Monday, May 21, 2018

My Crohn's Journey - The Beginning



I knew something was wrong when I started having bad cramps after eating. That was the first sign. Then, I started losing weight without trying. I'm not complaining about that one since I needed to lose weight, ha! I lost about 70 lbs within 6 months which isn't a healthy weight loss especially when you're not even trying. I was also nauseous all the time and having diarrhea all the time. I had no energy at all, and I would throw up a lot just walking a few steps. I decided to go to the doctor.

My primary care physician referred me to a hematologist because my red blood cell count was elevated. She ran so many tests on me and eventually told me to see a gastroenterologist because she said my symptoms sounded like Crohn's Disease. I had to have a colonoscopy and endoscopy. The prep was the worst part! The procedure itself was really quick and easy! After a biopsy, it was confirmed I had Crohn's. That was in November 2017.

I was urged to see a GI (gastroenterologist) as soon as possible. However, due to my husband changing jobs, we wouldn't have insurance for three months, so I had to wait.

In March, my symptoms got worse until I couldn't stand it any longer. I was severely bloated. I couldn't even stand up straight! I had intense abdominal pain and no appetite. It hurt so bad to move. My nausea and vomiting had gotten worse too. Finally, after two days of all of that, I went to Urgent Care. Urgent Care told me to go to the emergency room because they don't deal with stomach issues as it may be something serious. Off I went to the ER.

After six hours of being poked and prodded and having to wait, I was told I had a fistula on my ileum connecting it to my intestines (I forgot the exact terminology). I was also told I was malnourished and that my Crohn's was out of control. I was admitted to the hospital. There, I was put on a strong antibiotic through an IV for a day or two as well as a high dose of steroids. I was in the hospital for 3 nights...I was admitted on Saturday night, and I was released on Wednesday afternoon.

Prednisone (the steroid I am taking) has worked wonders! It took away almost all of my symptoms, and I could eat again, but it made me really hungry! I started out at 40mg of Prednisone. I was meant to taper off of them by now, but whenever I get down to 10mg, but symptoms return, so I have been on 15mg for awhile. I've been on steroids since March 24th!

My GI has also prescribed Humira for me. He wanted me to do Remicade, but my insurance denied it saying they wanted me to try Humira first. I think the Humira is working. It's still early days since I've only taken the loading dose. I did four injections in my stomach the first day, and two weeks later I had to inject myself twice which I did in each thigh. The thighs are so painful! Humira burns/stings while injecting. I wish it didn't, but oh well.

I am thankful so far for my medical team (both past and present) as well as my friends and family who have supported me so far!

Now I want to show off my really awesome Crohn's Awareness rubber bracelets!


How awesome are those bracelets! I'd like to thank @CrohnsDirectory on Twitter for those awesome rubber bracelets! Be sure to check out the Crohn's Directory website here. There's quite a few resources/websites on there. The bracelets you see here will also be available for purchase on the site here pretty soon!

If you are new to the whole Crohn's thing or not sure what Crohn's is fully about, you can check out the Crohn's & Colitis Foundation by clicking here. This website has a plethora of information including local chapters of the CCF. It is very informative and is one of the first places I turned to when I was first diagnosed. They will also snail mail you info or you can choose to have it emailed to you. Seriously, it's a great site!

A great online support group I've found comes from My Crohn's and Colitis Team website. The site is full of others who have been diagnosed with Crohn's or Colitis. It's a great place to meet new people and get support. Plus, there's also info and what not. You can check out the website by clicking here.

Anyway, if you have any more questions, feel free to ask. I'll try my best to answer or find out for you. Thanks for reading!

2 comments:

  1. Thanks for sharing! I was diagnosed as a teenager and because they caught it so early on, I was lucky and have been in remission for over a decade. I hope you get well soon!

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    1. Thanks! Wow, a decade in remission sounds great! I've been in remission since April of this year. =)

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