Crohn's Disease Forum » Your Story » Erica's Intro Story

04-12-2017, 11:59 AM   #1
EricaRN81's Avatar
Join Date: Aug 2014
Location: Jensen Beach, Florida

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Erica's Intro Story

Good morning friends...

I think it's time I introduce myself. My name is Erica. I'm 35 years old. In 2007, I was in nursing school starting my internship. I started to get very sick with diarrhea 6-7 times a day. I didn't have pain. But no matter what I ate, it would go right through me. Was treated with Cipro from my family doc and nothing changed. Finally saw a Gastroenterologist who diagnosed me with C Diff. I was started on Flagyl and Xifaxan. I was well for about a year. A year later, the same symptoms came back. Diarrhea allll the time. This time I was working full time as a day shift nurse in a hospital. Having the runs all day was VERY inconvenient. Doctor decided to do a colonoscopy and said I had C Diff again and it was VERY ugly..said my intestines looked carpet burned. They started me on oral Vancomycin. I eventually got better.

In 2010, I got sick again. I'll never forget. I was dating my now husband and it was Thanksgiving Eve. My stomach started to hurt. I thought well, maybe I had too much food...but something didn't quite feel right. I got scared. And sure enough, the days that followed, I became very sick again. Diarrhea ALL the time. Low grade fever. But not really pain. I could eat NOTHING without being in the bathroom within 45 minutes. I lost a lot of weight. I was having difficulty at work. I had an accident in a patients room. Enough was enough. I saw a different GI doctor (bc I had since moved). He did a colonoscopy with biopsy and said "Yep, Crohn's disease. Terminal ileum and ascending colon". I started Prednisone and every time I tried to taper off ( was a year long process, the diarrhea would come back). I tried Imuran. It made me incredibly nauseous. So, then we went to Remicade. Remicade was a total game changer. I got well very fast. I was on Remicade for 4 years.

The only problem I had with Remicade was every single time I went to get my infusions, I would have anxiety attacks. When they gave me the pre-meds Solumedrol and Benadryl IV, it would make my heart race and I would feel so faint. It was an AWFUL feeling. But, I would always push through. My treatments were in a doctors office with other Crohns' patients.

We eventually left Memphis and moved to south Florida. My treatments here in Florida could not be done at a doc office. I had to go to the cancer center and sit with chemotherapy patients to get treatment. This really played with my head. I would come up with the most awful thoughts while in there watching these sick sick people. My anxiety became really unbearable. I started taking Lexapro. One day, I had a major panic attack on my way to treatment. I had to pull over on the side of the road and have my husband come pick me up and get me home. It was severe. I decided that day "no more remicade". And I quit. Cold Turkey.

15 months later, here I am in a horrible flare. It took me 15 months to get here. I have had horrible cramping pain, diarrhea 7-10 x a day. My doctor moved away so I had to find a new GI. It took me over 5 weeks to get an appointment. She put me on Prednisone 40 mg daily and ordered Humira. I've been on Prednisone for 9 days now with some improvement. Of course, I have all the awful side effects. I can't wait to start Humira. I'm just praying it will work for me. I know that I will be much happier giving myself injections rather than sitting in a cancer clinic with pre-meds that kick me into anxious overdrive. On one hand, I am so MAD at myself for walking away from Remicade. It was my cure. But, I just couldn't do it anymore.

I am also considering starting the SCD diet. I just ordered a Yogurmet yogurt maker last night off Amazon. I just WANT TO BE WELL again! I am so sick of being in pain, not being able to fully commit to my family/friends and job. Not having the energy to take care of myself as I need to. So, I'm glad I found this place. It feels safe and welcoming. Thank you to whomever reads my story. I am grateful that we can all reach out to each other.

Nice to meet you! Erica.
04-12-2017, 12:17 PM   #2
Join Date: Apr 2017
Location: Atlanta, Georgia

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Hi Erica,
I'm so sorry to hear about all of that! I can't really speak on the medicine you're on or have been on in the past, as I've never taken it, but if you're wondering about diets, I can try to help you there.
I'm not on the SCD, but I have talked to my dietician about it, and she recommended that I take vitamin supplements to make sure I'm getting all my vitamins. She especially recommended Calcitrate, but you may have to have a prescription to get it, I'm not sure. I'm currently on an 80/20 diet, where 80% of my calories come from meal replacement shakes like Boost and Ensure, and the other 20% is from any foods. It's been working for me so far!

Hope this helps and that you feel better soon!
04-12-2017, 12:21 PM   #3
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Scipio's Avatar
Join Date: Oct 2015
Location: San Diego

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Hi and welcome.

You are fortunate being in south Florida because one of the top IBD specialists in the US, Dr. Maria Abreu, is located there - at the Univ. of Miami. If at some point you are considering a new doc or a second opinion you may wish to consult with her.
04-12-2017, 12:42 PM   #4
EricaRN81's Avatar
Join Date: Aug 2014
Location: Jensen Beach, Florida

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Thank you! I had no idea about her. I'm actually going to see a specialist at Cleveland Clinic in May named Dr. Roger Charles. I will certainly look into this other doctor you recommended as well. Thank you very much!
04-12-2017, 02:07 PM   #5
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ronroush7's Avatar
Join Date: Oct 2013
Location: vienna, Virginia

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Welcome. I hope the Humira works.
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.

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