I had the day off from work today, as I was just put on some new medicine that can have some pretty crappy side effects, and I didn’t want to start tossing my cookies at work or anything like that. To be honest, it feels like I’m playing hooky. I am being productive though!! I am getting lots of homework done. And snuggling with Dwight.
Anyway, why am I on this new medication you may ask? (Or, maybe you don’t care, and in that case, feel free to skip this post.)
If you’ve been reading my blog for a while, you probably know I like to complain a lot, haha. You probably also now that over the past year, I’ve had some health struggles and haven’t always felt the greatest. But, finally, in November, everything was figured out. I think I waited so long to post about it because I think I was kind of in denial about it. I just didn’t want to be true. I’ve been wanting to write this post for a while, but just didn’t have the time. I figure since I had the day off, I would get started on it!!
I won’t draw it out, I’ve been diagnosed with Ulcerative Colitis. But I will tell you the story on how this came about. Some of it’s not pretty, but I found that reading stories like these have really helped me, so maybe my story will do the same for someone else.
It all started in April of 2011, when I started getting horrible stomach/abdominal pains. They hurt so bad that sometimes it hurt to walk, and they even woke me up at night. I was going through a busy time in my life with lots of changes, so I brushed it off as stress. After a week, they were gone. I did notice however that every time I ate my stomach would become upset. I tried an elimination diet, eliminating many of the most common foods people are intolerant too. After about 6 weeks, I thought I had my answer. I always had horrible headaches, and took Excedrin every morning. I thought it was the aspirin that was upsetting my stomach.
In August of 2011, I went to North Carolina to work on an Alpaca Farm. After only being there a week, I got hit with horrible stomach pains again. This time, I couldn’t walk, I couldn’t eat, and I couldn’t sleep. I also started having constant diarrhea, back pain, and a fever. After a week of this unbearable pain, I ended up in the emergency room. The doctor’s there did some tests, and told me that although it wasn’t an emergency and didn’t need to happen right away, but I was having a gallbladder attack, and I would need to get my gallbladder removed. I left North Carolina the next day.
Me and Healther, the alpaca!!
When I got back to Indiana, I set up an appointment with a surgeon right away. The Ultra sound results they had done in North Carolina didn’t really show anything, so my surgeon ordered a HIDA Scan, which would show how the bile in my gallbladder was being excreted. These results were borderline, so in order for my insurance to cover the surgery, my surgeon sent me to a gastroenterologist to rule out anything else.
My G.I. Doctor did an endoscopy (Where they send a scope down your throat to look at your stomach, and upper small intestine.) He didn’t find anything unusual, and concluded that I should have my gallbladder out. He did mention that there might be other problems, and if my symptoms persisted, I should come see him after my surgery.
So my gallbladder was set to come out at the end of December, 2011. Between Thanksgiving and Christmas, I had another horrible attack, was still having diarrhea, I was going to the bathroom a crazy amount of times each day, I was even waking up 4 to 5 times at night. Life was a mess.
Finally, it was surgery day and I got my gallbladder removed, there were no complications and everything went smoothly. I went home to recover, and started to feel better after three days. The fourth day after my surgery (Which of course, had to be New Year’s Eve!!) I woke up feeling terrible. That afternoon, I took my temperature, and I had a fever of 103. My mom being a nurse, knew that having a high fever after surgery was dangerous, so off we went to the emergency room. (For the second time, if you’ve been keeping track).
In the emergency room, they did a ton of test. Ultra scan, X-rays, and a CT scan. They also did a bunch of blood work. They couldn’t find anything, so they admitted me to the hospital, at the instructions of my surgeon. They wanted to do another HIDA scan, but the technician wouldn’t be in until the holidays were over. My surgeon said that I couldn’t go home until they figured out where the fever was coming from, or the fever stayed below 101 for 24 hours. I was in the hospital for 3 days. When they finally did the HIDA scan, it showed nothing interesting.
I went home, and everything was normal for several months. And by normal, I mean normal for me. Diarrhea, stomach aches, and weight loss. I lost twenty pounds in just a few months, and we didn’t know why. I was also having fevers. It was weird, once or twice a month, I would get a fever of around 101, and I would be totally wiped out. I was so tired, just for a few days, and then it all went away.
This is where I’ll leave you today… it’s a lot of writing. I feel bad for the lack of photos, but it’s a hard story to illustrate, haha. I’ll post the rest of the story early sometime soon!
<3 <3 <3 It all sounds far too familiar and typical of someone's struggles with autoimmune disease. I know so many people that had their gallbladders out or other organs removed when the real culprit was UC, Celiac's, Crohn's, Hashimoto's, etc. and it is so awful that this major stuff can go undetected for so long. I think we're about the same age so I know it's a really tough time to be sick, but also a great time to get an answer and get our lives back on track.
I was in denial for a long time too but I think sharing our stories is the best thing we can possibly do for ourselves and others that so desperately need answers! Go you. You are totally going to kick UC's butt. If you ever want company, I run a Facebook group for autoimmune patients on anti-inflammatory diets (some members are vegan, raw, some Paleo, some GAPS or SCD, all gluten-free) to share resources, recipes, encouragement, etc. It's a lovely group of people and we'd love to have you if you're ever inclined: http://www.facebook.com/groups/358564517562346/. 
<3 <3 <3
Thank you so much, it really means a lot to me!! I’ll definitly check out the FB group, it sounds awesome : )
I’m both sorry and glad that you’ve finally been diagnosed with something. Great recap so far. Can’t wait to read more about your journey and how you’re dealing with everything!
Thank you!
I’m so sorry! I know having a chronic disease sucks. I was diagnosed two years ago with psoriatic arthritis. It took them months to figure out what it was and I was just in constant pain. No good or fun. At least now that you know what you have, you will be more able to deal with it to live a better life!
Thanks! Yeah, it’s definitly bitter sweet. I’m glad they’ve finally figured out what it is, but that’s only half the battle!
Liz, a close friend of mine forwarded this post to me. My heart is breaking for you! I’m currently in remission after suffering with Ulcerative Colitis for nearly a decade. You can read my story here: http://vedgedout.com/why-vegan/
I would love to chat if you need someone to talk to. -Somer
Thank you so much Somer! Your story is so inspiring. I’ll definitly be shooting you and e-mail sometime soon!
Liz – so sorry to hear this! Hate to think of all of the pain you’ve been through. Please think about contacting Somer (comment above). She has the biggest heart and I think could really help you. Hugs!
Thank you so much! She sounds like she’ll be a great resource!
I am so sorry that you’ve been through such an ordeal, but glad that it sounds like your doctors have finally gotten it sorted. I hope this medicine does the trick for you! <3
Thank you!
Beine stuck in limbo with doctors that don’t know what’s going on is rough!! Thankfully you now know what needs to be done to help when you have any uncomfortableness in the tum tum!! YAY for Dwight time.
Thank you! And yes, yay for dwight time!!
So sorry to hear about your tummy troubles! I just went through something similar, although the endoscopy gave me pancreatitis and laid me up in the hospital for a week. They wanted to take my gallbladder out too, but I’m getting a second opinion. Especially after reading this.
Oh no, that sounds terrible! And yes, if there’s one thing I’ve learned from all this, never jump the gun and a second opinion never hurts!
So sorry to hear about the colitis! Thanks for all the info though…at least your well educated on the matter
Thank you!