The Last 12 Months in IBD

The last year has been pretty rough. And has had a lot of ups and downs.

In the last twelve months I’ve been diagnosed with Inflammatory Bowel Disease. First, it was Ulcerative Colitis and now I’ve been diagnosed with Indeterminate Colitis. I have a 50/50 chance of ever being diagnosed with Crohn’s Disease or Ulcerative Colitis. I’ve had two separate colonocopies. After my first colonoscopy I got put on a medication called Lialda. I had such a severe reaction to it, that I ended up in the hospital for 3 nights because I was so dehydrated. I also lost 8 lbs in two weeks, and it took 10L of IV fluid to get me rehydrated.

I’ve now been on five different medications to treat my IBD. I have adverse reactions to Lialda, which means I can no longer have 5-ASAs, so there goes a whole class of meds that treat IBD. I’ve been on Imuran, which gives me a rash, and now I can’t have MP-6 because it is related to Imuran. So there goes another class of meds that treat IBD. I’ve been on Prednisone and Budesonide which are both steroids and you can’t stay on forever. I was on one or the other for about 10 months. I’m now on a biologic drug called Humira which required bi-weekly injections. Which I can’t handle doing. It freaks me out.

I have had so much blood work done in the last year. I don’t even know how many times but it was way too many. I’ve also had IVs three different times. I’ve had to do a stool sample.  I’ve been terrified by what was coming out of my body. There’s days that all I want to do is cry.

I’ve been so exhausted that I didn’t know how I was going to make it through work. I’ve slept on and off for 14 hrs one day and was still exhausted.

I’ve been in so much pain that all I’ve wanted to do was scream, and scream and scream.

I believe that I’ve seen 6 different GI doctors, one at a hospital, three from the first GI practice that I was at and two more at the one I’m currently with. I now drive about three hours to see my current GI.

I’ve dealt with bouts of anger, and depression. There’s times they hit you out of nowhere. This disease can be so overwhelming at times. There’s so many possibilities with how it can affect you and your life. You don’t know how long you’ll be sick. Or how long you’ll be in remission. Or when things take a turn for the worst and you have to have surgery.

IBD makes you go beyond what you think you can. It makes you find strength when you think you don’t have any left. IBD doesn’t care that you have to work. Or that you’re a half a mile from the nearest bathroom but you have to go RIGHT FUCKING NOW. With IBD, all you can do sometimes is just live day by day.

And that’s all I can do. Is just live my life day by day. Hold onto the good days and take advantage of them as much as I can. And hold the people who support me close and just let go of the people who bring me down.

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2 thoughts on “The Last 12 Months in IBD

  1. You can get through it! I realize how lucky I am to have not had any severe reactions to medications but also not so lucky that every time I am better for months and they try to take me off of some my flare up comes back. It’s hard to live with an IBD but you will figure out what works for your own body with time! Focus on other good things and try not to add stress to the things you can’t control right now, I learned to take more time for myself, alone time weekly to do the things I enjoy, to meditate, and seek sources of happiness everyday. I love Tim with friends and family but some alone time to just do you is important because no one can completely understand what you are going through! Here’s to a better 2015 and hopefully some results and answers!

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