their Valium and other Benzodiazepines and Prozacs and all other medications,” said Dr. Berger.

“It’s not like ‘That ‘70s Show’ where you’re like smoking a joint and laying on the couch eating. I am trying to be an advocate and pave the way that people who have scholarships and doctorate degrees also have conditions they might require medical marijuana,” said Lauren.

“There are occasional cases of addiction, but relative to the opiates, the benzos, relative to any street drug, alcohol, or nicotine, it has much less addictive potential than with all those other things. That’s part of what the re-education needs to happen. This isn’t cocaine. This isn’t LSD. This isn’t heroine. We’re taking care of really sick people,” said Dr. Berger.

IMG_2250Lauren is now on only two medicines. She takes Humira, a common biologic drug used to treat Crohn’s Disease, and medical cannabis. She’s a yoga teacher, personal trainer, nutrition specialist and most importantly, a mom.

“I feel blessed. Being able to have an open mind and do your own research and have faith; it can take you a long way. It’s not like [we’re] sitting at home getting high. [We’re] sitting home getting healthy.”

 

For resources on Crohn’s Disease and Ulcerative Colitis, visit Crohn’s & Colitis Foundation.

To join or donate to my Take Steps Walk for Crohn’s and Colitis team, click here.

xoxo Hilary

diary of a crohn's disease flare-up
crohn's disease, Yoga

My Crohn’s Disease Flare-Up Diary and the Lessons Learned

This last Crohn’s Disease flare-up was a monster. A painful and frightening monster that crept into my life and tried to swallow me whole. Could I have stopped it? The simple answer is no. Could I have taken steps in hindsight to have made the monster less scary? Absolutely. Let’s take a journey together through a severe Crohn’s Disease flare-up.

My Crohn’s Disease Diary 

January through May 2018: The Perfect Storm

I am getting my Remicade infusions every 8 weeks. Feeling great mentally, so I’ve decided to taper off my anxiety medicine called Buspirone. Also feeling great physically, so I am going to slowly start to incorporate gluten and sugar back into my diet. I am starting a rigorous yoga teacher training schedule while still waking up at 3 a.m. every weekday for work at the news station. I just got strep throat and have to go on an antibiotic. I am overwhelmed, cheating on my strict diet, and lying to myself about the onset of some gut symptoms. I believe I can treat this myself and it will all go away. 

May 2018: The Pre-Flare-Up

diary of a crohn's disease flare-up
I look so happy, right? This is when I am starting to feel symptoms, but I am ignoring them.

Yoga teacher training is over and I start teaching right away without any break. I am still waking up at 3 a.m. every weekday for work, but I am not myself. I am angry, judgmental, and ungrateful. I am eating lots of sugar and gluten. I am having mild to moderate gut pain now. I can’t treat this myself anymore. My doctor puts me on 9mg of Uceris, a steroid commonly used for Ulcerative Colitis patients. It’s working, but only for a few weeks. I find out the Remicade is metabolizing in my body too quickly, so there’s no medicine left in my body after a few weeks post-infusion.

June 2018: The Monster Reveals Itself

diary of a crohn's disease flare-up
I am on bed rest, but still smiling!

I feel out of touch with myself. I’ve overworked myself for months now. I am not eating properly, and the Uceris has stopped working. I go to work every morning in severe pain. I am talking on-air during the morning show and I want to crouch down and cry. People are starting to notice. I am bleeding from the gut and I cry to myself at home. I let it get out of hand. Where have I been these past few months? Why did I let it get this bad? I am on bed rest and can’t keep any food down. I have to take 2 weeks off work. My doctor puts me on 40mg of Prednisone and increases my Remicade dosage.

July 2018: A Fresh Start

I am sure you are seeing some major red flags in my diary so far. Maybe there were times you wanted to scream, “Hilary, for goodness sake, help yourself!” I don’t blame you. Here’s the good news: It’s July and I am feeling almost back to normal. I am tapering off the prednisone which did its job. I have also received the higher dose of Remicade which also seems to be working. I’ve gone back on a strict no grain and no sugar diet and have added a pharmacy of supplements with my meals every day. I am slowing down with work and yoga teaching, taking lots of breaks and self-love days, and filling my days with gratitude. The monster is almost completely gone and I feel better than new. diary of a crohn's disease flare-up

Lessons Learned

  1. You have a chronic condition that requires special attention and specific lifestyle requirements. Medicine is life-saving, but it only extends so far. You are responsible for taking care of yourself every day.
  2. When you start to feel symptoms, call your doctor. Do not try to heal yourself. There is no turmeric pill, no special diet, and no yoga practice that will get you out of a Crohn’s Disease flare-up once it begins. The symptoms will only get worse over time unless there is immediate medical attention.
  3. This isn’t your fault and don’t let anyone tell you otherwise. You could be doing everything right from diet to mental health, but your disease could flare-up. Your medicine could stop working. Crohn’s Disease is manageable, but tricky, and you are only human.
  4. You will get through this flare-up, one way or another. There will be times when you feel like you won’t ever come out of it. I am here to tell you that you will. Just hold on and keep fighting.
  5. Push your doctor. Be your own advocate at all times. If you feel symptoms, but your blood work is normal, keep pushing them to help you. If you need more explanations about medicines or treatment plans, don’t stop asking until you get your answers.
  6. You are whole. You are enough. This disease doesn’t define you.
  7. Allow yourself to heal and don’t feel guilty about this. Give yourself plenty of grace.
  8. Eat fresh foods and take your supplements. There is more research out than ever before about the power of diet and Crohn’s Disease.
  9. Let the people in your life know what is going on. They want to help you and you should accept their help. No one fights alone.
  10. You don’t have to pretend like you’re feeling good when you’re in pain. You are not an actor.
  11. Relationships can become strained when we are sick. This is natural and sometimes unavoidable. Find comfort knowing that those who truly love and respect you will stick around. Everyone else isn’t worthy of being in your beautiful life.
  12. Every single human is going through his or her own battle. Never look at others as if they are more blessed than you are. Yes, you have a chronic disease, but it is not the end of the world. In fact, you are living your best life despite this disease.the diary of a crohn's disease flare-up

What lessons have you learned during a Crohn’s Disease flare-up?

xoxo

Hilary Zalla

You may also be interested in: “5 Positive Affirmations to Get You Through a Crohn’s Disease Flare-Up” and “8 Yoga Poses For Bloating, Cramping, and Gas.”