My Ulcerative Colitis Journey

Hope and Prayers

Originally Published May 16, 2014

I really don’t know where to begin with this post. I’ve been putting it off for a the past few weeks. Why? Well, nausea for one. I haven’t been able to look at a phone screen or read much for the past few days. But the second reason is it’s uncomfortable.  Writing it down makes it all real. Makes me face it. I want to punch it in the face. I want to kill it. I hate it. But I wouldn’t let anyone else fight this battle for me. Some days I look in the mirror and have no idea where I get the strength to stand. But God gives it to me. And I know He is going to heal me. I just have to keep the faith.
Currently I am blasting ocean waves through my headphones to try and tune out the puking of the insanely sick person they roomed me with. Yep, I’m back at the hospital.  Steroid injections and fluids.  Last chance to try for remission before we go to remicade. This time they have me hooked up to an iv pole so I’m more restricted.  Oh, how I want my life back.
But nevermind. I’ll get it back.
So, the point of this was to provide and update and some Hope in Prayer. Let’s get back to that.
2 weeks ago I was admitted to the hospital for steroid injections. On Day 2 we discovered that the reason I had not been responding to treatment before was because I had a parasite! It hadn’t shown up on any test before, and we have no idea how I got it. GIARDIA.  Somewhere along the line I drank some contaminated water.
So, we did another day of iv steroids to no avail and sent me home with a flagyl prescription and pill steroids, on top of everything else. Flagyl did not react well with me. I had so much stomach acid, my whole body ached all the time, diarrhea, blood loss, weight loss, and mix in the emotions of not healing, missing work, having to stay with my mom because I couldn’t take care of myself, missing out on the celebration of our new home with my boyfriend and my doctor changing the treatment plan every time I leave the office. I am a mess.
Last Friday, my GI wanted a colonoscopy. I knew it wasn’t a good idea. I was still on the Flagyl.  My insides we’re a mess. But she insisted and I agreed and went through with it. She was only able to see about 25 cm. Nothing good.
So, she decided my only option is remicade. And we scheduled the testing that was needed to proceed and scheduled the infusion. I sent out a mass request for prayers from my family about what the right choice was and what I needed to do going forward and just asking for God to heal me.
The next morning, the hospital called and said the tb test results were indeterminate. Thing is, I never had a TB test. The doctor called it “serendipitous” and called me and said maybe we could go back to the original plan of steroids and imuran instead (anyone else seeing the roller coaster I’ve been riding!?)and we would talk more about it at my appointment on Thursday.
Thursday comes around. We go to the appointment. I’m weak. I weigh 105 lbs. She says I have a choice. Admit to hospital for steroid injections or go straight to remicade. Because the injections had not worked previously, I chose the remicade option. And we left feeling confident and went to the hospital for a chest xray,  cbc and tb test.
An hour after we went home, my doctor called me from her cell phone and said that her gut is saying I really need to be admitted for steroid injections. And her partner thinks so too. I couldn’t believe it. Another change in plans.
I spoke with my family.  And we all agreed maybe we’re supposed to give this one last shot . Maybe we need to exhaust all options. So I called her back. And the next day, today, I’m admitted.
They had to call the iv team to get me started because my veins are all shot. But I’m hooked up with fluids and steroids now. And now we wait. And we hope. And we pray. Pray for healing. Pray for understanding. Pray for Hope. I’m so emotional from the steroids I’m crying at everything from a cat food commercial to song lyrics to a kiss from my dog before I left today. I miss being happy. I miss sleeping next to my boyfriend. I miss driving my car and going to work. Feeling accomplished. Feeling strong.
But I know I’ll get back there some day. God has me in his arms. I’m not going to ask why I’m going through this. I’m just going to get through it. One teardrop, one breath, one step at a time.
I do apologize if this makes no sense and I’m all over the place. It’s just how I am right now. Thanks for listening, and for your prayers if you make them. I need them. And I will pray for you too.