Wow! It’s been almost a year since I’ve blogged on here. Thankfully, it’s because I’ve been so healthy.
I know I get so many emails and messages via my social channels that I cannot always get to, and that makes me feel pretty guilty. I do my best to get to as many as I can, and to be honest, a lot of it has to do with timing. If you have a question for me, it’s best to email me at firstname.lastname@example.org. I may not get back to you right away, but I read and try to answer everything.
I went through some Instagram DM’s [ones that are in my requested folder] and saw that a girl had asked me about my parasites that I had contracted in Punta Cana. She said that she had a very similar story, which I thought was crazy. Then, last night, I received this email from a mom of an 18-year-old. She’s so incredibly young and is about to start college in the fall.
I’m always so appreciative of these kinds of emails. This is why I’ve dedicated so much of my life to advocacy work and awareness. But, since I’ve now received this question more than one time, I wanted to share my response to this email, since I would say the same to anyone that sends me this.
DISCLAIMER: All names and personal information have been removed for privacy.
“I’m so sorry to hear about your daughter, I truly, truly know the pain. I was unlucky, as I had told my first GI doctor that I had been out of the country, but he chose to ignore that part of the story and continued telling me that I only had ‘Grade 2 ulcerative colitis.’ There are no grades of ulcerative colitis. He was doing all of the wrong tests and blaming me for ‘not taking my medication correctly, or not dieting correctly.’
I had Giardia and H. Pylori. The Giardia caused the most damage, as it can only be caught every 3 days when the parasites shed (so gross). So, sometimes one-off stool samples are not enough, but that is what caught mine, but it took 6 months of stool tests to FINALLY catch the Giardia. That is because you need to do daily stool samples for 3 days in a row in order to catch the parasite, as it randomly sheds. After I learned this, I read as much as I could stomach about Giardia, and I saw that most of the time it is caught by putting a pill on a type of string, and having the patient regurgitate the pill and the pill should test positive for it. By the time my parasites were caught, my entire body, bloodstream, everything was infested with them. I’m not sure what they gave me in the hospital, but it was 2 red pills that made me have a strong fever, which I assume killed the bugs. By this time, I had changed GI doctors. After the parasites were gone, I was officially diagnosed with the correct form of ulcerative colitis (fulminant, pancolitis) and started Remicade. I had already been on prednisone for almost a year.
My advice to you, looking back on everything my family and I went through, is to meet a colorectal surgeon that you trust and has amazing credentials. I totally understand if your daughter wants to try to fight, I was the same way as depicted in my blog. But, please talk to them. And when you do, do not settle for anything less than a laparoscopic total colectomy with THREE STEPS. Do not try to do 1 or 2 steps. I have mentored many patients who now have failed J-pouches because of rushing through the surgery series. I know its tough to think about surgery so early on, but I wish I would have read everything I could about it and been more informed. Unfortunately, this is the reality that we face as UC patients. But, my life with my ostomy and J-pouch was and is 100% better than what I was going through with my colitis and on biologics, steroids, etc.
I do a lot of advocacy work, and on a panel that I spoke on for Pfizer, I had an epiphany when their GI medical director gave his speech. He talked a lot about autoimmune responses within the body and what triggers those in people. He gave us an amazing analogy. There are people who may get infected with the flu, or a virus, (or a parasite, like us), that turns on the body’s autoimmune trigger. Just like a light switch. Some people’s bodies are able to turn off that light switch once the flu, virus, or parasite is cured. Those who have a stronger autoimmune response in their body cannot turn off this light switch. My body never turned off the light switch that was turned on by the parasite. Something triggered your daughters autoimmune light switch and her body can’t turn it off.
No one knows why autoimmune diseases cannot be cured, or what truly causes them. Personally, I believe it’s genetic. My family has so many autoimmune diseases in our gene pool that I couldn’t even count on one (or two) hand(s). The above is a speculation from a doctor that really spoke to me, so I thought I’d share it with you.
I will tell you that I was having SOME symptoms of UC before I went to the Dominican, but they were very, very mild and went away with some steroid use. I truly believe that I always would have ended up with UC, I was just unlucky enough to catch a parasite in Punta Cana that only worsened everything for me.
I hope some of the information I shared above helps, and you can read everything that I went through on my blog, which sounds like you have found. I had another patient reach out to me with the same story as your daughters and mine, so please let her know that she is not alone. If she has questions, feel free to give her my email.
I will certainly keep you both in my prayers. Please stay strong and know that while surgery is not a cure, I am blessed with the most normal life I could have ever asked for with a chronic illness.“
I try not to ruin peoples vibes when they tell me they are going on a vacation that is out of the country. Especially in a third world country like the D.R. If you are, please just talk with your doctor about what precautions you need to take before you go anywhere “exotic.” When and if you do go anywhere in the Dominican, DO NOT TOUCH ANY ANIMAL. I really believe that I contracted this parasite off of either a horse or a goat that I had touched on an excursion that was not inside my resort.
Looking back on these pictures and the fact that we went to this farm makes me cringe…but we were so young! To be fair, I don’t know for sure where the parasite came from. But I know I didn’t have access to clean water to wash my hands after we were at this farm touching these animals.
If you think you have a parasite or Giardia, make sure you are being heard by your doctor. Get second opinions. Waiting or having a doctor that doesn’t listen is not worth the end result. Trust me.
Punta Cana was a really fun vacation and I went with my best friend from college (I’m also close with his sister, who is pictured above.) I never felt sick on the vacation and didn’t start feeling the symptoms of everything until about 3 weeks later (and it came on STRONG.) Punta Cana is beautiful. Breathtaking. I’m very thankful for the opportunity to have gone on this trip and see such a beautiful beach, but it definitely has impacted my life forever.